Frederick James Wills

Born 19 March 2006 Died 2 May 2007


Friday 23 March 2007

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.

Wednesday 14 March 2007

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.

Sunday 4 March 2007

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.