We Love You Freddie

2012-01-02T17:09:00.000Z

It has been some considerable time since I last posted an
entry on Fred’s blog. A friend of mine,
Katy Graham, is raising funds for CLIC by running the London marathon this year. Hopefully through people being more aware of
the great work CLIC does, it will mean that Katy can raise as much money as
possible – and spur her on to make the 26+ miles through the capital. That is some doing and good luck to her. I (and some other friends) abseiled down the children’s
hospital in Bristol although that only took a few minutes and I was aided
greatly by gravity, so no stamina or training was required, unlike a marathon.

Reading through some or all of my ‘blog should give you an
insight in to the good work that CLIC do for ordinary people, like our family,
who unexpectedly need their assistance at the drop of a hat. The ‘blog does go on a bit in places so it
may take a while to find the CLIC related information.

Fred would have been six this year in May and he would have
started school proper last year too. Time
has passed so quickly but it still seems like yesterday that Fred was with
us. His little grave in the church yard
in Chagford is regularly visited, trimmed and tidied up. In the spring the birds pick at the moss to
make their nests, although at the moment slugs and snails seem especially
prevalent in attacking the wreaths and flowers placed there. There is fox-run by the side of him, which
runs down on to the lane below. Over in
the distance you can see Castle Drogo across the valley so he has a good view
from there.

His little sister Heidi, who will be four in May, also takes
great pleasure in making sure her brothers windmills run smoothly. She started pre-school in September last year
and enjoys this very much for her 2 ½ days a week. Her learning and social skills have developed
well, even though at home she can be a real pest and somewhat domineering….. She is due to start school in September of
this year and she talks about Freddie a lot, even though she never met her
older brother, knowing who he is in the various photographs that we have around
the house, so picks she things up quietly.
She has got to an age where she has started asking more searching
questions about Fred so we will address those as they arise.

Since my last post Heidi and we have been joined by baby Wilfred
James, who was born on the 14 January 2011, weighing in at 9lb 10oz and as he
grows he bears many similarities to his late brother Fred. We chose the name
Wilf as it is a bit traditional, includes “Fred” in it and retains James as his
middle name. This relates to Rachel’s grandfather.

No doubt I will post another entry sometime soon, but as I
say, time flies all the quicker nowadays.

2009-03-20T12:07:00.002Z

Yesterday would have been Fred’s third birthday.

We took an early trip up to Chagford, with the sun being rather bright and a heavy frost on the ground. We had a chat with Revd Gearing who conducted Fred’s funeral in May 2007, just as he was opening up the church.

He’d guessed it was an anniversary as we had a number of flowers to lay on his grave. Heidi mean while was pulling “Winston Churchill” faces at him. We trundled down to see Fred which is a bit difficult as the ground is uneven and Heidi’s pram isn’t really “terrain” at all.

The birds have been pinching moss of the grave, I suppose to build their little nests this time of year.

Once tidied up we headed off to Gran and Grandfer to say Hello, before driving down to South Petherton for the day to see Fred’s godmother, Frances. A lovely day with her, and Samuel and Daisy her two children, plus Shaun appeared too. I was a student with him many years ago in Newcastle and he’s now a nurse and who visited us whilst we lived in Bristol.

God bless you Freddie.

2008-12-31T18:38:00.002Z

Over the Christmas break we visited Fred as we normally do, and I thought I'd post a photograph of his little headstone, taken on Boxing Day.

Thinking of you Freddie, on New Years Eve........ Daddy x

2008-05-13T22:47:00.003+01:00

Today was a long, but lovely day, in that Rachel gave birth to Heidi Rachel Wills, weighing in at 8lb 8 1/2 oz. Born at Torbay Hospital at 1436h she shouted quite a bit. Heidi, not Rachel (who did really well of course).

It is sad in a way as I guess this will be the last time I ever put anything significant on here, as there isn't much to say really. I have though started a new 'blog just for Heidi as she desreves it I reckon: http://heidiwills.blogspot.com

Heidi will never meet her truly wonderful big brother. I am sure they would have looked after each other. I will maintain this 'blog as I don't want the hosts to think it is dormant in the future.

I wish you were with us Freddie, I really do.

Much love, your happy but very sad Daddy xxx

2008-05-12T21:23:00.002+01:00

Today saw Rachel and I go to Torbay Hospital to see the registrar, anaesthetist and the midwife in preparation for tomorrows delivery.

We shall get there for 0800h and she is third on the list, so fingers crossed all will be well.

I'll probably do another post on this 'blog and see what happens.

Thanks

2008-05-02T16:01:00.003+01:00

Today is the anniversary of when Freddie died, a year ago in Exeter.

We took a stroll to the Zoo as soon as it opened this morning and went to his little bench by the Gorillas and Orang Utans. The sun was shining and the apes were out on the island I thought enjoying the warmth. I think actually it was because they had all been locked out of their house whilst the keepers were inside sweeping up all their muck and empty banana skins.

We tied a little yellow rose to the bench, and because we were one of the first people in there, we spent a while quietly watching the apes and listening to the birds and monkeys.

Rachel and I thought about our beloved little boy and wished so much that he could have been with us. Sadly not.

Its been a quiet day today which is nice, very similar in weather to last year.

I won't do much more on this 'blog once baby is born, though I might add things just to make sure it does not appear dormant.

God bless you Freddie. x

2008-04-18T15:54:00.001+01:00

Today Rachel and I visited Torbay Hospital to see the consultant about how baby is going to be born.

When Freddie was born he got stuck and was delivered by emergency caesarian and so at the time they suggested we would need to see if it were likely to happen again another time. After a chat with the consultant, he advised that a caesarian was probably the best option again, although this time we would do it by appointment....

So, all being well Rachel and I will head into the hospital on Tuesday 13 May and later meet a new little person. Baby may appear earlier of course (like Freddie who was nearly three weeks early) but we cannot do much about that anyway.

So hopefully all will go to plan.

2008-04-03T22:53:00.001+01:00

2008-04-03T22:52:00.000+01:00

Rachel perches on the bench

2008-04-03T22:49:00.000+01:00

2008-04-03T22:46:00.001+01:00

We had not seen the type of bench that the Zoo got for us, but it was made of sustainable materials and sourced in accordance with their conservation thinking.

It has been positioned overlooking the gorilla and orang utan islands, and faces our house which is 200 metres away. It was a lovely day and it was fairly quiet there. The bench is nice and sports a brass plaque, simply engraved “Precious Memories of Freddie Wills 19 March 2006 – 2 May 2007.”

It is a really nice quiet location that many people pass by. Whilst I was sitting on the bench Rachel noticed something rather strange. A few feet away, on the path sat a Peacock butterfly which was basking in the sun. It stayed there for a minute, enough time for me to get a close-up photograph, before fluttering off out of sight. Very strange. Those who have followed the ‘blog will have remembered the relevance of butterflies, as one appeared just after Fred died on the 2 May 2007. They have appeared in various situations since, even in the middle of winter.

As we set off back to the entrance a family came by and stopped and read the plaque. They noted that Freddie was just 13 months when he died, and went off explaining to their children, who were toddlers, what the bench was all about. Very sad in one way to hear strangers talking about our Fred in that way, but in another it was exactly why we wanted the bench.

2008-03-19T18:03:00.002Z

Today would have been Frederick's second birthday. I remember who pleased we were two years ago when Fred arrived, and going to Sainsbury's to get some things we had forgotten.

I also whizzed over to Mothercare in Torquay to get a "Baby on Board" sticker for the car as I had always wanted one of them.

Last year we were in Ward 34 celebrating as best we could but until I knew all was clear it hung over us, the worry of what was to come, if anything. The staff got Fred some stuff and we received lots of cards, which went on the notice board in his cubicle.

This year, nothing. After getting up pottering Rachel and I decided to go out for a bit. We went to Paignton seafront and parked just by the place that we took Fred to on his first day at the beach. It was so hot then we had to keep him covered in sheets and parasols so he did not get to see the sun. It was too bright. My dad and his friend George popped over to see us as they were having a drink at the Club nearby.

Today the beach was empty except for a few dog walkers and pram pushers. And some seagulls.

We then went to the Zoo for a walk about. The bench is yet to arrive and I guess it must be imminent by now.

We received several messages during the day from well wishers, as well as some from the nurses at Bristol. That was nice.

Not much else happened other than Rachel and I met Hayley in town for some lunch and we headed home.

2008-03-17T22:56:00.003Z

It is another day when we visit the midwife, over in Brixham. Today Emily came with us, as she is interested in getting into paediatric nursing or similar, so we hoped it may be of interest for her.

Rachels bloods, blood pressure and baby growth seems fine and again we heard baby's heartbeat on the doppler. The midwife gave another indication as to the baby's sex - a "train" sound if a boy and a "horse" if a girl. I am sure it is for entertainment value only.

Rachel is getting bigger now, and so I am stoking her up with soya beans, spinach, sprouts and Paignton cabbages, which she gratefully accepts (?)

Just under eight weeks to go now, and if Fred's arrival is anything to go by, it could be just over five weeks.

Yesterday we wandered the aisles of Mothercare and next week will enter the hallowed portals of Babies 'r' Us. Soon all Fred's stuff will be brought out and washed and dried. Conveniently our washing machine went to the "other side" today so that was helpful. Maybe Fred had a hand in making sure we got a new reliable one before baby arrives?

I am back in the office for just one day this week - tomorrow -and will then be off for another week using my annual leave up. A new leave-year approaches so I can take my time again with the new born.

On the 19 March, it would have been Fred's second birthday. Nearly a year ago, we celebrated on Ward 34 with a cake and presents from the staff, our relatives and others we did not know. Amazing how time and circumstance change.

Rachel and I are looking forward to meeting Fred's new brother or sister, and guess with more anniversaries approaching things will be a bit bumpy.

Not sure who reads this now, but it did its job during its time. The old site managed 110,000+ hits, and we only have 200 now. I am happy with that as we have nothing much more to say really but I enjoy updating this.

When baby is born I shall stop doing this one I think, and maybe do another on the we'un. Fred might feel a bit style-cramped I think.

2008-03-04T18:37:00.002Z

Rachel and I had another visit to the midwife on Monday 25, this being 29 weeks I think. Again no possible problems evident other than R is a little larger but only by a tiny bit.

We had a few questions and will trot off to our next appointment, armed with a few more. Heard the heartbeat once again and that sounded alright.

We only live a few yards away from Paignton Zoo and have spent many an hour in there over the years, so became members some years ago. For the price of about three admission tickets you get all year round access to the zoo and get in free to other zoos such as Bristol and Newquay. Living so close means we can pop in for just a few minutes just for a wander when the weather is nice, or use the restaurant.

When we had to close Fred's savings accounts for tax reasons, we were having to think about where that money went. We did not want it to get consumed in our currents accounts so as to pay EDF or Council Tax, so put it aside for when we knew what to do with.

We approached the Zoo and asked whether we could have a memorial bench and plaque sited in the Zoo and their initial response is that they are asked this on many occasions and only do so if that person had an affinity with the Zoo or some connection. Luckily Fred lived some yards from the Zoo and we are Members too, so that was no problem, given that Fred would have been a regular customer anyway.

So that is sorted really, a bench is to go up near the Ape House and Lemur Wood and this overlooks the Gorilla and Orang Utan islands and lake. It is only 300 metres as the crow flies from our house, so is rather apt.

It will be one of the first benches in that area and is underneath the trees too, and I guess will be a stopping point for many a picnic by those using the Zoo.

It was nice to get a bench somewhere safe and a bit homely as some of the benches around here end up in the sea or used as firewood on the beaches by the local yoblets.

Once it is in position I will post a photograph.

We also have to arrange the headstone for Fred, and this is currently with the stone mason.

It is not that long until a year has passed since Fred was last with us, although we do get odd reminders of him quite unexpectedly. You may remember that just before Fred died a Red Admiral butterfly was hanging around the garden outside Fred's room at Exeter. I saw it, and noted you tend not to see as many butterflies around like when I was a child. A few minutes after Fred died, Rachel's mum June went outside and saw the butterfly.

Since then these butterflies turn up unexpectedly and we have seen more since Fred than in a long time. One was resting in the garage at home, one was found in the curtains at Rachels mum and dads and more recently one was flying around a charity shop in December looking for a way out on a very cold day.

My mum said recently that last year at around tea time a Red Admiral kept turning up to visit the herb bed, and did so for four or five evenings. Butterflies do not last live too long.

So next time you see a butterfly think of Fred.

2008-02-04T16:40:00.001Z

It is Week 25 for Rachel and we had another visit to the ante-natal clinic in Brixham. All seems to be well in that respect and heard baby’s heart beat chugging away via the Doppler.

Took the day off today, as time can drift when waiting for an appointment at the hospital but we were in and out in fifteen minutes or so.

Rachel had a fair amount of work waiting for her at home so she headed back and I wandered in to town to get some fruit and veg, and go to the butcher.

The weather is rather crummy at the moment but it is nice to see the mornings and evenings getting lighter, so at least summer is on its way once more.

Went to the Civic Ball on Friday night, which was held at the Palace Hotel. As usual it is a great evening and the food and company excellent. The last time I went was in 2006 when Rachel was eight months pregnant with Freddie so she was not keen to go then. Again this year, late nights and alcohol are not on the menu for her, so I went with some colleagues. The four of us, Neil, Susanne and Sarah had a good night, though were probably amongst the youngest. Or they were.

No bad head in the morning either, so I must be getting sensible in my old age or more frugal at spending hotel wine prices.

Back to work tomorrow though. Rachel is behind me in the office typing yet another survey, which is good for her.

2008-01-05T10:20:00.000Z

Yesterday Rachel went for her 20 week scan at Torbay Hospital. Luckily our appointment was first thing, so we were seen five minutes earlier than planned.

The scan looked good with some clear images seen. Baby wriggled about alot and we got to see arms and legs and most of the other bits. The scan photograph was a good side profile, so that is now in Rachels handbag.

Also present was Rachel's mum, June. Following the scan we headed to the Bay View Restaurant at the hospital for their fry-up for £1.99. All quite deja vu....

2007-12-31T18:10:00.001Z

So the end of 2007 is about to arrive, and therefore Rachel and I wish everyone who we have come in to contact over the last year (and before) a very happy new year.

Hopefully 2008 will bring good things for everyone.

We are staying in tonight (as we usually do) and the curry will commence soon but we trust that those taking part in late night revelry later on will do so sensibly.....

Last year I was couped up in Cubicle 5 on Ward 34, trying to get some sleep when the three nurses came in to watch Big Ben and the crowds at midnight.

Best wishes to you all,

Tim and Rachel and Bump

2007-12-09T17:58:00.000Z

Early this morning I woke up several times as the wind was pretty fierce around here, but by 0400h is seemed totally quite again. Peering out it must have cleared for a bit as I caught a glimpse of ‘plane overhead.

Today I do the sponsored abseil down Bristol Royal Children’s Hospital where we spent so much of our time with Freddie. I am doing the abseil with three others – Charlotte and Emily Rowe and Hannah Smith. All of are from Paignton.

Neither Rachel or I could sleep so we woke early and decided to get on our way. At 0645h we left home to set off up the M5 on a well worn path back to Bristol. This is the first time we have been back and I guess many memories and other things will get in the way. I am fairly happy to return though maybe Rachel is not so keen. Either way, we have signed up to the abseil so cannot back out now. It is nice for me that she is coming.

It is dark when we leave and the storm has started again. There is heavy rain on the motorway, with a lot of surface water about causing a lot of spray. Driving is not too bad though as there is little traffic about, but on the way we pass the remains of three accidents that must have happened overnight.

It thankfully clears by the time we arrive, which is about 0900h. Once we parked the car (last time we had passes so it was easy) we trundle down St Michaels Hill. We used to take Fred down this route occasionally but it is very steep and the old flags make the pavement rather tricky with a pram on a 45° incline.

We arrive at the entrance and see the CLIC Sargent team setting up. We have a chat with one of the girls and head off to the canteen.

We do this with trepidation, as it all exactly as it was eight months ago, although then we had Fred with us of course. Same porters on the front desk. Same old staff training posters in the lobby and the animated Wallace and Gromit machines look to be out of order again.

Up in the lift to Level 5 – where Ward 34 is and where the canteen lies. The canteen has only a short queue and the same staff are at the counter. Same prices too of course.

At the head of the queue is the ward sister for W34 – Kate. She looks rather surprised to see us finding a table and chair and so we have a quick hug and chat. She is off to a meeting… same old… Great to see her though. We tell her that Rachel is expecting so that is another good thing, and so she heads off whilst we chat to the canteen staff.

They seem pleased to see us again and remark that I must have eaten many breakfasts in my time there. Rachel, wisely, used to keep the fry ups to a reasonable amount per week.

It still tastes the same so that is comforting. They said they remembered coming in to Freddie’s cubicle on Halloween doing Trick or Treat on the kids. They were wearing their chef’s whites which are actually marked black and white like a Friesian cow. Of course Fred had his on too at time and I thought it was nice for them to remember that, so long long ago.

As the time of the abseil came we went back down to the foyer and met first with Hannah and her parents and sister. It was quite sheltered in that part of the hospital but to look up and see the edifice we looked at each day in a different light was a bit strange for me.

Next to arrive was Charlotte and Emily, with Dawn and Paul, followed by my mum and dad and brother. Wayne, Adam and Tim appeared immediately afterwards so the crowd was set.

At 1015h we went of offload our sponsorship forms and monies in the CLIC gazebo and to register. Once done we were kitted out with the harness and with all dangly bits removed from our clothing we had a quick briefing.

Once strapped into our webbing pants Charlotte decided she really needed the loo, although this was not to happen for a long while much to her discomfort. Even the instructor changed the subject so as to avoid unbuckling her again.

We went up in the lift and emerged on to Level 7 where the Bone Marrow Transplant ward is. We spent just over a month on that ward, and made the journey up the service stairs to the flat roof a little sombre for me.

At the top is a glazed “watch tower” type structure and we watched the other abseilers prepare to go over the top. This was not necessarily a good idea, but gave us a chuckle at their facial expressions before we realised we would be there in a few minutes.

The call came for Charlotte and I to come out onto the flat roof and so we did, where two other instructors waited. It was fairly blustery up there and it had started to spit with rain a little. It was going to be a long day for them as there were 104 scheduled to do this and nearly all will be inexperienced I guess.

There is a low parapet wall of about 18” where you sit on, with your back to the drop whilst they clip you in and run through the routine once again. It all sounds rather simple at the time – too simple.

Then its up on your feet and stand upright on the parapet wall. I am dreadful at heights really, but I tried to think that if it were only a 10 foot drop I should still feel calm.

Lean back, soles on the coping stone, and gradually I am at 10°, then 20°, then 45° I reckon. The tricky bit is the first step off the top so you are then on a flat wall. Whoever laid the bricks did not do a good job as the joints are quite wonky.

Once done I hung around for a few seconds whilst Charlotte came over the edge, and we bumped our way (fairly gracefully) down. As I did so I could recognise the colour of each floor level which was helpful, if not a little sad.
A bit of chaotic leg waving near the bottom and back down to dry land.

It was great to see mum and dad and Rachel there and so I quickly de-harnessed myself to enjoy the occasion a bit more now. Shortly afterwards Hannah appeared in to view, and then settled herself into position on the wall. A bit of a wait and Emily appeared at the edge and came down alongside her.

Again they came down and one point I thought they were racing each other.
Once all back on the ground it was a great feeling and that we had managed to raise somewhere in the region of £1500.00 for CLIC. Bargain.

We got our t-shirts and champagne as we had hit the fund raising targets and headed off into the foyer to disperse.

Rachel and I then went up to W34 where we met Kate, Jamie, Helen and Rachel who were working. It was nice to speak with them. A few new faces of staff too.

The ward looked to be full as usual and the familiar noises came back to us. The crying children; someone having an NG tube poked up their nose and the general “grotty feeling” sounds from the patients. We caught a glimpse of a few parents in their rooms, incarcerated like we were as some appeared to be barrier nursed because of infection.

This time we were looking in and they looked out, their lives on hold I suspect – wondering who we were and what all the jollity and noise was about.

The weather had cleared on the way back and so the journey was more relaxed than the one a few hours earlier. We got home and decided to have a spot of late lunch in the zoo which was good. It was quite with only a few cars, and only us at one stage in the restaurant.

Time for a bath now I think, as my arms are aching a bit.

2007-11-25T19:46:00.000Z

Since my last ‘blog I have tinkered with the site. At the moment I think about two people in the world know of its existence, which is at odds to my original one which received 110,000 page views during the ten months of postings.

Most of it is in place, with the exception of photographs. Hopefully they will be on soon.

What has happened since the 8 July, when I did my last proper posting?

The old site was temporarily disabled by the company that hosted the site, with promises that it would be “live” again soon. That was four months ago so I sadly have given up with the idea it will be in use again. The text is still available but they have not responded to my last couple of email.

I am back to work now full time and there have been a few changes there. We have gone from two enforcement officers to four so that was good. I did not get the senior post as I probably said, but that no longer matters.

It is good in a way to get back to some normality and a routine.

Rachel is self employed still, and decided not to go back to working in an office. She receives digital dictation via broadband, mainly specialising in surveyors reports, and so this means she can be flexible with hours of work to some extent.

We have not yet put the house on the market though we have finalised the web site we did for the house. Need to update things on that though.

Our news is that Rachel is expecting, with the baby due 18 May 2008. For the last few weeks she has been feeling really rotten and things have not been so good for her. It seems to be easing a bit now and hopefully she has turned the corner in some respects.

People have been offering all sorts of advice as to whether it is a boy or a girl so we will have to wait and see. I do not think we will find out the sex beforehand though.

Rachel is still doing her woodcarving and is still producing house signs to order, as well as doing more recreational work for herself. I have included her website in the Links section so take a look.

I am still pottering in the kitchen and have got myself into trouble recently with the various odours that eminate from there. As Rachel is feeling a bit delicate at times my frying of liver does not help, and nor does the roasting of pigeon and partridge. My idea of getting a stew going in the slow cooker did not go down well either, as obviously the cooking smells developed throughout the day, invading every nook and cranny in the house.

Rachel is today up at her mum and dads, up on the Moor, and will be out amongst the fields hopefully getting some fresh air. Her mum is coming down to stay for a few days this week which is nice.

Last nice I went with my friend Steve to Plymouth Pavilions to see “From the Jam.” This is a “new” band made from two of the original members of The Jam who split up years ago. I saw the Jam a few times in the past and were my favourite and have remained so to date, and to see them almost again as they were was great. The price of t-shirts have gone up though since I last bought one.

I have still have a collection of t-shirts from the 80’s although they no longer fit me strangely. At least the other people who came along last night have hung on to their old clothes, with a few mouldy parkas in the crowd.

Of course, a bite to eat in the Wetherspoons opposite meant that I maintained the tradition of eating the way we did in Bristol.

My pasta should be al dente in a moment so I shall try and post this…..

2007-11-12T18:51:00.000Z

Many of you will know that when Freddie was diagnosed with acute lymphoblastic leukaemia on July 8 2006 I started to keep a daily 'blog so that friends, relatives and colleagues could follow our progress whilst we lived in Bristol during Freddie's treatment.

I continued the 'blog until exactly a year after he was admitted to the Bristol Royal Hospital for Children where his first two weeks were in the Paediatric Intensive Care Unit (PICU).

The 'blog was called "Get Well Freddie" then although changed to "We Love You Freddie" on the 13 April 2007 after we were told that the leukaemia had returned aggressively, and that he only had a few weeks to live.

After he passed away I made a few more entries, until the old 'blog site shut down for "maintenance." The suggestion was that the 'blog site would come back again but as four months have passed I decided to recreate the 'blog after requests from the many followers around the world.

The etxt is the same as before (just cut and pasted from my archive) and the photographs are similar. I am getting to grips with this 'blog site so it may take a while for me to find my way around. I have tried to make it look familiar to those who followed the 'blog first time around.

If you subscribe you will get an alert of some sorts letting you know I have posted another blog. If you have any comments then please let me know.

2007-07-08T18:47:00.000+01:00

Sunday July 8 2007Sun, 07/08/2007 - 18:22 — endc011
I thought that I would do another ‘blog as it is the anniversary of when we took Frederick to the doctors, which resulted in him being admitted to A and E at Torbay Hospital.

The week before saw me on leave for the week and so we did various things. Obviously this week has various minor and major milestones along the way.

When I left work last year I sorted my desk and left notes for colleagues should anything arise whilst I was away for the week. Normally I would spend a huge time writing notes, but this time thought I am only away for a week, so did not do my normal scribblings and left at around 1600h on the Friday. Previously I would have still been there at 1900h being poked at by the cleaners who wanted to close the office up.

Monday a year ago I met up with my friend Amanda (who was on maternity leave) and her new born son James, who is now my godson. The weather was really hot and we went to the beach and had a wander around. I suppose Fred was quite quiet looking back, but I cannot really remember now, and so much water has passed under the bridge so to speak.

Wednesday saw Rachel and I go to Totnes for the day and see Rachel’s old employer, and to show Fred off. It was raining heavily and Fred was entombed in his plastic rain cover, all misted up but did not complain one bit. I remember peering in at him, wiping the rain drops away and found fidgeting with his hands and minding his own business, all quite happily.

Thursday saw Fred go off his food, and him be sick for the first time. It was that morning we noticed the small kidney bean shaped mark on his back for the first time which started to get us concerned. Rachel was changing him at the time in the bathroom, and called out to me whilst I lay in bed, thinking about what we were going to do that day. I figured it was a mark from Fred lying on a dummy in his moses basket, but was mindful of meningitis. I did not disappear when pressed with my finger, and the coincidence with the missing dummy reassured me a bit but not Rachel thankfully.

Babies are sick all the time we thought, but again we felt something was up. The doctor that Thursday examined Fred on the couch and suggested paracetamol and to keep an eye on him which we did, but both of us quietly thought something might be up. Being first time parents you expect to panic about some things silly, but I get the impression we had real doubts somewhere.

Fred spent his first night in his cot in his own room though Rachel slept in there for some reason, just in case he was sick during the night.

Friday saw Fred be sick again, and we took him to the doctors again, and she thoroughly examined him, referring him to A and E just for some tests. Whilst waiting in the waiting room, I bumped into Nigel (the Headteacher of my old primary school) and we had a quick chat. I later said goodbye as we trotted off to our appointment at Torbay carrying Fred in his car seat, or egg basket as we always called it.

We sat in A and E for a few minutes and were seen immediately and I had got some food from the vending machine and munched on Mini Cheddars and some coke. Little did I know that this was to be the staple diet for some months to come.

We were told beforehand that it might take some time so we took some overnight clothes just in case. Rachel agreed to stay overnight and I was getting ready to head home at midnight and come back early the following morning.

I have covered the next few hours in the ‘blog a few times, but the news left us devastated and in a state of confusion and shock. Whilst Fred was being prepared to go to Bristol Rachel ‘phoned my brother at 0200h on the Saturday 8 July 2006, to tell him the news. He then told my parents.

Rachel also rang her dad Colin at the same time. My brother came over to the hospital and took us back to get our belongings for us to go to Bristol.

During the morning of the 8 July whilst Fred was being settled in to Intensive Care, Rach rang many of our friends as I could not do it. I just could not explain the news and explain that beloved happy Fred was dangerously ill now. Our friends children, Adam and Tim’s birthday is the 8 July and I knew the family would be getting ready for a barbecue that day, or something similar so I contacted them the following day.

Today at 0950h we remembered we had our first breakfast a year ago in the canteen at the hospital. It was the first of many in there.

Frances (Fred’s godmother) came up that day from South Petherton and we had a lunch in the café in Debenhams talking about what had happened and it all seems so long ago now - like it never happened. We had minestrone soup I recall though we did not actually talk a great deal.

We stayed for two days in a small room on Level 6, sleeping on bunks, though we never slept properly of course. I cannot remember really what must have been going through our heads then, but over the next ten months we lived in that hospital.

I started to get text messages as word spread which was helpful, but made you think about home, and how far away we were from it, not in distance but normality. We thought we might be there for a few weeks maybe months until we transferred back to Devon, with a cured son.

BBC1 have been showing a documentary titled “Children Living With Cancer” which ran for five weeks, ending I think last Tuesday. It followed the lives of nine children diagnosed with cancer, mainly leukaemia all over the country.

The first saw a visit to Bristol Royal Hospital for Children. We saw a few of the doctors who treated Fred and saw our room in BMT in the background occupied by another patient this time. It was a good programme that made compelling viewing though we wondered whether it was a wise thing to watch.

The strange thing was that when I watched it was like I was looking in on another world, and only at times did I realise that it was US that we were watching, though with different people. The editing of the program meant it was all very simplified but gave us an insight as to what other people might think we went through. It did not really scratch the surface and could have run for weeks and weeks, and you still would not have appreciated the gruelling and draining experience it actually is.

When Fred used to go to have an x-ray of some kind, one of use would stay to hold him whilst the x-ray was taken. In most cases it would be on Level 3 and you would wait your turn to go in to the various rooms. Once in there, Fred would be undressed and placed on the plate. He needed to be kept still and so that meant you had to be next to him, usually holding his arms and shoulders whilst keeping away from the device that does the business. Being exposed to x-ray when you do not need it means you wear a plastic lead-lined tabard. The radiographer always seemed to purposely choose one that was too tight for me, and was a bit too “clingy” or figure hugging for my liking.

The material was like a glitter filled gel outer, normally in a bright blue and I ended up looking like Matt Lucas from Little Britain on more than one occasion. I am sure it was done on purpose.

A year has passed now since that day and I am not sure whether it actually feels like a year or not. In some ways it has, in other ways it seems like a few weeks all jumbled up. I think it is because we were transported to another world for those months, and that time here stood still.

I have started back to work now which helps greatly but doing what I do, it feels like my head will explode sometimes. Returning to a vast backlog of the years work does nothing to inspire, and is very much like someone giving me several of those lead-lined tabards to wear all in one go. Just like swimming through treacle it feels.

Rachel has got her woodcarving website up and running which she had planned many months ago, whilst on maternity leave and is progressing with her digital dictation typing services, from home.

We went to see Fred the other day and his little plot is looking tidy, now the grass has been cut and the holly bush trimmed a bit. It was raining slightly when I went, but the birds were still in full song up above in the branches.

I have included some new links to other websites on my home page. They are relating to Fred, but are news stories about him. Sadly some of the links I had in my folder no longer work for some reason. I have a vast array of cuttings in the filing cabinet which I shall organise properly one day.

I have referred to most previously in the past but some are new. His obituaries are not available on line which is a shame.

I shall no doubt post another ‘blog some time. Out of curiosity I look to see how many page views this site has had since I started in July 2006 - a total of 110,897....

Monday 28 MaySun, 06/03/2007 - 04:24 — endc011
Another good breakfast at the Star Inn saw a dry and sunny day.

We headed to Porthreath where we have visited a few times before. We popped in to the government surplus style warehouse where we spied the infamous “watch makers eye glasses” once again. Last time we were here (2004) Rachel and I rooted through them, with R putting several up to her eyes to test them. The planned use for her was to check her woodcarving chisels after sharpening them, and for me to use at work looking at aerial photographs of buildings. Just within a few hours she had developed conjunctivitis on a big scale, in both eyes and was not happy.

It progressed over a few days causing no end of inconvenience and trouble for her. Miraculously I remained unscathed for some reason, though today she avoided them like the plague whilst in the warehouse, despite me waving them at her.

We moved on to St Agnes where the village was shut to traffic for the day, as it was their “Victorian Day” and the streets bustled with stalls and to the noise of the barrel organs. It was warm and we pottered (as we do nowadays) and visited the little chapel in the town. I lit a candle for Fred whilst in there.

After that we drove leisurely to Tintagel, which was heaving with holidaymakers. The pub where we were staying was the Cornishman Inn, on the main street, and boasts a large number of rooms. We parked up and booked in, and were taken up to our room.

Another nice little place, it was in an annexe at the rear by the beer garden. A rather temperamental shower was in place but this did not bother us.

It was quite hot and bright as we wandered around the little town. Tintagel is reputedly the home of King Arthur, and so the shops nearly all sell Arthurian objects d’art by the cartload. It is a shame that there is very little local produce here, and even more that all the stock is the same in each shop.

I even saw a £3000 resin King Arthur’s Chess table that was the size of an armchair, with “free UK delivery”.

In all of these places you look around and if the holidaymakers are not there, they would be deserted. Most of the cottages are holiday homes, probably nearly all with the locals being forced out gradually. Outside the few little cottages that were occupied - which once housed local fishermen or tin workers - are new BMW’s, Range Rovers and Jaguars.

I had my pint in the beer garden whilst I did a bit of woodcarving. The bits of my chippings were blowing about and left a bit of a mess when I left.

I had the garlic crevettes tonight, which were really nice to start with. Enough of them and lots of garlic and basil. No quizzes here tonight just a few holidaymakers like us enjoying their grub.

The following day saw us head back home after a rather nice break.

A heartfelt thank you must go to all of the people who have supported us in some way over the months; the friends, colleagues, relatives and other people we did not even know to start. All of the messages that we have received have meant a lot to us and we will not have been able to say thank you all personally. In any event they each made us feel very grateful from those that took the time to make contact. Whether you sent one or many it really helped us along.

The early days saw a lot of people contacting us, which made me start the ‘blog. The first two weeks meant I was searching for a quick way to do a website or something, and stumbled across this ‘blog site which proved very easy to update. I tried a regular letter to work a couple of times but was a bit cumbersome and did not get to everyone.

Once we got going with the ‘blog the comments and words left by the ‘bloggers encouraged us even more and it started a little community. I hear that many people used to log on just before they started work, and others just before they went to bed at night. Others used to wonder whom the “strangers” were and wanted to know more about them. Some I did not know and eventually made contact with most of them.

I still keep in contact with them if I have their email address and that is another nice side to the ‘blog.

There are a few of you in other parts of the world that have contributed and that meant a lot to us as well. I know a couple but there were some we have never met.

Fred’s life inspired many people to help in some way. A fair amount of money was raised for CLIC Sargent, the charity that helps families and children with cancer and leukaemia.

I had heard of CLIC before but knew nothing about it, and had no real reason to donate in the past. Once we arrived at Bristol they helped us with a lot of practical advice. Things you may not want to think about – benefits, grants, employment rights etc that all became necessary to know in the months that followed.

Some of the forms we needed to fill in are complicated and they helped us complete them properly, to enable us to receive benefits we were entitled to. Our first thoughts were to not claim, as we could get by. Soon you realise that the financial help is really a godsend, and that you have been paying taxes all your life and now is the time to make use of that reserve.

There were various fundraising events that grew gradually. My office started a book sale/breakfast/lunch event, which did well. Another colleague harvested Aloe Vera babies from her plants and sold them to colleagues. She managed to raise over £160.00 for that.

A local DJ, whom I do not know, read about Fred when there was an appeal for bone marrow donors to come forward. They had an all night music session on one of the pubs to raise money for the Anthony Nolan Trust and that made new in the local papers.

Colleagues held a football match in honour of Fred to raise more money. My dad and brother visited the pitch that evening to say “thank you” before the heavens opened and all got drenched.

Rachel and her mum organised two coffee mornings in aid of CLIC Sargent, one in December and one a few days ago. They tend to last two hours each time but raised a staggering £3087.00 between them.

At Fred’s funeral there was a collection and we asked that instead of flowers people donate money to CLIC Sargent instead. I rang the funeral director recently and enquired about the amount collected and he said that it was significant. He reckoned it was one of the largest they had seen for some years. An average for an adult could be around £300 or so, depending on many circumstances. Fred managed to raise nearly £1700 after his death. It is the generosity of everyone who really made us feel that Fred was an influence on many people.

In total he has managed to raise over £7500 to date, going to CLIC Sargent, Ward 34, and the Bone Marrow Transplant Ward. For a little person that ain’t bad.

As time moves on we are motivated to raise more money for CLIC Sargent. CLIC Sargent are doing a sponsored abseil down the Bristol Royal Hospital for Children’s building in December and I have volunteered to do that along with others, forming a team of four provisionally. Emily, Charlotte and Hannah could be there along with crusty old me. They are all less than half my age but I could be lowered in my bath chair if necessary. I hate heights and regularly get the wobbles at work when working at heights. Hopefully we can raise a few sponsors to make force us to lower ourselves over the edge of that building – our home for nearly ten months.

I have had a reluctance to donate to charity for many years, having first hand experience of how some charities spend their cash. To hear arguments as to how thick the 80/20 wool carpet will be at £40 per square metre, in their new office, has a lasting affect.

However, we have tried wherever possible to get the money to the local manager, who has a limited, or non-existent budget to create a “wish list” to enable them to provide a service that is appreciated by parents and children suffering from this horrible disease.

And so the ‘blog as we know it comes to a close now. It has been part of my life, and yours for nearly a year now and there is not much more to write. Each day I have written as much as I can tell you about what has happened. I have left out a lot of the painful details during those months, but you have got the gist.

I see that to date there have been over 106,000 views of the ‘blog since I started, an average of 323.2 views per day

I shall pop up occasionally in the future I think to post something worthy, so watch this space. I still have a few things to say though. If you wish to make a comment at this time about the ‘blog then please feel free to do so.

