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.