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.