I post this ‘blog on the 2 June 2007, reflecting on our sons very short life. We visited him today and I took a couple of photographs of the view he has, looking toward Drewsteignton and the national Trust’s “Castle Drogo.” I shall put them on shortly.

A month ago Fred died on this day and nothing on this earth can allow me to pick him up one more time, to bathe him, to change him, to smell him, to cuddle him and to give him the big kisses I used to. I miss his perfectly soft and smooth “jowly” chops to nibble at as I once did. He is gone forever now and I miss him dreadfully….

God Bless You Freddie XXX

Sunday 27 MayFri, 06/01/2007 - 01:27 — endc011
We awoke at the Rashleigh Arms, Charlestown and headed down for a great fried breakfast and several coffees, followed by toast. We have not eaten like this for a while and hopefully will help us unwind a bit. Usually we had to get back to Fred or have an appointment to meet.

The weather is bright and blustery but soon ends up as heavy rain, as we drive out of the village.

I wanted to go to see Chysauster (an ancient settlement nearby) and the satnav gets us there, but by then it is torrential rain. It is a ¼ mile walk to the primitive settlement and we decide we shall come another time. The last time we were her I wanted to visit but we did not for various reasons. Next time - when it is not raining.

We drive into St Ives and head toward the Tate Modern which we have passed by often but have not visited before. It is described as an “architectural” masterpiece although has a plastic marquee stuck to the top of it that was in danger of flying off when I had a peep inside. It is plonked on the flat roof and I did wonder whether planning permission had been sought for it.

With the rain coming down as it is, the place is full of dripping people. And kids because it is half term. The exhibits are OK and I enjoy just a few, but we are soon out and wandering around the town. The breakfast is still doing its job, but we are a bit peckish so enjoy a bag of chips by the harbour wall. There are starlings that sit at our feet, waiting for something to fall for them. They only receive a few crumbs of salt in the end.

We continue to mooch around and enjoy ourselves as best we can in the circumstances. Things are still very difficult and we keep seeing situations we have been in with Fred when he was alive, or more painfully little things we know that we will never experience now with him. Again we have to get used to that, though each day seems to bring new memories.

Our destination tonight is St Erth, not far from Hayle and it is raining when we get there of course.

This is more of a local’s pub at first sight, and we wonder what we will find as for the accommodation. We are shown to the room, which is in the rear courtyard. It is called “The Hayloft” as it is a first storey room, with exposed timber beams accessed by steep steps, through a little door. Inside is a simple stone walled room, whitewashed, with two leather armchairs and a double and single bed. The roomy ensuite WC and shower all make it feel really nice, and different to the previous accommodation.

It is genuinely rustic in that the ivy at high level by the window is not in a hidden pot, but actually coming in from outside. It trails rather neatly down the wall into the room and looks rather quaint.

I pop down to the bar for a pint and a read of the paper, whilst Rachel watches television and dozes, and I check out the menu.

We later come down to the bar and find the locals who were here when we arrived and are still at the bar, getting raucous. We sit down and I enjoy a “local” steak and Rachel goes for the ham, egg and chips. All simple food but wonderfully cooked and presented, just as “inn food” should be I think…

We have a chat with the landlord and he asks if we would like to join the quiz that is happening shortly in the bar. We reluctantly agree as it takes two hours or so apparently, and when we finished our meal, we sit at the bar. More Doom Bar for me, and Rachel tucks into Guinness.

By then we are getting befuddled with drink and we enjoy answering the 60 questions on a range of topics. We know ¾ of the answers and debate the dubious ones. Changing our answers at the last minute means we each had some answers changed from right to wrong, but we do not care.

We do fairly well, but others are better and there is some dispute into the highest score; by a single person who I suspect has had too much to drink. The landlord dismisses their alleged claim without fuss, but the matter is resolved eventually by the £30.00 prize being stuffed into the RNLI lifeboat collecting tin on the bar. The remainder of the proceeds go to the Christmas lights for the little town.

The draw commences and my ticket comes out first. By then the locals, whom I had spied much earlier in the evening, are completely pie-eyed and bang their pots on the bar in excitement, when we are introduced as “The Hayloft!!!” visitors. I am not sure what the entertainment is for them, but they are enjoying themselves enormously, as are we. There was one prominent girl at the bar who was managing to consume packet after packet of pork scratchings without any apparent ill effects, other than the quite painful looking belches she kept stifling.

I am offered the chance to pick another ticket, which I do and return to my barstool. I wonder what Rachel is jiggling about for as I walk back, and realise we have won again. Pots bang even louder as I invite them to re-draw, and I clutch the bottle of red wine I won, keeping in the background as the melee continues around us.

The bed is marvellously doughy and soft with just the right bedding, allowing a good nights sleep whilst the wind howls outside.

I did not get into Bramble Ward, Exeter until early evening, and Rachel was in the room, with Fred and a nurse, Hannah.

Once I guessed all was well, and Rachel was happy with our new surroundings I did relax a little. The first thing to hit me was things looked a bit “older” than at Bristol. The room was a funny shape and there was no fold down bed, but a freestanding metal-framed bed that you had to manoeuvre out when you wanted it stood in the corner. A rather tired and worn looking armchair that converted into a bed blocked the toilet door, as it was the only place for it to go. It remained there for our stay, and visitors struggled to squeeze past it.

All these things un-nerved me a bit, and I wondered whether we had made a mistake somehow in transferring Fred to here. Those fears soon evaporated.

Dr Andrew McNinch came in to see us late evening, and he pulled up a few chairs. This was to become a regular ritual; in Bristol it meant that “bad news” was imminent, or had just been delivered to us. Now it was a comfort in a way, and Andrew spent along time just looking at Fred, and Fred looking back at him dozily.

He asked lots of questions about him, and reviewed the notes Bristol had given him.

We had a talk and I suspect he was careful to try and find out what we had been told so he did not put his foot in it. Once he realised we knew most of what we needed to know he set about asking us what would WE like for Fred, and was at pains to explain that it was our input he really valued and that we were very much of a team now.

It was difficult at first, and we just wanted to be led I expect, but warmed to his quiet and pensive nature immediately…

However over the days the topics became more detailed, and soon he would mention words like “Fred’s death…” and “when Fred does die…”. The first few times were absolutely awful to hear, but were necessary, and soon we had the stomach to say those words ourselves as well without our voices cracking…

The main difference I saw between Bristol and Exeter was that he was here solely for palliative care now, and that was most important to us all.

We all agreed that the thing we feared most was pain for Fred, and he reassured us that pain relief would be absolutely no problem at all for him. Any doses could be given to Fred, and we would dictate when and how often his pain relief was to be given if necessary.

In Bristol this did not seem to happen and we always seemed to be a bit below controlling his pain there. We knew nothing else and I assumed that pain relief might interfere with the other drugs he was getting, and he was getting the maximum he required. I do not think this was actually the case for Fred in Bristol, and whilst we think about occasionally now, it is no longer relevant although it does worry us a bit.

However, Exeter needed to be able to assess what pain relief he needed, as to give too much would knock him out, and Andrew wanted us to enjoy Fred without compromising his comfort. The morphine was administered by syringe driver as a background dose and we were able to give Fred a bolus of morphine whenever we felt he needed it, by pressing the button. This started at a little amount with a 30 minute lock-out and went up to a much larger amount with a 10 minute lock-out time. In the end we got the balance right for our Fred.

After 24 hours they reviewed the amount given as a background and how much we had given. It was not a complex formula to see that the more bolus’ we gave him, it suggested the pain relief was not quite enough, so the background was increased accordingly. This worked out well, and other drugs were given to him, so he ended up quite comfortable.

This meant we had Fred bounce back to a normal little boy for a few days and we enjoyed him as best we could. Again the regular chats continued, and he was reviewed every few hours with them tweaking his pain relief accordingly. They kept asking us if we were happy with the amounts. Andrew would even sit down with his scribbled calculations to show us how he had arrived at a new dose, and enquired whether we were happy with them. That I thought was a lovely touch, and reassured us that he was now in the best hands.

Fred received a string of visitors and in one day they were almost queuing, which was tiring but very heartening for us. He also loved the attention.

Grandparents and godparents managed to see Fred on form and time passed by quite quickly.

Having the door to the garden was another special touch for us, and enabled us to go out in the warm sun to make a ‘phone call, or just sit and relax for a few minutes.

On the day he died, Michelle his consultant visited us from Bristol, together with Jamie who was one of the nurses. It was a strange atmosphere and feeling when they arrived, and we did not really feel like a giving them a big welcome, maybe because in the circumstances it was a surreal encounter. I was glad they came.

That afternoon I went into the garden to make a telephone call and saw a Red Admiral butterfly for the first time in years floating around near the bushes which were heavy with flower. I looked at it for a few seconds and then moved on.

Just as they left, Fred obviously gave subtle signs that he did not have long to go, as the staff suggested Rachel might like to hold him. He was given a cuddle and his breathing had changed by now, though I did still had realised the significance of all this. After a few minutes I too realised by looking at Rachel that he was slipping away, and that is when we both cried our hearts out.

Fred looked very peaceful there and was just like he was when new born. All that happiness had gone now and we were preparing ourselves for every parent’s worst fears.

The two chaplains came in and said some prayers and by then we, or I, had calmed a lot by then and felt some relief that Fred was going in some ways. I mean that we had feared all sorts of complications for him and here was us, very sleepy and happy in his mum’s arms. He was not uncomfortable, or sad, or distressed only us.

He died at 1745h.

The staff explained what needed to be done and we were never rushed, but I suppose, as we were expecting it we said our goodbyes to him as he lay on the bed. I caught a glimpse of him as I looked back as the door closed and he lay there like he always did, relaxed and his head looking to the right.

June, Rachel’s mum was with us at the time Fred died and she went into the garden for a few minutes after he had died, with Rachel giving him and a cuddle and getting ready for his last little warm bath. She saw a Red Admiral Butterfly in the garden and it flew off. This was mentioned at the funeral, and I think it must have been the same one I saw an hour or so earlier in the same spot.

The following day was Friday and we needed to collect his Death Certificate, and we met Andrew. He spoke with us at length and we really appreciated all of the care we received at Exeter. It was a hot and sunny day and we left the hospital with his pram and a few of his belongings to go and register his death with the Registrar.

We went on that afternoon to arrange Fred’s funeral with Coombes and Sons, a few miles from where he was to be buried.

As we had discussed some of the funeral arrangements before he died, it meant we did not have to try and understand each other’s wishes at a particularly difficult time. We both wanted the same so thankfully those tasks could be done with a fairly clear mind. We chose a willow casket as we felt it suited our little boy and were not disappointed when we first saw it at 1340h on the day.

The arrangements went as well as we could have wanted.

His funeral was just as we planned and I think we all did him proud, as one mourner said to me afterwards.

We cannot thank everyone enough, and I hope those that dealt with us and helped us know that. I am sure we got the message through to them all. The doctors, nurses, support staff, parents and of course children all contributed in some way to us enjoying our son in the most difficult of circumstances.

Saturday 26 MayWed, 05/30/2007 - 04:09 — endc011
We have decided eventually to go away for a few days, after sorting out most things here. We normally prefer self-catering cottages as it is easier to travel about and we are not tied to anyone then. However, we reckon on doing the B and B thing this time. The first time we did B and B was only a few years ago when I took Rachel to the Great British Cheese Festival at Blenheim Palace, and we enjoyed the place where we stayed.

I am not talking the traditional boarding house thing, but going to pubs and staying at an inn, as bona fide weary travellers.

As a child, my dad used to tell me that all the people we saw walking aimlessly around the town here (sunny tourist destination Torbay) were those who were staying in guests houses. He explained they were all forced out of their accommodation at 1000h in the morning and were not allowed back in until 1700h, whatever the weather. They were most evident during heavy rain and I suppose that is why they looked so miserable, which is why I have never ever stayed in one. I am sure they are great and fill a niche market, but I could not do with one, and remember his words.

We spent ages looking on the internet, sifting out the wheat from the chaff. Whilst both Rachel and I love cooking from scratch ourselves we fear the “gastro pub” that dominates the market now. They are disguised in many ways but all we want is traditional simple stuff for a fair price, with ideally locally sourced produce.

The internet is good in that you can see through the traditional name and rural location, without actually visiting the place. Contemporary graphics for a 16th century listed building is an immediate warning sign, as are photographs of the dining area showing several white linen clothed tables on a light wood strip floor, with a lot of cutlery and polished glasses evident. A sample menu on the site will reveal something like “Slow-poached Cornish sea bass with Thai purée, stir-fried shitake mushrooms, mange tout and fresh noodles with a lemon grass foam” all for an amazing price (literally) and cooked by someone who operates the microwave. Having a vast range of meals on the menu also sets the alarm bells ringing. The atmosphere of the pub went out with the rest of the original interior during the last refurbishment I suspect. It is a shame so many historic inns and their names are being lost to so called progress.

Luckily we end up choosing three places around Cornwall that are ideal and are a perfect balance of hospitality, and good value, being what an inn should be. It did take quite a bit of research but all met our expectations, and in fact exceeded them. Each of them were different from each other, but that’s what made the few days away enjoyable.

We set out on Saturday morning heading west down to Cornwall with Rachel at the wheel and whilst passing Pentewan Sands Holiday Park, we popped in to see a group of 20 or so friends who are encamped there in their caravans. I have been toying with idea of getting a caravan and have even purchased the occasional “Practical Caravan” magazine, but Rachel is still not keen after the fateful “trailer tent” incident a few years ago, in the New Forest.

We get there but were not warned that you need a swipe card to get in, so we end up being stuck at the head of a growing queue behind us waiting for the barrier to rise. I shouted at Rachel to move forward closer to the barrier, thus hopefully making it rise. We were almost touching the thing with the bonnet of the car when I saw the swipe card box by the window. The barrier of course remained defiant until a member of staff came out to deal with the blockage we were causing. By then I was out of the car attempting to shoo people back so that we could turn around.

We eventually met up with our friends, who had five or so touring caravans in an enclave so we settled down on the chairs in the awning. It was getting colder I thought, though I was dressed for summer, but it was good to have a chat and a cup of tea, plus some delicious home made Bara Brith cake. We have not seen some of them for over a year now.

It was cold and blustery at the exposed beach-side site but after an hour had to move on to get to our next destination, the Eden Project. As we departed we could not help looking back thinking how everyone on the site were huddled like snipes in their awnings and deckchairs, as the wind began to pick up.

We arrived at our first nights accommodation – The Rashleigh Arms, Charlestown – and it looked good from the outside. Our room was really nice and I had a pint in the garden before going in to the restaurant area for food. Excellent food in the evening rounded off a really nice first day, staying in a lovely pub with attentive staff. Well worth a visit if you are touring the area, and the little town is a must-see if you can. Take a look at: www.smallandfriendly.co.uk

I had to have the mussels to start of course, which were excellent although I did not have my little silver mussel picker with me sadly. I introduced this little hinged device to Rachel K on W34 in our last few days there, and she realised that she has always wanted one, even if she did not know they existed until then, being a (moules) aficionado too.

St Austell’s Doom Bar (or was it Tribute?) ale went down very well indeed and made me sleepy come the end of the evening and we wobbled off upstairs.

That night, the wind got up really strong and the following morning I received a text to say that some of our friend’s tents had blown down, as had their new gazebo. I did recall chuckling quietly at about 0100h during the storm wondering if all was well as I enjoyed my deep slumber. Needless to say my yearnings for a caravan mysteriously evaporated in those few moments. Tomorrow we are heading west to another inn, this time at St Erth, which is near to Hayle.

I guess my reflections about the hospitals and Fred are coming to a close now, and there is not much more to say over the next day or two…..

Once we returned from BMT back to W34 it felt like great progress was being made as it did mean all the additional restrictions from isolation would be gone. There was talk of us moving to Sam’s House with Fred and then perhaps a few weeks later go home, to return a few times a week for tests and treatment.

We headed down and returned to the ward, being billeted in Cubicle 2, which was far better for us as previously mentioned. The same old faces were there, plus a few new inmates and we settled in quickly.

It was good to be in there as gradually some of the staff came back into work over the days and were surprised to see us there. A couple of times I would peer out of the vision panel in the door into the ward, and they would have a double-take and ask what on earth are you doing in there? They seemed genuinely surprised and pleased that Fred was in their midst once again, and like us thought things were going really really well.

Fred by now had a new trick and that was to wave on demand. Not just a clumsy wave, but a floppy wave at times, though sophisticated and Fred-like. In any case it meant he could entertain even more now.

We were still barriered so this pee’d us off again, but we were making progress with Fred. After some discussion, Infection Control agreed that we could use the Parents Room provided we were quick and of course washed our hands and gelled them. This was good and normal service almost resumed.

However, after a re-think that was short-lived and we were locked down once again.

Sadly by then we had been told that Fred had relapsed and he only had a few weeks to live. The fear had returned, although there was not any doubt as to where we were heading then.

We had assumed that he would be moved pronto as we had explained our wishes and given that he only had a few weeks, maybe a couple, it did take quite a while to actually leave the building for the last time – ten days or so.

Fred was due some visits to theatre to administer some chemotherapy to dampen the increase in leukaemic cells to the central nervous system, and to have a form of spinal tap to relieve the increasing pressure in his head. This worked for short periods of time although we knew it was just delaying the inevitable. However it may well have contributed to Fred going peacefully, we will never really know.

In one sense we wanted to keep it at bay, but knew that it was Fred who was important here and that if he had to go, then he would. As there was not any treatment available, to prolong things would not be fair for him.

It was during these early days after relapse that we started touching on subjects that I had read about in the newspapers and never for one second thought I would have to consider the implications ourselves when Fred was born.

Given Fred’s situation, there may have come a time where he deteriorated unexpectedly, maybe with heart failure or something that would have prompted a rapid intervention from staff. It was explained that they needed to know what to do in those circumstances, as without clear understanding they would have automatically tried to save his life, and resuscitate him. Your first thought is “well, what else would you do?” but it was made clear that it would not help Fred in the long term. If he were carted off to PICU to remain there and end his days unconscious, connected to a life support system then I think we would have failed Fred in some way.

We agreed that the best way would be to not intervene, unless it helped him, and so DNR (or Do Not Resuscitate) was placed somewhere in his file. You do get an awful feeling of deserting him in his hour of need, and this is very difficult to understand when you have not been there. It is a horrible phrase and I do feel for those who unexpectedly have to make that decision, when perhaps they have not had the time we had to come to terms with the situation. Then I can understand why they challenge the medicos thinking, sometimes to the High Court.

We were not rushed in making a decision, but it seemed a fait accompli knowing what we knew then. We were Fred’s advocates, and I am sure he understands in some way.

Our only mission then was to get Fred back home, and to be comfortable and to go as peacefully and as naturally as possible. For him to die in Bristol would have been a great psychological blow to us, and one which we would have regretted for many years to come I think. It was one that we avoided thankfully and is not any reflection on the care he received in Bristol - he was a Devon Boy (or “Deb’n Buyh” if pronounced correctly…) and so that was where he was to return with us, at his side all the time.

I did have a little thought at the back of my mind thinking that a new consultant might, just might, come up with a brainwave and be able to save Fred. It was a silly thought but you just do cling to these things, in the vain hope it would all sort itself in the end.

Our next, and final, stop would be the Royal Devon and Exeter Hospital – Bramble Ward.

Friday 25 MaySat, 05/26/2007 - 01:45 — endc011
Today saw me pick up my ma and pa and head up to Chagford, where the CLIC Sargent Coffee morning was being held to raise some more money for the good cause.

The venue was at Endecott House, just opposite St Michael the Archangel Church where Fred was buried. In December last year, Rachel and her mum organised a similar event to raise money for CLIC. You may remember them knitting hairy scarves in the hospital, where my input was to untangle the difficult to knit wool occasionally.

Rach also made a stack of handmade Christmas cards in Cubicle 5, which were popular enough to sell as they were being made. We sold eight rapidly in the hospital although it did nothing to fill the tables on the day. It raised money though and so Rach knitted faster.

I was unable to go to the first coffee morning as I stayed in the hospital with Fred but it was a great success. Given that there are coffee mornings regularly in Chagford they managed to raise £1700 in December, in just two hours.

Today was not bad in terms of weather, but also on was the Friday flea-market. One of the big sellers this year was plants, and so this was positioned outside of the hall. There was a prize draw (called by me in the end) with 45 prizes and the cake stall which sold out.

We managed to raise £1400 this time which was good again. We shall have another in due course I expect.

I am thinking about a fund raising venture for CLIC Sargent, and I shall dwell on it a bit more.

We went down to see Fred and tidy up his little grave. A brief chat with him and then Rachel escorted her mum to the bank to deposit the money safely.

Lots of people participated and contributed to raise all that money, so thank you very much. Obviously it is a charity close to our hearts and we shall continue to support it in any way we can.

On the way home I took a detour to the farm shop at Whiddon Down to take a look. I did go up on Monday but forgot that it is closed then. A few packs of sausages and some mutton plus I got some ostrich steak. I have never tried ostrich only because they never seem to give away free tasters at food festivals for some reason. I am sure more would buy it if they knew what it tasted like? Maybe that is the reason why they don’t…

No goat today sadly, there still must be a shortage of the things still.

YesterdayI received a copy of the article about Fred in the Western Daily Press from my uncle and it was in their Obituary section. This was nice and used the same words that appeared in their sister newspaper, Bristol Evening Post - “The Life of…. Freddie Wills” which was another obituary. Thankfully Heidi in Bristol bouight some copies for us and sent them down by post – thank you!

I do not think they normally do obituaries for infants. However I did refer to my Debrettes Guide to Etiquette and Modern Manners and found that “Obituaries are placed at the discretion of the newspaper obituary editors. They, unlike death notices, cannot be bought…. The qualifications are that the deceased was distinguished, had been eminent in his field and had in some way contributed to the greater good…” I would like to think Fred did that in his 13 months with us all.

Yesterday I posted some more photographs of Fred that were mainly him before he was diagnosed. Some are very early ones and a couple might have been shown before. There is also a picture of my Crocs shoes with Fred inspired Jibbitz (little badges you pop into the holes of the shoe – a cow and a sunflower.)

I was at home when Rachel and her mum transferred from W34 up to BMT.

When I arrived he was safely in his new bed, and the room had a view for the first time. I could look down on the building works of W39 (or is it W38), and wondered what it was for.

New staff and new things to learn. The buzzers were pressed every few minutes in there and the staff ran from one call to another.

We in there for his “conditioning” treatment in preparation for the bone marrow transplant in the next few days. We were warned that some of the drugs may give him side effects and after a day or so he did develop a rash, which was only evident for a few hours.

Then we were approached unexpectedly by one of the nurses, Jezz, who asked if we minded moving to isolation a couple of days earlier than planned. We had been given the opportunity of choosing a room so we agreed anyway.

It actually meant we were to move then, and so that is what we did. All of his stuff was stripped back down to what we really needed in there, and the other stuff I carted back to Sam’s House.

We had only been in Sam’s for a day or two, but felt at home there. I had my big bottle of Dettol to soak in, and the room now smelt like a cleaners cupboard.

We had our induction into isolation and nervously entered with all of our stuff. Everything was liberally wiped with Azowipes, to get rid of any bugs.

Once in, we were even more restricted in our movements, and had to think carefully what we wanted to do each day so as to minimise the getting in and out of scrubs suits.

I managed to get Rachel’s laptop in place and this is where I sat for many an hour, doing the blog and sending email, keeping tabs on what everyone else was up to in the outside world. The laptop actually proved to be a really useful resource, though was connected to dial-up internet and I spent a fortune on calls. Each week I would be slipped an invoice of the telephone printout and each time I winced at the amount. There was talk of wireless broadband coming and we even saw guys from IT poking about laying cables in the suspended ceiling space.

Sadly this only turned into PACS, a wireless system for viewing images on the ward I think.

It was during that time that I saw the little girl opposite making a piggy bank out of papier mache. I decided that I could do one, perhaps better, and as I had heaps of time on my hands I commenced after having a discussion with Yvonne the play therapist on that ward. She presented me with several sheets of sugar paper, some balloons and a few bits and pieces. PVA glue was rationed so that you did not hoard it for days as it has a tendency to grow bugs.

I commenced on this epic project that was to have a lot of people peer in at me, as I created it in full view of the screen to the ward.

I gathered various medical bits and pieces and kept them back and adapted them as necessary.

Thermometer probe covers (his horns), plastic pots (snout and legs) , bungs (hooves) and a strap from the torch that fell off (his tail), all went in to my bag for future use.

People kept thinking it was a pig, which of course it was not. I had been inspired by Fred’s trademark cow suit, with the Friesian pattern on it, so this is what I planned anyway. It had too much of a snout so I performed a rhinoplasty procedure to build up the bridge of the nose, though this failed to convince the non-believers that it was a cow.

Once it was painted with acrylic in black and white I think they got the message. I shall post the latest photograph as soon as I can. There is not any real reason why I called it “Fred’s NHS Cash Cow” other than it was not a piggy bank, but a cow for putting cash in. It was to be for Fred so I painted his name. I added the “NHS” bit for some reason, probably because we had been brainwashed by then at seeing the little blue logo everywhere each day.

The weeks went by and we saw Fred bob up and down progress-wise. There were a few difficult times in there, but we were expecting a lot worse. Whether that was good or bad we will never know.

It was good to see Sarah F on the ward, as she had looked after Fred when she worked on W34 for a bit. She was his named nurse for the time in there. She then explained that she was changing jobs and was moving to W34 full time, which was a shame for us, but we had started to get to know the other staff by then.

One day (Day Plus 28) he was due for theatre and so we got ready for that. I was also told that we would not be returning to BMT but were being transferred back to W34, which came as a surprise.

It was just Fred and I that day as Rachel had popped home so she was surprised that we were being kicked out so soon…..

Thursday 24 MayThu, 05/24/2007 - 22:47 — endc011
The last few days have seen us pottering about, doing normal things and trying to stay normal as well. That can be difficult at times, and there are those times when something very ordinary triggers us to remember Fred in a similar situation. Wandering through town and seeing all these new-borns in prams, or toddlers going to the primary school brings it all back occasionally.

I learnt that there was an article about Fred in the Western Daily Press on Saturday I think, and I had a quick look on line. My uncle shall send a copy to us in the post, which was kind. Also in the Bristol Post on Saturday was his obituary titled “The Life of…. Freddie Wills.” They included a photograph of him holding a little bunch of flowers, and it read well.

On Monday evening Rachel was woodcarving so she stayed in Chagford overnight. I came up during the day and I went to see Fred, and the sun was shining. Lots and lots of birds were in the trees, with crows noisily shouting in the distance. I had a little chat with Fred before heading back for some lunch.

The CLIC Sargent Coffee Morning is on Friday 25 May at Endecott House, Chagford, from 10am to 12 noon. This means that Rachel has been busy making cakes and has meant the cooker being on overtime. It all smalls rather good and see the dining room full of cooling cakes and crumbles does make one hungry.

Rock cakes, upside down cakes, Victoria Sponges, Choc chip muffins, chocolate sponges, and rhubarb crumble end up on the dining room table. She will take them tonight, as they have an early start in getting the room ready. I will follow on tomorrow morning taking my mum and dad up too.

I cannot remember arriving on W34, nor who received us. By being there we were sort of starting at the very beginning of his treatment now, and the threat of the various protocols of chemotherapy he would have made us worry about what lay ahead.

The weather remained very hot during those early days and the shorts were in use each day. We knew that summer would turn to autumn and that we would see Bristol change into its winter coat, and we were not sure of what happened after that. As it turned out we were to see the spring once again, the clocks going forward and the evenings drawing out meaning nearly a year had passed by quietly.

We were in Cubicle 5 for the seven or so months, and not knowing any better were quite pleased with it.

We did not stay overnight for quite some weeks for some reason, and the only thing I can think is that we had become used to PICU sending us up the road each evening to CLIC House, so just carried on as we were. One thing I also remember is having a conversation with on of the nurses who said they were short-staffed, and it would help them by us looking after Fred. Looking back it made sense and we did end up staying overnight for many months anyway and would not have left him. I did think at first that we were replacing “nursing care,” and did not want that to happen. And it did not as it transpired.

It was a long long slog when I think back to the time in hospital and there was never any real talk of a release date, and now I realise how imprisoned we felt, having started to do normal things again.

We did not have any choice, and the good thing was we were with Fred 24 hours a day, helping to look after him and see him develop, albeit in abnormal surroundings.

Over time we began to become friendly with the nurses, and this helped. Initially there is a professional barrier that remains which is to be expected, but occasionally you got glimpses of their lives and what they get up to. Of course they found out all about us over the months, and I suppose some really got to know us in a way no others ever have. Being in their custody as well meant we were governed by the system, and so if we were told not to go out with Fred we did not.

Sometimes we would stay in all day with him (waiting for the OK to head into town), and someone would come in at around 1600h, and ask why we were still sitting there. No one had told us we could go out for the day……

Things changed a bit when Fred relapsed and we returned to the ward a few days later. That was in December and we seemed to be on a different level of friendship with them after that, with a lot of the “formality” gone.

Charlie had re-arranged Cubicle 5 back to how Fred liked it on our arrival and we were surprised to even get a bed, given the “to come ins” that were floating about that week. A lovely touch I thought.

Obviously you tend to warm to some staff more than others and that is life. Some you might say “yehhhh!” when you hear they are working that day, others you might say “OK….” All of them were brilliant though and made the time fly.

I was fast asleep one night, about 0500h in the morning when Nicky T came in and tried to wake me. I could hear a voice saying “Tim…..Tim?….” and I thought in my slumber it was my mum. That confused me somewhat and I awoke to find her looming over me in the gloom clutching a scrap of paper. She reminded me that Fred was “nil by mouth from 0500h” as he was “due in theatre” that morning.

This was news to me, as we normally knew in advance when he was having something done and we get to sign the consent forms anyway.

Once I had come around, I questioned this, and asked what he was going to theatre for. Nicky then realised that something was not right and squinted at her bit of paper in the darkness – notes she had made during handover. It was not Fred due for theatre, but the little Polish lad down the corridor…… A couple of choice words and she scuttled off as I resumed my dozing.

There was another time that one of the nurses from the Adolescent Ward, which adjoins W34, came in with Nicky T (again!) to check something. As the nurse (I cannot remember her name) bounded in she saw I was watching Coronation Street, and made a comment about “Fred” – (meaning Fred Elliott the butcher) – although just as she started her sentence she realised it was not quite the right thing to say in the circumstances. She promptly went very red and looked as if she wanted the ground to swallow her up. As she exited the room I heard her say “ohhhhh, why did I say that…” I did chuckle to myself anyway as she squirmed before me.

We did have some laughs there, as weird as it may seem. Most of the time Fred was on the mend to us, and he had the ability to be able to soldier on through all his complications and rarely seemed to have problems without there being some light at the end of the tunnel.

The darkest time was in January when he suddenly took a turn for the worst one evening. That scared me afterwards, as I knew he was gravely ill, but once again he got through it quite easily once the problem had been identified.

His temperature went up to 41c which is high, but kept staying there. He would then start to shake and curl up and go a strange mottley colour as the body dealt with the abnormal goings-on. The on call registrar did not like the look of him at all, and wanted him to go to PICU. Fred was maintaining control as the body reacted to the infection but he would have soon just run out of energy to keep on going like he was.

That never happened, but thankfully the doctor covering that weekend was Martha, who was possibly Italian or Greek, but normally works at one of the hospitals in London. She did a couple of continuous 48 hour stints on the wards at weekends. Anyway, she reassured us, and Fred was taken urgently to theatre at around 2200h to have his Hickman line removed, as that was the source of the infection.

Miraculously, he returned an hour later fast asleep with a normal temperature. He slept for 10 hours solid, with the bugs safely in the bin in theatre.

All of the people who were on that night, were the ones I would have wanted to be about if there was a crisis. All knew Fred intimately and so our trust was there. When Fred was in theatre, we realised we had not eaten for hours and hours butwe had some stuff in the parents ‘fridge and Jamie offered to cook them for us.

He disappeared, and then almost immediately afterwards Martha came in and asked if we wanted an Indian takeaway, as they were just ordering one to be delivered. I had to find Jamie to cancel my meal order! I raced to the parent’s kitchen and he was not there and then on to the ward kitchen. He was in there whistling away as the microwaves buzzed into action. In the few minutes he had gone my meal was halfway through being cooked, so I did not want to waste it. I plodded back to tell Martha that I would have to give the Indian a miss sadly.

I did not leave until nearly midnight that day, and the curry still had not arrived by then so maybe a good thing.

We were lucky never to have to use a bed on the ward, or Bay, as it all looked rather open. There are five beds in there with just a curtain around your hospital bed and parents bed, privacy was non-existent. Whenever I entered that area I was thankful Fred was in his own little room. He was able to get very noisy too at times, so maybe just as well.

There were times when all sorts could be heard from the bay, as patients protested about what ever was about to happen with them. Some people used to watch television late into the night, and just before we left for Exeter there was a family who had visitors all crowded around until midnight whispering away.

We were barrier nursed for a long time; from about December onwards I think which placed an extra burden on us. It is quite right that infection is controlled to stop it spreading. Whatever the reasons, it certainly had a terrific impact on our stay in both hospitals.

Being barriered meant we could not use the canteen really, but in the end we were allowed. It meant no access to the computer room and your general lifestyle is significantly restricted. Whether this achieves the aim of controlling infection is another thing – I do not know.

The canteen is like no other I have seen and is so tiny for a regional hospital in a city centre.

We got to know the staff and occasionally felt miffed that food had run out or, the kitchen had closed early. Another thing is it closes at 1500h each day anyway (or before) so I am not sure what the Trust expects us hungry parents to do for food. The adjacent BRI and other hospitals in the immediate area either do not have any facilities at all, or close at 1500h. In that few square hundreds of yards there must be a couple thousand beds, probably less.

I suppose the decision makers do not think of the 1000’s of parents and visitors to the hospital get hungry in the evening whilst they are tucking into their pate foie gras at home? Food is quite useful at the best of times and it can be the only break for some and the ability to sit and have a nutritious meal cannot be underestimated.

Exeter and Torbay have an excellent attitude toward catering, with the restaurant being open all day until about 2000h although there is often the Spar shop that stays open until 2100h. Those places are heaving and well supported, providing staff with the decent food they need as well.

A snack wagon outside the hospital would do a roaring trade, as you do not want to wander the streets at night looking for a kebab or late night shop that is some distance away.

After BMT we came back to W34 but went into Cubicle 2. We did not want to go to 5 as it held too many negative thoughts in there, and I did request that we be kept out of 5. For whatever reason we did not get back to 5 which was good.

A “Welcome back Fred” poster awaited us which appeared in the ‘blog photographs at the time. He had his 1st birthday in that room and got lots of lovely gifts, some from the staff too.

His music sessions were a sight to behold, and Rachel K has previously referred to them as his “Jazz Legs” and that they were too. Lots of vigorous Michael Flatley horizontal dancing saw us all chuckling at his very earnest attempts to keep up with the rhythm. Julia the music therapist would bring along my favourite instrument as well – the laptop snare drum – and so I could percuss along as well, all in my own little world.

Sam the playgirl used to come in a lot and see Fred to make sure he was not getting board. She helped us sort out the foot and handprints plus the plaster cast of his footprint. Those little things we shall treasure and would have been so easy to put off until another day.

There were so many people who looked after Fred on that ward that is difficult to remember them all now. The physiotherapist Hannah, his dietitians Shelley, Sarah and Jill all helped him go from SMA Gold, to water, to TPN and back again.

There were many doctors that looked after him to, Michelle, Jo, Su Ching, Asim, Bejoy, Hannah, Sharon, Sam, Mike, Colin, Annabelle, Vinay, Stephen the list goes on when I try and recall. There were many others too that passed by for brief periods. Whether having a high turnover of doctors is good I do not know.

Fred also managed to win the hearts of many others, and used to get his regular visitors who would come in to clean the room. Tina, Julianna, Julieanne, Mary, Sandra and Sam all were entertained by the little chap at some stage.

Even the porters were amusing at times, and many knew Fred from his constant travelling to and fro theatre. Some of the tales they would tell were funny and I shall miss their very dry sense of humour.

When we left it was a sad day, as we were taking him home for all the wrong reasons. However, our stay at Bramble Ward, Royal Devon and Exeter Hospital was just over an hours ambulance drive away…….

Saturday 19 May 2007Sun, 05/20/2007 - 04:34 — endc011
We went to the Devon County Show yesterday, where it was quite sunny but a bit breezy, and with the occasional light shower. It was a nice change from the previous ten months and we enjoyed it very much.

It was saddening not to have Fred with us, as he would have been more aware of things like the livestock and general hustle and bustle of the day. Inevitably there were a lot of little ones about enjoying their day out which was nice but difficult too for us.

The entrance fee seems to go up each year, and this year it cost the two of us £29.00 to get in, plus some food. We would normally think ahead and bring our own, but chose not to this year as we could not be bothered.

I managed to get my much-wanted Crocs shoes. Those are the very lightweight rubber clogs, with holes in. I wanted orange or banana yellow, but Rachel did not think them appropriate and after much thought I went for the Burgundy, which are in fact probably the better choice.

I also bought a jibbitz – a Friesian cow (for Fred) to go on the shoe.
Today Fred appeared in another newspaper article regarding his death, in the Western Morning News. Cut and paste the articleslink:
http://www.thisisdevon.co.uk/displayNode.jsp?nodeId=141529&command=displayContent&sourceNode=141513&contentPK=17360746&moduleName=InternalSearch&formname=sidebarsearch

CLIC Sargent helped in so many ways over the last ten months although the most obvious at the moment to us, and others is their offer of free accommodation whilst in Bristol.

There are two such houses in close walking distance to the hospital and were both excellent.

CLIC House was once a large semi detached villa that has been converted in to one large multi-occupancy house. There are twelve bedrooms all with allocated kitchen and storage facilities plus a play room, teenagers room and sitting rooms.

We arrived at CLIC House on the Monday 10 July, late afternoon with a vague set of instructions as how to get there. We had our bags with us with all our belongings and arrived at the Kingsdown Fish and Chip shop, and had to ask a couple of passing PCSO’s where we were heading to. The four of us managed to work out where we were in relation to the map, and we then set off once again. It was drizzling at the time and eventually we arrived at the house.

There was a choice of three doors to go in, and luckily we chose the right one. More luckily we had been assigned a self-contained annexe on the ground floor and were to share with another girl, who actually spent most of her time away from the hospital.

We did not realise for some time that there was an internal door that went to the rest of the house, so we stayed isolated for a few days.

We could he noises the other side of the door but chose not to have a look for some reason. There had also been talk of a laundry room and such, but we did not know where it was.

Somehow one day I ventured through the door (a bit like The Lion, The Witch and The Wardrobe) and found a whole new world the other side of the door. There were other humans who spoke…..

Rachel soon found parts of the house as she explored, and it was nice to be able to recognise a few faces from the hospital, as by then we had moved to Ward 34.

It was also nice to be able to shut the door and be in your own quiet world.

Our flatmate Nicola was due back soon and we wondered what she was like. We could only judge by the few items in the ‘fridge – goats milk and a lot of noodles. As it was she turned out to be great and we still keep in touch with her whilst her daughter continues with her treatment.

The annexe was very much a separate part of the house, and the other residents did not have any reason to come in really.

One day I was in the shower, in just my hat, when I heard a key jiggling in our front door. The shower room door was wide open, and I felt a little vulnerable there. I could see an army of people through the heavily obscured window, but they seemed to move back off up the path toward the road, so I assumed they had gone..

Rachel was back in Devon, and Nicola was not due back for a while so I was concerned at who these interlopers were.

Anyway I hastily scuttled across the hall to our bedroom and put some clothes on. As I emerged I heard people talking immediately outside our front door again. I looked through the glass spy hole and saw, through a goldfish bowl lens, an extraordinary amount of people looking back at me. They started to try the door again so I opened it.

It was three generations of a family who wandered in through the door and looked around at OUR accommodation, “oooohing” and “aaaahing” at how nice it was.

I still had not said anything, but they started to advance into the hall shutting the door behind them, pushing past me.

They said they were looking for “Room 12” and so when I found my words, I said I would show them. Rather than impolitely shoo them out of the door whence they came, I led them through our kitchen and sitting room, into the communal area of the main house.

By then various things in our accomodataion had distract them and some of them were still left in there. They enthused for a while in strong midland accents, gathering by the patio doors to gaze at the garden, lifting the nets to do so.

This prompted more “aaaahs” and a coupke of “lovely’s” and as I watched I had a sudden flashback of the Royle Family for a second.

I managed to gather them up once again and gave them a tour of THEIR part of the house, and off they went. I explained that we were in the “Annexe” which was just that – separate. I did not want a repeat of me emerging from the shower, towel drying my hair, to find a troupe of open-mouthed fellow residents standing before me.

A while later I was sitting on the settee minding my own business, when I became aware of a face peering in through the patio door, trying to look through the nets. As they moved away I thought I heard the girl say “that’s where we come in.” I did not see them again in the house and they left the hospital a few days later.

Another time saw a late arrival ring the bell of the main house. There is not a resident manager or staff member after 1700h weekdays, and so most find their way in and around somehow without problems.

Normally I avoided answering the door as it could spell trouble. There are strange folk about Bristol and I know my luck that it would be an oddball doing the rounds. I could see they were with bags and stuff so I went to the door in the main house to let them in. I helped them with some bags and after some confusion showed them where their room was.

I sat watching the television later when I heard a tap on our link door to the rest of the house. I opened it and it was the gentleman from the family I helped earlier. He tried to explain that there was not any towels or something like that. Anyway I went upstairs and showed him the unmarked linen cupboard. Lots of head nodding and handshaking I then went back downstairs.

A bit later there was another tap on the door, and I got up again to find the same man. I could not understand what he was saying again but it transpired the toilet light bulb was not working….

By then I was getting tired of being some form of concierge, and had to say that I did not know anything about bulbs and closed the door. I think he must have thought I was the resident manager. I never saw him again.

We later moved out of CLIC House when Fred was discharged prior to his first appointed bone marrow transplant. Unfortunately he relapsed and we returned a few days later. Our room had been reallocated, so we were now on the top floor, in Room 7.

This meant our “new” kitchen was on the ground floor so was not ideal, but did mean we could sit and chat with the other residents. They were all on the ward, or at least hospital so it was good to chat.

By then, we had been there the longest in one run, though some were regular customers, so to speak. It did mean that people asked us questions about what lay ahead, and also felt like we were helping them.

It has always struck me how we are all different in these situations. Some people I met did not want to know anything about anything. Whilst this was they way they were happy to cope, it did mean they were fretting over things that they did not need to. There were always information pamphlets lying about explaining in clear English what happens, and did not come across in a heavy way. But, some did not want to see anything, or know anything so I let them get on with it in the end. I am sure it would make their stay in hospital even more worrying.

We saw more of the staff in CLIC House than we did at Sam’s House probably for a number of reasons. Our room was just by their office and we had to pass them, and normally had a chat with them. Also we left a bit later in the morning to come down as we sometimes had Fred with us in the early days.

At Sam’s we were generally hurrying out the door in the morning and only chatted briefly to the staff.

Both houses had wonderful staff that had seen it all before, but cared about what we all were going through.

Thank you to all of the staff at CLIC House and Sam’s House. We received a beautiful bouquet of flowers on our return from the Show yesterday too, from them all.

Thursday 17 MayFri, 05/18/2007 - 01:12 — endc011
Today the weather has become exceptionally hot, and we have been over to Newton Abbot to get some stuff for the ‘fridge. I have not been to the store before as it was completed whilst we were in Bristol. A strange car park layout but was still an enjoyable but mundane activity.

I heard today that I was not successful at getting the job I wanted, so will have to be philosophical about it all.

Rachel ended up doing some painting outside as the house had got a bit grubby, and I managed to disappear in the car to avoid any stray blobs of paint. When I returned she had almost finished and we caught up with the window cleaner too.

There was an article in our local newspaper, the Herald Express about little Freddie and it read quite well. I managed to have a large input in the wording, so that was nice. I attach a link to cut and paste:

http://www.thisissouthdevon.co.uk/displayNode.jsp?nodeId=134822&command=displayContent&sourceNode=237837&home=yes&more_nodeId1=134831&contentPK=17341051

I also have spoken with the Evening Post (Bristol’s newspaper) and they have agreed to insert an obituary in Saturday’s edition. I rang and spoke with one of the nursing staff today and asked if she could save and send me the article. I inadvertently I woke her up as she was working Nights……

Hopefully it will show that whilst Fred was our enjoyable little bundle, he managed to inspire some good things in his short time. I also hope to be able to continue that for him somehow.

Wandering around shopping means we see all the happy families with their own children, and is a regular reminded of what we no longer have. I do not know if that awful feeling will ever go away though.

We are over to a friends house tonight, so might have a couple of drinks. The Devon County Show is on at this time of the year so we may go, but again it will be a reminder of Fred as we took him there last year. The weather was rainy and blustery and we managed to change his nappy in the pram without too much fuss, although the wind caught his bum as did the rain when being changed.

A few days ago I said that I would like to say “thank you” to each of the departments and organisations we encountered along the way, as we may not have, and some of the memories I have. They may well appear in the early days of the ‘blog.

Once Dr Sainsbury (Torbay Hospital) had told us Fred had a form of leukaemia at 0100h on the 8 July 2006 we felt like we were in free-fall for a bit.

At about 0430h we were waiting in Fred’s cubicle on Louisa Carey Ward of Torbay Hospital. The nurses were popping in and out and they knew we were in shock, and I suppose felt awkward. They were total strangers to us, and us to them.

The Retrieval Team from Bristol arrived and we moved out of his room into a fairly narrow and dimly lit corridor. There were two Bristol Hospital staff – Rebecca and Carrie in dark blue overalls, from PICU, plus two Paramedics in mid-green overalls from Avon Ambulance Service. They wheeled with them a couple of huge packing boxes like you see at a concert. About 1.5 metres high, and 1 metre square they opened to reveal just a handle full of equipment.

It was at this point I started to get frightened as we were now losing control of the situation, and Fred was drifting out of our custody.

Once Bristol’s equipment had been connected up to Fred we walked along the corridors with Fred peeping about, looking the picture of health. There was a bit of banter but I did not really hear it.

The ambulance was waiting outside the main glazed entrance that is usually thronging with smokers and visitors. It was just becoming light at that time.

I remembered him looking so tiny on an adult stretcher with webbing straps holding him safe. He was looking at us as he was clunked into position. I have a photograph of Fred that shows the exact expression I remember and I will try and put it on the ‘blog as I can see in my minds eye.

They cheerfully asked if we wanted to say “goodbye” and we did not think we could go in to the ambulance, so waved feebly at him as they shut the doors.

Amidst a lot of tears we walked down in the half-light to the car to travel to Bristol, armed with a basic map and some verbal directions. The crew suggested the Clifton Suspension Bridge route but we ended up M5, M4 and M32.

As we turned into the car park Fred passed us in the ambulance, which had switched its blue lights on just before it passed us. As we clambered into the car I heard a faint siren briefly as it would have joined the Hamelyn Way roundabout, even in the quiet time for traffic.

We arrived in PICU at about 0630h and I cannot remember who greeted us. No one I think, but we found him in bed with the staff who assured us he had slept all the way. His nurse was Dom.

The two weeks we were there saw us meet a lot of parents in different circumstances and it is difficult to realise the children were all in there for totally different reason. We kept thinking they had forms of cancer. The first night the little girl in the bedspace next to us died. I realised then this could be the shape of things to come.

The good thing was the telephone point by the bed, and the nurse would cheerfully answer it as “Freddies Bedspace” whenever we rung.

We were not allowed to stay overnight so regularly called to see what he was up to.

The atmosphere seems to be one of intense concentration from the staff, which rubs off on the parents and visitors, presumably due to the gravity of the situation.

The ward rounds were like a busload of visitors. They consisted of a dozen or so specialists at times, and the parents are excluded during some of these, which I later thought was strange. All the other places encouraged parents to participate, but on PICU we all piled out to the Parents Kitchen.

We went from Bedspace 3, to 5 and then 10 I think, which was a separate room at the far end, just before we were discharged and admitted to W34. I learnt many months later that you are “weaned off” having a nurse with you for 24 hours a day, so it is not such a shock when you are sent to a ward where they may appear short staffed. That explained why we were in there I suppose.

I recall that whilst we were in PICU we seemed to be quite relaxed in a way. I mean that in that we knew he was in safe hands and we could go back to our accommodation knowing someone was watching his every move. Strange to think that in an intensive care environment, and I doubt if many people feel like that.

The other thing was the Parents Kitchen in PICU. It was worlds away from the Parents Kitchen on W34. In there is was like a communal meeting room for all relatives and you quickly got to know those in there.

Tea, coffee, milk sugar and bread were all provided each day, and most people ate in there at times.

You could sleep in there, as well as read the magazines, and play with the toys.

Again it was a strange environment, which I will look back on almost happily.

After two weeks we were moved to Ward 34…….

Sunday 13 MayMon, 05/14/2007 - 03:18 — endc011
The forecast was not very good for today but it looked OK, when we got up, again fairly early.

Today Cancer Research UK are having their “Race for Life” event just down the road from us and a few people we know are participating. We had hoped to be able to attend, or at least one of us, for sometime now. It seemed fitting to go in any case, given the effort people go to, to raise funds and awareness of cancer.

Last year we went but the weather was really hot. I was wearing my straw boater hat and Fred was our brand new addition, so he took centre stage with all the crowds down there. By then I had got my video camera (40th birthday) so I have footage of that too.

We saw a lot of people we knew, and it was the biggest event they had held so far. It has grown each year.

I remember us reading the placards on the back of each runner – the name of the person they are remembering – “Mum – Dad – Granny Miggins…” each person had their own story to tell and we just enjoyed the sunshine and I did not dwell on their troubles too much.

Rachel’s family have experienced cancer and so she was much more informed than I, and I expect she fully understood what all the runners were there for. During the event she agreed to do the run this year with some of our friends, and I thought that would be a nice idea.

We headed off that year and I put it all to the back of my head.

We fast-forward twelve months and the weather is pouring. We buried our beloved son three days ago, after he succumbed to cancer aged 13 months. It was not shorts and t-shirts this year, and we were wrapped up in anoraks and I this time had my leather drover’s hat on to keep out the rain.

Many of the people who ran last year were there too, and we wandered about in the heavy rain that was torrential at times.

Emma, my colleague was with her sister and the two soggy hounds, Ringo and Bracken, and she asked if I had cut myself shaving. I had not, but soon realised that some colour had started to come off the leather hat and wash down my face, giving me an eerie “David Dickinson” perma-tan. I hastily removed it and used my hood instead.

The “warm up” by Gemini Radio saw a sea of people waving their arms around and up and down to music, such as “Sex Bomb” by Tom Jones and others. Some people were supple but some I saw physically creaking. All of them I guess had been touched by cancer in some way.

This year there was a new name on the backs of a tiny handful of runners – “FREDDIE WILLS.” When we saw this both of us felt it was a lovely gesture. Later during the warm up I could catch glimpses of Fred’s name bobbing into view and managed to hide my tears as the rain was belting down now, and I huddled in my hood.

Once the runners had set off we hung around the Finish line with the first back in 10 to 15 minutes or so. We were waiting for Dawn and Emily Rowe, Nicky and Frankie McGowan and Hayley Regan to finish. They all came in after a short while, drenched and blowing (not too much) and all felt better for it I am sure. Dawn mentioned the last 500 yards being a bit harder as the track was on grass that was becoming waterlogged before the race started anyway. She carried on thinking of Freddie and I am sure he was up in the clouds cheering from his baby bouncer, whilst leaning back to sip on some lightly chilled Gold Top.

As we headed back the clouds cleared and the sun came out, perhaps as a sign from those all up in the clouds, as a thank you and to warm everyone up again. The pavements steamed as we walked along the beach back to the car.

As it was over-subscribed this year, they ran another race in the afternoon and we drove by later to see what was going on. It was 1430h, and saw the runners lining up for the start.

I have included a few photographs of today’s event, plus another I found on the PC. It is of me, on the very first Race for Life, this time on Goodrington promenade. Rachel and I were not married then. My colleague Paul and I had just emerged from the Spanish Café (a regular haunt to rest our weary feet) after a “belly busting” fry up, and there may be some egg yolk on my chin. I see too I am literally wearing “another hat.”

At that time I did not have a clue what the race was all about, and thought the names on the back of each runner was their nickname or something……

Saturday 12 May 2007Sun, 05/13/2007 - 04:41 — endc011
I have been asked by a number of those who follow the 'blog as to when it will end.
Thursday seemed apt in the circumstances, but some wanted me to continue. I am not sure what else there is to write and was thinking of never posting another set of words after Fredericks funeral.
I enjoyed the time I spent doing the 'blog, and it filled many an hour, often in difficult circumstances but now does feel the right time to finish. However, as in life there are sometimes occasions when you would want to say a few more words, just for closure, when you felt you did not have the chance.
So I will over the next few days, or perhaps weeks, compile some "thank yous" as many are deserved plus a few memories.
There have been many people we have encountered and I may not not have expressed properly our thanks to them as events unfolded. This maybe the best forum in which to do it.

2007-05-01T18:40:00.000+01:00

Day 302 (Tue 01 May)Wed, 05/02/2007 - 04:15 — endc011
I stayed last night and Fred remained in considerable discomfort for quite a few hours. He seems to have some abdominal pain by the look of it as he brings one leg up, and is not happy to be picked up. He initially responds well to the morphine bolus that I give him, but over the hours it does not seem effective as previously.

We had discussed with Andrew the changes to the morphine dosages and he agreed to write up a more increased dosage in preparation of it being needed overnight. That way it could be done more rapidly.

As the night went on he become more annoyed and tired and did not respond to the two or three bolus’ of morphine that I gave him. Normally one bolus would work for him and he would sleep.

It felt like neither of us got any sleep until about 0600h where I remember waking up as a nurse scuttled by in the gloom.

He really was quite uncomfortable but slept when he could.

I slept in until 0945h as I was so tired and did not feel there was any need to hurry and get out of bed, especially whilst Fred had decided to nap.

Rachel comes in and he stirs and returns to being quite angry and restless. He gets two or three bolus’ of morphine that does not seem to work.

He does get some more water and milk and we notice that this seems to placate him a bit more than before. This is good news for Fred and us as he obviously is hungry and thirsty and so must feel a bit content afterwards.

Andrew comes in and we have our usual very helpful chat about things and how they are going. There is never any hurry whatsoever in these discussions and we sit on the chairs and discuss things rather than stand about and talk.

They last quite a while, sometimes 30/45 minutes maybe longer although we are discussing difficult topics. They are raised sensitively and we understand that all of these decisions and discussions are about keeping Fred comfortable and happy, and that we can change them if we want to. This makes things initially difficult but you soon come to a clearer understanding about what all this is about. To talk and think about Fred dying soon is absolutely heartbreaking and it all seems so unfair. These last ten months have been a mixture of hopes and fears for us all, with many of them being realised along the way.

We are Fred’s advocates in all of this, and whilst is very difficult to be even contemplating the topics raised, we do not have an alternative. In any case, there is no one else in the world who can make the decisions I don’t think.

During these moments Fred lies fast asleep quietly sucking on his dummy and I hope he does not realise what we are all talking about. We will do the best for him in any case, whatever it takes.

The birds are starting to feed on the feeder we put outside his room. Mainly blue tits at the moment, but I catch a glimpse of others peering at it.

His drugs are regularly reviewed through the 24 hour period and he is now on the following, hopefully to let him rest without any unnecessary suffering. Morphine, Cyclizine, Pantoprazole, Buscopan and Midazolam plus fluids and paracetamol.

He is asleep too, when I leave and give him a big kiss goodbye. His chewing of the dummy is interrupted a bit when I do, and he stirs for a minute or so, and then drifts back off to sleep again.

When I get back home I sort out my clothes for the interview on the 3rd May. I shall do my best to attend but I have to get some things into perspective. We shall see what happens in any case.

Day 301 (Mon 30 Apr)Tue, 05/01/2007 - 04:59 — endc011
Fred was quite unsettled last night, and has developed a temperature too. He bobbed up to about 38.3c for a bit and was given some paracetamol, which brought it down to the mid 37’s.

He drank quite a bit during the night and this soothed him a bit but he is still vulnerable to infection. I referred to his WBC being 0.01 yesterday and this was his white blood cell count. Basically his immune system is compromised through possibly an infection as well as the chemotherapy given in his spinal fluid. Therefore his ability to fight infection is greatly reduced. Previously if he was neutropenic at Bristol we would have kept him in his room until his counts increased. Now we have the dilemma of whether he can enjoy the outside world for a bit, or stay stuck in his bed as he has done for the last ten months.

His marrow has taken a hammering over the last few months and although it is now the donors there, it has not had a chance to repopulate as that takes time. In any case the leukaemic cells are stronger and in more numbers now I suppose, and more resistant to drugs that work against them.

When I get in he is quite and sleepy and Rachel looks worn out. The traffic was heavy today and I could not find a space in the car park. I realise that today is their theatre list and also the day cases arrive so our area is a bit cramped.

Once in his room I get some toast and finish off my Poachers Relish which is rather nice. Makes you very thirsty though.

Rachel’s mum arrives and we have a yap.

Claire arrives mid morning and comes with a gift. She has brought along a bird feeder complete with nuts and seed. We hang this up outside and refill the hospitals one down the other end. I was waiting for someone to emerge and read us the hospitals “bird feeding policy” but none came.

The birds do not leave things lying about anyway.

Shortly afterwards Emma and Kim from work arrive. They are all welcomed by Fred’s snoring and I can catch up with the antics of the office and beyond. Not much changes. Fred remains quite sleepy but does participate a bit.

I get a call from another friend, Rebecca and she is in Exeter on a conference, so she pops in too. I have not seen her for a while and she catches up on all that is happening to Fred.

It was a bust day as Wendy pops in too whilst Rachel and June have some lunch.

We chat to Andrew who assesses his pain management and wants to make sure Fred is getting enough pain relief. We will continue to review this as and when necessary so that Fred is comfortable.

Someone has plundered our milk carton despite having our name on it. It was full yesterday afternoon but today is nearly empty. I guess no one would mind someone borrowing a bit of milk if it was not going to inconvenience anyone, but to take most of it is greedy. I put a sticker on the replacement one asking people not to steal our milk.

Once everyone has departed Rachel and her mum head back to home for the night and I will stay with Fred.

Mike and Susan appear too, as they only live a few minutes away and I have left some stuff at their house. Fred becomes to be unsettled for a bit and is difficult to pacify. I try feeding him and cuddling him but he does squirm a bit. On the bed he is clearly in discomfort.

Susan gets him on her lap and he soon settles and falls asleep for a good time. He looks totally peaceful and has just found a position that he likes. When he is passed to Mike, he shouts again for a bit but soon quietens with Susan.

Just before they go we get a visit from Linda and Mike who live near Rachel’s parents and were in Bristol at the same time as us. It was nice to see them and they see Fred at his grumbliest really.

As we cannot sort his pain Andrew comes back and reviews his infusions of morphine. The PCA machine is re-set and his “allowance” is increased so that it does the job. He gets his new dose and nods off sucking on a dummy. I do not know how long the pain relief will last but the bolus’ can be given every ten minutes now, rather than wait 30 minutes as before. Again this will be reviewed.

He is looking comfortable and his temperature is dropping slowly. They have increased his fluid intake too as it was reduced to make him thirsty. However he might not be feeling quenched so to speak so it is increased a bit to take the edge off the thirstiness.

His cries are not as high pitched as before, so it may well be he has a stomach pain or some other similar discomfort. We do not think it is a sharp pain as that tends to be a high pitched squeak.

Day 300 (Sun 29 Apr)Mon, 04/30/2007 - 04:27 — endc011
Fred enjoyed another good night last night and again Rachel had a good nights sleep.

I met with Wayne and Claire and had some tea with them which was nice.

This morning I drove back to Exeter in the sun and met Amanda and Mark in the car park. My godson James was there too and he is growing up fast and was very alert. It is his birthday soon on the 6th, a couple of days after mine.

Amanda came in with me to see Fred, whilst Mark and James toured the grounds in the nice weather.

Fred had some cuddles with Amanda and thoroughly enjoyed himself. It was nice to catch up with her and kept little man entertained.

At lunchtime Colin, June and Audrey came to visit and so Rachel and I went to the restaurant for a spot of lunch. Today is carvery day and so I had the gammon and Rachel had the beef. It was really nice and just the way it should be. Audrey had eaten earlier with Colin and June, so joined us for a coffee which was nice as I have not seen her for months.

Once back we sat and chatted and we wandered out in to the garden. There is a hen blackbird feeding her chicks in the garden and so it was spotted under the bushes. Once mum arrived with a beakfull of worms it devoured them, revealing its hiding place and went back in amongst the leaves. Colin sat in the hot sun to see if he could see it again, but it decided to hide from then on.

We all enjoyed the visit and Fred got more cuddles and was well behaved as usual.

Once they had left, we sat and read the papers for a bit, and had an unexpected visit from one of Rachel’s fellow wood carvers, Tom, who was in Exeter on business. They caught up with all things wood carving-like and soon it was time for Dawn, Emily and Paul to arrive.

Lots of additional hugs for Fred from the girls and lots of photographs were taken. Emily must be one of Fred’s biggest fans so it was nice he could oblige with some extra special cuddles with her.

Fred has started back on taking water now, but has also started back on his SMA Gold milk, which is good for him. It keeps the mouth clear and will make him feel content too. As he is starting on food again he has a poo that can be detected by the nose for the first time in months. He thinks it is hilarious as we waft around him and get hi9m back into a clean fresh bum.

We chat to one of the doctors who says that Fred is neutropenic again, with a WBC count of 0.01 which comes as a surprise to us. It was 3.9 or so on admission, and I thought the chemotherapy he had intrathecally would not have had such an effect to that extent.

In the past he has had high dose stuff over many weeks and they did not drop like that, so I really now know that we know nothing really about haematology and oncology.

Fred continues to pick his nose avidly which I am very pleased about, as they really do need to be got at. Some of his bogeys are quite awesome.

I head back and will stay tomorrow night.

On the 3rd May at 0930h I shall hopefully get to a job interview with my current employers for a new senior post that has come up. We shall have to see what that all entails. I have had the GPDO (The Town and Country [General Permitted Development] Order 1995, to those not in the know….) sent up to me so that I can revise on a topic I used to patter out daily without thought and literally with my eyes closed, but I may be a bit rusty on now…..

I also check on the statistics for the ‘blog and see that to date there have been 86063 “page views” so far since I started the site.

Day 299 (Sat 28 Apr)Sun, 04/29/2007 - 05:09 — endc011
I posted yesterdays ‘blog this morning, once I had returned to Exeter. Now I realise why Rachel had asked if I wanted to take the laptop home as I went out the door.

Last night I prepared some food for the picnic we planned to have today, and so I poked my nose into Sainsbury’s to get some stuff. They have tinkered with the layout once more and I manage to find the things I need. Yesterday was “Bag for Life” day, so there were not any of the ordinary bags about, only the more substantial ones.

I have a chat with my neighbours Garry and Angela for a bit and then speak with Iris across the way. I wrote a letter to the immediate neighbours explaining about Fred’s problems so most must know by now.

I pick mum and dad up this morning and we head to Exeter. It only takes 35 minutes or so during the day out of rush hour, and it is going to be a hot day. We walk the long, long corridor and find Fred fast asleep. As soon as he hears voices he is wide awake and wondering what is happening out of his view. His eyes end up like saucers in the end.

Once he knows who it is he spends five minutes waking up. Then it is all smiles and jolly waves.

He also decides to drink some water which is good. It enables his mouth to remain moist and free of gunge which tends to settle and solidify. We have to let him have it slowly as he guzzles and ends up spraying water everywhere. He has not been sick for a long while properly and he enjoys the experience.

We speak with the nurse about him having some milk, such as his old favourite SMA Gold. He is no longer being fed by the TPN as that was stopped on transfer to Exeter. He will get fluids to keep him going and not get crispy again, but hi nutrition has stopped. This may explain his recent interest in taking things orally, so we will have to see how he gets on with the milk.

My brother drives up and joins us too for the afternoon.

I prepare the food and we head out into the garden for our picnic. We sit on the bench for a while watch the flies and bees buzzing about us. There is rustling in the undergrowth, which I think is the foraging blackbird that collects worms outside the window.

We set Fred up in his pram by the picnic bench and have some lunch. I have brought a variety of summery stuff such as ham, pork pies, humus, coleslaw, carrot sticks, mini pitas, pickled onions, plus a salad with dressing. It goes down really well, and we wash it down with a carafe of chilled orange squash.

Fred enjoys the sun on the blanket and plays with the flowers we give him. Daisies, dandelions and buttercups all fascinate him and he does not eat them. He does not really put things to his mouth, and these look tasty.

We do not leave any morsels and so head back in to the shade as Fred is overheating. One thing we did not think of is to cover his bag of fluid which he was attached to, as well as the morphine syringe on the driver. A nurse popped out to cover them up with a towel. I guess the fluids would rapidly warm up and we would wonder why Fred had a temperature.

Once back in he nods off and settles, probably a bit hot for him out there. He flakes out and so mum, dad and Dunc head back.

I get a call from Helen Y (or is it “C”?) from Ward 34 to check how we all doing. I tell her about Fred’s antics and it is nice to chat. I am passed to Anna, and she was the nurse who escorted Fred back the other day.

Parking here is a lot easier in that you know you can find a space and is quite reasonable. It is £5.60 for the day here, when I think it is about £11.00 in Bristol. Obviously space is at a premium in a city centre and there is much more room here too generally around the site. We are lucky in that we have been given a Staff Parking Permit for us and also have a spare one which Rachel’s mum and dad have. I reckoned if we stayed in hospital long enough we would start to get staff benefits.

This means we can park out the back in the disabled bays and pop in through the Oncology entrance. Again a nice touch for us. In Bristol we were lucky to have been given a Parent Pass for the one designated car park, and this cost us £1.60 per week which was a bargain.

We do not have a television in the room, other than the Patientline multimedia centres which have been in the press recently. I think they can arrange access for us, though to be honest we have not really watched television recently. It only keeps Fred awake too. I think we can watch programs up until 2100h for free and then you have to pay for it.

It is different from Ward 34 and BMT as the kids here are all in for different reasons, other than those on the Oncology bit. There is not quite the same “community” feel to the ward in that we do not mix in one common area, so it takes time to get to speak to parents. It is good in a way as once we stray on to Fred it can be a conversation stopper

I will also (if I have not already) include some photographs of parts of the hospital. As it is more spread out here there are large sculptures and the like on view. Alongside the main corridor and wards are a number of quadrangles which feature some great stuff, though we have yet to find a way in to them.

Bristol also acknowledges the importance of art in their building programme although this was mainly small scale stuff within the building. However the “lollipops” outside the entrance are very simple and do not signify anything I found out. They must be popular as I have often seen people taking photographs of the things. The building is pretty bland, but it jazzes it up somewhat.

I have also included an image of the hospital site showing the layout. Fred’s Room is also shown on the bottom right hand of the picture and is annotated as such.

Later on Hayley and Graeme from work pop in and see Fred. He is happy to see some more new faces and gets some extra cuddles.

I head back to the Bay and meet up with Wayne and Claire for a Chinese, and a spot of well earned wine.

Day 298 (Fri 26 Apr)Sat, 04/28/2007 - 19:22 — endc011
A good night’s sleep for Fred means a good night sleep for me. We do not have the same style fold down beds here, it is one that is rolled out of the corner and folded down, and then you make the bed. It is however really comfortable and I slept well. I was not aware of the nurses coming in each time to check things, though of course there is much less things to check.

I manage to get Fred’s Homer Simpson radio going and listen to the radio overnight. Wasn’t the World Service but Nicky Campbell seemed to be on for hours, and I am not sure what channel that was.

I was woken by one of the nurses asking if I wanted breakfast to which I accepted and had it in bed, with a mug of tea. I really wanted to lie-in as Fred was doing that, but got up and packed the bed away.

Rachel came in a while later and I had a wash. Fred had woken and felt rather grotty by all accounts and was sick a few times.

The amount of morphine “boosts” or bolus’ he is getting is much less because the background infusion is sitting on the pain which is good. It will be reviewed later today and may be increased.

Kate is his nurse today and we chat to her about various things and she arranges for us to be able to have food from the hospital like an in-patient. This means I can go to the lunch trolley and get something to eat. It is a large wheeled hot plate with various portions on it, so I opt for beef goulash, chips and peas with a hot flap jack and custard pudding. All on a ceramic plate and metal knives and forks too. It was actually really nice and part of the newly revised menu so I will re-visit.

There are plated salads also and sandwiches and some pot which may have been soup. At least it saved me £4.50 or so. I dread to think how much we have spent in cafes, pubs and ready meals over the last ten months. I might try and work it out.

Fred also gets a few more visitors in the form of June, Jean and Sandra We have a good They head off to the restaurant for some lunch whilst I guard Fred.

A bit later Frances comes along, and leaves Samuel and Daisy with her mum out on the front grassed as it is sunny. Fred is still awake and jolly and soon nods off toward the end of the visit. I wander out to see the three of them and they are having a picnic on the grass. The two little ones have grown since I last saw them.

Late afternoon sees Rachel’s friend Lyn come along and she gets a cuddle. I stay a while and then leave the two of them to it with Fred.

Once back I realise that I had forgotten the ‘blog as it was left on the mobile.

Day 298 (Fri 26 Apr)Sat, 04/28/2007 - 06:52 — endc011
Today I drafted the 'blog on the laptop but did not copy it when I left the hospital, so I could not post it from home.
I will do so tomorrrow and but will post some pictures this evening.

Day 297 (Thu 26 Apr)Fri, 04/27/2007 - 03:46 — endc011
Fred had a good and peaceful night last night and so Rachel did too. I headed back to Paignton at about 2000h and was soon back. I did a few things and eventually got some grub from the KFC Drive-Thru at 2130h or so.

I have not had much of this stuff in years, though have one or two occasions visited this outlet since it opened a few years ago. It must be one of the slowest around and is quicker to either walk to the next one, or park up and get it over the counter. I am not sure how the Drive-Thru works internally but it does take time. And they run out of chicken too.

My brother and I once went to Spud-U-Like in Exeter’s South Street to have a baked spud for lunch and the staff had to admit they had run out of potatoes. That was why it was quiet.

We have another chat with Andrew (Fred’s consultant) who has looked at the pain relief and it is to be increased again. We should be able to fine tune the amount he gets so that he does not feel pain and that he will be responsive to us. This seems to be working slowly and so we all agree.

There are lots of topics that need discussing and we are given lots of time to talk about them, and everything is explained well. Generally he will pull up a few chairs and we sit around the bed talking about it.

His drugs are also reviewed and these are getting knocked off slowly. It is all about Fred being able to be off his pumps whilst still being comfortable. They are also concerned that we may not be getting enough cuddles with him and so we debate whether he is pain when jiggled about. Next time he is man handled we shall see if he needs any additional pain relief.

He is quite happy to be handled and gets some nice cuddles with Rach and is very alert and responsive. He holds his head well now, and it does not wobble about like before.

Claire visits us too for a couple of hours and this was nice. She took some photos and hopefully he entertained her well. On the way out we popped in to the charity shop in reception and had a good look around.

She went off on her way and I plodded back to the room. I have been able to pick up and wireless broadband signal at 100% strength, and it is known as “Hospital Public” and should be accessible. Unfortunately I cannot get on to it at the moment, and IT Services have said there is not wireless broadband in the hospital…… I shall continue to investigate.

We have a peaceful day and Fred seems more content now. He is much better in the afternoons really, as the pressure on his head probably reduces gradually as he moves around. There is also a tendency for the fluid to settle in one position, and so when he wakes he will not only feel uncomfortable but will probably feel sick.

When he left BMT he was on 21 drugs I think and these have now been reduced to five. These are mainly for dealing with his head problems, stomach pains and anti-sickness and also include his morphine. It means less tinkering with Fred and more available time for us to have a cuddle with him and hopefully get him out and about.

Later in the day Fred gets more visitors, this time Hayley and Kim come along in the evening. They visited Fred several weeks before his BMT and he managed to keep his beady eye on them whilst they were here. He was getting a bit sleepy by the end and so drifted off but kept and eye open just to see what was happening. I managed to catch up on the gossip in the office.

After they left I went to the restaurant to get something to eat. They stay open until 2030h and so I had breaded plaice, chips and peas which was really nice. It was a nice change to know Fred was zonked out comfortable and I could have 15 minutes having some grub before I trot back to see what he is up to. The kitchens look pretty big from the glimpse that I saw through the door and it looks like they make most of the stuff here. It is reasonable priced but the quality is good. They do a carvery three times a week and Rachel saw the plates yesterday and it all appear to have that “home made” appearance.

I get back and he is still fast asleep snoring quite loudly.

Day 296 (Wed 25 Apr)Thu, 04/26/2007 - 04:48 — endc011
We had a few more chats today regarding Fred and how we manage things here. Lots of difficult topics and things to think about that are gradually being introduced to us which I suppose is the way to do things.

On arriving at the ward I see one of the doctors from PICU who was at Bristol when he was admitted. She was one of the four that were part of their Retrieval Team who came to collect him.

I later was walking for breakfast in the canteen and another one of the doctors from Bristol came up alongside me, and we had a chat about Fred. She comes to Exeter every twelve weeks to run a clinic and I think she had something to do with the Renal Team who had an input on Fred in the early days.

Having my breakfast on level 2 I spy my colleague Roger getting a cup of coffee from the till, and he is here for an appointment. Strange to see all these people on one building.

We get some visitors today as Colin and June come to see Fred. He awakes for them and is pleased to see them but is increasingly sleepy now. He looked content. Gwen from Chagford pops in too as she has an appointment herself at the hospital today.

My brother also passes by for a quick chat and Fred gets a bit more animated. He has a brief episode of hiccoughs, and finds my brothers impersonations of him hilarious.

They are extensively reviewing his drugs so that he is disturbed only occasionally and we understand this. Again we are consulted about what we want, as we obviously know him best and this is nice.

I head home again tonight to sort a couple of things, and hope he will have a peaceful night.

We are staying at the Royal Devon and Exeter Hospital, Exeter, on the Bramble Ward. The ward is divided into teams and Fred is part of the Green Team. If anyone wanted to visit contact us first but it is accessed via the main entrance on Level One and is in the “H” area. Those that have already asked to visit, I will try and respond as soon as possible once we find our feet.

Day 295 (Tue 25 Apr)Wed, 04/25/2007 - 07:35 — endc011
Today was always a bag of mixed emotions and one which we were both very apprehensive about.

Fred went to theatre at about 1100h and we took him down there for the final time. He was very alert on the way down and even he looked a bit worried. He emerged a little while later fast asleep and so seemed content.

We chatted to a few staff and parents in the few hours afterwards and soon the time approached 1500h. A few more came in to say the goodbyes, and I think we are getting used to it now. Or least I can keep the blubbing at bay a bit more easily.

At about 1545h I heard the entry phone bell go and guessed it was the ambulance crew arriving for some reason, and a few seconds later found out indeed it was. There were a few gathered outside the room, not necessarily to see us off but because the trolley was blocking the way.

This was very reminiscent of how it all started ten months ago – the ambulance crew coming to take him away. It did not take long to get used to the idea and soon he was on the trolley wrapped in a knitted blanket and strapped in securely. A few more difficult farewells and we headed out of Level 5 for the very last time as a family. Down in the lift through the main entrance to the waiting ambulance.

Anna is escorting Fred today and Rachel is a passenger too, to keep Fred under control. I give him a couple of kisses as he peers around the ambulance looking a bit startled by it all. Back doors close and they head out of the hospital to join the traffic. The wrong direction mind, but that was corrected later.

I had his pram loaded with the remainder of our gear and left it in the reception office whilst I went up to the house to collect the car and our bags. I said more goodbyes there and it was starting to get difficult and I really wanted to escape by then.

However, not so easy but soon was passing over the Clifton suspension bridge, and joined a queue of traffic onto the M5.

It takes a while to get there and I am anxious as to what we will find after being used to Bristol for so long. I put my money in the machine and eventually find my way to Bramble Ward, and see Fred is in Room E with the Green Team. He is in his cot and fast asleep as usual.

We meet his nurse for today Claire, who seems really nice. A couple of cups of tea later and we meet his consultant Dr McNinch. He seems like a very nice chap and after a few minutes we both warm to him. He explained what was what, and tentatively went through all of the inevitable stuff about outcomes and what they can do., He made it very clear that we were part of the decision making process and we all agreed that it was all about making Fred comfortable and as happy as he can be for the time he has left with us.

This was a really useful discussion and helped us a lot. There are lots of things to talk about over the next few days, but we really feel he is still in safe hands.

I also feel it was the right decision to head home when we did, as psychologically Fred is “home” in Devon. We have our own room near the nurse’s station and there is not any city noise. There is not any constant wailing of sirens of ambulances coming in and out of the hospital, and outside it is totally quiet. With the window open, we can hear the birds singing and it’s a very relaxed atmosphere for us all.

Bristol was for me all about treatment and a cure and all the hope that goes with it, and Exeter I think is about realising and understanding what will happen, and helping Fred find peace and comfort as best we can, and so to change now feels right.

The staff we have met are all friendly and have local accents too. They know the area like us, and just makes it a lot easier for us all, including our families and friends too I hope.

The hospital is older but has a friendly feel to it and is familiar too. Having been there a few times to see relatives also makes it like coming back home in a weird way.

There is a canteen that stays open until 2000h and a well-stocked shop that is open until 2100h. As Bristol there is a Parents Room with inclusive tea, coffee, milk and bread for breakfasts, which can be brought in for you in the mornings.

The room is a funny shape and we will be moved to the adjacent one tomorrow, which makes it easier for the parents bed to be positioned. It will have an en suite shower too, and has a door directly into the little garden at the rear.

We head down to the shop to get some food and a drink and chat with the Sister who is looking after Fred and Rachel tonight. She seemed lovely too, and so I leave Rachel and Fred so that I can take the remainder of our stuff home. I have a lot of Fred’s things, which need storing safely and do not want them nicked from the car in the car park

Tomorrow we will get a pass for the free parking and will meet the rest of the team.

We shall miss our friends on Ward 34, but are glad they saw Fred go off as we would have wanted them to remember him like. He was alert and looked, well, very….Fred-like.

Just before I left, he perked up and did a few smiles and gurgles, which I managed to photograph, but they did not quite capture his cheeky chuckle.

I will head back tomorrow and hopefully Rachel will take some time to head home over night.

I am not sure what will happen with regard to internet access. We will have to wait for the electrician to check the laptop and other stuff. I hope he will arrive promptly and we are still awaiting for the Bristol electrician to inspect our stuff some ten months and six requests later….

I have located some of my “stinky noodles” as Emma refers to them as, as I can snack happily on them. Fred is not partial to much orally now, but he can watch and wince as the chilli takes hold.

Day 294 (Mon 23 Apr)Tue, 04/24/2007 - 04:16 — endc011
The morphine PCA enables Fred to be able to get some sleep and remain settled. It is only pressed when required and is used on average every two hours or so . At the moment it can be pressed up to every thirty minutes and deliver a 1ml slug of morphine which seems to work.

Overnight he is quite happy, stirring a bit noisily at 0500h. He is still a bit sick now and then, but this seems to have subsided with the anti-sickness drugs.

Rachel, one of his nurses in for the “twilight shift” up until around 0000h, and I say ‘bye’ to her in the early hours. It is heavy going for us all in different ways. I did not manage to see Charlotte before she left as I had fallen asleep again after Fred’s early morning call at 0500h. She was another Fred fan. In fact there are a few I did not say goodbye to and I hope to be able to do that somehow, perhaps one day.

In the morning the anaesthetist comes in on his “Pain Team” rounds. He assesses Fred and decides that having a background infusion of morphine will keep Fred’s pain within the “therapeutic window” and so adjusts the pumps accordingly.

The yesterday I managed to dust off all the remaining dry sand from the plaster imprint of Fred’s foot, and it has come out really well. As the plaster was poured onto the sand, the texture has transferred to the cast, which is much better than the smooth finish I thought would appear. We will get it fixed to a back board and framed so it does not break.

Seeing the print emerge as we dust it off reminded me of some a poem/prayer I saw, probably about 12 or 13 years ago at party in Brixham. It was in a frame, hung on the stairs and I had not come across it before, but it stuck in my mind. It’s titled “Footprints in the Sand.” Since then I have seen it a lot and is a popular and well known verse. It may well be a bit “old hat” to some of you, but in the circumstances I have located those words again, and they are below:

One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand: one belonging to him, and the other to the Lord.
When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints.
He also noticed that it happened at the very lowest and saddest times in his life. This really bothered him and he questioned the Lord about it.
"Lord, you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don't understand why when I needed you most you would leave me."

The Lord replied "My son, my precious child, I love you and I would never leave you. During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you." By Mary Stevenson 1939

Rachel packed a lot our stuff last night to head back home. We have separated our bags and stuff into the things we will carry to the R D and E, and stuff to head home. Many of Fred’s toys and clothes that we will not need now are ready to head south. My brother comes by this afternoon to see Fred and we have a bit of fun with the three of us. We receive a couple of christening cards too which was nice. Duncan takes the rest of Fred’s stuff with him which we will deal with later.

We say goodbye to a couple of other staff, Mary from Hotel Services. We normal see her on the stairs keeping the seven levels spic and span, and have a little chat. Whilst many of the staff have come into the room to clean the place down they have always stopped to see Fred, who has over the months rewarded them with a grin and a chuckle. Many of the staff we did not know at first had heard of him, and when in the corridors moving him in his pram they would greet him. Again he would entertain them with his flirtatious behaviour. That is his trademark and he loves it. Tina from Hotel Services also pops by to say her goodbyes, though we may see her tomorrow.

I get back with an array of bags enclosing the last remaining bits of the room in the hospital. The foot and hand print canvases, the plaster imprint plus all sorts of paperwork relating to him are safely stowed, double wrapped as best we can.

His theatre slot was dropped today, as was everyone’s for some reason. This means a delay for us tomorrow, which we are not best pleased at. We are assured that he will be transferred at 1500h tomorrow by ambulance without fail. However I suspect if there is a problem in theatre we will be delayed once again. We have stressed that we want to go tomorrow whatever.

Just before I go we are chatting with Jamie, who was one of the nurses, and Michelle came in to say her farewells too.

I have returned to the house now to sort our final belongings and these are now packed and lined up by the bedroom door.

Tomorrow will be the strangest and possibly the most difficult part of these last ten months so far, bringing our one year old son home by another ambulance, where hopefully he will find peace.

2007-04-23T18:39:00.000+01:00

Day 293 (Sun 22 Apr)Mon, 04/23/2007 - 03:55 — endc011
Rachel said goodbye to Rachel this morning early. She was the nurse who came to Fred’s christening the other day and I doubt if I will see her unfortunately.

Fred is rather unsettled overnight and is obviously in some pain. It would appear that he has some ulceration to his stomach and this is giving him the pain. He has also got some pain in his mouth and is likely to have some irritation to the brain if the pressure in the CSF is up.

As he gets older his cries are slightly different, and we do not want him to roll around and be unhappy. The anaesthetist is bleeped as we would like to amend his pain relief as it needs doing. He is in theatre at the moment and Fred manages to nod off for the time being.

When I coming back along the corridor he is walking towards me and we have a quick chat. He comes in to see Fred who is again fast asleep and looking very content. He agrees that Fred needs the next step up and we get morphine IV via PCA (patient controlled analgaesia) which means every 30 minutes Fred can have access to a 1ml slug of morphine. It works well as we do not necessarily want Fred getting it when he does not need it.

It seems to work well and allows him to flop around the bed and kip when he wants, and thus makes him more relaxed.

He is vomiting more now, and it is really just “old blood” from his stomach. It has a coffee grounds appearance and it better out than in of course. He is quite happy once he has got rid of it. He does love having a pink foam lolly soaked in water poked in his mouth and suck it like mad. Makes him sick though, but at least he enjoyed it.

The weather is bright and breezy and I head into town to get something for tonight and some lunch for the both of us. It is quiet on a Sunday and I am bawled at by a gaggle of teenage girls in a ghastly pink stretched limousine that is making its way through the traffic. The odd things with these things is no one can really see who is in it (which defeats the object of hiring it), so the only way for people to notice is for them to look out and make a noise. Trouble is the only window to open is the back one and they only come down about 8 inches or so. They try desperately to catch my attention as it slowly moves by.

I turn to see three contorted faces jockeying for a position in the tiny opening, each trying to outstretch an arm without much success. It reminded me of a sight I saw in Egypt where relatives deliver foodstuff to the inmates at a local jail, and do so by passing it though the bars in an opening of a wall by the pavement. All you could see were the prisoners arms frantically grabbing at the stuff as it came close to them.

I collect some food and wait in the “5 items or less” queue only to have someone in front with nine items. Instead of sending him off to the back of another queue he gets processed without comment which makes my blood boil.

During the day Fred remains asleep but needs his PCA every 1.5 hours or so. Once we get used to it we will know when it is the time to give it to him. He does wake up and bawl anyway, so I guess we will just have to wait to see whether he is being grumpy or whether it is real pain.

The doctor comes in today to have a look at him and we discuss a number of things. She mentions that Fred may not go to theatre after all, as his name is not on the list and it is full now. He was due some IT Methotrexate I think, plus a LP. I hope he gets it as we do not know what happens at Exeter.

We have started taking things back to the house so as we do not have too much junk left in the room. I still tick off each day on the “Bone Marrow Transplant Flow Sheet” we were given on Day Minus 8 when we were admitted to BMT Non-Iso. It has various key dates and treatments on which we viewed with curiosity when we got there. One thing it did does have a précis of his time from July 2006 to February 2007, summarising his treatment in ninety words or so. It reads:

Diagnosed with infant ALL – July 2006. WCC 917. Had spontaneous tumorlysis. Immuno: Pro-B ALL. Cytogenetics: MLL gene rearrangement. Started chemo. 08.07.06. Had renal failure requiring haemo-filtration and ventilation. Seizures due to left MCA and PCA infarct. Developed chronic tubular dysfunction with Na*, K+, HCO3, PO4 and CA++ wasting. Had pseudomonas sepsis requiring Hickman removal. Harvest showed 60% blasts. Received Cyclo/Etop (R3 consolidation.) BMA then showed 3% blasts. Acquired C diff. and Norwalk virus diarrhoea which has cleared. Enterobacter and Enterococcus sepsis needing line removal again (Jan 07). Now in remission.

It sort of translates as (remember it is only my own woolly understanding and is likely to be wrong in places):

Fred was diagnosed with Acute Lymphoblastic Leukaemia, a type found specifically in infants, in July 2006. His white blood cells count was 917 when it should have been somewhere around 10 – 15. Once treatment started he experienced tumorlysis, a condition where the cells break down far quicker than the body can tolerate, thus releasing toxins which need to be managed. The type of leukaemia is Immuno: Pro-B, and the cause was a rearrangement of a gene. His chemotherapy treatment commenced on the 8 July 2006. After that time his kidneys started to fail, and his blood was filtered by a machine which takes it out of the body, and returns it filtered, minus the bad bits. He also had some help breathing with a ventilator during his stay in PICU. He also had a couple of fits and scans showed some bleeding to the middle and back left of the brain. His kidneys then started to leak some of the body’s various chemicals - sodium, potassium, bicarbonate, phosphates and calcium. After that he contracted pseudomonas, a nasty infection in his Hickman line which ended up being removed in theatre. When they took a harvest of bone marrow in December (in preparation for the marrow transplant they take some Fred’s marrow and store it for later use) it unexpectedly showed the leukaemia had returned suggesting a very high percentage of the immature cells. His relapse was treated with Cyclophosphamide and Etoposide chemotherapy drugs. Following that treatment, a bone marrow aspirate showed the blast cells were at only 3%. After that Fred contracted clostridium difficile and norovirus, which is a bug. I think the media like to call them “super bugs” but they are bugs that you do not want hanging around really, especially if you are vulnerable. Following that he grew Enterobacter and Enterococcus bugs, which I think came from the stomach, into the blood and decided to attach themselves to Fred’s recently replaced Hickman line. That line was removed by theatre late one night as an emergency. After all those events they considered that Fred was then in remission.

Sadly the final paragraph is now longer correct.

I take the opportunity today of finishing the “Fred’s NHS Cash Cow.” I attach the lashes and the ear tag, and give it a pair of eyes. I shall have a method of opening it, as I do not want to take the money out that has been put in. The world will now see, for the first time, all my efforts which started in BMT weeks ago. Rachel has been my Art Director when I am unsure of what I needed to do. Also I must thank some of the staff for their assistance and encouragement for me to finish the thing when I started to flag. I would also thank the NHS for the various bits of things I used whilst in isolation which were only going to be thrown away anyway.

As the day of departure gets closer it is a sad feeling. We have been here over nine months and have had to settle into a routine. We are leaving not in the circumstances we had all hoped for, and it is a very strange feeling. Usually when you move, it is for a reason that can look forward to, but it means we have got to the next stage though not the end. Of course, we do not want to stay here any longer than we have to really because there is nothing left for us here now. We will leave behind a lot of people who have helped us and have looked after Fred, and I regard most of them as my friends, some more than others which is inevitable. All have been brilliant though and for that I am truly grateful.

I wonder what the R D & E will be like, and we will have to start all over again with them. This time however we are armed with knowledge we did not have on Day One, on July 8 2006. It would have been a good idea to get Exeter to read the ‘blog beforehand so they can see who we all are and how precious Frederick is to us all. However we will have to go through the first few days answering that question “so tell me, how did he present…..?”

Day 292 (Sat 21 Apr)Sun, 04/22/2007 - 04:54 — endc011
These “goodbyes” are becoming a more regular event now, which makes it increasingly difficult for us, but need to be done to say "thank you". Last night Charlie headed off after work as she had looked after him on Friday. She is off for a week now and she took the photo of Fred’s dummy lying on his ear. Fred will miss her odd (but dry) wit too, as will we sadly.

Fred manages his first smile in a while when Rachel comes in this morning just after 0830h. He has been very settled but is asleep most of the time now. This has its advantages and disadvantages of course. It is good to see him sleeping and being peaceful, but we are missing the noise and activity of “normal” Fred as he once was. Smiles are severely rationed at the moment too. He is desperate for a drink most of the time and is now thirstily glugging on his oral meds.

He gets his normal amount of Oramorph, which is every four hours, with extra doses every two hours if necessary. I guess this, plus the other drugs, are making him so sleepy.

Today we head in to town with him. He looks about at the people rushing by and regularly nods off. The sun shines on his little bare hands and feet, hopefully warming them up a bit and making him feel like he is back in sunny Devon. He is also wears his little blue sun hat to keep the sun out of his eyes. Rachel manages to locate some false eye lashes from Superdrug for £1.49 and I get these to try and finish Fred’s Cash Cow which should be revealed before we leave for Exeter on Tuesday. Only a few people have seen it so far, and I think they are impressed. Fred, however, has shown little interest but may perk up when I put some money in it for him.

When we get back to the hospital mid afternoon, we learn that his nurse Sarah has gone home sick, which is another sad thing. I think she wanted to see Fred before she went. She is another long term Freddie fan and I hope she is on again before we all go on Tuesday.

A few days ago we tried various ways to make an imprint of Fred’s foot which I may have mentioned. We tried play dough but opted for damp sand instead, and poured on the plaster of paris. As the sand is damp anyway, we have waited for the thing to dry as long as possible so it does not break. I will try and post a photograph of the thing as it is slowly revealed. The one I took today should show the little toe appearing in the foreground with the other just behind. It is a bit like one of those “dinosaur” archaeologist sets you can buy for children, where you chip away at the solidified sand and find a relic.

Sam the play girl made a Lego “bund” on a base and lay 10mm of damp sand, floated smooth. Freds imprint was quite good and so in went the plaster. Yesterday we tipped it upside down, took the Lego away and then have been letting the sand dry naturally, before brushing it away carefully with a brush bit by bit.

We also notice Fred has anther tooth appearing on the front top left central incisor and looks a biggy. Another reason he must have been in discomfort poor lad.

We get a visit from Linda and Mike who are visiting Mike’s son who is in PICU on Level 4 at the moment. Fingers crossed for them too please.

We also get a visit from Hayley, one of the nurses who looked after Fred in PICU and she is one of the Outreach Team from there, who visit wards to assess patients who are on a list that suggests they may need to be transferred to PICU at sometime. Fred in the past has been on and off that list quite a lot, ‘though today is a social visit, after they became aware of Fred’s situation.

When I get back I start packing the remainder of our clothes ready for the journey back. We have not accumulated the same amount as others, but it is an opportunity for us to jettison stuff that is old and tired and is no longer needed. I chuck out quite a few T-shirts and a some trousers and will use it as an excuse to get some more someday when we are back, or indeed when I need them I suppose. I have managed to keep the filing under control here too, as I have taken stuff back gradually each time I have returned home.

It is an odd business trying to keep on top of bills and correspondence here when you really do not have the time and facilities to do it the same way as you would normally. Only a couple of slight problems here over the time, but nothing to worry about. Direct Debits are marvellous things in this situation, as you do not have to think about silly things like bills, but need to watch that they are right. These utility companies are almost as bad a mobile telecommunication companies at estimating your bill for you and general crummy customer care.

Not much else has happened today again, with Fred remaining as he was but much quieter. Today I suppose was OK in a way and it was nice to find another toothy-peg.

Day 291 (Fri 20 Apr)Sat, 04/21/2007 - 01:48 — endc011
Fred enjoys his last music session with Julia, and percusses with his maraca and tambourine. He enjoys this time and shuffles his feet too. We end by singing “The Wheels on the Bus” and he is beginning to doze off by then.

He is due in theatre at 1130h and shortly after 1145h we get the call. He is plopped into his pram and makes the journey he has done so many times before – down in the lift to Level 4, out of the lift turn left, through double doors and turn left. Swipe card through the double doors signed “Theatres” and through the automatic doors to one of the rooms. I stay in reception and wait whilst Rachel goes in with him.

Today his nurse is Charlie and they are in there for five minutes or so. It is a strange reception area in that it is usually unmanned and people in blue scrub suits and theatre headwear flit through. Some are carrying little polythene bags with bits of equipment in, presumably heading for theatre. Some are into the “designer” clogs and headwear, others are not.

Charlie and Rachel emerge Fredless and we head back to the room to wait for Fred. It is not long and we go back down. Again the two of them collect Fred.

He emerges on a trolley with a porter guiding the machine. The lifts are slow again so we decide to use the service lift in the bowels of the building. Fred is quite chirpy again though.

Whilst the anaesthetist was holding him he bled from one of his ears. This ear has had a suspected infection for some weeks, and it appears that he has now got a perforated eardrum. They took a sample of the gunge several days ago and it came back negative, but we hear that another test came back as a fungal infection. I do not know what treatment he should have had but was not grabbing his ears, so hopefully was not in any pain because of it.

He will get some ear drops and some antibiotics in the day to deal with it.

After lunch we take him out up to Whiteladies Road and the Triangle. He watches for a while and then sleeps. We come back through the park on a very sunny day.

Once back he settles and hopefully this will continue.

Michelle comes in late afternoon to discuss the results of the tests and explains the number of leukaemic cells in the sample has gone from 10000 down to 700 and will hopefully continue to decline so as to keep Fred comfortable. Once back in Exeter we will also have a better idea of their plans.

Today was not too bad really.

Day 290 (Thu 19 Apr)Fri, 04/20/2007 - 04:29 — endc011
The pain relief seems to work in that he slept for 14 hours solid overnight and I did well too. He did not require any morphine for 24 hours either which was nice, as he was also getting some paracetamol and other stuff too.

He was again the best he has been for a long while. No NG tube and very chirpy, actively watching the world and participating. The other times he can be a bit grumpy but this could be tiredness.

The day was full of ups and downs for us. As we approach departure it means that some of the staff will not be on until after we have gone, meaning they will not see Fred again. This makes things difficult for all, but is inevitable. I had a long chat with Heidi this morning and Fred was happy to dish cuddles out in the early morning. We shall miss our long chats whilst she does Fred’s obs. and used to happily feed him by his bottle when he was admitted at about 16 weeks old, once he had come up from PICU. Fred obliges by being his normal self.

In the morning we get Sam the playgirl in and we try out various methods of taking a foot print in plaster of paris. Our first attempts at plaster on playdough almost work and so we try again. During the process we are distracted by one of the alarms going off on the pump, and by the time we carefully press Fred’s foot into the stuff, it is rock-hard.

We then discuss an alternative and use dampened sand in a try and try and make a positive print. He does it well, and Sam manages to pour the plaster in the tray. Tomorrow it will be unveiled and hopefully will be another memento of Fred’s hands and feet.

He is still quite sleepy but we have a coffee with Sheena across the road at lunchtime which was nice. It was a lovely hot day and Fred sat in the heat quite happily. We watched the BRI be evacuated as usual through the fire alarms going off.

After that we went into town to get some stuff before returning to the hospital for some late lunch.

We later learn that Fred may not be transferred to Exeter on Monday and it could not be Tuesday. At first this does not appear to be a problem, but we have been delayed once from Friday. It will 10 days since we were told he only has a short time left, and we are losing time rapidly. What if there is another delay or a bed is lost at Exeter?

I had a chat with Helen, one of the CLIC Team at the R D & E and she explained the situation. As Fred id norovirus positive still he will be barrier nursed in isolation. She explains that we will be able to come and go and have visitors. We discussed sleeping arrangement and touch on the subject of coming home with him. I think once we are there we will be able to explore things further.

However we try and make the point that time literally is running out for our son and we really want to get him back into Devon and not to languish here. He is fairly “low maintenance” from a nurse point of view I think, but may be wrong. We will have to see anyway.

At the end of the day Fred goes down to meet young Ellie. She is just over 21 months and is looking stunning in her flowery summer dress and short blonde hair. Their eyes meet in reception and a look a terror comes over Fred’s face. Remember he has not really met other miniature humans and being this close to one who is equally curious is a bit off putting for him.

After a few seconds though, I am sure their love grows a bit, and they peer at each other. Before long Fred is being clambered over by young Ellie, and a few kisses are planted although Fred is still restrained by his straps in the chair. They seem to be comfortable with each other after a while and we are pleased that Fred has met this “old flame.” He first met her in CLIC House in August or September last year and Ellie took an interest in him then. She used to pop into the flat to find him in his armchair and give him a kiss goodnight. She is very gentle with other little ones and really is very nice to him. I shall post some photographs a bit later on.

I think each day will become a mixture of extremes from now on, as it very easy to forget that Fred is so ill. He looks perfect, and behaves like a little one year old. I put this down to the massive reduction in the drugs he has been having, and him being able to feel normal for a bit. Then you remember where we are heading, and it spoils those moments a little.

Day 289 (Wed 18 Apr)(Day Plus 64)Thu, 04/19/2007 - 07:09 — endc011
Fred had a very settled night with Rachel and this continued through the day. He is getting the right balance of Oramorph and other pain relief which allows him to enjoy what’s going on, and for us to enjoy him. He sleeps happily too which is a real blessing for us all given his recent discomfort.

Today was a lovely day for us as we decided to have Fred christened at very short notice after having a conversation with the hospital chaplain. We have seen him a few times over the last few days and his team are regular visitors to each ward in the hospital. No matter what your belief is they come along and have a chat if you wish. After nine months they are regulars to see Fred and us, and are lovely friendly people to talk to about various things, or just gossip. During one of the recent conversations we raised the query of having Fred baptised and learnt it could be done instantly, in the room, or in the Prayer Room on Level 4 whenever we want.

We decided to just do it without any planning at all and had it this afternoon at 1500h in the Prayer Room. By not planning it turned out very well actually as a number of coincidences made it a lovely day. Our friend Frances was not working today and was due a visit, and so she is now Frederick’s godmother. At about 1430h my brother, Duncan, rang to say he was on the way back from Birmingham and may do a surprise visit at about 1515h. As Dunc did not know about the event I mentioned it to him. He put his foot down and eventually arrived just after 1500h, a bit sweaty and out of breath after having to run down the road to the hospital. Duncan is now a godfather.

Also present were Rachel his nurse for today which was another good thing. Rachel has been looking after him after all these months and we enjoy our banter with her and she has been really lovely. By chance the chaplain was talking to Julia (the music therapist) and she thought we might like some music….. We had some guitar plus a bit of singing, followed by a tune on the recorder.

It only took 20 minutes or so, but was a truly wonderful experience and not the situation I was dreading as I thought it would be really difficult for Rachel and especially I. By having family and friends around us at that time made it so special for us. Fred was happy with it all too. When the water was dribbled over his head and ran down his face I thought he would open his mouth to pinch a bit of water as it went by, as he has just started taking water again happily.

Afterwards we had some tea brought into Fred’s room afterwards which was a nice gesture by Sheena the ward clerk. After that one of the children’s grandparents (Lucie) came in with some Marks and Spencers cakes and savouries which was another very touching gesture. Our cobbled together ceremony had turned into a perfect event and I only had a pair of wet eyes for a minute.

We had planned to have Fred christened last year, probably in Chagford and around September but events took us by surprise. We did not really think seriously about this until the last day or so, as time is running out. There are some things you think you can put off until tomorrow….

I should have put some photographs on by the time you read this.

Wayne came along to see us at about 1730h or so and that was lovely to see him. He was coming back from Cromer so thought he would see the little fella. I took him up to the house to see our “pad” and he bumped into a few of the residents. He very kindly took a few of Fred’s toys back home as we will be heading back on Monday and space will be limited.

Today Fred has also looked the best he has for a long while, and has felt good too. No NG tubes either means he looks his beautiful self, and his hair is coming back to a fluffy down and is nice and dark.

David Gate visited today and we had a nice long chat. He said his goodbyes to Fred (as he slept oblivious) and I thanked him for coming.

At the moment Fred is fast asleep and snoring. I am doing the ‘blog and will get my last kebab as again I have not prepared myself for what to eat. I looked in a couple of the photographs and think I may be getting a more porky….

All of the messages we have received either as comments on the blog, by email, by text or by card are appreciated by us, and we really do mean that. There is quite a number sometimes and we might find it difficult to say “thank you” properly. I usually try to send a response every now and then but may not be able to this time, so bear with us. As I say we do love the comments from everyone. I also believe that each of the other ‘blog followers secretly look forward to the comments more than my occasional inane ramblings sometimes.

It is the end of a good day really.

Day 288 (Tue 17 Apr)(Day Plus 63)Wed, 04/18/2007 - 06:21 — endc011
At times, Fred’s discomfort means he is unsettled for periods of time and this usually happens during the night. He gets his pain relief in the form of Oramorph but this does not always synchronise with his other drugs. It has been one of our concerns for a couple of weeks now that Fred should be receiving slightly more than adequate relief as you will recall, and it is absolutely heartbreaking to see your son in apparent agony for short bursts of time without any immediate fix.

I wake up to Rachel coming into the room and peering at me. It is 0845h and I have lost track of time once again and flop out of bed.

Today we spent quite a while discussing with nurses and doctors what will happen to Fred over the next few weeks depending on the state of his disease. As we said in Saturdays ‘blog it is now only a matter of a couple of weeks, maybe more, before he goes. He went to theatre this morning to have some spinal fluid drained which should alleviate some of the pressure causing him discomfort at the moment. They also did some more tests on the CSF to see how it is developing. We learnt the results later and they confirmed the leukaemic cell count had increased since Friday suggesting the disease is advancing. I had naively hoped they would say that there had been an error in the tests and Fred was all clear after all. But that would have been a silly dream really. It means it is increasing and they give him some Methotrexate which will hopefully control or subdue it, plus they plan to give him some Vincristine later, maybe Friday.

As we wander around doing our every day things on the ward, I catch snippets of conversations and telephone calls as the various staff investigate what terminal care Fred can have at Exeter or possibly at home. It is a horribly strange situation to be in, relying on these people to co-ordinate his future, though comforting in a way that these people (whom we have known for nine months) are doing it for Fred’s welfare and wellbeing.

We do not know what is required, and at this stage do not know what is on offer for us and we will learn as we go along.

He goes down to theatre mid-morning and comes back fast asleep on the trolley. He looks very peaceful and I think this is the penultimate time he will travel this well trodden route. We have reached a point where invasive surgery is now being questioned by us, as we want to really let him rest now, but I think these procedures today will give us an idea as to how long things will take.

He is quite jolly after and today we have planned to take some prints of Fred’s little hands and feet. I have got two blank canvasses and have liaised with Sam, the play girl. She has got her poster paints out and we choose a design and the colours. Fred is plonked on the floor on a blanket and he finds the whole thing very amusing.

Sam paints his hands and feet in turn and we get the canvasses down gradually. The larger canvass is one of Rachel and my hands in each corner, with Fred’s touching ours in the middle. They look pretty good to me and I will do a bit of subtle sign writing on them in a corner I think. Most are perfect prints but Fred managed to squish his hand, or try and slip a foot away, making the print a bit more “alive.” They look good and I hope to be able to get some Plaster of Paris tomorrow and make some imprints of either his hands or feet, or perhaps both.

Later in the afternoon we had a meeting with Kate, the ward sister, and the CLIC social worker to discuss Fred’s future in more detail. We have some options and it was initially Friday we were heading back to Exeter, but this is unlikely now. Unfortunately not all areas are geared up for terminal care, especially of someone Fred’s age and the anticipated care he will need when the time comes. They are concerned that we might find the level of care different to what we have here and what we expect. Here in Bristol is a regional centre, receiving cases from all over the world and I suppose is funded accordingly. Other hospitals do not have this expertise readily available because Bristol has the staff and resources instead.
It looks like bringing Fred home is not an option for us as there simply is not the medical back up available in Torbay. If we had problems we would have to head back to Exeter possibly in the dead of night. Weekends and out of hours are not covered by CLIC nurses and only by the local GP I understand which would not be acceptable for us or Fred’s needs. Our aim is for Fred to be looked after and we do not think we could do that properly at our home as the complexities will increase as he deteriorates. There will be times when things will become very difficult and we will need assistance and if it is not there properly we will not be helping Fred.

We were a little disappointed at the level of terminal or palliative care available for Fred at home, as it seems to be geared for adults really. We knew that Fred’s illness meant he needed specialist care from the outset, but would have thought that there would be some form of 24 hour support so he could return to Torbay Hospital or home to make things a little bit easier.

The government is pushing hard for births at home, though dying at home does not seem to be on the agenda. I am not sure which is most important to most people, but for us it would have been nice to be able to flit between Exeter R D & E and home somehow.

It is a heavy subject to keep focused on especially when Fred is lying on his bed next to you as you discuss the various options for him. Today was another difficult day - of new topics for us - and it is becoming more apparent to me that there is more to this whole thing than I realised, and that I will soon be out of my depth…

Day 287 (Mon 16 Apr)(Day Plus 62)Tue, 04/17/2007 - 02:54 — endc011
I had a chat with a couple of parent’s last night and a few glasses of wine on the decking at the house which was good. We all have slightly different situations here but we all fear the worst.

I plodded down the hill and got some breakfast on the way. When I get in Fred is awake and cheery, and Rachel is in the shower.

We get a visit from the hospital chaplain and chat about a few things which was good.

He is due to go to theatre later today hopefully in order to have a LP and have a dose of Methotrexate intrathecally. This will hopefully ease any irritation on the brain and the little bit of chemotherapy will hopefully knock a few leukaemic cells out.

We have today started to think about Fred’s return to Devon and it looks like the R D and E Exeter is our destination in the first instance. They have the “Shared Care” link with Bristol and at the time of writing they were willing to accept Fred.

Torbay Hospital does not appear to be suitable for Fred due to his complexities, but we did some research into places like Rowcroft Hospice. Unfortunately they only take adults, or at least people over 16 years of age. We also looked into other hospices for him, but the only one really is the South West Hospice near Barnstaple, which is not really our area.

What we would like is to come back with Fred to home, but it is more complicated than that in practice. CLIC nurses can visit but until we know what medicine and treatment Fred will receive from Exeter it is best to go there first.

There is talk that he will be transferred on Friday all being well and that will be by ambulance. I shall probably follow on afterwards with all our stuff in the car if Rachel is allowed in the ambulance for the journey back. We were not allowed in it on the way up, but there were four staff on board that morning.

Mum and dad visited today and we all enjoyed Fred’s company and hopefully he enjoyed ours too as he was very jolly and had a cuddle with all. We were hoping to get out into town or somewhere to eat although the prospect of theatre prevented that.

Fred got some platelets in as well, again ready for theatre.

Today Fred looks really well as the pain relief has been increased to a more sensible level, and he can concentrate on being our normal Fred. Lots of chuckling from him, and rolling, plus lots of waving his arm. He is still happy to do a “high five” repeatedly and at the moment he is enjoying mum and dads bus ticket which I gave him. He has found it intriguing for the last thirty minutes or so.

He did not get to theatre in the end as he was pushed off the emergency list so will go tomorrow. It is likely he will have an NG tube re-inserted in theatre as well to assist with the safe depositing of his Oramorph. You might recall from a couple of previous ‘blogs theatres do some odd things, and not doing things as requested. The NG tube is a soft flexible tube, about 85cms long that is slipped in the nose and down the throat promptly. To be able to do this, it has a steel cable stiffener in it so it does not crumple up on the way down. Once it is in the stomach (you measure him externally) you take a syringe and draw back the stomach fluids up through the tube with the wire in place. If it tests acid then it is where it should be. Then the stiffener should be able to be pulled out, leaving a much more flexible tube in place that Fred will not notice.

On a few occasions he has come back from theatre with the tube untested and the wire still in, which is uncomfortable for him as it weighs more and swings around his face angering him. This causes annoyance for the nurses too. In the past it means that the tube has to be pulled out by the nurse here on the ward, and reinserted. The idea of it being done in theatre is that he was under the GA.

Anyway, tomorrow will see him go back to theatre (hopefully) and we shall see if they finish off the job properly. Rachel will be seriously seriously annoyed if it comes back as before and made this clear to Charlie, Fred’s nurse for today. She did pass on Mrs Wills’ request by including it to the paperwork that goes to the theatre…… Watch this space, as they say.
Hopefully tomorrow we will be able to sort some more things tomorrow.

Day 286 (Sun 15 Apr)(Day Plus 61)Mon, 04/16/2007 - 04:04 — endc011
Neither of us had much sleep last night as it was so hot and we took it in turns to sleep on the bed. There is a reclining chair which is very good, but not the same as a soft bed.

The same thoughts go around and around in your head and means you cannot sleep anyway properly. When you do, you realise what’s happening and was not a dream that you were having.

Fred gets quite grumpy at times and they explained yesterday that the leukaemic cells in the fluid around the brain were probably causing him irritation and were probably the cause of some of his very subtle changes we saw. In view of this they will increase hi pain relief to keep him comfortable.

When they did the lumbar puncture they would have taken away a certain amount of fluid (thus reducing some of the pressure) which may have explained why yesterday Fred was quite chirpy.

They will think about what to do in detail early next week, but today we have been talking to the staff about the subject and have started to think about and discuss various plans we never dreamt we would have to. We feel very similar to when we first came here in July 2006, when the weather was the same as well. Then, we did not know anything about the disease or what was to happen, but as we got used to things, hope began to give us something to look forward to.

When Frederick relapsed in December, the shock was similar, but we were more prepared in one sense as we felt we would be able to get him back into remission, and then just whizz him into a bone marrow transplant, and that would be his best chance for survival. Many people do not have that chance given to them, and for that we will always be grateful. To run out of time beforehand would have been another thing to fret about.

Yesterday’s news had the same impact as July 2006 but of course this time there is not a protocol of chemotherapy as a safety net, nor a bone marrow transplant in the offing. Fred’s treatment had run its course, and has not succeeded.

We were given realistic statistics that suggested the likelihood of the disease returning within one year was very high, but not a few weeks after the transplant. Once you get past the one year bit it is a milestone and then you think you may have turned the corner. It just indicates how difficult this disease is to treat, and I would describe leukaemia like a “liquid tumour” that spreads everywhere.

We do not know how we will get through the next few weeks as in the past there was always a glimmer of hope there, and now there is none whatsoever.

We have seen a few of the other parents today, with some hearing about Fred and some not. It is a difficult situation in the hospital as well, as I suppose having parents of a relapsed child in their midst does not do the morale of the other parents too much good, so hopefully we shall remain discreet. When I went up to the house I met a few parents and most looked as if they had heard. It’s the same I suppose with any difficult topic, people feel awkward as they do not know what to say; although this time I suspect they can see a part of them in our situation. We certainly felt that pain when some of the other children have passed away here, and you hope that your number is never called in that respect, which of course now it has.

We took Fred out again this afternoon, and though it was not as sunny it was quite humid. He was just in his sweatshirt and bottoms today and nodded off at the beginning so we took him on a new route down Colston Street and down to Broad Quay, through to Welshback where we had some lunch on the pavement. Rachel and I had curried parsnip soup and Fred watched. He is starting to get ticklish now on his feet, and as he was bare foot today he was fair game for tickle-torture. He would giggle until he started to urge, so I stopped.

We gave him an empty bottle to play with and he was content although bits from the trees fell into our soups and drinks. Curried parsnip is rather pleasant, even with furry tree bits.

We walked back toward Broadmead dodging the crowds and arrived back at the hospital all worn out. Fred had remained alert all the way through chewing on his dummy and waving occasionally. Once back in the room he gets put on the bed where he falls asleep where he was lain, and snores and gurgles loudly.

I am back at the house tonight and we will resume swapping over each night I think.

I put the washing in the machine and left it to go through for an hour. When I returned I found the water still in the machine with the clothes bobbing about. I poked and prodded the machine, and hooked out some clothes with a wooden coat hanger but was a bit stuck really. I tried to reset the machine but nothing really happened.

I left it unattended and spoke to Lucy who knew about these things, and she came to assist as she thought someone had paused it inadvertently. When I came back I found that Katherine had gone to the machine in our absence, and without looking tipped all her smalls into the drum full of water just as we arrived. There followed a few minutes of fishing out her pink thongs and the like from our washing, and then we re-started the machine successfully.

Day 285 (Sat 14 Apr)(Day Plus 60)Sun, 04/15/2007 - 17:22 — endc011
Today (Saturday) began as one of the best we have had for a while as the sun was really shining and Fred was taken off the pumps for around four hours which enabled Rachel, June, and I to go out with Fred. We wanted to keep away from the hoards so walked up the road to the Royal Fort park where Fred has been the last couple of outings.

He managed to lie on the grass, on a blanket for a while, before grumbling and spent a while sat on laps watching the world go by. Once back in his pram he nodded off in the sun to the sound of blackbirds (or robins) singing overhead in the trees.

We headed back via the house, where we had a cup of tea, and Fred sat in the back garden for a bit, though it was just too hot. He sat in a high chair for the first time ever in the kitchen too, playing with keys and my phone.

We came back slowly and he became the jolliest he has for a while, and was very animated and smiley. June headed off to the bus station at around 1730h.

At 2000h Drs Michelle and Sam came in, plus one of the nurses Nicky, with the results of yesterday’s tests and gave us the news we had all been dreading to hear. The leukaemia has returned in his marrow significantly and the disease has now spread into Fred’s spinal and brain fluids (the CSF) as well. In short there is nothing further that can be done for Fred now really, other than making him comfortable and our time left with him is really only a few weeks sadly.

He will have become resistant to many of the first, and second choice drugs and the fact that the leukaemia has returned so aggressively is an indicator that it has taken hold. Plus the body cannot tolerate high doses of these chemotherapy drugs, and Fred has been on a whole range for the last nine months or so.

In the next few days we will know more as to how Fred will be continue to be treated and where, with us all hoping he can be at a more local hospital to home, at least initially, though our main aim really is to bring Fred home with us, where he belongs.

There is not much for us to say now. Fred seems very comfortable at the time of drafting this (2315h) and is fast asleep, in a sleep suit, lying on his side looking very relaxed. It is an exceptionally hot night, but both of us are here in the hospital tonight.

Tim and Rachel

Day 284 (Fri 13 Apr)(Day Plus 59)Sat, 04/14/2007 - 03:11 — endc011
Fred is due in theatre today though we do not the time until later in the day. He is NBM of course anyway but does not get his few mls of milk on the spoon.

He had another music lesson today and conducted rather than danced along this time. He enjoyed it very much and is very alert again.

His stomach is still causing him problems, and hopefully the investigations can reveal what is the problem.

The rest of his day is spent dozing and playing with Rachel and June.

I head back in the afternoon after doing my various chores. Today I received a cheque from the Royal Antedeluvian Order of Buffaloes, St Michaels Lodge in Paignton. They had heard about Fred locally and decided to raise some funds which was great, and I suppose what local charity support is really about. I added the amount to the donations I was sending to CLIC Sargent and they will be just over £500.00 when they receive the cheques.

I was going to pick up my new car battery today but it had not arrived. There is not any hurry this week but I will cancel the SORN shortly and re-license it in May. I posted my cheques did various admin things at home like sorting the bills out.

I visited Dawn and collected some stuff, with one being a present for Fred from Emily. I planned to give him it after his return from theatre.

After lunch at mum and dads I head back and arrive to find Fred had gone down to theatre at 1545h. He is due to have a BMA and LP, along with an oesophagogastroduodenoscopy, which is a camera popped down all the way as far it will go, I think. He also gets a proctoscopy which is coming from the other end so to speak. They planned to take some samples as they went and took of biopsies of anything that looked worthy of testing. We will have to wait until Monday at the earliest we are told for the results.

Fred emerges 1 ¾ hours later, looking very perky and not like the last time he had a GA. He grumbled a bit and we were told he might be a bit “windy” for a while as I think they inflate wherever they are going beforehand with a bit of air. His oxygen saturation is fine but may dip overnight depending on his position whilst asleep.

He is quite settled the rest of the afternoon and I will be staying with Fred tonight. As I have not thought about food I have decided to pop to the fish and chip shop again. Not healthy I know but probably only a bit worse than some of the ready meals we have to eat sometimes. Possibly.

2007-04-12T18:37:00.000+01:00

Day 283 (Thu 12 Apr)(Day Plus 58)Fri, 04/13/2007 - 04:22 — endc011
Today I had a bit of lie in which was nice.

I wandered into town to get some stuff, and later went to get a new battery for my car, as it has given up doing what it does best. My car has been off the road since September to save a bit of money but I need to get it back on the road really.

I toured the battery shops with my dad and managed to rustle one up for a reasonable sum.

I spoke to Rachel a few times today. The weather is good in Bristol and they managed to take Fred to the park, which I went to the other day. He was wide-awake and thoroughly enjoyed the fresh air as always.

He was waving at people in the end and when they returned he had a nap.

This was followed by a session on the floor and he enjoyed that too. He had a few more different toys from the play department put before him and he managed how best to tackle those and knock them down. One of the gifts he had from the ward on his birthday was a truck which makes a lot of noise and he managed to keep the din going by repeatedly banging the head of the driver of the lorry. Rachel sent me a photo of him chewing his toes too.

He went for an MRI scan today on his head, over at the BRI and results will not be known for I do not know how long. We are anxious to know the results as we never got the results of the first one he had in early August. Earlier ‘blogs referred to us chasing the results, and it got a bit embarrassing in the end asking for them. Events were overtaken when the second MRI revealed no problems so we did not pursue that. Hopefully these tests will reveal everything is OK.

Rachel signed the consent forms for a BMA and LP tomorrow. We also hope they will take a look at the problem tooth too at this time as we do not want him to have another GA later without real need. He has had a lot of GA’s in the time he has been at the hospital and they are not the sort of things you want too often.

Last time he had a GA he encountered some serious respiratory problems which took a few weeks to resolve, and was on oxygen for several days.

I sent off some donations today to CLIC Sargent following the Torbay Council football match. There was also some from others attached to that. I looked back at the money that friends, family and colleagues have raised, plus a few strangers. To date we have raised a total of £4363.00 for CLIC Sargent, Ward 34 and the BMT Ward. These monies will go where it is needed rather than the corporate pot and certainly helps those that follow behind us. Thank you to all who have contributed, either financially or by taking part in helping to raise that amount. I am certainly happier now giving money to charities where I am confident that it will be used to the best advantage.

Also, the people who spend the money are genuinely grateful at all they receive as they only have limited budgets for many things and it enable them to buy more of certain items, or things of a better specification. Once I get all my receipts in order I shall post them on the ‘blog. Some however were merely passed on by us (the donations from the news agency and one of the daily newspapers) so I will chase for some form of a receipt.

Day 282 (Wed 11 Apr)(Day Plus 57)Thu, 04/12/2007 - 18:45 — endc011
Fred had another torturous night in parts, where the pain relief did not seem to have effect. It was intense at times, but subsided irregularly and he kipped as did I, when we could.

When the next shift came on I needed some direction as to what was next in pain relief as Oramorph only seemed to work at short periods of time.

He slept well early morning, and I gathered my stuff together.

Rachel and June arrived and we swapped seats for me to head back.

I went off in search of the medicine dispensing soother in Taunton and met up with Frances for a bit in the town at lunchtime. No luck there, so headed back down the M5 intending to look in Torquay or Paignton.

On the way I get a call from Rachel to say that some blood results have come back, after being taken before the bank holiday break. These are peripheral bloods, taken from Fred, and have showed a “rogue” cell in the laboratory. This is not what we wanted to hear, but its identity is not known at the moment, or that is what we are told.

The words “rogue cell” are very worrying indeed and mean that we have to wait until Fridays BMA to have a clue what it may be. Neither of us know what it means, so we will have to worry until then. I wonder whether I should turn around and come back, but there is not much I can do until we know the results of the BMA. Again an appeal for thinking about Fred please?

Heading back into the Bay I see a large black cloud coming from the beach and go and poke my nose in. It is a rubber dinghy on the beach that has caught alight somehow, and was just being put out by the fire service when I arrived. There was nothing at all left of it on the beach other than a few smouldering bits.

I searched Torquay and Paignton for the medicine dummy and eventually locate the one I wanted in a chemists in Paignton. It was the one advertised on line at Mothercare and was £1.50 cheaper too. I should have bought the lot and sold them on Ebay. This is one of the oldest chemists in Paignton so goes to show how useful these little places are, compared with the high street retailers. When I was a kid we used to make fireworks and bangers and bombs to set off down the beach. We used to visit the chemists to buy our stock, which meant one had to go in and ask for potassium nitrate, or sulphur. These two combinations would prompt the staff to ask the elderly pharmacist to peer around the screen at us, looking over his half moon glasses.

The staff would come back and ask what we wanted it for, and we would refer to a school experiment. Most times we are given the stuff and off we went to get some copper pipes. If the pharmacist suggested we come back in half an hour we never did as we always thought the police might have been lying in wait. No damage or injury was ever caused to anyone or anything.

I met up with Wayne in the evening and headed to the Embassy Tavern for a starter of whitebait, followed by a fat steak, which was very good as usual.

Then onto the Wetherspoons in Paignton for a drink. Whilst in there a couple of drunks were starting to cause problems, though were tolerated for a bit. After being declined drinks for the second or third time they became abusive, and the police arrived to shuffle them out. All was going well until outside the pub they decided to resist being moved on, and a large bang against the window signified at least one detained.

A peer out of the window confirmed the second person detained also with his late night Lidl’s bargains strewn across the pavement and road. Both were face down on the pavement and resulted in most of the pub up against the window seeing what was going on, and chuckling at the drunks plight.

They disappeared to the hallowed, but BO-smelling portals, of Torquay Custody and we all carried on regardless.

I had a text from Rachel to say Fred had been out in his pram today again, up to Clifton Village, and enjoyed very minute of it. He has, since when I last saw him, pulled his NG out by himself and is getting meds by syringe through his dummy.

He is also starting to take a few mls of milk by the spoon. This washes his mouth out a bit and encourages him to take some mouthwash too.

Day 281 (Tue 10 Apr)(Day Plus 56)Wed, 04/11/2007 - 03:11 — endc011
Last night I said I would get some fish and chips from up the road, as they to date have been really good. Generally cooked to order it is in great batter, ‘though I am a fan of “old” chips really rather than freshly fried ones. The only few words I have ever spoken to the man is obviously “cod and chips please,” and in answer to his inevitable question as to salt and vinegar, “lots on both please.”

I normally waved at him regularly when we were up at CLIC House as we had to pass his place each time. Also I now use that route to take a short cut through to Somerfields so, again, usually give a nod or wave if he is looking up from his fryer. Yesterday he finally spoke to me and said that it must be time for us to go back soon. I replied that it was…. but how did he know we did not live or work around here? He tapped his nose and said that he knew we were staying at the hospital and remembered we came in the middle of last summer. This intrigued me, as we only just pass by his shop window. He went on to say that I looked like the “rest of them” that come from the hospital. We had a chat and he obviously gets to know who works at the hospital and those that are staying there. Very observant I thought and I did not know that we smelt of D1 disinfectant. Must also be the look we have and the clutching of bags of washing which is spilling out.

Poor old Fred. His problem with severe pains continue and last night they seemed to have increased somewhat. He gets his regular pain relief but this does not seem to cover it really. He can fall asleep but is woken more frequently with a start and takes longer for the pain to subside.

Before midnight he was seen by one of the doctors who thought it would be a good idea to put his NG back in, so as to have it on free drainage and anything collecting in his stomach can come out up the tube, into the bile bag. This means that the NG tube acts like a chimney and any stuff in his stomach finds its way out up the tube into the bile bag. It means it does not build up in his stomach and cause him irritation.

Before he can have the tube passed down though he needs some platelets and they go in just before midnight. These will help his blood clot if the tube scratches anything on the way down and he was due some anyway. He gets some pain relief just before this and is soon settled by 0100h when they come in to do the NG tube. I am never a fan of this, but Alice and Emma do the deed whilst I have a quick coffee elsewhere.

When I get back he has a bloody nose which is inevitable really and looks a bit battered. A quick wipe over and some morphine down the tube sees him settle for the night.

In the morning he is quite chirpy and a bit crusty on the face where he has been wiping his nose. He has been fidgeting with the new tube and manages to whip it out whilst I am not looking. I have some meds lined up for him and he is due some Oramorph again too.

This means another needs to go down this morning which hopefully will teach Fred not to tinker with things that do not concern him. Charlie pops it down as I hold his arms. If the tube goes down quickly I am OK, which it does. Once it is past the back of his throat he is generally compliant.

Usually first thing in the morning is the best time to get the suction going, and it is actually quite therapeutic really. Maybe not for him directly, but for me it is quite satisfying getting the tube carefully located on a dangly bit of dried phlegm, and sucking it out without touching the sides of his mouth. As he is usually resisting by thrashing his head about you need at least two of you really.

The tube is 25cms long and about 5mm in diameter and is rigid looking a bit like one of those old water dispensers that you have in a mouse or hamster cage, but is bigger. It is unpleasantly known as a “Yankauer” sucker and it is connected to the suction valve. Interestingly (or not) it gets its name from its creator - Sidney Yankauer - an American surgeon who died in 1932 aged 60.

Turn up the pressure to about 15 kPa (which is just over 2 psi) and wave the tube about in his mouth. Once you have hovered up a rubbery end, you can coax it gently until it rushes off up the tube to a tub on the wall. Very satisfying for all.

He will be back on his 18 hour bags of TPN again today I learn which is good. Sometime this week he will go to theatre and have his BMA and a scope poked down to have a look at what is going on in his stomach. That will be under GA, so hopefully we will not have a repeat of the last time Fred went to theatre, and came back worse than he did before he went in. Again, as I have said we will have to await the results of the BMA to see what is happening. Fingers crossed.

Once his pain is relieved he catches up on his lost sleep which is good for him.

Once he is disconnected from the pumps he is dressed in his tank top and trousers plus his new training shoes. He is planted in his pram, and after a few problems we head out into the bright sunshine. He blinks a lot a first but is soon wide eyed again by the traffic and I turn up the hill toward the university.

The flag stones on the pavement joggle him a bit, and we have a few retching points but all OK. Once in the gardens Fred takes in the blackbird songs just like on his musical light. With the sun on him he starts to nod off gradually keeping half an eye open on what I am doing with the camera. Next we head down the steep grass bank to the small ponds where there are some tadpoles by the look of it, as some of the kids are tormenting them with sticks.

A few photos are taken of him, though I missed the one of the passing bee and Fred spying each other. The insect was a bit wobbly and I had to shoo it on its way as a bee sting for Fred would probably end in disaster.

Once back Fred fell asleep immediately without any grumbling, just slept where I put him.

I weigh him again today and he is 9.8kg which is up a bit really though they have taken him off his Frusemide, the diuretic.

Rachel and June will be back tomorrow and I will head back all being well.

Day 280 (Mon 09 Apr)(Day Plus 55)Tue, 04/10/2007 - 01:52 — endc011
Yesterday, we had been here for nine months in total.

Fred is a rather unsettled today but sleeps well in between his bouts of grumpiness. The results for his ear swab have not come back yet, but this is probably die to the labs closing down for the weekend.

He is still getting these bouts of severe stomach pains, resulting in him crashing about the cot with some force. He is getting various painkillers regularly but these do not seem to deal with the sudden sharp pains. He is prescribed some oral morphine which hopefully will let him have a deeper nap and sit on the pain if possible.

He has not eaten anything for a while now as his TPN equates to 100% of his requirements but this still must make the stomach feel empty and therefore him feel hungry.

He gets a blood transfusion in the afternoon, and will get a platelet transfusion soon after.

I wander into town to get some stuff and go in search of a “medicine dispensing pacifier” which is basically a dummy with a reservoir, and a screw cap. It allows you to put liquid oral medicines in and the baby chomps on it, taking the drug. As Fred does not have his NG at the moment we squirt a bit into his mouth or put it on the dummy which is quite time consuming. I went into Boots and Superdrug but they did not have any. I later track one down to Mothercare for £3.99 and ask Rachel to pick one up from Taunton on the way through on Wednesday when she returns.

I also needed to pop into a couple of ‘phone shops, as I need to change my 'phone. I went into that beastly high street store - Carphone Warehouse - to pick there brains and have their brochures, where I was collared by a very polite sales operative. I asked her if she could give me the date my contract was to expire with them. She looked at the records on the computer screen (it does not tell her I am a disgruntled customer looking to defect as soon as I am able) and gushed “you are due for an upgrade on your phone!!” I ask when this can happen and she proclaims “now!” She seemed more excited than I did at the time, tapping enthusiastically to see what other rewards can tempt me, although she could not find out the answer to my original question - but I knew the rough date anyway but just wanted to check.

I was more than a little bit interested to see what she would offer me and she explained the overly complex procedure for new tariffs nowadays i.e. jump and down three times in Month 5, wave your hands about excitedly and they will send you a chequeback offer of £50.00 etc etc provided you do it on the exact day/hour it is due for redemption otherwise you lose out. If you use 500 minutes to a number with the digit 1 in it they also give you a bundle of 2000 text messages solely for use to Darkest Peru though…….. and so it went on.

I was contemplating her offer, comparing it to a very similar (but much better one up the road) when the spikey haired Manager came rushing over looking very very upset and concerned indeed. I assume his hair was styled like that by him purposely; otherwise it may have been due to static build-up from his glossy nylon suit. Having apparently ‘overheard’ our conversation he sighed wearily shaking his head, “Chloe, that offer ends this afternoon - didn’t anyone tell you?” She looks as shocked as him now, covering her mouth and whines “Oh no. Right” and looked at me ruefully as if to say “silly me!”

She carried on writing the details of the offer (that ends today) on the brochure I am waiting to make off with, as she knows I am only browsing and am looking at changing in the next few weeks and not immediately. Chewing her pen pensively, and on arriving at her cunning plan, she purrs “is there any reason why you cannot sign up today?” I have seen these retail-monkeys in action before and had great delight in responding that I couldn’t possibly now, because her manager/colleague had just insulted my intelligence with the oldest and naffest sales ploy in the book, and I wasn’t having any of it thanks. I explained there was a similar and better offer in the Orange shop up the road that did not have a time limit on it in any case, and I trooped off with brochure firmly in my paw.

Since the company bungled my broadband application last year and left me out of pocket (and bitter) I occasionally pop into these stores and spend time with the staff, just chatting about new tariffs and contracts, as I have no intention of doing business with them again. As the staff members seem to change every week I am greeted with open arms - like a dear old friend - as they do not recognise me. Some of my friends say I am becoming a GOM. This is Grumpy Old Man I think and quite right too.

Fred is on his 48 hour bag of TPN so is unable to promenade with me today. As he is sleeping I do pop out a couple of times which is good just locally to see what is happening. I see the forecast is looking good until Friday and I hope we will be able to go out for some air.

I have some tagliatelli in the ‘fridge here, plus some garlic bread which I should have really. However in the corridor earlier I smelt fish and chips wafting about so I may well sneak up to the Kingsdown Fish Bar for a mighty portion of cod and chips. If you are unlucky, he will heap the largest pile of great chips on, which you end up having to eat anyway. If you are really unlucky, near closing time, he will give you extra bits of fish too. At the end I usually feel too full and queasy.

Day 279 (Sun 08 Apr)(Day Plus 54)Mon, 04/09/2007 - 04:43 — endc011
The Easter Bunny came during the early hours and neither of us heard as we were fast asleep. We both did quite well in respect of sleep and Fred seemed quite happy on waking. He is more entertainable now and enjoys silly things, all which make him laugh. Monkey noises, the Benny Hill theme and biting both his feet all make him laugh.

His ear problem persists in that there is a bit of clear discharge coming out so it is later checked by the doctors. It might be some of his tears but I doubt it.

When Rachel comes down she brings a few more eggs that have been given by CLIC. He has a few here, with a few more in Chagford where Fred has one a few draw prizes in the form of eggs.

We are destined to stay the day inside and peer out of the window. It is quite quiet outside and looks good to wander around in. His TPN is due to finish a long way off.

After some thought elsewhere, the TPN is disconnected and we are told we may be able to escape the place for a couple of hours which is really good. Great thinking girls!

Fred is limbering up when his ears get inspected and it looks like he might have something going on in there. They will take a swab of the stuff to see what it is but it is bunged up with wax. And lots of it.

Fred senses something is up and gets all rather boisterous, as do we. After a few minutes we are off down the corridor with Fred’s hat at a jaunty angle, out into the sunshine.

We wander up to Castle Park and sit on the grass for a bit by the daffodils. Nearby is a Peter Randall Page water sculpture which we first saw in October last year. He was fast asleep by the time he was passing it.

We moved on to the circus on the green, “Sequins and Sawdust” and listened to the band playing inside, and to the occasional cheer from the crowd. A stroll along Wine Street/Corn Street and down back to the hospital and Fred remained fast asleep but happy in his cart. He would wake occasionally and crane his head about to see who was about and then drift off again.

Once back on W34 he gets some potassium as he low and is then hooked up again to the pumps for many hours. He certainly enjoys the change and the fresh air and a bit of sunlight on him must help his vitamin D or something.

I see another CLIC House veteran return today and they used to share the annexe with us from July to October time, and we had a quick chat. It was good to see them too.

I left Fred a bit “noisy baby” as he was obviously wanting to go out again but another 48 hour bag of TPN was being dragged into the ward I suspect at that time. It would be nice for him and I to go out tomorrow if the weather is going to break soon, but at least we had today.

Day 278 (Fri 07 Apr)(Day Plus 53)Sun, 04/08/2007 - 03:23 — endc011
When I get back down Fred is fast asleep and hopefully dressed to go out later on.

The sun is shining this morning too and I walk under the arch to take a look at the university gardens next the house.

After breakfast we wonder what time we can head out with Fred. Unfortunately some clown has arranged for Fred to have a 48 hour bag of TPN connected up which means he cannot come off until sometime on Monday. He normally gets a 18 hour bag, and for the first time in four or five months that little Fred can come out with us, his chances are scuppered and we have to stay in here. To make matters worse his NG tube came out last night, and it has not been replaced which is good. He now looks like a normal little boy as for more than ¾ of his life he has the tube coming out of his nose, untidily stuck with tape to his cheek. Again we are unable to take him out “tubeless” now and it would have been the first time that people would not have stared at him.

No one was sure why the 48 hour bag appeared, but I guess it is because of the weekend. Anyhow, it has managed to spoil what we thought might be a weekend for Fred to stopped being bored and see the outside world. His frustration and anger must be related in some way to being stuck in bed for so long. He really really enjoyed his little jaunt yesterday, as did we. Perhaps if the “decision makers” spent nine months in hospital they would think at how much opportunities like going out can help us maintain sanity.

We leave Fred asleep in his cot and wander into town to see what is going on down there. It is fairly crowded and we browse for some clothes for him.

He is asleep when we get back, sleeping at a crooked angle again. He really does insist of lying all twisted up, with his arms jammed up behind him. He then wakes and cries out loud when the arms have gone to sleep and they do not work.

Not much else happens in our day and I am off to get my tea in a moment. Its spaghetti Bolognese and a pile of garlic bread for me.

I have to keep putting a bit of his oral meds on his dummy and squish a bit into this mouth as by 2030h he is still NG tubeless which is great for him and us.

Day 277 (Fri 06 Apr)(Day Plus 52)Sat, 04/07/2007 - 07:31 — endc011
I had a bath this morning and decided that I would head back to Bristol as I was missing Rachel and Fred, and had done the bits I wanted to do. As it is a Bank Holiday weekend we might as well try and be a normal family.

I was going to turn up unannounced but chose not to in the end. I visited mum and dad before leaving and headed back along the M5. There had been an accident at J22 on the southbound carriageway earlier in the day, and although it had been cleared for some time, when I passed it was slow moving traffic from J22 back to J19 and beyond.

As I arrived in the hospital I was told that Fred could go out for an hour which was good. It was a complete surprise to us, and I was glad I decided to come back after all.

So at about 1600h Fred was installed into his pram and we headed up the road toward the Triangle and beyond, onto Whiteladies Road. It was a lovely warm day and Fred was wearing his farmer’s style hat and also a new pair of training shoes that Emily got him. It was nice to see him in normal clothes and he appeared to be very interested in what was going on around him.

Things that were close by would make him take a look and he was also very focussed on us too.

Once back he was a bit grumpy which made us think that to lye in a bed may make you bored.

Otherwise it was a lovely day and hopefully we will be able to take him up to the gardens tomorrow if that is possible.

I left Rachel in the hospital and I will be there tomorrow night.

Tonight I ended up chatting for hours with a couple of the parents and so hence the late ‘blog.

Day 276 (Thu 05 Apr)(Day Plus 51)Fri, 04/06/2007 - 03:34 — endc011
I rang Rachel and found that now he has a bit more pain relief he had a more settled night, which was good news. Little grumbles but no real crashing about.

I had a nice soak in the bath this morning and sat down to fill in my job application forms. It needs to be in by tomorrow, although I thought it was the 16th of this month and not the 6th. Hence me coming down to retrieve some of the information I need.

All filled out I went over to my mum and dads for some lunch then went to Exeter with my dad to drop off the forms. It was a nice day and a nice drive. I could see the traffic is getting busier for the bank holiday weekend, and hope I shall miss the bulk of it tomorrow.

Fred has been more settled again today and Rachel and Alice managed to, in a joint effort, extract a lot of gunge from his mouth. It is still the remnants of his mucusitis, and solidifies in his mouth. In the early hours of the 4th I extracted a kidney bean sized piece of gunk from his mouth, which was sent off for analysis. It has pink bits in it again; the last time it went off to Microscopy and they confirmed it was indeed a lump of “tissue” and was a bit of mouth lining coming adrift. It does not mean he has got a bit of mouth lining missing as afterwards if you look his mouth is clear and pink. I suppose it the old bits of mouth coming adrift but can be a choking hazard, so “better out than in.”

The results of the x-ray and echo come back OK and so we just await the BMA and endoscope lark next week. There is a possibility he will join the weekend list for this, if a slot becomes available. The results of the BMA are something we dread as you know. It is horrible to have to wait, as it will confirm whether the transplant is working or whether the leukaemia has come back. I am not sure what, if any, treatment is available if it is not good news. Hopefully we will have good news so an appeal once again for all fingers crossed and prayers please.

The Chimerism tests came back OK the other day too if I did not mention it other ‘blogs.
We also see Helen D yesterday and have a chat with her. Rebekah seems to be doing well which was good to hear and hopefully things will continue to progress. Next time Helen comments on the 'blog hopefully she will give a little round-up of recent events?

I am back tonight catching up on the ‘blog and will make some burgers I think. I have a surplus of beef mince and cheese, plus some veg in the ‘fridge.

I have had another look at the statistics for the ‘blog which grow gradually. To date there have been 69,178 page views since I started, which equates to an average of 247 views each day. I do not think that is me looking 247 times a day. I hope. There may have been a few generated from my letter which was published in The Times on Friday. I was responding to a letter about ‘blogs where the author reckoned ‘blogs were boring things about nothing in particular. I agreed that many are vague ramblings about topics no one was interested in, but referred to our ‘blog and how helpful it was to us. It enables me to record all the silly things, and more serious happening to Fred and allows friends and relatives to keep abreast of his progress without resorting to contacting us.

We are happy for people to contact us about Fred, but some people do not want to bother us, so it is a happy medium really.

I have taken all of the ‘blogs to date and put them back into a Word document, so that I can edit it a bit more. I am currently going through and correcting the errors, and tidying up the text so it is more readable. As I try and type quickly (because often I do not really have time to do this on one go) some of the tenses get muddled, but I would like a better record.

I have also added another photograph of Fred called “Eyebrows Ahoy” as you should be able to detect the first sproutings of eyebrows and some eyelashes which are coming back after they dropped out for a fourth or fifth time. They have previously come back black, mousey brown and a hint of “ginger”, and now appear to be a black-as-coal smudge. They look a bit large to me at the moment. He is also getting a slight velvety down on his head. With a bit of prickle though.

Day 275 (Wed 04 Apr)(Day Plus 50)Fri, 04/06/2007 - 02:59 — endc011
He continues to grumble during the night with these bouts of severe stomach pains which last about 5 minutes, and then he will fall asleep again. I try and restrain him during the event but find I have to let him free, as I am afraid his resistance will break an arm or dislocate a leg.

Trying to change a sloppy nappy at 0300h in the morning is normally easy in that he will remain on his back, and it only takes a few seconds. If we are lucky he will sleep through the whole thing. Once he remained fast asleep and left his legs in the upright position whilst he continued to sleep. They stayed upright for a minute or so. Recently he has fought and twisted and rolled, spreading dung everywhere, and us all getting in a mess. Bless him.

During the night I am half awake and have the curtain around the bed pulled to keep out the light. I am happy to have the dim light on as it helps the staff who are regularly in and out. Otherwise they crash around with torches and we end up waking anyway.

I thought I saw a couple of bright flashes and was puzzled at this, because at 0130h in the morning you do not expect photographers moving around. Anyway, I was tired and nodded off until about 0300h or something like that, when I heard Fred choking. He does this often unfortunately.

I got out of bed and found Charlie dealing with Fred, and he calmed down. In the gloom she asked if I had spotted “the present” but as it was early I admitted I had not. The nurses come in very quietly and often you do not know they are in the room because it is dark. In BMT I used to get out of bed and walk a few paces and nearly step on one that would always crouch by the side of the bed trying the read the volume of drug given on the pumps. I keep asking they wear a bell or a flashing light or something as it is frightening sometimes to find someone hunched up by the side of your bed.

Anyway at the foot of the bed was a photograph of Fred she had taken earlier, with him having carefully placed a dummy on his ear, looking like a huge hearing aid or an earplug. She had come in and seen it, and nipped out to take a picture – hence the flashlight earlier….

He has been fidgeting with his ears recently and this is why he has put it there.

It was a great picture, so I tried to strip the picture off the camera to put it on to Rachel’s lap top, which did not work so I tried various other options. By 0400h I was wide awake, and so in the end we ended up with me taking a picture of the picture on my camera, and then transferring it to the laptop, and then cropping the image. I was wide-awake by then and there was little point of me going back to bed.

I should have put the picture on the Gallery by the time you read this.

He gets some more pain relief during the day and Rachel comes back. Just as she arrives we are advised that he has got a slot for an x-ray and an echo scan of his abdomen. He was due at 1600h that afternoon but I sad he may as well go with Alice, his nurse, whilst I go back to the house with Rachel to get some things. Fred knows the score now and would be happy with Alice, as would we, so he gets plopped into his pram, and off he goes for 30 minutes.

I pack my stuff into the car and we both have some lunch on the way back to the hospital.

We have our lunch in Fred’s room which is quiet and empty without him. The door opens and Fred is wheeled in happily. Apparently he was very good when they did the echo, which he normally is. This is where they use a handheld scanner covered with thick gel and his tummy is scanned. It is the same (or similar to a baby scan) and the images look the same too. It looks uncomfortable because they can be quite firm with the probe and appear to shove it under the bottom of the rib cage to see things.

We will have to await the results of that. He has been having problems with his stomach and this is a way of checking things out. He will also have a BMA next week in theatres and will also have an endoscope down his throat whilst he is under. Again it is not something they do readily but it will enable them to have a look to see what is causing his stomach problems.

Before the transplant we were warned that it would be Fred’s most likely weakness and of course now it appears to be, though more subtle than we envisaged.

I head back again into fine weather and meet up with Hayley in the evening at the Wetherspoons where I tuck into a Surf and Turf which was most excellent.

I get back full and fall asleep without putting the radio on which is unusual.

Day 274 (Tue 03 Apr)(Day Plus 49)Wed, 04/04/2007 - 02:26 — endc011
He was settled most of the night but still occasionally suffered terrible stomach pains. He carries on a few times but generally sleeps well, as do I.

I wander up to the house in the morning to get some stuff and come back via the canteen as I am hungry. This is a different one to the one we normally go, but it has shut early. It advertises as to being open from 0800h to 1400h but does not advertise it shuts at 1100h for an hour. At 1045h all the food has gone and the tills are cashed up.

I get a surprise visit from Frances and she has not seen Fred for quite a while now. She thinks he is a lot bigger than he was and he is a little grumpy. He soon mellows and smiles a bit.

During this time we discuss his general well being and his pain relief and so hopefully he will be able to have some morphine or similar. Previously he has had it on demand, or PCA – patient controlled analgaesia. I would hope that if he gets pain at night, we can give him a blip of pain relief and it work quickly.

We also discuss his mouth which is getting a bit crusty again. I extracted a largish lump of gunge/tissue this morning with the suction device, and he was much happier. However it needs to be kept clear.

As his mouth may be sore still, he gets a gel coating which covers up any exposed nerve endings, and effectively “seals” his mouth lining. Apparently it is very good on the adolescents.

I see Frances off and return to be visited by Hannah the physio. We discuss his sitting up and posture which he is behind on because of his treatment and staying in bed a lot. We try a few things on the floor and find a comfortable position where Hannah’s left leg is a back support for him, and her right leg is a “table” in front of him. He is sandwiched between the two.

This enables him to sit upright with his own support but feel comfortable enough to relax and concentrate on what is going on around him. He can reach out for things that are at his “waist height” and look about. He seems happy with this, and when he gets tired, he can lean back gently and recline.

I scrunch myself down on the floor too, and Fred squeezes in with me. He adjusts himself and seems happy to do so. After a while he reclines to look and talk to me, and starts to drift off gradually.

Eventually he gets back onto his bed and falls asleep.

He also gets 20mls of feed via his NG tube and manages to keep this down, on top of all his other stuff.

He seems happier to sleep on his front now, or mainly his side. It is difficult to keep him on his back as he used to now. This is all OK, until I want to access his nappy.

I shall head back tomorrow as I have some business, and Rachel will take over the reins of keeping Fred under control.

2007-04-02T18:37:00.000+01:00

Day 273 (Mon 02 Apr)(Day Plus 48)Tue, 04/03/2007 - 02:40 — endc011
We had a good nights sleep followed by a decent breakfast and got down just after 0900h to find that he had been a bit grumpy in the night at times, but was generally settled.

He did not look too pleased to see us though, and after a few cuddles he was chirpy again. He has retained some fluid overnight as his face is a bit puffy and yesterday he weighed about 9.96.

He gets a splosh of Frusemide which will shift some of the fluid and by 1900h he weighs 9.62 which is an improvement. His mouth is a bit sorer today as his tooth is developing and he has an ulcer on his gum too.

As his nose remains a bit blocked, he is blowing through his mouth a bit so this dries it out and leaves him a bit crusty orally.

He spends quite a while asleep which is good if he is grumbly and now predominantly lies on his side holding onto the bars. He accepts the dummy tentatively though.

My mum and dad visit just after Rachel heads back. They stay for a while and Fred is awake but remains unsettled for them. A couple of weak smiles and he seems to be happy they have visited him.

His CRP has risen again to 41 which is annoying. He has not really been having much milk as they have tested for an intolerance to lactose and we shall find out those results soon. In the meantime he gets his SMA Gold in 10mls, via his NG tube over 30 minutes. This is mixed with Gaviscon to neutralise some of the acid in the stomach I think.

Up to the time of posting the ‘blog Fred has kept it down so far. We really do need him to get feeding properly to be able to move forward a bit more.

One of the medical students comes in to have a look at Fred and we discuss him for a bit. She was born in Torbay Hospital and is currently in her fourth year here. Fred remained asleep through most of it though.

I am settling to watch Coronation Street in a moment.

Day 272 (Sun 01 Apr)(Day Plus 47)Mon, 04/02/2007 - 05:48 — endc011
I awoke this morning with the theme tune of Howard’s Way still ringing in my ears, and so headed across to my mum and dads for some late breakfast and a cup of tea.

I stayed there for a bit and then drove back in nice weather.

When I got in Fred was having some “mouth care” with Rachel and Charlotte, his nurse. He is a bit uncomfortable as his tooth may be playing up, but also he has got some of this rubbery gunge stuck on the top of his mouth again, which is joined to his tongue. It looks like a big sultana and needs to be got at, but he is not having any of it, so he gets a mouth wash with anaesthetic, some water and a bit of Nystatin.

He will suck on a dummy when he wants, though it must be sore as he has rejected a few dummies overnight.

He looks fairly pleased to see me when I come in, and he settles for a bit.

He spends quite a while asleep today and once awake seems alert. Rachel heads up to the house to get the washing going as she is staying again tonight in the hospital. Once she has gone one of the nurses suggest that Fred is OK to get into his pram and have a 5 minute tour of Reception and the bit outside the hospital. He has not seen daylight since the end of November I think, and gets wrapped up good and proper. He has his bumble bee outfit put on him, plus he has mittens for socks.

I cannot get hold of Rachel because she has left her bag and mobile ‘phone in the room and so I seize the opportunity to get going for a few minutes. Charlotte comes down with us and then returns to the ward.

I take a few photographs of him outside the hospital and he is intrigued by the outside world. The “lollipops” outside the hospital are of great interest as is the traffic whizzing by. There is a strong breeze and his eyes water quite a lot. Once he has got used to it he is smiling quite happily.

For some reason Rachel comes in via the main entrance today, as we normally come through A and E on Level 3. I do not see her as I have my back to her talking to Fred. She is mightily surprised that Fred is out of his room, and so that was good.

Once back he gets a hot bath and is rubbed down with towels which he loves. Then is he is liberally dusted with talc and for an extra treat slips into a warmed sleep suit. He is asleep within five minutes.

His weight today is 9.96kg which is good, as he should not be having too much fluid going into him now. Quite a few of the drugs have been stopped and now there are more gaps in his line time. His CRP is now down to 27 when it was 53 the other day and his temperature has remained stable too. He did restart his I.V. Septrin which deals with the possible pneumonia (PCP) problems he had a few weeks ago after coming back from theatre. They never found out what it was as the tests came back negative, but they do think it was, or is, a lung infection of some sorts. Hence the I.V. Septrin re-commencing and this seems to be working anyway.

It is good to see him sleeping so soundly as it must do him good.

I managed to bring a girl back to the house to stay overnight, and we had a nice quiet meal together. Her name is Rachel and I married her a few years ago……. The nurses suggested today that we should let Fred stay with them in hospital tonight as they are relatively quiet on the ward and they are well-staffed, and we should head back to the house and the two of us just be “normal” for a few hours. At first we were reluctant but in reality, if there is a problem there is nothing really we can do. If he is upset no amount of consoling from us helps, and he knows the nurses well anyway.

So we decide to leave him there fast asleep, although he does wake as we are going out of the door. He watches us with one eye open and drifts off again. We are only a five minute dash away and they can contact us if necessary. Most nights recently have seen him sleep well, and with a carefully planned set of drugs overnight he can sleep happily. Hopefully Fred will be able to dwell on his new found independence and think about the big world he looked at this afternoon.

We get back and I have a poke about in the cupboards. We do not have much in and as it is Sunday, the shops are all shut. However I rustle up some pasta with tomatoes, broccoli and peas, with garlic and chilli. Its taste is improved somewhat with lots of cheddar, and this make a nice quick meal. Rachel washes it down with some cider and I drink the last remains of my Admirals Ale which Wayne and Claire bought for me when they visited last in late February.

She gets the washing machines fired up and disappears as I am doing the ‘blog. She returns a while later with a pile of ironing all done.

A bit of television is watched and then my eye lids are as droopy as ever. Whilst Rachel is ironing I ring and speak with one of the nurses who says Fred is fast asleep and has been for a few hours. I forget to tell Rachel and a short while later she speaks to one of the doctors who says Fred is making a protest at the moment as his nappy is being changed, although he has discovered Fred is partial to a head massage.

Rachel has agreed to let me have the radio on tonight in the background.

Day 271 (Sat 31 Mar)(Day Plus 46)Sun, 04/01/2007 - 06:01 — endc011
I rang Rachel a few times during the day and Fred had been sleeping most of the time, but had been a bit grumbly.

He has been dozing in his pram a bit more now but is not tolerating hs feeds as he was.

We await some tests as to whether he has developed a lactose intolerance, which can happen after a bout of chemotherapy, and an extended time without feed conventionally. I do not know how long that takes, but his recent dislike of feed is certainly another setback for the moment.

Tonight I had a chinese with Mark and Amanda, following a visit during the day to see my godson James. He was very active and was extra dribbly, plus covered in crumbs from the box of broken biscuits we shared. James has stopped doing his “Prince Charles” impression, which is sad.

I have not had a chinese for months and months and I had chilli prawns Kung Po which was very good. A few beers and wines accompanied the meal and we watched a few episodes of Howard’s Way. I have not seen this since 1985 but vividly remembered the plot and characters with fondness. I think purchasing a boxed DVD set is in order now.

The last time I watched it properly was in Newcastle 1984 – 1987 when it was first shown on television and when I was a student living with Shaun (blogger married to Victoria and with Devon and Violet.) I was particularly keen to watch some episodes where Jan Howard had a liaison with Claude Dupointe, a fashion designer who wore a funky shirt, the same that I used to wear. It was a limited edition shirt made by Mono given to me by my brother. Happy days!

Day 270 (Fri 30 Mar)(Day Plus 45)Sat, 03/31/2007 - 19:52 — endc011
Fred woke me this morning with a wail, and carried on for an hour with what appeared to be lots of pain in his stomach. He had been settled all night and I woke every two hours to see what he was up to and change his nappy if necessary.

He had painkillers at 0700h and by 0800h he had settled into a deep sleep again. To see him throw himself about his cot in pain is very difficult given he seems to have had a run of happiness recently. He is not happy to be held and gets very angry at intervention, but is soon fast asleep.

I fall asleep until 0930h when I am awoken by Rachel peering round the curtain, saying “helloooo.” Fred remains curled up on his side snoring loudly, and wakes with a start. He takes about a minute to adjust and then starts shouting again. Comforted by mum, he starts to play.

He has not had any fluids by mouth for a day or two and we are worried about his fluid intake. His TPN last night provided him with a top up, and his NG meds were followed by water flushes so he is getting fluids, but not in the way we hoped.

Later in the morning he accepts water by the spoon reluctantly and we still think his tooth may be causing him discomfort. He does drink this little bit of fluid as he used splutter in the early days.

By mid-morning he is “full with beans” and enjoying our company. His alertness is great in that any noise or movement will see him turn toward it and decide whether it is worth continuing to look at. If it is someone coming in through the door he will watch them and wave in his usual manner. If they wave back the whole thing can go indefinitely.

The doctors have a look at him and he continues as the day before.

I head home and check up regularly on his progress.

I do some more batch cooking again and tonight comprises sausages in onion gravy, with cheesy mashed potato; a beef pie with a detachable puff pastry lid; and cottage pies. They all go into the takeaway style foil containers and I then freeze them for use in Bristol. I managed to clear out my mums fridge of vegetables in the process too. One of the potatoes I had here had sprouted a foot long shoot which had made its way through the dresser door into the light.

Day 269 (Thu 29 Mar)(Day Plus 44)Thu, 03/29/2007 - 23:01 — endc011
I get in a bit later than normal this morning as I nodded off in my Dettol bath this morning. I was a bit dozy as I left the television on all night in the room though did not notice it.

Fred had a restful night and only woke a couple of times for a drink. He is still a bit difficult with feeding and drinking and the last day or two has seen him not wanting much. A few days ago he was managing a staggering 350mls of water, milk and cereal, but today has had only about 100mls reluctantly.

This is a worry for us as one of the key things to get you out of here, is him being able to eat for himself, and not rely on the NG tube or TPN. However it is a step in the right direction.

We speak with the doctors who are weaning him off various drugs; the most recent was Defibrotide which prevents VOD. This a nasty thing that involves the liver and the blocking of the small veins in them, and which can be life threatening in a few cases. By him coming off it, it is hopefully another indication that he is heading in the right direction.

We are also told that there is an international shortage of the drug, it occupies about 8 hours of his line time and obviously has a resource impact on the nurses who have to hook him to it. So everyone appears to be a winner.

Fred has also been a bit grumpy recently, although he is not having regular pain relief as he was a few weeks ago. It is clear he is in discomfort and one of his cheeks has been looking a bit flushed of late, as well as slightly swollen.

His nurse decides to take a couple of mouth swabs for analysis and during the battle to keep his arms down and his head still I catch glimpse of a little white peak on his bottom right hand gum. We get the sample but hold him down again to see what it is. It looked like the head of a spot or abscess to me, but it was in view for only a second if that.

His rage and strength is quite spectacular at times, and he certainly knows when it is time to fight his corner. The “spot” is swabbed for analysis and we debate what it could be. Rachel washes her hands thoroughly and pokes a finger into his mouth. He has got two nibblers already on the bottom central and they are quite sharp so one has to be vigilant.

She removes her finger and proudly announces that it is rock hard and bony, so must be another tooth coming along. This would explain (we hope) his grumpiness and lack of interest in food orally, and so the three of us give him a loud cheer, hurrah! He likes this very much and wobbles his head frantically and laughs, slapping the bed with the palm of his hand. Rachel said it was a suspected tooth all along and none of us believed here……

I am getting a taste for the “facts and figures” (or ‘factoids’ as they say on Radio 2) of his treatment as I learn one of the drugs he has everyday - Ambisome - costs £105.00 per dose and he has been having that each day for ages I think.

We celebrated with a drink from the Juice Bar up the road which sadly closes tomorrow. It has been open a year and so we have been customers for the last nine months. The nurses normally order a few for themselves and once we have eight orders we get a 10% discount. Normally the smoothies go down well and give us a small vitamin boost. I shall have to get my juicer up here and run a small outlet from the doorway.

Most of the day he has been sleeping which is good as he is still simmering an infection somewhere. His CRP was 55 yesterday and today it is 53 so no change. His temperature ranges between 37c and 37.8c regularly. It may well have something to do with the pneumonia scare we had the other week, which seemed to have been initially dealt with by one of the antibiotics they stopped. That one has been re-started and hopefully it will help him get rid of it.

Once he has lost his infection then we may be able to head out in the pram for the first time since December. We would head for Clifton Village as the air is cleaner up there.

Day 268 (Wed 28 Mar)(Day Plus 43)Thu, 03/29/2007 - 02:55 — endc011
Both of us arose at about 0500h this morning as we had had a good nights sleep and he wanted to play. In the gloom I can see him ferreting about for things. At that hour and if I am quiet he will ignore me and entertain himself happily. If I sniff, or cough, his head will turn and he will start to get fractious wanting my attention.

By then I am up and potter about, and he will go back to sleep for a bit of a lie-in.

I have a shower and a wash and was going to get some breakfast, but never got around to it.

I started to finish of my Cash Cow today and detailed the nose which I am still not happy with. I wanted more detail on the whole thing and it looks good, but I have never really worked with acrylic paints. Watercolour, gouache, and oils are OK, but acrylic is a bit heavy on a very porous surface. Plus the brushes are £1.99 ones I bought and shed hairs annoyingly.

Anyway, I have nearly finished it and will photograph it when it is ready.

Rachel returned at lunchtime and Fred had a bath. A good splosh about for him and he was dusted down with talc and looked as good as new. He seemed to have enjoyed the event and nodded off again.

The ward is back open again with five beds running and I guess this will fill up over the next day or two.

I popped into town and bought some things but never got around to lunch. I had to look for some false eye lashes for the Cash Cow and nervously asked in Boots. I obviously mumbled as I had to repeat myself, going red in the process and was directed to “Beauty”. I suspected that she suspected…….

I head back to the house and go via Somerfield for some bargains, but do not find any. I get my things and head back.

The house now has wireless broadband which is really good. There are a few people here that use the laptop and wireless and the hospital has one or two laptops for loaning to families. It does enable you to contact the outside world. As we remain barrier nursed we cannot use the Ward 34 resource room where I normally used to do the ‘blog and have no real need now provided I can connect to a stray insecure wireless, or if all else fails use my mobile phone as a modem which is OK.

When I left, Charlie was hanging up his transfusion of platelets and taking down his old bag of blood which went up at 1600h or so. I learnt that the blood transfusion he had today was his 101st unit of blood. That equates to around 13 litres of blood as he does not always take the whole bag. I was once told a unit of blood (however much that actually is in quantity…?) costs the department about £100.00.

Day 267 (Tue 27 Mar)(Day Plus 42)Wed, 03/28/2007 - 01:16 — endc011
His thirst, or hunger continues unabated, which means that once satisfied he nods off into a sleep slumber. This is great for both of us and I hope suggests he is more settled now feeding normally.

We both sleep well and I wake to the sun streaming in the window onto a sleeping Fred.

He has not been able to have any milk from about 2300h last night as his sodium and potassium have been increasing. This means that the feeds he is getting are dropped in favour of water, the “re-hydrate” him as he is a bit dry. The diuretics have ceased too, which means hi weight of 9.3kg may be an accurate one.

He seems happy with just water and some weak juice. I have tried to get him interested in a blue twin handled beaker. He will play with it but will not accept the teat. I will not force him though and I am sure he will find out what is inside if he perseveres.

His day consists mainly of sleeping and drinking which I suppose is actually quite nice for him for a change.

We have some fun with music and some singing, plus I give him a pen and paper. The pen is of no interest whatsoever, but the paper is. He spends the rest of the day searching for it when it has fallen out of the bed and he really does like to study it closely.

He is a sweatshirt and bottoms today and looks very casually attired. He is normally in his sleepsuits so today he looks like he is ready to go out. Which he is not of course.

There is a high level of infection in here at the moment, all with the same normal stuff but those that are not ailing are sent home. Of the 10 beds on the ward, the five cubicles are in use with the remainder empty.

There will be an influx tomorrow of new people as the ward is declared “clear” in the afternoon, so that was all a bit peculiar. This is the first time that we have seen the occupancy down to five. Normally it runs at a maximum of eight beds, maybe nine I recall.

Anyway, Fred seems to be happy with his water and reads his new books. He likes to stare at the pages with mirrors on them, and I can wave at him from behind which perplexes him somewhat. He will peer into the book and grin back at me, and then look over his shoulder so he must grasp the theory about reflections.

He has lost a couple of meds which go via his Hickman line again today which is promising.

I use the time to sort out some monies heading for CLIC Sargent and Ward 34. I cannot remember what the amount to date is as it has been in dribs and drabs. I shall have to work it out but it a good sum.

Tonight I shall have fish and chips I think. Tomorrow I will be at the house as Rachel will be back by then, and I shall cook something from scratch. Not sure what yet.

Rachel visited Tavistock today which is not far from home. He went into Creber’s which is a rather nice old delicatessen where she stocked up on Gentleman’s Relish and more unusually Poachers Relish. The latter was one I bought recently but the seal was broken when I opened it. She also stocked up on Dorset Knobs and some other marvellous biscuits for the mini Tuck Shop we keep in the hospital. Just for own use really.

Day 266 (Mon 26 Mar)(Day Plus 41)Tue, 03/27/2007 - 01:55 — endc011
Last night was the best night sleep Fred had had for quite a while and I managed to keep him dozing until 0400h when he was hungry. Another nap afterwards and he ad some feed at 0600h and more dozing followed.

The fist half of the day involved us both sleeping, once Rachel and June had gone. He was off his line for an hour or so, but he did not settle much whilst on the floor. Back in bed he fell asleep so I did same.

Today the weather is fairly bright and not as cold as I thought it would be. I went into town twice and left Fred to his own devices.

I speak with Michelle, who explains the possible plan over the next few weeks. What she tells me surprises me no end, and I have to realise this is only an estimate and knowing Fred there will be some setbacks along the way. However, we need to sort out Fred’s feeding issues as at the moment he is partly dependant on the TPN, although hopefully the last few days have seen an improvement in his eating habits. We have to make him keep it down though and that is the next problem. He has also a grumbling infection somewhere, as his CRP has been below 10 for quite a while although now is going up again.

Once he is off antibiotic treatment and they feel he is stabilised, then he could be able to stay up at the house with us, and visit the hospital via “Day Beds.” This could be as soon as in two weeks time, given the right circumstances.

We then went onto what happens after that, as we are having difficulty in knowing how much longer we need to be here for. Again, anything can happen in the meantime but Michelle thought that he may need to spend around two weeks visiting Day Beds.

She inferred that after that Fred could return with us to home, and he visit Bristol three times a week, presumably going home each time with us. This suggests a month before he is likely to be in a position to head home but I suspect it will be longer than that in any event. That is all up in the air at the moment and I doubt whether we will achieve such a target in a short space of time, ‘though it does give us a glimmer of hope to squint for.

I am not sure what specialist experience Exeter or Plymouth hospitals have but hopefully at some stage they will be able to become involved in the “shared care” package which was discussed with us some months ago.

Again, I shall only be happy when we are actually there as Fred is very very early from a bone marrow transplant and we have such a long way to go. No jumping for joy at the moment as my superstitious side has increased tenfold and we do not want to tempt any fate.

Today saw Fred receive a jiffy bag all the way from Milton Keynes and he helped me open it up. Another very kind gesture and he wobbled his head in appreciation, sporting a milky tongue for all to see at the time.

He has started limbering up to do his “thank you” letters for his birthday, and is planning to set aside some time each day to deal with correspondence.

He seems very alert today and rather cheery in the afternoon. He was looking at me laughing when the en suite toilet door creaked shut, suddenly startling him. His face was a picture as he watched it close by itself and then he looked back at me quite surprised at what had just happened.

Day 265 (Sun 25 Mar)(Day Plus 40)Mon, 03/26/2007 - 03:48 — endc011
Nobody told me that the clocks went forward this morning and so I was confused to say the least. I missed the Archers unfortunately.

Once I had all my bits together I popped over to my mum and dads and then headed back to Bristol.

Fred had some Codeine during the night which seemed to settle him and so both had a reasonable nights sleep by all accounts.

When I get in Fred is active but a bit grumbly. June and Rachel head back to the house and Fred falls fast asleep for a couple of hours allowing me to do so too.

The evenings are obviously lighter now and I look down onto Colston Street which is deserted. There aren’t any pigeons today for some reason.

It would appear that Fred will not have a BMA tomorrow as first thought. He will have a chimerism test during his 0600h bloods. Fred was making a great din at the time Michelle was talking and so we may well have misunderstood.

Day 264 (Sat 24 Mar)(Day Plus 39)Sun, 03/25/2007 - 07:33 — endc011
Being away from Fred means the ‘blog is a bit light of information and today is no exception.

He has been his normal self today and has been occasionally yucky but was percussing loudly when I rang

Rachel’s mum, her dad and Gaye visited and all enjoyed his company as usual, with him kipping and being active for the duration.

No other news today really. I visited Claire for tea, and was given a “Ready Steady Cook” challenge - with chicken breasts, potatoes, mushrooms, tomatoes, onions and garlic being in the bag.

With 30 minutes to cook we rustled up chicken breasts in olive oil stuffed with mature cheddar, sauté potatoes with onions and garlic in olive oil (with a stock cube or two crumbled and mixed over them), mushrooms filled with a butter and tomato mash (….), and basted baby sweet corn all seasoned accordingly.

A very pleasant evening.

I shall return to Bristol tomorrow.

Fred is due another BMA test on Monday in theatre, which will require another GA, plus another Chimerism test. Again, we shall have to worry ourselves silly for a day or two and wait for the test results, as the former looks to see whether leukaemia has returned or not.

2007-03-23T18:35:00.000Z

Day 263 (Fri 23 Mar)(Day Plus 38)Sat, 03/24/2007 - 06:19 — endc011
Last night I chatted with a couple of parents back at the house until the early hours and then slept well.

Fred was his usual self too apparently and I appeared in the ward armed with bacon sandwiches this morning, which ended up a bit cold, but were nice all the same.

Fred has continued to drink well and is maintaining his intake and for that we are grateful.

I left mid morning to drive back home and for some reason seemed to lose an hour on the motorway so went straight into work for my meeting at 1400h. It was good to come back and did not seem as strange or awkward as I thought it might be. It was good to see all the old faces still sitting on their perches processing applications like elves and being generally chirpy. As I was not working it meant I could wander the planning department and chat, and then moved into Building Control next door where the relaxed and convivial atmosphere was still the same. Back for a chat in my office and then down to see the Environmental Health gang on the floor below. I had a long chat with Mandy and Terri in Licensing, which was good, and I popped back to my desk, which seems to have been frozen in time.

Emma has tidied my desk and drawers and discarded old sandwiches but discovered petrified Satsuma’s from the Christmas before. I checked my email and poked about the system and it all seemed to work.

I visited my mum and dad and then headed over to Wayne and Claire's, where I was transported to Wayne’s club for a few beers and great food, which also included a quiz and ents.

I get back to the house at around 2230h to find it all cold and dark, and do the ‘blog.

I was really pleased to read Helen D’s comment today that Rebekah is doing well. Hopefully our experience of the BMT ward and happenings in my previous ramblings will give them some insight into things and will help in some little way. As we were barrier nursed in iso. I spoke briefly with Helen and Rebekah on the day I was dragging all our stuff back to Ward 34 which was nice. Helen/Rebekah - I do not know what cubicle you are in on BMT but hope it is comfortable and that you are not in there for very long. Thankfully we do not have to wash the bed down every day on W34 with that D1 detergent that arrives in a sample tube, and looks like a wee sample.

The blue paper you get to wash the bed down stains the water in the bowl you get, although the tube is useful for a potential painted didgeridoo project when empty. I trust that Yvonne is still marvelling at my NHS Cash Cow, which is now nearing completion. When done it will be published here for all to marvel at.

Day 262 (Thu 22 Mar)(Day Plus 37)Fri, 03/23/2007 - 04:27 — endc011
Fred’s appetite grows as does the contents of his nappies, which need constant monitoring. Chemotherapy and a transplant play havoc with the digestive system and he has not really wanted any food since November, and has shied away from the bottle.

Occasionally he may have had 10ml of water or milk in the past but that would be infrequent.

Overnight he was unsettled and this was mainly due to being very hungry. I felt I could only give him 30 - 40mls of the milk at a time maximum, as his gut would be overloaded otherwise. Also I do not want him vomiting in his sleep and getting any in his lungs.

His breathing seems a lot easier now, and his oxygen has been gradually decreased so it is was 0.05 litres p/m when I left at 1745h this evening. If he gets upset his levels do drop, but not to anything to worry about really.

He sleeps a bit more now during the day, although last night I did not get much sleep anyway. After a couple of days it gets quite wearing when he is mumbling and griping, but then when you think back a few weeks to when he was seriously ill and taken to theatre, you have to smile at him and help him along, no matter how frustrated you may feel.

I was reminded the other day as to how ill he really was, by one of the doctors, and we are lucky Fred managed to pull himself back together again after his emergency visit to theatres in January.

The doctors are not sure what has sorted out his lung problems, but they are now beginning to stop a variety of drugs gradually as they become unnecessary. Some will be re-started no doubt, but we have started to get a couple of hours off the lines now, so that he is free to be moved about the room. He is theoretically still supposed to be on oxygen but he seems to be able to cope without it when playing on the floor with us. He still has a sats probe stuck to his toe that tells us his pulse and oxygen saturation level anyway, and the alarm sounds if it gets too low.

We speak with Sarah the dietitian today about our plans for feeding him. She is surprised at the sudden turnaround in Fred, but it is not unusual. At the moment he is receiving 100% TPN, or all of his nutritional needs over 18 hours, so any food we give him is a bonus to him.

He weighs in at around 9.5kg to 10kg at the moment, so it works out at around 100ml of feed per kilo, if the feed is 100 calories per 100ml. That’s 1000 calories or so in a 24 hour period. Previously he was getting 100mls of feed a day by the pump and by his NG tube and sicking a lot up, plus getting bad stomach cramps. This meant the pump (which ran at 5 – 10ml per hour) was regularly turned off to give him a rest.

Today, in a 24 hour period he has had 450mls easily, and wanted so much more. We do not give him the full amount as we want to let him have it gradually so at least he feels hungry and enjoys what he gets. If we give him too much and he feels unwell he may be discouraged somehow. In any case the TPN is keeping him going regardless.

I have put a huge pile of grubby suits in the boil wash as he is down to his last suit tonight so Rachel reckons she will borrow a tea cloth to wrap him in tonight if necessary. He really needs some clothes as he will tug at his line in his chest and we do not want that.

We have loads here but he is growing out of them and they get stained with “chemo poo.” He used to use the reusable towelling ones, which we would love to use again, but they would stain and it is difficult to weigh them and store them. Hopefully he can wear them again soon perhaps.

The dietitian thinks he may like the SMA White or “follow on” milk and will get this sorted. At the moment it is 100mls of SMA Gold which are good as they are ready made and can be kept at room temperature. They also can stay around for 4 hours too, as we only use parts of a bottle.

I may have said in one of my ‘blogs recently about Fred’s “target weight” and so I apologise if I am repeating myself. In October of last year one of the doctors (Hannah, who occasionally checks his developmental weight/length etc) had a discussion with us about his then weight. I was concerned at the time that Fred was not interested in feeding much, and his weight was gradually going down. The main worry was dehydration, and we did not want Fred to go “all crispy” as he has done before. That was a load more problems.

However his weight at that time 6.7kg when it should have ideally been 8.1kg if the chart in the Red Book is anything to go by. Each child is different and it is a standard comparison whether you agree with it or not. Hannah said to Fred that she wanted to see him hit 10kg by the time he was twelve months old. I thought that a) it was a long long way off and what does the future hold and b) that was a big increase from then.

On his first birthday he did indeed weigh a few grams under 10kg as predicted, although admittedly some of that was excess fluid. I remembered her words and in the run up to his birthday I was pleased that he had put on the weight gain gradually, and would meet his informal “target.”

I have not seen Hannah yet, but I shall thank her for her words of encouragement. And ask her who she thinks may win the Grand National this year.

I am returning to the Bay tomorrow to have a meeting with my office, as I have been away for nearly nine months now. My employer, Torbay Council, has been very good to me and the time has flown by in one sense. I guess time gets distorted in certain circumstances. It is now however, a time to review and take stock of our current situation and I hope we shall all be happy with whatever happens.

Little did I know on 30 June 2006 as I tidied my desk on that sunny evening, walking up the road with a colleague happily for a week’s leave, that I would not visit my desk until now. I had a free week ahead of me where I had Fred all to myself on Sunday and Monday, as Rachel went to stay at her mum and dads for a day or so without Fred for the very first time ever. That was the beginning of a very hot week where I met Amanda and James on the Monday and we wandered down along Goodrington Beach. Outside the old Brass Monkey we watched seagulls descend upon al fresco diners and steal all their food as they shrieked and ran back from the table

Day 261 Wed 21st March (Day plus36)Thu, 03/22/2007 - 02:26 — endc011
After Rachel and June had left yesterday afternoon his nurse came in and took him off his tubes for an hour or so which was good as it enabled Fred and I to get down on the floor and roll about.
Once free of the spongy bed and side rails he maximised his freedom by trying to roll as far as he can. This is OK whilst on the mat, but it means he rolls off onto the floor into something sharp. However, a few more toys come out and the tumbling tower of pots is regularly under attack from Fred. The animated Winnie the Pooh wanders to and fro in the background whilst Fred practices pilates.
He is starting to have a few drugs taken off now very gradually which is good. He really had been at his maximum after he came back from BMT.
The eveinings are getting lighter still and I watch the rush hour traffic whilst Fred sleeps quietly behind me. I do another sketch from the window looking down onto the T shirt makers and violin specialists. There appears to be a little repair workshop above the violin shop, as Rachel watched these chaps sitting in a line beavering away, with instruments hanging from the ceiling. She thought it was a kitchen or something at first glance.
As Rachel has the laptop (hers actually) I am typing this on my handheld, so mistakes may be in evidence.
Fred is eating solids a lot better now as he has been off it for a few months. However now, give him the spoon and he will bring it to his mouth. A bit wobbly but obviously now keen again on his food. If we can continue this it will be good for him and enable us to keep an eye ourselves on what he is eating.
During the night he is a bit unsettled but then is placated by some water in a bottle and then some milk. He was on vanilla Paedasure Fibre which he did not like so we tried him on SMA Gold once again. He had this quite happily. He had 100ml of liquid in six hours, though was a bit sick later on in the morning. Last week or so that was equivalent to around 24 hours worth of feed.
Having all this liquid slooshing down through his mouth means that it clears itself of dried bits and must make him feel a whole lot better.
Hopefully the problem with his lungs is clearing gradually as he is breathing in a much more relaxed way now, and his background oxygen is at 0.3 litres p/m still. His sats hover around 98% which is fine.
I can root about in the toy box Rachel bought yesterday and he tends to peer over the edge of the bed, to see what I am up to.
He does get presented with some old packaging from his presents and happily explores the empty insides with curiosity, every now and then looking up and whimpering at me.
Later on in the day he gets increasingly hungry. He even almosts jumps up and down when he sees the bottle of milk I have in my hand, and he follows me around the room, with his mouth open. Once he is positioned on my knee, his mouth remains open like a goldfish, as I fidget around to get the teat onto the bottle.
Fred has been a little unsettled today generally and has not slept a lot. Hopefullt it was because he is getting hungrier, but means probably more regular waking in the night to feed him. At the rate he is drinking that activity should not take too long.
I am at the hospital again tonight, and Rachel will return tomorrow morning.

Day 260 (Tue 20 Mar)(Day Plus 35)Tue, 03/20/2007 - 21:34 — endc011
We had a great night last night and Fred slept soundly too. A few hacking sounds and he would sort himself a bit later on. The sleep ended at about 0500h when he awoke and wanted some constant attention.

I had my breakfast of toast and jam plus a cup of tea and then Rachel and June appeared. Fred was limbering up for his music lesson already and we had been practising earlier today.

The doctors come in and have a look at him. His blood counts are doing what they should and his CRP level has dropped to less than 10 which is good. His neutrophils are 3.99 today and his WBC is 4.55. If he gets a temperature he will get another platelet transfusion.

The respiratory team come to have a look at him and one of the doctors we recognised. He was at Torbay Hospital on the July 8 2006 working in A and E and saw Fred in the late evening, a couple of hours after we brought him in. If you look back to Day One he was one of the few that came in when Dr Sainsbury told us Fred had cancer.

He recognised us, and was amazed that we had been here without going home really since last summer. He was pleased with Fred’s recent progress and was happy for Fred to have his oxygen reduced gradually. I took of it for half and hour or so and he maintained a level of around 95%+ which was good. He is currently on 0.3 litres p/m

Mark, Amanda and James appear in the late morning as they are passing by. We went for lunch with them, and as Amanda had a cold they did not come in and see him. James was on fine form and ate like a horse.

Fred has his music session and enjoyed it very much. He also got a few more presents in the post as well as from staff and he was happy with all this attention.

When we come back he is fast asleep and soon wakes wanting some grub. He gets some solids a bit later sitting up in his bed.

Rachel heads back with the laptop and so I may not be able to post the ‘blog tomorrow in the normal way.

Day 260 (Tue 20 Mar)(Day Plus 35)Tue, 03/20/2007 - 21:34 — endc011
We had a great night last night and Fred slept soundly too. A few hacking sounds and he would sort himself a bit later on. The sleep ended at about 0500h when he awoke and wanted some constant attention.

I had my breakfast of toast and jam plus a cup of tea and then Rachel and June appeared. Fred was limbering up for his music lesson already and we had been practising earlier today.

The doctors come in and have a look at him. His blood counts are doing what they should and his CRP level has dropped to less than 10 which is good. His neutrophils are 3.99 today and his WBC is 4.55. If he gets a temperature he will get another platelet transfusion.

The respiratory team come to have a look at him and one of the doctors we recognised. He was at Torbay Hospital on the July 8 2006 working in A and E and saw Fred in the late evening, a couple of hours after we brought him in. If you look back to Day One he was one of the few that came in when Dr Sainsbury told us Fred had cancer.

He recognised us, and was amazed that we had been here without going home really since last summer. He was pleased with Fred’s recent progress and was happy for Fred to have his oxygen reduced gradually. I took of it for half and hour or so and he maintained a level of around 95%+ which was good. He is currently on 0.3 litres p/m

Mark, Amanda and James appear in the late morning as they are passing by. We went for lunch with them, and as Amanda had a cold they did not come in and see him. James was on fine form and ate like a horse.

Fred has his music session and enjoyed it very much. He also got a few more presents in the post as well as from staff and he was happy with all this attention.

When we come back he is fast asleep and soon wakes wanting some grub. He gets some solids a bit later sitting up in his bed.

Rachel heads back with the laptop and so I may not be able to post the ‘blog tomorrow in the normal way.

Day 259 (Mon 19 Mar)(Day Plus 34)Tue, 03/20/2007 - 02:14 — endc011
Today is Fred’s 1st birthday and so I thought I would quickly look back on the last twelve months of his life.

On the 20 March 2006, at 0052h I sent the following email to our friends, colleagues and family to let the world know that Frederick James Wills had arrived - nearly three weeks early……

“Hello

Some of you will know already, but Rachel gave birth to a little boy - Frederick James - at 0004h on Sunday 19 March 2006, and he weighed in at 8lb 2½ oz. Mother and son are both doing fine and will hopefully be back at home toward the end of this week.

For those interested in the minutiae, Rach started going into labour at 2200h on Thursday and had a particularly difficult Friday night so at 0600h on Saturday morning we trooped over to Torbay Hospital having been advised a couple of times on the 'phone that it was probably a 'practice' run, as she had three weeks to go. Having only taken a few paracetamol by then, staff revealed she was actually already halfway through her efforts and baby was likely to appear in the next three or four hours at that rate. Nearly 18 hours and serious discomfort later (with only gas/air plus a bit of Shiatsu) baby was stuck proper, having not travelled any further down, and Rach and baby had started to get into difficulty.

She then had an emergency caesarean and so little Freddie was born a few minutes later without complication. I managed to supervise the whole event by peering around the screen to watch proceedings, giving appropriate advice where needed of course. I would liken it to someone being extricated from a vessel of chilli con carne.

Rach is much better today and the we'un is looking more photogenic (?) than when I first met him.

I hope the photos do not bore, but they cost me nothing to send.

Kind regards, and thank you for the messages we have received so far.

Tim, Rachel and Freddie Wills

P.S. Hayley - can you circulate as you see fit? T”

One year on and a lot of water has gone under the bridge so to speak and our hopes and dreams have been somewhat altered. We do not know what the future holds, and so today I do not want to dwell on that at all.

We both winced at the times he had his inoculations prior to being diagnosed. Now it is second nature for us to see him have a tube thrust down his throat, or have a needle poked in him, or for him being wheeled down to theatres. I counted the consent forms the other day for him going to theatre and these came to nearly 30.

At the moment he is on 21 drugs in a 24 hour period, every day, some of which are potent. The nurses have difficulty in keeping up with the time to get them in, in the 24 hours, as there is a complicated juggling act to maximise the potential from his “line time.” On top of the 21 drugs most have to be followed by an inert “flush” of liquid to clear the line of that drug (to get the measured amount of drug into his body) before the next one can follow on.

What ever that volume of liquid is, he needs to wee it out to stay at his true fluid balance. Hence the importance of the diuretic, Frusemide.

My distinct memories of one year ago are coming back to the house at 0400ha few hours after he was born, and still having the sound of “whooshing” heartbeats (from the monitors) sounding in my ears even though the house was completely empty. Fred had jaundice for a few days and I remember leaving the hospital and driving off up the dual carriageway near the hospital one night - 2200h - and looking back to see Fred and Rachel’s ward window glowing brightly with ultraviolet light. This was his treatment for jaundice.

Also when Fred was born I thought he smelt faintly of chlorine, and I could detect this still in our house for a day or two after he returned home with us, particularly if he was not there.

Rachel ended up climbing the walls almost toward the end of the week as both of us wanted Fred back at home with us, but the hospital kept hanging onto him. Driving back home with Rachel and Fred for the first time was a slow careful event, with him in his new car seat. Our cat (a stray named “Peanut”) did not take any interest in Fred on his return although we kept him away for a while, as we did not know how he might react to a little baby.

Sadly Peanut had to be put down unexpectedly in the first week Fred was in Bristol whilst we were away because he too became ill. I still have his little fluorescent collar and bell on the shelf in an envelope, which my mum and dad kept back for me.

I collect my mum and dad and head to Bristol to see Fred.

I rang Rachel and found that Fred was unsettled again, though had been quite good.

Fred had a stack of envelopes and some bags of presents which look very tempting to him, and us. We open the envelopes first and read them out to Fred. We put each card around him but he soon knocks them down. He does pick most of them up though and we have to be careful he does not drop a card on to his eye or something daft like that.

The eye hospital is opposite his window so would not be far.

The presents are then opened although he is denied wrapping paper.

He has a wonderful selection of presents, including several musical instruments which are brilliant. Noisy drums and a football rattle startle him a bit at first. There are some books too, and he likes these and does spend time studying the images and we can read them to him as well. He has quite a library which is good I think.

He has received a few cards from the staff and Kate, the sister, came in and sang him “happy birthday” and they gave him two presents which were well received. That was very kind of them.

We had a small buffet lunch and some cake later with a single candle on it.

A couple more gifts were received in the afternoon and these were offered to Fred and he loved them all. He is very inquisitive about the things but wanted to go to sleep at times. He hung on in there for a bit, and at the end fell fast asleep.

He had an NG tube replaced today as he tugged it out. He has been drinking water and milk from the bottle which is more progress.

I feel like a nap and so will post the ‘blog now. He had a lovely day and will limber up for some thank you letters soon I hope.

Thanks. I may have time to post some photos shortly.

Day 258 (Sun 18 Mar)(Day Plus 33)Mon, 03/19/2007 - 02:47 — endc011
On the 11 December 2006 the Daily Mail, Daily Express and Western Daily Press ran a story about Frederick in relation to the Anthony Nolan Trust’s Donor Appeal session at Torquay (on the 13 December) arranged by my employer Torbay Council. The session was “inspired by Frederick….” but was not arranged to try and find a donor for Fred - as he had one lined up previously (although had not been able to because of medical complications.)

The articles appeared without our knowledge suggesting that Fred “might not live to see his first Christmas if a donor was not found” by then. We were unaware that the articles were being going be printed, and therefore were subsequently not happy with the content. To unexpectedly read in the national newspapers that your son may die within the next couple of weeks without any factual input from us was not acceptable, and caused our friends and family unnecessary distress at that time.

We submitted formal complaints to the three newspapers who, once aware of the facts, agreed that some parts were not accurate and so apologised accordingly, which closed the matter as far as we were concerned.

The article was found to originate from a news agency that had sourced the story from our local newspapers, the Herald Express and Western Morning News. As we did not get a response from the agency we pursued the matter through the Press Complaints Commission (PCC).

In this instance, they do not have any jurisdiction over news agencies, only newspapers and magazines. However the agency agreed to the Commissions involvement and subsequently apologised to us for the inaccuracy. The monies we received went to the Bone Marrow Transplant Ward where Fred was a patient until recently, and to the Complementary Therapies Trust of same ward.

We are happy at the outcome and the matter is now closed for us. The following appears on the PCC website as the resolution of the matter, and it can also be found on the following link:

www.pcc.org.uk/news/index.html?article=NDQ0Mw==
“Complainant Name:Resolved - Timothy Paul Wills v. South West News Services
Publication: South West News Services
Complaint: Timothy Paul Wills of Devonshire complained that the news agency had circulated a story to the press inaccurately suggesting that their son could die in a short space of time unless he was found a bone marrow donor.
Resolution: The news agency emphasised that its intention was not to cause the complainant and his family distress at a difficult time and offered its apologies for the article which came to be published from the information it had supplied. The complaint was resolved when the complainant agreed to accept the news agency’s offer to forward all monies from the article to a charity of his choice.
Report: 74”
The two of them had the usual long night though Fred was quite chirpy by early morning.

The nasal prongs which blow oxygen up his nose irritate him and so they spend more time out than in. One of the Outreach nurses from PICU reckons he can come off the oxygen and this happens for a few hours, with him having sats. of around 96%.

The doctors later reckon that this might be a bit too early, but agree to turn the rate down to 0.3 litres p/h, and he seems fine with this.

His mouth is quite clear now and so Rachel tries him with some bottled water. He drinks 20mls which is good for him and reassures us that he has not forgotten to drink. One of the problems can be that children lose interest or the ability to suck when deprived for so long. He still loves his dummies though, which we always have dipped in chilled sterile water. He loves that when his mouth is dry as a bone.

He has a lively day and seems to be happy which is nice.
I went to see James my godson in the afternoon and was entertained by his Prince Charles impressions and chewing action. And some wet kisses too.

I had some tea over at my mum and dads, which was another nice change. I also go out for a drink with my dad at lunchtime, although forgot it was Mothers Day and the pub was jam packed.

Fred and I did not forget it was Mothers day, although my little project with him did not actually happen. Hopefully it will this week.

This time one year ago Rachel was in the Delivery Suite, after being admitted at 0630h. We plodded along until about 2230h when his heart rate went up to 180BPM for a long while. I photographed all of the notes before they were returned to the midwives, and so today had a look back through the day.

Day 257 (Sat 17 Mar)(Day Plus 32)Sun, 03/18/2007 - 05:41 — endc011
At around 1730h last evening we saw a trolley arrive outside the room and guessed it was for Fred who was flat out asleep. He was due some platelets as they were low again, but Rachel -the nurse - wanted 30 minutes warning so he could have them before theatre. Unfortunately the trolley arrived without warning…..

As he is going to have a tube, or telescope, put down his throat he will need a decent level of platelets to deal with any trauma in the throat as it goes down and comes back up again.

He is hurriedly hooked up and given the platelets, and is then wheeled off to theatre. The trolley is much larger than him and as he sets off he looks very tiny. I am not allowed to accompany them this time as they have tightened up on excess numbers of people going down to theatre. Rachel will normally go in with Fred to receive the anaesthetic and I will sit in the waiting area until they come out. Unfortunately we are unable to do this so I stay in the room.

He goes down and the procedure is expected to last no longer than 20 minutes or so. I fidget around with the laptop and try and get back onto some wireless network but to no avail. I dig out my mobile phone for internet access and it still works but is a bit slow and more expensive. OK for posting email and bits of the ‘blog but not so good for browsing.

He comes back around 40 minutes later and is carried up by Rachel in her arms. He looks quite happy and settles into his bed quickly though is breathing a bit heavier than before. His sats. seem to be OK, but he will now be on about 3 litres p/h.

He seems to do fairly well with the breathing and sats and it is decided to try and wean him back off the oxygen as he is ready, though this will be done gradually and the current oxygen levels have their advantages and disadvantages.

Rachel headed back to the house to do the washing and ironing and get some well earned sleep.

One of the doctors comes in at around 2000h to have a look at Fred and seems to be happy with his current condition. He explained that he had received three sets of results from the laboratory and that they were all negative. One of them was PCP or pneumocystis pneumonia which sounds to me to be something he does not want at all.

Again this is good news but the problem perplexes them. However there is a further test that needs to be analysed and this is a culture of what they took so will take a few days to grow in the laboratory.

I do not know what the bug could be, and we hope it is not an uncommon or virulent thing, especially as he low on his defences.

We wondered why he had been fine up until theatre and then emerged with a bug in the few minutes afterwards. They explain that he may well have had an infection before that he could mask from us as his body was compensating for the problems without anyone noticing. The GA may well have tipped him over the edge, and this manifested itself the way it did.

His evening is quite settled and I then decide to crack on with finishing the NHS Cash Cow. It gets some black and white markings, plus grey horns and hooves, and then a pink snout. There needs to be a lot more detail put into it though.

Fred has started to get envelopes in the post and the porter delivered a few this morning which was exciting. I shall take a photograph of them before he opens them on Monday.

As people in the hospital do paperwork about him, one of the regular bits of information is his date of birth. As the day gets closer they start to comment that he will be one soon……

He is very unsettled during the night and I do not really get any sleep until about 0600h. At about 0500h I hear two people discussing Fred quietly in the room, and one is a voice I do not recognise. Ilater learn that it was on of the on-call doctors from somewhere else who has been called to have a look at Fred as he is laboured in his breathing again, but they do not feel there is anything of concern.

I seem to see each hour in and it goes very slowly but soon the sun rises again and it starts to get normal again.

I am delivered some toast and jam and a cup of rather nice tea and so it starts the day well. We have changed his bed a couple of times as he was a bit sick once during the night and also wee’d whilst I tried to change him. That was the diuretic working and I had forgotten the time he had it.

Rachel came down and we sorted Fred out who was quite happy at times but a little grumpy.

I gathered my things and headed back to Torbay.

During the day I spoke with Rachel and learnt that during the afternoon Fred had started to have difficulty in removing a phlegmy lump from his throat. He started to splutter so Rach called the nurse and so the doctor was nearby and managed to dislodge it from Fred’s throat. He used some prongs to remove a small solid grape sized dry lump, which we later had found had dropped off the roof off his mouth. It has been there for a day or two and was sent off for analysis. The roof of his mouth apparently looks totally normal which is good. He has been having a mouthwash which the dentist prescribed, so as to dislodge all dry matter.

With him having a background of oxygen, it will dry his mouth and nose out a bit too much. His oxygen amount has been decreased from 3 litres p/h to 1, and he seems to be able to be weaned off gradually.

Earlier I turned his oxygen down which still showed a high oxygen saturation level, but he was having to work a bit harder to compensate for it, so was puffing more. Again it is another fine balance to get this right without reducing his oxygen too early.

He has been quite chirpy since then and hopefully this will make him a bit happier.

I went into Torquay to get a few presents for his birthday and then went over to mum and dads to get my post and catch up with the local news.

I was lucky enough to be offered tea at Paul and Dawns, and had a great feed without me having to cook. Some wine and beer went well with it all and I caught up on some scandal too. The evening was rounded off nicely by me having a lift home from Charlotte and Emily, so no late night walking for me.

The heating is on again and I shall have a bath tomorrow morning, but I do not have any Dettol.

Day 256 (Fri 16 Mar)(Day Plus 31)Fri, 03/16/2007 - 22:16 — endc011
Yesterday they took off the “barrier nursing” restriction and so it meant I could head to the parents kitchen and use the computer once again. Apparently the test results had been clear for three weeks and so it was lifted.

Today we are told we are barrier nursed again, so our few hours of freedom are short lived. Little things like that can seriously p*** us off when stuck in here for eight + months. Not the hospitals fault but annoying when the results seem to be erratic.

The good news yesterday was that the more detailed tests showed the marrow as clear from disease. Also the results of the chimerism test were that at this stage the marrow being grown by Fred is actually 100% donor. This all sounds great, but it is early days yet. It will be a long while before we know more of course.

Fred has a busy day today, the busiest for a while. When I get in Kate is in doing an assessment on him. She is doing a Masters at the moment and so Fred is a case study. He is then visited by the physiotherapist who has a look at his breathing. This was followed by Hayley from PICU, a couple from the respiratory team along with Michelle, followed by the dentist to look at Fred’s mouth followed by Julia the music therapist, followed by someone from cardiology to do an ECG on Fred.

We then took him up to level 6 cardiology, for an echo on his heart, and this came back clear thankfully.

The respiratory team came to assess Fred as he is due to go to theatre for a bronchioscopy later. This involves him having about 20ml of saline put into one of his lungs, and about half removed again. They can do one test fairly quickly, though some other test results will be available on Monday.

I sign the consent form and there is some chance that he will come back more poorly than he went as, obviously fluid in the lungs is not ideal. Ideally that should clear within 4 to 6 hours. However, if needs some help he might need to be transferred to intensive care later this afternoon for a bit.

Fred is still needing oxygen and seems happy in himself, and has been rolling about today and being very mischievous.

He enjoyed his music lesson again and took part even though he might feel a bit puffed out.

Unfortunately the internet connection I could connect to yesterday has locked me out, so I am not sure what I shall do on the ‘blog front, as email on my phone is not working either. However I am, at 1515h, sitting in the Whitehart on Lower Maudlin Street posting the ‘blog in a fug of smoke and Friday PM drinkers. I have had to have a pint to enable me to sit here. I could have sat on the steps outside I suppose but there is a Big Issue seller plying his trade there at the moment. Must go as some are spying my laptop with curiosity…………….

Have a good weekend anyway.

Day 255 (Thu 15 Mar)(Day 30)Fri, 03/16/2007 - 22:15 — endc011
Neither of us had a good night, with Fred stirring most of the night to retch and wriggle. I ate too many chips with my fish, bought from the chip shop up the road from the hospital.

His respiration rate remains high so he comes across as blowing like a train. During the night it drops to something a bit more normal, though increases again during the day.

As he is panting, his nose and mouth remain dry and probably uncomfortable. We give him a saline nebuliser, which is basically a fine mist of saline in a mask that is waved under his nose. 10 minutes of that he seems clearer and sneezes – dislodging a couple of raisin sized bogies. He will also start a sodium bicarbonate mouthwash to help him, and we will do that by using the foam lollipops soak in it, and squish it around his mouth. It will taste a bit salty but will be refrigerated.

His normal rate is around 40 breaths per minute, but is easily around 80, which makes him look like he is panting. His oxygen saturation levels also gradually increase as the day progresses. He was on 1 litre per minute, which then was kept at 3 litres per minute for most of the day. Whilst he is dozing it can be knocked down a bit.

Michelle comes in to say that the detailed examination of the marrow sample did not show anything untoward, and she described this as “normal” and that the Chimerism results would be available tomorrow. That news was a big relief to hear. We now hope the chimerism shows that the sample is 100% the donors or something very very close.

The x-rays show that he may have an infection or it may well be some fluid, or both. In order to ascertain what the problem is he heads down to x-ray for another CT scan. This is to scan the chest and is like a large doughnut that makes a whirring sound as you pass to and fro in it (see photograph).There is some reluctance by all of us that he has another general anaesthetic, so goes down without. He has had two other scans without GA, and just needs one of us to hold him. I stay in the office which overlooks the scanner, and watch the images coming up on the screen. Fred shouts a bit at first and Rachel stays at the head of the sliding bed, to hold his arms above his head. He does as he is told and the images look clear to me from where I am standing.

His breathing and sats seem to stabilise over the day which is good for Fred, as he can rest a bit more.

He may have a bronchoscopy tomorrow morning which will involve another anaesthetic although a mild one to sedate him. They then pass down a tube and some fluid into the lungs and suck it back up to get a sample. That will give some indication as to the problem.

He seems to be more relaxed now and is back waving his hands madly.

2007-03-14T18:34:00.000Z

Day 254 (Wed 14 Mar)(Day Plus 29)Wed, 03/14/2007 - 23:25 — endc011
Fred was his normal self last night – unsettled and a bit sick. I was up at the house and Rachel stayed with Fred. I managed to cook up a garlic-heavy chilli tomato spaghetti, which I can still detect now.

I get in this morning a bit apprehensive as to what will have happened overnight, as we also await the results of the bone marrow aspirate.

He is still requiring oxygen and it is explained that when he was in theatre he may have inhaled some fluid, such as vomit. The x-rays show some fuzziness and marks suggesting this what happened, especially as it coincided with him coming out of theatre. There is also a chance however that it could be an infection, which is something we definitely do not want as it can take ages to shift.

The problem that he experienced yesterday has been explained to us briefly, but we are told it had nothing to do with his current problem. He was due a platelet transfusion (they help clotting) as his counts were quite low, as well as a blood transfusion (again this means less oxygen being able to be carried around the body). For some reason he was not given them prior to his trip to theatre, which really should have happened. Hopefully I will find out more in time, but it seems likely that his problems occurred in theatre, inhaling some fluid into his lungs.

We assume that they will dry out in time and his breathing efficiency increases to what it was before – 99-100%.

We also speak with Michelle who would have looked at the bone marrow slides after yesterday’s procedure. She says they look good, but does need to receive some more detailed data following another test. They have also done the Chimerism test, and they should be able to see what percentage of blood/marrow is the donors. They may want to get some GvL going as I have previously mentioned. If it is not then there is a procedure they can do where they give Fred some of the donors lymphocytes. These deal with immunity and make antibodies.

Fred heads off to x-ray as they need to take another look at his chest and see how it is going. He enjoys the ride down through the corridors.

Word is getting around that Fred is back on the block. Most seem really pleased, and surprised he is back, hopefully all in good circumstances.

I wander around the town for some lunch today. It is nice and sunny and feels summery. Hopefully this lung problem is just a blip as little Fred has had enough of misfortune in his short life so far.

As we have moved Claire has suggested I update you with the address. Post will get to us wherever we are though.

Mst. Frederick J Wills, Cubicle 2, Ward 34, Level 5, Bristol Royal Children’s Hospital, Upper Maudlin Street, Bristol BS2 8BJ

I am posting this early from the hospital as we have found an unsecured wireless access point from the window.

Day 253 (Tue 13 Mar)(Day Plus 28)Wed, 03/14/2007 - 04:50 — endc011
We both had a good evening last night with him dozing most of the time. I signed the consent form for the bone marrow aspirate which happened first thing this morning.

Due to him recharging his batteries in the evening he was quite active during the night again. When I awoke to change his nappy, his bed was all a bit wet and in the gloom I thought he had yucked up again. Sarah and Megan were in the room too, and we rummaged around him in the gloom and found one of the lines had become disconnected. The wetness was the TPN leaking. I do not know how it became unattached, as it is a screw thread connection, but he does roll around a lot and the sides of the cot are up to maximum level, and this puts a strain on some of the lines if he rolls in particular ways though.

I awoke at 0600h and then started to wipe the bed down which is our daily ritual now. I put Fred in the inflatable doughnut whilst he is out of the bed, and he seemed quite happy. I think we actually got some sleep in the early hours in the end.

He was been scheduled for being on the list first thing today, and is ready to roll from 0830h onwards. His nurse comes in and advises me that we will go to theatre as planned but Fred will be transferred to Ward 34, as he is being discharged from BMT isolation.

This was a bit of a surprise to me, but we had an inkling although it was not confirmed to us. We were initially told that he would be in iso for at least four to six weeks, and would likely become profoundly ill during the process. To date not much has happened and other than mucusitus he has done OK I thought. To be moved so rapidly out, without explanation as to why or what happens next just adds to our ever present sense of worry.

I hurriedly got his stuff together and bagged our things before we took him down to Theatres on Level 4. Once he was in the Anaesthetic Room, he was given his meds and we left him falling asleep.

Whilst he was in theatre I had about an hour to move the stuff from BMT to Ward 34, which I did along with the porters trolley.

As I arrived on the ward and find that theatre have called to say that he is ready for collection, so we head down and find a sleepy Fred, a little grumpy.

There is some delay in releasing him from the theatre as his pulse rate is rather high and his oxygen levels in the blood are unusually low. Charlie (his nurse for today) is not keen to move him until he has stabilised. It was not obvious to me (but was to her thankfully) but he was at that time in some difficulty. She also has the benefit of knowing Fred’s foibles for nearly eight months too. I later learn that there may have been problems prior to the operation, and so need to find out more about what happened.

We get back we get our old room (Cubicle 2) and Charlie has expertly made a “Welcome Back Fred!” poster with stars on, and this was stuck to the door which was a nice thought. I took a photograph of it and sent it to Rachel, who should be back later this afternoon.

Fred, back on the ward, remained having trouble with his oxygen levels and is breathing quite fast still. He is also running a slight temperature, and all of these cause us concern. I suppose that as Fred has been re-admitted to the ward, he is seen by the doctors as “new” admission and so they do seem to spend an extraordinary amount of time looking at him. This worries me due to his current problems after returning from theatre.

He also has been given a bit of background oxygen to help him along which keeps his oxygen sats up to 100%, and the Outreach Nurse from Intensive Care “pops in” as he has had to be given oxygen. Again this is worrying that they are taking this level of interest, when I am still not clear what has really happened, or more importantly, what the implications may or may not be.

Fred has a chest x-ray done as he is still very snuffly, and there are some indications of either fluid on his lungs or an infection. This might be due to the anaesthetic, but I do not know. Tomorrow I will be able to ask some questions and get some answers I hope.

Fred settles a bit before I head back and he gets the platelets he needed, plus the blood transfusion as I head back.

He is asleep when I left and so I hope he will get a restful nights sleep and that his sats will improve because of this. Again, this is all more worry and at the time of posting the ‘blog we do not know the results of the BMA or the trephine, where they take a small core of bone during the operation too.

Day 252 (Mon 12 Mar)(Day Plus 27)Tue, 03/13/2007 - 04:05 — endc011
I arrive back in Bristol at 1100h and Rachel and June hop into the car, to head back.

I find Fred fast asleep and learn he has been quite good the last day or two. His fluid balance is still going up and down, with him weighing 10.06kg on Sunday and 9.88kg this morning. He is still being sick with some foods and the old question of where the NG tube is raised.

They decide to ease the tube a bit further down, so that it turns into a NJ tube, which will hopefully mean he is more settled in that respect.

He sleeps most of the time with me today, waking occasionally to see what is going on around him. He still has a temperature running and this remains around the 37.5c mark again.

Tomorrow he is due to have another bone marrow aspirate in theatre again. This is where they take a sample of the marrow out of the bone to see whether there is any disease evident. It means we have to worry for a day or two as to what they will find. No one has explained the possible outcomes which makes it all the more worrying.

He will also have a chimerism test tomorrow where they check the blood and to see how it has been affected by the transplant. Again I do not know what they will find or even how long it takes to test. Someone did mention “a few days..”

He also got a bag of platelets as they have dropped again.

The doctors seem pleased so far at his general well being but I suppose that all hinges on these tests tomorrow.

It is mentioned to us that Fred may be moved out of iso back into non-iso. There is a pressure for beds I suspect as three new patients are coming into iso today. Fred’s counts have been climbing recently which mean - I assume – that his immunity has started to improve. It takes a long while to get back to a normal immune system though.

Day 251 (Sun Mar 11)(Day Plus 26)Mon, 03/12/2007 - 01:29 — endc011
I visited Wayne and Claire last night and had a good feed as usual. It was nice to chat and a drink and to catch up.

I spoke with Rachel earlier and she said that Fred was quite jolly and with his new talent of throwing stuff out of his bed, only to wait for it to be replaced by someone. A minute or two later out it comes again.

The weather is good today so the fence is due to go up without any blustery wind. Unfortunately the metal base I thought I had is not in the shed, and so I have to pop out to Focus and get another one. They do not have one in stock and as I leave I see Steve W in there. He is a blogger too and knows why I am in there too. He is doing his fence as well, and whilst chatting to him I see Andy and Kathy from work. They too know why I am there after reading the ‘blog.

As I go to meet up with Amanda and Mark who are helping me, I bump into her mum and dad too.

They bring along my godson, James, who finds it highly amusing at our antics in the back garden getting the post in the ground. Lots of noisy hammering sees him chuckling away.

It finally goes up and none of us are injured.

I shall head back tomorrow and Rachel will return with her mum.

I am tried to sort some bills to day, another one of which is estimated. We had a water meter fitted some months ago after we came here, and the first bill seemed to be higher than I thought it would be. Anyway, I noted yesterday that it was “estimated” as well – lazy toads, the meter is in the road for them to read – and so instead of 24 cubic metres as they say, I see I have used 5 cubic metres instead so hopefully that will change.

Not much else happens really but Fred seems to be still settled.

On Day Plus 28 he will have his Chimerism Test which will indicate how much of his blood is his, and how much is the donors. I do not know anything about that topic yet.

I now know how many words I have typed on the ‘blog. In MS Word, I have created 218 pages of text, 142,000 words in over 13,000 lines of text. There have been 65,322 page views of the ‘blog since I started on July 24 2006 at 0922h. I backdated the early pages as I could not find an easy way to do the ‘blog. During that time I have also probably put on 10 stone in weight through eating 117 ready meals….. well almost. And I have probably only polished my shoes a couple times. Normally they have a fairly good shine to them.

Day 250 (Sat 10 Mar)(Day Plus 25)Sun, 03/11/2007 - 02:22 — endc011
Another slightly disrupted night in that Fred grumbles quite a bit. He is having the 10mls of milk constantly and I do not know whether this causes him some discomfort or not. He brings up a few bits, but is generally fine.

Again at 0500h he becomes playful and wants to make noise and bang the rails with his rattles. This is good for him really as he must enjoy it, because he looks very happy even though I am tutting when he drops things over the side of the cot on to the floor.

Rachel gets in early and we get the bed changed and new sheets plus new clothes for Fred. He will be weighed after I have gone today but he feels heavy. I do not know how much extra fluid is on him as he should also be putting weight on too quietly. His TPN is 85% of his nutritional needs, plus the milk, plus some lipids which he gets. Also he is nibbling on baby rice and stuff and is not being as sick as he was a few weeks ago where nothing would remain in its place.

June will be here soon so I go back to the house to get my bag and collect any post.

Soon I am heading down the M5 and the sun is shining.

Fred’s day seems to be as the last few days, and he has taken interest in his solids again. This is good, as if all goes well then one of the things keeping us at the hospital longer than we should, would be feeding. Children can have real feeding problems following chemotherapy and a bone marrow transplant, and it sometimes takes time to get them back into the swing of it. They eventually get there of course, but it can be a delay.

There were two other transplants last night and I spoke to the parent of one, who agreed it was a bit of an anticlimax. I saw him this morning at the house and he said he’d had a few glasses of red wine last, so was glugging on orange juice.

I spoke to Rachel in the afternoon and he has been quite happy, a little noisy at times but this could be boredom creeping in. Music got him going again.

I manage to get my hair cut thankfully, and so I am all clipped once again. Feels good and no itchy flaky scalp today either. However, I apparently jiggled about too much in the chair today.

Good to see Katherine has her PC back?

Day 249 (Fri 09 Mar)(Day Plus 24)Sat, 03/10/2007 - 03:01 — endc011
Not the best night here as he was unsettled for most of it. He seemed to be waking each hour, and getting more and more tired with it. However, this just made him grumpier and at 0500h he was wide awake and wanting to explore his little bed space with my participation. My enthusiasm had waned by then, but he remained defiant and persisted and did not sleep much for the rest of the day.

Rachel appeared with a large bag of his clean clothes in the morning which was rather useful as he was wearing his last little outfit. He had been sick a couple of times overnight, which also made us all a bit grumpy.

The both of us went back to the house for some lunch which was nice and the weather is good at the moment. There were a few others there and it gave us a chance to have a chat and for me to have a shower. When we get back Fred has been looked after by a couple of the nurses, although he has returned their care by falling asleep for all of the time we have been away.

It is music day today as well, and Fred awakes just in time. This time he is prepared and we have a raucous sing-along with quite a lot of noise. Fred ends up concentrating intently on the music, with bells tied to his ankles. On cue he will repeatedly slam his legs down in time with the music. No grinning this time, but determined concentration to keep up. He did this for a few times, before he started to lose concentration occasionally. I have managed to get that on video so I need to put it on to DVD now. I have about 13 hours of Fred on video, with probably 9 or 10 being in the hospital. I have not yet had the opportunity to look back on Fred when he had just been born. He was all knitted hat and cardigan then.

The singing and music din could be heard outside his room, though most thought we must be a “musical family” and so it sounded good anyway. Fred certainly enjoyed this session and did not fall asleep afterwards as we had hoped.

His WBC is 1.5 and neutrophil count comes back as 1.29 which is a good sign we are told as they are gradually coming up. The more of an immune system he has the less vulnerable he is to infection as this is why he is isolation at the moment. Apparently it also indicates that the donors marrow is starting to engraft and producing things. The anti-rejection drugs (Cyclosporin and MMF) will now be stopped carefully, so as to try and encourage a bit of GvL, (Graft versus Leukaemia – see glossary) where the new donor cells will go looking for Fred’s remaining leukaemic cells, and hopefully mop them up once and for all. Nothing is ever as simple as that of course, but that is the gist. He will also need a blood transfusion although it is unlikely to be tonight now. Unless it is really necessary blood is usually given during “normal” hours rather then in the dark. I think this is really down to any problems that might occur when receiving a blood product. It is more difficult to observe someone in the dark, and there are less staff on at night, so seems sensible to me. Fred has had blood over night before as he really needed it but that was quite a few months ago on Ward 34. In an emergency that policy is overridden if necessary.

Rachel is up at the house again tonight as I will be staying here again. I will head back to the Bay tomorrow morning all being well, and June will stay here for a day or two. I desperately need to visit my hair artiste as I could double as one of the Beatles at the moment with all this hair. Even my gentleman’s hair pomade is having some difficulty at the moment.

My appeal earlier in the week for an extra pair of hands for when I put the fence up was answered so I am grateful for that. For Chris and Darren who offered their services as well, thankyou.

A couple more people who are at the house have transferred across to this side now. I also stopped and spoke with Helen today in the foyer and then again later at the house and hopefully they have settled in here. To make space for the incomers, a couple have also headed back out to the house which must be great for them. Some have been here for months and months (like us) and some have only been diagnosed at the end of last year. They have had their transplant in that time and have headed out again. As I have said previously, there are many forms of cancer, leukaemia and blood disorders and you cannot really compare each one easily.

I had hoped to get the cow painted today but did not have time and did not give the play therapist enough time. She did deliver some eyes and a piece of pink fabric for a tongue. The eyes are very important to finish it off though, and I will leave those to last.

I must try and get some sleep tonight as I will nod off on the way back tomorrow if not. Hopefully the weather will be good on the way back.

Again Fred seems to have had a good day. I am pleased, but a little nervous about the engrafting bit, as the whole process is incredibly complicated and prone to problems. We only know a tiny bit of nothing and so I might simplify the ‘blog greatly without knowing what I am saying. We can also easily forget the bad times and possible problems and get too confident so we shall continue to take each day as it comes, and goes.

Day 248 (Thu 08 Mar)(Day Plus 23)Fri, 03/09/2007 - 03:43 — endc011
Fred and Rachel would have had a good night except for the milk pump, which kept bleeping every thirty minutes or so. This particular brand of feed is much gloopier than previous types and it tends to clog in the tube, causing a blockage. It is moving at a rate of 10ml so is understandable.

It does not clog in the day though.

Fred still has a temperature and this bobs around the 37.5c mark, but with paracetamol is kept in check. His counts today are the same as yesterday, CRP 30 and his neutrophils at a little less than yesterday. Hopefully the latter will increase gradually but they way the blood counts are done means it can be tricky to get an accurate level.

He gets another go at eating some solids and accepts some happily. Sadly this comes up a bit later, although we give him some more about half an hour later which stays down. He seems content to take little bits and this needs to be continued. We sit and discuss this a bit later and wonder whether the constant trickle of milk and the TPN will take the edge off his appetite.

Rachel goes out in the afternoon to get some food for Fred and I. The yoghurt does not go down well with Fred but we will keep trying.

On my limited travels I see Helen moving in to the non-iso bit, so may bump into her in due course.

Not a lot happens today and I do not bother to venture out. It is a nice day but I opt to stay with Fred.

Generally Fred seems fine but he is a bit grumbly today and has been sick a few times and is difficult to settle. We try to look for more teeth in his head but it is too difficult.

The cash cow is nearly finished now as the horns have been applied. I need to think how to do the udders, but need to combine this with a way to get at the money. Rachel suggested I use the teat from one of Freds disposable milk bottles, and incorporate the neck into the underside of the cow. This sounds ideal and now have to wait for Fred to have some more milk delivered.

Day 247 (Wed 07 Mar)(Day Plus 22)Thu, 03/08/2007 - 00:22 — endc011
Fred continues to tolerate his milk on the pump but every now and then he has to yuck some up. It is not on the same frequency as previously but obviously would be better in. However, as there are 12 or so hours in between he must be getting some nutrition from it whilst it is in his stomach.

He is now on Paediasure which comes in 500ml bottles, and which are hung from the pump and get dispensed at whatever rate you want. Fred is currently on 5 – 10ml an hour, but with 85% of his requirements topped up with the TPN, which runs for 18 hours a day. His milk goes via the NG tube over 20 hours so he does not experience the flavour until it comes back up again. However we offer him 5 spoons of blueberry and apple baby rice which goes down well and is another step in the right direction.

His weight has crept back up to 9.8kg in the morning and we have to wait and see what happens with the fluid balance. After a while the fluid moves out to the tissue and means it is less easy to remove, although the diuretics help. Once the fluids can come off the body, and back to be wee’d out, the better Fred should be. Too much diuretic will dry him out in one place too much and he will be soggy in another so it is a fine balancing act.

His neutrophil count today is 0.78 so has come up a bit, and his CRP is at 30, being a little drop.

We have tried to keep him dozing today with the blinds down. He is easily distracted by what is going on outside, so when the blind is down he settles and snores quietly.

One of Fred’s neighbours in iso heads back to their home hospital today, after a few months here. They cleared out their stuff from Sam’s House yesterday evening and so today we saw her wheeled off to an ambulance for the return journey. One of the nurses from here also attends, plus the two ambulance staff.

My cash cow progresses well with the ears and tail on, plus two front legs. It has all the hallmarks at the moment of a pig, but should be transformed once painted black and white. I have manufactured two experimental horns which will take a while to dry.

Day 246 (Tue 06 Mar)(Day Plus 21)Wed, 03/07/2007 - 03:23 — endc011
The mutton was cooked slowly last night once I got in and made two meals so Rachel will have some tonight. Cooking slowly meant I ate at 200h ish, but meant I could sit in my Dettol bath for just a bit longer.

He had a good night again but it appears he is holding onto fluids a bit. He is 650 positive this morning, which means he now weighs around 9.9kg. He did have some platelets last night and maybe some other stuff which makes him retains, but he gets his diuretic and so nappies are heavy once again. When I weighed him at 1700h he was 9.66kg so has lost a little more which is good news.

His counts are also doing well today and his WBC is now around 0.8, and his CRP is 33. The results of the NPA come back negative too, although they do not look for the common cold virus. We think that is what he has that happened to coincide with the tail end of his mucusitus. They will take some other samples today to check for other stomach bugs, just to see how he is going.

It is three weeks ago today he had his transplant and we await the problems we were promised with anticipation. I am not sure what happens next, other than the risk of GvHD occurring, but we told that so long as the counts come up slowly then this is less likely. The days seem to have flown by and it is easy to get into a routine, although in the back of your mind you worry that today will be the day he starts having problems.

Fred had another music session today again and this time really got into the swing of it. Julia, Rachel, Fred and I ended on singing “For He’s a Jolly Good Fellow” whilst all of us thrashed away on our instruments. He joined in a lot more today and was also more concentrated on what he is doing. I have put a couple of photographs on the ‘blog and Rachel can be seen waving a carrot at Fred. It is a rattle of sorts.

It is nice to be able to chat to the other parents and their relatives. You soon get to find out that there are many many different types of cancer and probably a multiple more of different treatments, or protocols. It certainly helps both parties to be able to chat to people who are “behind” you in progress, and they ask about what happens and what to expect. One of the biggest fears is not actually knowing what happens. Sometimes I get the impression from staff they give you very general and vague impressions purposely, which is fine if you do not really want to know, but can be frustrating if you are a person whom needs to know. Everyone is different of course.

In some respects Fred has been lucky with how he has reacted to the chemotherapy in the past, and on one block was with us up at CLIC House most of that month, and only popped in each day to have his bloods done. It was high strength stuff so surprised us he felt so well. When we first came here I feared that the second the chemotherapy is given, then sickness and awful side effects would happen immediately, whereas in reality it appeared to come on gradually which enables you to become used to it in a way. However, each treatment is different and different patients react in different ways.

I have also progressed a bit with the cash cow and this afternoon constructed some ears, and the bottom lip. Rachel - being a ruminatory expert - drew a Friesian for me highlighting the various bits which I was impressed with. However in my haste to tear up the sugar paper the drawing sadly disappeared and is now stuck all over his mouth. The ears are oversized, as the bovine beast will have to be stylised in a way. I have also squirreled away a cable tie they use to seal the yellow contaminated waste bags. These have a serial number stamped onto them and are used to identify which ward the bag came from, but in our case it will become the animal’s ear tag.

There was an article in the Herald Express today about my colleagues football match at Clennon Valley this evening with proceeds going to CLIC Sargent. Once I learn more about it I will let you know via the ‘blog and hope someone will send me some photographs so I can put it on the Media section. My dad and brother went down to Clennon to have a look as well. At 1845h the score was 2 - 2 and it had just started to rain. I spoke to my brother at that time and they were all squeezing into the bunker to keep dry and it sounded all quite crowded. I wish I had been able to attend now.

Cut and paste the Heralds link if you did not see the article:

http://www.thisissouthdevon.co.uk/displayNode.jsp?nodeId=134844&command=displayContent&sourceNode=134828&contentPK=16808387&moduleName=InternalSearch&formname=sidebarsearch

Clare asked about Fred’s first birthday (Mondays ‘blog) which is indeed on the 19th March and where I suspect we will still be in isolation. Fred is limited to what toys he can have in here, as they need to be boil washed and wipeable. Space is at a premium and even I am finding it hard to hoard my craft supplies. He also has an impressive range especially from his Christmas booty so we thought that if people wanted to, they could send cards to the hospital and then we could have the fun of opening them here and getting Fred to deal with the incoming post. We will probably need to open them outside the room but we do that, rather than staff. It would also enable his room to have some colour and interest. Clare also asked for the address so here we are: Mst. Frederick J Wills, BMT Ward, Level 7, Bristol Royal Children’s Hospital, Upper Maudlin Street, Bristol BS2 8BJ. If we have moved then it will find its way to us anyway.

I am hoping that all will be well with Fred so that I can head home this coming weekend. There are many things to do, including getting an accurate reading to the gas company. We have hardly used any fuel this winter but I did not have the opportunity to email them the latest reading. This has meant that they have estimated our bill (at £300.00) and decided to increase our monthly payments to £90.00. It should be a lot less than that. I hope.

I am also going to grasp the nettle and get the fence post up whilst I am back. If there is a willing pair of hands about can they let me know? All I need to do on the Saturday or Sunday, is knock a Metpost base into the stump of the old post, knock the 6’ post into the Metpost, and then re-fix the two 6’ fence panels into the clips. No digging will be involved as I will re-use the existing concrete base in the ground.

Day 245 (Mon 05 Mar)(Day Plus 20)Tue, 03/06/2007 - 01:34 — endc011
Last evening I was quietly carrying out a spot of podiatric care on myself under the light of the opthalmoscope, when I was aware of someone peering in at me. One of the doctors was trying to see what I was doing through the screen so I hurriedly had to sweep aside some bits of dead skin, before she popped in.

Fred did not wake me very much again, although the nurse said he was a little unsettled through the night. He seems to have a bit of a cough too, that only occurs occasionally through the day but seems to irritate him as he cannot shift the mucus easily. Once he has cleared his throat he is happy for a few hours.

His bum has all cleared up now and is a healthy pink thankfully. The honey cream seemed to work well. I was told that it is expensive although only has 15ml per tube. It is from Australian honey bees and is irradiated, but I do not know how much it costs.

Fred was given a Disney Lion King sleep suit the other day by Yvonne the play therapist. The hospital took delivery of a lot of Disney clothes at Christmas, and this has found its way to Fred. He will grow into it I feel, as it is quite long, but he can spy it from his bed.

My mum and dad visited today and dad could come through and meet with Fred. Fred thought it was all great fun seeing a familiar face and behaved well though was tired at the end of the visit. You can only have two visitors in the room at any one time so mum and Rachel stayed in reception. As it was raining we headed over to the Bay Horse for some lunch and a pint which was good.

The cash cow has not progressed much today, other than the balloon deflated over night. I have also put on the nose and have taken delivery of some bits and bobs to make the udders, tail and ears.

Other than that Fred still seems to be plodding along with himself which is good. He is due a platelet infusion later this evening as they have dropped again. Obviously there is a long way to go and complications can appear suddenly but all the time he gets stronger, the more “credit” he has for dealing with problems in the future I hope.

2007-03-04T18:33:00.000Z

Day 244 (Sun 04 Mar)(Day Plus 19)Mon, 03/05/2007 - 01:51 — endc011
Last evening there was a partial eclipse of the moon so every now and then I popped out into the road to see what was happening. As the weather dry and very clear I had a clear view, but was a bit of an anticlimax. I remember seeing one a few years ago and it was a bit more dramatic than what I saw yesterday.

I feast on the chilli con carne that Rachel made yesterday and it is very good – probably better than the night it was made. We try to do that - make extra or do something for the following night for the other to use. I need to make a stew or something here and have ordered some mutton for that, or I may make a pie. I do want to make salmon en croute as it is simple and easy to make. I want to bring my slow cooker up as we used to use this a lot of the time during the winter, and is so easy to make things in bulk. As it is a communal kitchen here you cannot really leave it there cooking all day, as some kid with a sticky beak will end up with all over his head, with me being responsible.

I have to go to the car park on the way down to renew the parking ticket. Luckily here it is £1.60 a week in the NHS car park if you are a regular visitor. Otherwise it is £11.00 for 12 hours. I grab some breakfast in St Michaels Hospital Riverside café, which is opposite the road to the house and then trundle down the hill in the rain.

Fred behaves well again today although he still is a bit gooey, although this may well be a cold or something. It is difficult to tell, but other than that Fred seems well. He is smiling quite a lot now but has not being saying much where he was quite vocal before. He is offered milk in the bottle but does not want any today.

Feeding can be a real problem sometimes here and the TPN/NG feeds could go on for a while.

It is the Slow Food Market in Corn Street today and we have not been for a couple of months. It is on the first Sunday of each month and even though it is pouring with rain, we know it should have a number of stalls. There are a variety of traders there but as we are limited on space at the house it can be difficult to get creative. It ranges from meat to hand made pies through to garlic and tomato vendors. The tomato man is good because he seems to have every type of tomato ranging from the tiger marked one through to yellow and orange shaped ones.

I collect some cubed mutton from one of the traders. They are located near Rachel’s parents and we usually stop for a chat with them when we see them here. That is where I bought my goats leg from a few months back which was very nice. However, I heard that there was a national goat shortage some months ago due to it becoming popular, so that may be why there was none available today. They also do a range of sausages which we tend to prefer and buy when we can. Have a look at their website on my links section of the homepage.

Rachel and I have not eaten with each other for a few months now so we leave the market and go across to the Commercial Rooms for some lunch. No bargain curries on a Sunday, though there can be remnants of the Thursday night Curry Club on a Friday and sometimes possibly a Saturday if you are lucky, where they are priced at £2.99 including naan and popadoms - but no drink included though.

That’s enough of the food promotions.

I carry on with my cash cow and Phase 1 is now complete. It has four layers and feels fairly solid with very little flex. It has a bit of weight to it bit I shall wait until tomorrow before I pop the balloon.

The doctors are pleased with his progress so far and his CRP is dropping gradually, now at 66. His WBC remains at 0.49 though probably is best viewed over a number of days.

His temperature still floats about the 37.5c which is OK but we want this infection to go as I worry it can flare up again.

Day 243 (Sat 03 Mar)(Day Plus 18)Sun, 03/04/2007 - 01:51 — endc011
His mucusitus seems to be settling now and he is much happier in himself at the moment. He is taking more interest in things going on around him, even stuff happening some distance away.

Last night he was settled again and slept nearly all the way through. I got up regularly to check his nappy as he still has Frusemide to keep his fluid balance under control.

A good nights sleep means an early awakening though and I hear him snuffling around in the cot, occasionally kicking the bars. He can then be heard pulling at the tambourine at the top of the bed and I hear a clumsy tapping sound on it. The bells are next and I resign myself to getting up. Breakfast is served a short while later.

One of the doctors is passing and pops in to discuss his blood results. Basically he is pleased with Fred’s progress and his WBC is 0.49 this morning, and this total comprises three elements with one being neutrophils. We do not want to see a rapid increase in WBC as this is likely to lead to Graft versus Host Disease (GvHD see glossary) and so is just right at the moment. His CRP is also 88 following the last two days which went up and then down. We need the CRP to drop below 10 so that Fred can concentrate on feeling better.

I asked a bit more about his collapsed lungs and was advised the cause of it was likely to be the sheer number of general anaesthetics and the fact his liver is still enlarged, pushing up on the stomach and lungs. Also he has been lying a lot, so combined with yesterday’s explanation it all appears not to be of concern.

The weather today is bright and sunny and so I wander into town and it feels almost like summer. There is a gospel/rap band in the square and I sit and listen to this for a bit in the sun. After a short while and something to eat I wander back to the hospital.

In the afternoon I continue with the papier mache cow. I shall call it Fredericks NHS Cash Cow. It is progressing well and I am on my third layer today and it is all rather therapeutic. I have used paper towels for the latest layer to smooth it out a bit, and have also been rooting about the room looking bits to use. I have found that the digital thermometer probe covers could be good as either small horns, or udders. However we have probably decided on using the disposable teats in some way for the udders. I have also found various other bits of plastic destined for the refuse bin which I shall incorporate somehow.

Fred has been wobbling his head a lot looking about the room whilst patting the bed repeatedly. He is as pleased as Punch when we cheer him on.

Fred had a go at some milk from the bottle. It is some three months or so since he was interested in the bottle and we put this down to the fact that chemotherapy can affect your taste buds, and that food can have a metallic taste. Fred has vigorously declined offers of milk over the last few weeks and decided today to accept the 10ml we offered him. He is getting his TPN plus 5ml an hour of formula milk off the pump. He seems happy to drink it and this is a good sign that he has not forgotten how to feed.

Day 242 (Fri 02 Mar)(Day Plus 17)Sat, 03/03/2007 - 03:14 — endc011
Fred continues to be quite chirpy but is still got a bit of a streaming snotty nose, which only serves to annoy him at times.

He is quite sleepy at times and this must only be good for him and lets us drift off too.

During the night Rachel woke up and wondered what the liquid on the floor was in the gloom. She traced it back to his NJ tube which he had managed to pull out and so it was on a free drainage, so to speak, from the milk pump. That was stopped and so they waited until morning to replace it.

There was discussion about whether to put it down as an NJ or do an NG this time. The latter was chosen and that went down before I arrived this morning. He did not like it, but that’s what comes of fiddling with things.

He was happy during the day and took part in as much as he could. The music lesson was cancelled as Julia has a sore throat so we improvised with our own instruments here. He has got the hang of banging the tambourine in time, sometimes with the rattle that Sheree sent.

My brother visited as he was passing and so had a quick chat. He brought the Herald Express up so I caught up with what was not happening in Torbay.

I have also started my papier mache piggy bank. It won’t actually be a pig but a cow as I said before. It will store money so will be known as a “cash cow.” I have a surplus of loose change in locker still and it is continuing to drop in to the persons below.

I started the first layer this afternoon and completed it an hour or two later, so see the photographs. Fred was very curious about the whole thing and watched the great spectacle unfold before his very eyes. It was quite a tiring job for me, and I have not had to concentrate like that for months but I have to do it in the window opposite the nurses station and corridor. This means that people can watch what I am doing and I suspect they think I am a little odd. Good job Helen D only spied us busking the other day as she may have suspected I was “regressing” in here had she seen the papier mache creation. (Helen, did you get my email?)

At the moment is drying on the window. I will move it in to the store later as there is a risk of it bursting during the night which will cause no end of problems in here. It is resting in a cup weighed down with syringe bungs.

Fred counts are still OK although his CRP has gone up a little today. I had hoped they would be a bit lower, but we will have to wait and see what he does with this infection.

The results of the CT scan come back and we learn that there is not any evidence of infection so that is good. There is however an area which suggests part of the lung, or lungs have collapsed. It is not a great problem but is not common either. It should re-inflate but is usually seen in people who cannot cough properly which Fred can’t. Hopefully this will not cause him any problems. As far as I am aware his oxygen saturation is fine.

During the afternoon Fred slips the NG tube out again and is only tubeless for a short while. I am not a fan of his NG-ing so leave the room whilst Rachel and the nurse battle to get the tube down the nose and throat again. When I return a very grumpy Fred is in his bed with a well taped tube on his cheek. It is tested by drawing back a syringe and testing again for acid with indicator strips. However what comes back is a bit vague so is tried again. This time nothing comes back so the nurse requests Fred be x-rayed to check the position. They come up to do the x-ray and Fred obliges as normal although there is some protestation during the session.

He also gets a quick visit from the ward clerk on Ward 34 and so we catch up with things down there.

I spoke to Hayley in the office and learn a bit more about the football match to raise some money for CLIC Sargent. Her email says that “members of staff from Building Control and Planning will be going head to head with a team from Torbay Care Trust on Tuesday 6 March from 6pm until 7pm at Clennon Valley Leisure Centre. The leisure centre has kindly waived the £42 pitch fee and all of the players are paying to enter.

Council staff have also got involved by paying £1 to enter the draw to guess the timing of the first goal scored – there will be a prize and proceeds to the charity.

Anyone wishing to support the teams should contact Hayley Regan on 01803 (20)7776 and to enter the ‘first goal draw’ if minutes still available or for any donations, suggestions for fundraising etc.

I will not be able to attend but it sounds like good fun anyway. I am sure Fred would approve of the whole thing and even become involved in some way of he could. I may get him a fog horn to hoot on.

Last evening Michelle - the oncology consultant who has been looking after Fred’s treatment since July last year - said it was her birthday. She asked how Fred had managed to sign the card which her colleagues gave to her, as someone had written “Freddie” amongst the other signatures………. We are now putting the cot sides up a bit higher.

Day 241 (Thu 01 Mar)(Day Plus 16)Fri, 03/02/2007 - 01:13 — endc011
Fred continues to seem happy and so last night he slept well, as did I. He still has a bit of the mucusitus which causes him annoyance every now and then, as he finds it difficult to shift. Once expelled, he is very relaxed until the next time.

He was NBM from 0530h this morning and so his milk was taken down at that time. He needs four hours clear as he was due an anaesthetic prior to the CT scan on his chest. That slot is pencilled in at 0930h and he is all ready to go at that time. It does mean that I miss breakfast.

He is wheeled down on to Level 5 and through the BRI and down a few levels again in the lifts. The porters usually go via the BRI as it avoids A and E which can be a bit troublesome at times, and difficult with a little tot like Fred with clowns around. As normal, his trolley is loaded with oxygen and the suction bags and boxes accompany us on the journey should there be problems on the way back. The lifts can be unpredictable so this porter brings extra bottles just in case.

Fred is once again on best behaviour and is placed on the bed of the scanner. He lies quietly and everyone except me goes into the ante room to peer through the screen at the scanner. I wear an extra heavy lead gown this time. It is a large doughnut shaped device, cream in colour with a very narrow sliding bed that goes through the centre and back again. The area of the image being scanned is identified by a laser grid projected onto his chest.

It is not noisy, but sounds like a PC booting up, albeit louder. If he was older I am sure it would be a worrying thing to look at, but he of course does not feel anything at all.

For a second time Fred is startled by a loud automated voice telling him to “hold your breath” and he slowly trundles in whilst I am at the other end holding his arms in a horizontal position. It moves in and out and he gets a little upset as he thinks he has been left alone I think. A few seconds later the voice tells him to “breathe normally.”

The anaesthetist comes out to say she had obviously not needed to give Fred a GA which is good for everyone.

He gets loaded back up onto his own trolley bed after the radiographer gives the thumbs up that the image is good enough.

He spends the day quite happy and I get a lift across to Temple Meads as I want to have a look at the Imperial and Commonwealth Museum next to it. As June is with Fred and Rachel, and I plan to have a couple of hours off and a look around but it is £7.00 to get in and I do not have much time, so decide will re-visit another day.

I walk the 15 minute journey back to the centre and pass the Chinese supermarket. I have seen this place before and go in to look about. It is busy with restaurateurs by the look of what they are buying and I get some fresh noodles and oil, plus some other stuff. They have a frozen food section which comprises all sorts of weird looking things, including a bag of moon fish which look like disc shaped mackerel. Others look like trays of oysters frozen in their shells and some crabs which may still be alive. I poke them but do not want to bring anything back for Fred.

I purchase another duvet set for the slightly cheaper £4.49 as the ‘tractor’ set needs to be washed here every two or three days. The new one is quite colourful and Fred thought it was interesting for a few minutes.

Rachel and her mum go off for lunch whilst I stay with Fred. I am planning the design of my cow bank. The glue has dried up as we can only keep the PVA glue for 24 hours in the room. It grows fungus otherwise and so it is changed regularly.

He was due another massage but fell asleep just before his appointment. As Eileen was leaving he woke again but the moment was lost and so he dribbled and laughed instead.

Fred’s Hb levels have gradually been dropping and this means he gets a blood transfusion late afternoon/early evening. His CRP has dropped a bit further to 88, when it was 103 yesterday and 105 before. The target is below 10 and it can either drop slowly or rapidly.
The number of page views of the 'blog tands at 61,499 today.

In closing we learn that sadly Memphis (2 ½ years old) a little boy whose family we met whilst on Ward 34 had passed away recently. He had been diagnosed with JMML or juvenile myelomonocytic leukaemia but had been unable to locate a donor although his dad, a half match, stepped forward. This goes to show how important it is to have as many donors available on the register as you never know what is around the corner. If you would like to learn more about Memphis’ story have a look at the Yvette Gate website referred to on my homepage.

Day 240 (Wed 28 Feb)(Day Plus 15)Thu, 03/01/2007 - 02:15 — endc011
Rachel and Fred had a good night last night and he dislodged one of the big bits of dried stuff in his mouth overnight which is good for him.

He seems to be breathing more easily now and so he is not so restless when he is kipping. Before I am sure he felt he was about to cough or choke so did not go into deep sleep.

Today he has been active and looking quite well. He required some more platelets and potassium, so hopefully he will benefit from this.

His bum is healing well but there is an area where the skin has broken down and so we need to be careful he does not get an infection here. I think it hurts a little as he shouts when you get near it or sit him up. We have asked Sarah for the refrigerated Intrasite gel dressings as these worked last time.

June, Rachel’s mum arrived today and has not seen Fred for a few weeks. Thankfully he looks better than he did a week ago and is of course more alert. He is pleased to see a different face though and waves happily. As we are only allowed two visitors in the room at one time I nip up to the house for a bit and then into town to get some food for tonight.

As June is here Rachel and I head out for a couple of hours. We wanted to go to the Book Barn, a second hand book warehouse, but they are now closed to the public. Instead we drive over to Clifton Village to have a look around and then head back.

I speak with one of the doctors who is pleased with his progress so far. His CRP is not coming down as quick as he would like and there was (and is) concern that an infection will appear in his line again which I gather will really complicate matters at this stage. His WBC is very gradually increasing so this looks good in a way.

Later in the day his temperature has started to increase slightly and is at 38.1c. They take some blood cultures and will see what happens.

It is easy to be lulled in to a false sense of security when Fred seems so well, and so each day is taken as it comes now, even more so than before.

The results of one of the earlier NPAs was negative although they will keep checking.

Day 239 (Tue 27 Feb)(Day Plus 14)Wed, 02/28/2007 - 00:51 — endc011
Last evening Fred and I had a pleasant surprise in that his nurse overnight was Dan. He happened to be the first nurse to look after Fred on PICU (intensive care) in July of last year and would have been the very first person we met when we entered the intensive care ward. Bristol would have known Fred was coming in from around 0000h I suspect and he arrived a few hours later. I remember it being around 0600h in the morning when we eventually got there on the Saturday, and found Fred already on the ward, and well - no longer our normal Fred. It was a very bright sunny morning and the ward seemed quiet at that hour and so did Fred. Everything in our lives had changed by then, and I certainly did not realise Rachel and I would still be here some eight months later. He was only a few weeks old then - about 14 weeks.

It was one of those memories and situations which you retain as a very clear image in your mind, and won’t ever forget.

It was good to have a chat with him and catch up, and I felt like he knew Fred well, but of course he had not set eyes on him for months. Fred had stayed in PICU for nearly two weeks and was looked after by Dan a few times. However I showed him some photos of Fred taken at that time and he surprisingly recalled which bed spaces Fred had been in during his stay on the ward, as well as some of his treatments and problems which I thought was impressive given the amount of patients that come through their doors.

Fred slept well during the night and I managed to keep one step ahead of his nappy-filling. He seemed quite happy but he kept a careful eye on Dan during the whole shift, as I am sure he recognised him.

He needs some more potassium again today and we are told that his neutrophils have increased to 0.16 which is a glimmer of hope. However, tomorrow the count may be less and should not be viewed in isolation as a good sign. Hopefully it is a suggestion that his immune system can think about re-starting and get rid of the mucusitus.

His CRP has also dropped again suggesting the infection is being dealt with by the antibiotics, but again this can fluctuate. His temperature has also remained fairly stable over the last 24 hours at just under 37c, but this too can go wobbly at short notice.

Fred seems to be more aware of his surroundings as well, and smiled at me last night from behind his dummy. Only a little one, but he did it a few times but cried when I prised his dummy out to have a closer look.

He has slept quite a bit today, and seems to be happier lying on his back rather than side so we hope this another good sign. The doctors seem to be quite happy with him today and we hope it stays this way.

His weight has now gone to 9.1kg which suggests he is no longer positive on his fluids. This seems to be his natural weight at this time.

Fred has a further music lesson in the afternoon, and gets going with his maracas, Julia on the guitar, Rachel on Slomo, and myself on the tambo. once again. During this time a party of people go by, looking as if they were being shown around. It dawned on me that it was Tuesday and 1530h and that Helen D, Rebekah (with punky hair) and family would be here at that time.

Fred was in full rattle-shake at the time, but as he is Norwalk positive at the moment we were unable to pop out and say “hello” which was shame. He gave a wave through the screen though as best he could as they headed back off the ward.

The little girl opposite Fred has been making a papier mache piggy bank over the last few days, and is now nearing completion. The play therapist came in to see Fred this afternoon and will be bringing me PVA glue, sugar paper and balloons to make one myself. However it will either be a cow bank or a zebra bank. These are to match Fred’s “signature” suits that he is growing out of. It will give me something to do, and is probably a sure sign of mild madness setting in after all this time. We have a wodge of coins in the locker without a home so will put them in the cow bank, once washed in the Azowipe.

We also get a visit from Jamie and Kate from Ward 34 as they are in the area. We have a good chat about various things and Fred watches on, giving a wave at them. It is nice to see them both again and Fred seems pleased too.

Day 238 (Mon 26 Feb)(Day Plus 13)Tue, 02/27/2007 - 03:27 — endc011
Fred was generally snuffly and unsettled for Rachel last night which did not help.

However today he has been fairly settled and has done an amount of dozing and nappy filling. He seems fairly content at the moment and has been peering at people going by the window, managing a floppy wave before reclining again.

From our glazed screen you can watch the new arrivals coming in which makes you wonder how they are and where are they from. The BMT Unit takes adults as well as children from all over the world so you do see some sights. Occasionally a person will be off the ward, such as to Intensive Care and this makes you realise how vulnerable every patient is here.

Fred’s mucus seems to be subsiding and whilst he is still a bit gummy, it is not being replaced in the same way. However, there is concern that he is retaining a temperature and not responding quite so well to some of the drugs to shift his wheeziness, and so will be having a CT of the chest on Thursday. He has had one before to look for pneumonia but I am assured that this is routine at this stage to check that there is not any fungal infections floating around particularly on his lung.

He is also due a NPA (nose sucking) tomorrow morning when his nose should be full of mucus, although he does not know this yet.

His bum also is holding out at the moment and to me does not look too bad. However that can change rapidly with each nappy, particularly if his wee is extra potent. The situation can be exacerbated by the diuretics making his nappy constantly heavy with liquid but the honey cream seems to work well.

Rachel headed back early today as she did not have a good night and it is nice and sunny today. Hopefully she will collect some bargains up at Somerfield this evening after a hot bath. Last night I came across a small ½ shoulder of lamb for £1.12 (bargain corner) so cooked that spiked with rosemary and slivers of garlic. I also did a variation of hasselback potato - with a baking spud and the juice/fat of the roasted lamb instead of butter. Only the bone remained last night. They have a habit of putting some of the bargains in to the wire hand baskets if there is not enough room on the shelf though I have recently plundered a basket laden with yellow “reduced” stickers only to find out it was a fellow bargain shopper’s basket. I had to jettison a few items onto the shelves as I went, as I did not have the courage to go back and own up I had fished them out, and also the booty I was holding would be recognisable to them.

Before retiring last night I played a game of Bopit which was good and proved my reactions were as good as ever despite a few glasses of the Browns’ red wine which I took delivery of the other day in reception.

We received a card from the donor this morning which was another nice surprise. It had to be anonymous but wished (Fred) well, so we hopefully will be able to return one anonymously too.

I also received some good news from the news agency which circulated the article about Freds illness to the national newspapers in December where it contained inaccuracies and assumptions, and they have apologised and agreed to donate the money they received from the story to a charity of our choice, so that little saga is now closed thankfully.

However I continue my battle with the Carphone Warehouse/TalkTalk debacle relentlessly still……

Day 237 (Sun 25 Feb)(Day Plus 12)Mon, 02/26/2007 - 00:25 — endc011
Fred’s mouth yesterday evening was really quite troublesome and the top of his mouth was coated with a semi-solid gunge, as was his tongue. When the two joined they stick together and this caused him lots of little choking type facial expressions.

We suctioned him again quite late and managed to budge quite a bit, which left him breathing much clearer.

He gets some more platelets running so that should top him up a bit.

It was also a success in that Fred slept very well during the night, and was not in discomfort. This was good for me too, but we needed to keep an eye on his nappies. He was given Frusemide again and usually within 15 minutes or so his wee output will increase dramatically although it only seems to last for an hour or two, and then slow down a bit.

I agreed with his nurse that whoever got to him first during the night could change his nappy and I managed to get in there first on a couple of occasions. I found a note saying his nappy had been changed at 0645h, when I awoke at 0830h.

His weight is slightly better at 9.3kg this morning and it will depend on his fluid input during the day to how well he does. He should get some more diuretic later I think anyway to help him along.

His potassium levels are low again and he is due some more of that. He was high the other day in this respect.

I head into town at lunchtime to get some pain relief for Rachel’s back and bump in to David Gate. I congratulate him on his new website and have a chat outside the hospital.

Fred is back sucking his dummy and his mouth seems a lot more comfortable because of this. It is gradually clearing of gunge although it may well be ulcers next. We shall have to see.

He seems more alert than a few days ago and is rolling about again. One comical things is he is lying on his front or side quite a lot now at night. He will appear to be fast asleep and then wake suddenly, pushing his head and chest upright to look around him from side to side, as it to check if we are still near him. He will have both eyes almost closed, spot us and then flop back down asleep again. He reminds of a meerkat for those few seconds.

Day 236 (Sat 24 Feb)(Day Plus 11)Sun, 02/25/2007 - 02:41 — endc011
Another unsettled night for Rachel and Fred meant that when I came in, both looked a little bleary eyed. Not so much sickness and pain from him last night, but more difficulty in breathing easily and general grumpiness.

His bum is still a cause for concern and will become a potential infection site if not monitored properly. In the past we have tried Sudocrem, then Cavilon and then a mixture of Nystatin, Mitanium and paraffin gel. All work well to a point with the latter being successful last time.

However he is now prescribed some honey cream (Mesitran) which many of the staff feel is the best way at this stage to deal with it. It looks like a tube of Crunchie honeycomb in colour and has a slightly gritty texture to it which I think melts once warmed. His bum look generally less red today, but the localised sites look a bit redder.

He is still has a positive fluid balance weighing in at 9.4kg. When he is weighed we normally put the scales on the floor, with a towel or something in the bowl in which to lie Fred. Being on the floor is not the best place really and this morning as Rachel was lifting Fred, she felt a “click” in her back and then excruciating pain. Fred just about made it to the bed, but Rachel remained in situ for five minutes or so, rigid in pain. After shuffling over to the bedside chair she remained still to try and let the pain subside, and felt better about an hour later.

Being in hospital means having a nurse a few feet away of course and we had a chat with one of the nurses who specialises in massage. Luckily Rachel’s back problem seemed to subside gradually and later she managed to trundle off up the road to get some bits and pieces. She could have had a mini hot water bottle if she wanted, which Fred has had in the past. It is a bag of saline warmed up which seems to be a good way to heat up a small area.

As Rach walked through Reception one of the porters called out to say he had just taken a package up to Level 7 addressed to Fred. Once Rachel was back we expected it to be brought to our room, but remembered it was the weekend and post was likely to languish until Monday. We sat and discussed the mysterious package and speculated who it was from. I wondered if it was a food parcel from home or something like that as I have not been on Ebay for a while. It wasn’t a crate of beer from the Brown family as I had collected that yesterday morning and taken it back to the house. As I was heading out in the afternoon to get something to eat, I went looking for the parcel and I discovered a large white jiffy bag on the clerk’s desk over in non-iso. It looked very interesting indeed although I did not recognise the name of the sender, but it was addressed to Fred himself. I restrained myself from opening it there are then and ventured off into town even more curious now. I rang Rachel to ask if she recognised the name, but did not.

As he has difficulty opening envelopes, I did it for him on my return and what was in the package really made my day. A lady had read about Fred in the Daily Mail (in December last year) and by coincidence had discovered the ‘blog the same day through the Anthony Nolan Trust website. She has been following his progress ever since then and she enclosed some presents for our Fred. It also contained a lovely covering letter from her and so gave us yet another lovely surprise via Royal Mail. Rachel and I were so pleased that a stranger had gone to the trouble of doing this and it was certainly well appreciated. Fred has limited storage space so we shall let him have one toy at a time; otherwise we spend an age clearing his bed out of his belongings when changing him or the sheets, usually at 3 or 4 in the morning. Today he is presented with his first toy from Sheree - Slomo the Tortoise rattle - check out the latest photographs.

As usual he will peer at the toy for a bit and realises it is not one he has seen before. Then his arm will tentatively reach out and feel it for a bit, before grasping it and bringing it back toward him quickly. If you try and take it off him at that point his grip will tighten and he will fight you for it. Normally he will then roll over and spend a while exploring it, but today he remains on his front, probably due to a sore bum. He shakes it cautiously looking at us and then Slomo, and then starts gnawing at it. He is still quite sleepy but carries on with the shaking and rattling. He clearly enjoys news things, as his surroundings, do not change and we need to be mindful that he is stimulated properly, otherwise he will get bored. Or “bored-er”.

Fred gets his big kiss from Sheree passed on, and I am sure he mumbles a “thank you.”

He started on his GCSF yesterday apparently (see glossary) and this stimulates the growth of certain cells, and which give him a kick start to increasing his blood counts. Chemotherapy aims to destroy the fast dividing cells in the body (such as hair and those found in the mouth or throat, plus leukaemic cells) which is why they are affected so extremely compared to other cells. I understand that fast dividing cells means fast growing and so the mucusitus should clear quickly once they come back.

He gets a few more suction sessions today to remove the accessible bits, and is getting to settle quickly afterwards. It is really quite rubbery now and is difficult to shift but as his platelet counts are dropping you have to be careful not to injure the lining of his mouth as well. Leave it, and he seems to start choking on it at night which is frightening for him and us.

We have own music session with the drums and tambourine. Fred clutches the drumstick and can percuss quite happily albeit in a staccato fashion. After a while he is back pulling on his tubes so I think bell ringing may be his thing.

He should also get some more platelets later as you tend to get through them when you have a temperature or infection. His CRP is also higher (160 yesterday) and has dropped by 30 which hopefully means his infection is passing. He gets tested for antibiotic levels during the day as well.

I have managed to find a substantial ready meal from Tesco’s as most seem to be a feeble 300g or so and these are 500g. I have also located some mini naan breads to pack it out a bit. As you tend to get your food here earlier than normal, I get hungry by late evening and cannot nip out to get something easily.

Fred has generally been quite lethargic today and not so sick as last week. His mucus is still causing him irritation and this is to be expected. He does still tend to get spasms of pain which wakes him unexpectedly and it may well be that they increase his pain relief to morphine as he really does need a block of sleep, rather than short naps.

All of this disturbance makes him look pretty grim, though occasionally he does shine through. I try not to take any grotty photographs of Fred if I can. The beauty of digital photography is that you can take several and delete those where he does not look photogenic.

Day 235 (Fri 23 Feb)(Day Plus 10)Sat, 02/24/2007 - 01:21 — endc011
Last night Fred repeated his “night before” in that neither of us had any sleep. I think it must have been the longest night so far as both of us saw each hour in. He was very snuffly and could not clear his mucus, so simply could not sleep. When he did fall asleep I took the opportunity to try as well, but then he would awaken again.

Fred is rubbing his nose and eyes quite a lot now as they must itch like mad. His button nose was shining last night and it was obviously running because the new dressings kept coming adrift. I cannot keep putting dressing upon dressing and he is tugging at the tube which dislodges it. I am fearful that the NJ will be pulled out of position and we end up in the same position we have been for the last couple of weeks with Fred in a lot of discomfort and no one sure whether it is in the correct place.

During the night Fred is regularly waking in considerable abdominal pain, and it is heartbreaking to see him like this. All we want for him is to be settled and be on the road to recovery.

He tries to sleep but wakes with a start and begins sobbing again. His cramps come back and are reminiscent of the other week. He gets some drugs to deal with it thankfully.

We do not know how long Fred will suffer because of the transplant but we are on Day Plus 10 now, so time has really flown. I am hoping that soon we can see less suffering although I think we have only just started.

His waking up seemed like very 15 minutes or so to me, and probably was. The World Service murmured away in the background but it was still a long night. I suspect Rachel will suffer same tonight.

One of the doctors calculated that Fred was likely to be 300ml positive, i.e. he had taken on board 300ml of what had gone in. Normally he will process this fairly easily and his nappies are weighed each time, although if the rate coming in exceeds what is coming out, he will become “positive.” 1ml equates to about 1g, so a litre equals a kilo. Fred has been around the 9.1kg mark for a bit now and when I weigh him he is indeed 300 positive, weighing 9.4kg.

Fred has experienced these problems before where he has got soggy with liquid and that has its own problems. It is important to maintain a good balance so he given a diuretic he has had many times before, Frusemide. This only takes 15 minutes or so to work, and I forget this when changing his next nappy.

As his nappies are likely to be wetter than previously, we need to keep an eye on his bum, although it catches up with us in the afternoon. Fred’s bum is looking rather sore and red, and so we give it fresh air treatment and I make a nappy out of the big absorbent sheets that go on the bed. This allows some air at his butt, but it saves the bed and floor from getting wee’d on. It can also be weighed more accurately than a towel.

His general well being has gone from “OK” to poorly and he has not smiled for a few day now. He is relatively alert but clearly feels unwell and looks shattered. It is like he has a really bad cold, plus with other problems too. His mouth and nose is red too, and his stomach has cramps occasionally. He has not had much sleep and so is a bit irritable. He tries to lie on his front and take part, but his head wobbles and then he flakes down on to his side.

He does not like too much handling but will happily cuddle up to mum for a bit, doing his tree frog impressions.

Today is music lesson day and this wakes him up a bit. He is given a maraca, Rachel has the other one and I have a tambo. Julia has her guitar and recorder and we get going. Fred becomes very focussed on the three of us, not smiling, nor crying, but really thinking. It does not take him long to get the maraca shaking enthusiastically in time to the music. He still does not grumble, but becomes unsettled once his session has stopped.

As it is the weekend he is let the tambourine, and the play specialist comes by with a hand held drum set which I collar.

We are told in the afternoon the results of Fred’s stool samples, and this indicates norovirus once again (Norwalk). We are basically barrier nursed here anyway, but it means just being extra scrupulous about hand washing. We do that anyway, but no harm in being cautious. It is likely that Fred may never have got rid of it from his initial infection, and as he low immune, or non-existent, system it simply has popped up again. This might explain the upset stomach and temperature. He is back on some of the old drugs to deal with this.

I speak to my mum and dad and they have received the video I sent them of Fred, filmed since February. I have a dozen more tapes tucked away plus in excess of a thousand Fred photographs. I normally try and catalogue things if I can and I am glad I started when I did.

We redress his NJ which appears to have stayed in place. The fabric plasters we used just slipped off with all the goo coming from his mouth and nose. The stuff we normally use will not work either so I have a think and chat with the nurse. There does not seem to be much that will do the trick, though you have to be careful about irritating the skin underneath, and what will happen when you pull it off. When he was in PICU hooked to the ventilator they entombed his mouth with strong fabric tape which took us an age to get off and left him with a sore rash afterwards.

I root around in his dressing box and decide that the clear large dressings we use to cover his Hickman is paper thin but strong and is good at staying stuck when wet. I cut out the right shape and Rachel carefully peels the smelly old layers of tape away from his face. Once he is bare, we give him a quick wipe down on the chops and it is still gooey. At this stage there is nothing holding the tube in place other than friction from his nose, so he is likely to use this as an opportunity to thrash about. He tries but we contain him and it goes on. I use a bit of fabric at the back just to make sure he cannot pull it away from his face with his hand. Check out the photo today as I think it is successful and better than the previous ones. Hopefully he will have some adverse reaction and break out in hives or something.

Jackie seems to be in charge up here I think, and she pops in to see what Fred is all about. The problems he has are normal and expected and his counts are at their flattest at the moment, so he is at risk of infection which we expect. She reckons by Day Plus 19 he should start to get his counts back, but that depends and is an informed guess.

The weekend is here and so the staff will be less.
Just as I am posting the 'blog, Fred is on his front looking like he has the worlds worst cold, and manages a faint smile for a few seconds, wobbling his head as he does so, looking at Rachel and I and then slumps over again, having a grizzle as he goes.