Day 234 (Thu 22 Feb)(Day Plus Nine)Fri, 02/23/2007 - 01:22 — endc011
Fred was not very settled last night and his temperature crept back up again. This normally means that neither of them slept and he tends to mumble and grumble all the night.

Fred’s mucus still continues to impede his breathing and swallowing, so makes him slightly unsettled anyway which all contributes to a bad night in the hospital.

Last night Rachel stayed here and I met with Wayne and Claire, plus the boys, having a bite to eat at a Chinese restaurant which is just down the road from the hospital. It was really good and I went back up the hill replete. On the way back I marvelled at a long crocodile of football fans (hooligans I suspect…) being shepherded along the road in the rain, escorted by 4 police vans crawling alongside them - Bristol were playing Bristol.

It was nice to see Wayne and Claire but a shame Rachel was not able to attend. They did not get to see Fred as unfortunately Fred can only have four named visitors which includes Rachel and I with the other two being one each of his grandparents.

Fred today has been awake most of the time, but trying to sleep. His breathing sounds rattley and his nose is bunged up, so we suction him again. If you leave it too long it tends to get very sticky and difficult to shift, thus causing him even more distress. He is suspicious of four people gathering around him now, especially when the suction is switched on. He also has started on his Nystatin again to keep on top of any fungal infections in the mouth. It tastes nice(cherry flavour) and he gets the drops every six hours or so. However he has not yet developed a taste for the stuff and tries to spit it out, but it is only a small amount and ends up coating the inside of his mouth as planned.

Afterwards he had a quick massage which sent him off to sleep for a bit.

His eye lashes are starting to disappear rapidly now, which changes his appearance. Once missing he tends to look quite poorly and tired though once they start coming back they are replaced quite quickly. This time they had a real flick of a curl at the end but have always been extra long. He is rubbing his eyes a lot at the moment so that makes them fall out, usually into his eyes causing irritation and then more rubbing etc etc.

His haemoglobin levels were low again today and he had a blood transfusion later to perk him up a bit. He had some platelets yesterday as they were getting low too. When you give blood I think a lot of people think it is given in large quantities to people who might have lost a lot a blood in an accident, or have had an operation. Fred has received a large amount of blood products over the last eight months or so, but these have mainly been things like platelets and blood, plus plasma and of course the marrow. Sometimes he will only need a tiny amount of blood but the bags can be quite large, so I think quite a lot of unused blood goes to waste which cannot be helped sometime. Usually after some blood he will become quite pink and perky and probably feels a lot better than he did before the transfusion.

I took a look at Yvette Gates new website, and Fred gets a mention and a feature on his treatment. It is worth having a look to learn a little more and to see the different children cancer can affect, all of them having different stories. I have always had the site in the links section of the ‘blog, but you can have a quick look on www.yvettegate.co.uk and follow on from there.

My trousers fell down today. They have a draw string on them, which became loosened but normally they remain “secure” although today the bow must have slipped, because as I got up to walk over to get my camera they dropped to the floor without warning. No one saw as the door remains closed, but this could have caused an unfortunate incident if out on the ward and makes undergarments a real necessity here.

The scrubs seem to be blue generally, as one person has asked, and staff and we wear the same. It is difficult sometimes to see who is who, other than the ID badges. Rachel was approached this morning by someone asking how to wash hands.

Fred has been playing with his new ankle bells the play therapist gave him. He also has some bells on a stick which my brother gave him for Christmas so we will have to have another toy audit to dig the latter out again. We tried attaching them to his feet to make the noise but he prefers them in his hand to shake violently and aggressively. He looks quite pleased at the din he can make which is nice and he has got rhythm now so the waving action and the bells go well together.

We also replace his NJ tube dressing, which a layer upon layer of tape. He is able to hook his fingers under the tube if we are not careful, and an NJ is more difficult to replace than an NG. He is perfectly still as the layers are peeled away, and another dressing put on. He seems to know what is good for him and what is not.
I will try and post some photographs later if I can.

Day 233 (Wed 21 Feb)(Day Plus Eight)Thu, 02/22/2007 - 02:22 — endc011
Some of the descriptions might sound a bit too detailed and I will avoid going into the real detail unless really necessary, but I need to put it down as a record, and I am sure it is better to read, than to suffer from. One of the good things about the ‘blog is that it allows us to have an accurate record of what has been happening each day. I have found on many many occasions that if I go back and read a particular day of some months ago, there are things I have completely forgotten about, or have been reminded it did not happen last week as I thought, but in September last year! Also it is useful when chatting to the doctors about what has happened in the past and is a useful point of reference for us if we need to check whether something happened, or perhaps did not happen. Funny how time and memory gets jumbled up in Bristol.

Fred’s mucusitus continues to hold on and cause him a great deal of discomfort. Each time he coughs he squeaks afterwards as he is obviously very sore with ulcer-like patches that can appear anywhere from his mouth all the way down to his bum. He is also bringing up blood in his vomit which is normal, but is always a bit of a scare when seeing it. Provided no one really looks alarmed it is likely to be normal.

He has had blood in his sick some months ago, though this was of different appearance - it was dark and like coffee grounds, so therefore was “old” blood, due to some irritation to his stomach. Then he was given an anti-inflammatory type drug that sorted it quite rapidly.

The mucus tends to build up and he ejects it as best he can but it can be quite a volume, so you can understand why he is retching to try and move it. Once out though, he breathes much easier and relaxes, but of course it starts to build up again slowly.

It is difficult to have any idea as to how long it will be before Fred starts to improve. One thing is that his neutrophils need to start coming back up, as at the moment all of his blood count in that respect is as flat as a dab. The neutrophils fight infection and without it the infection just remains. Once the counts increase the mucusitus should clear amazingly quickly. The mucusitus affects fast growing cells such as found in mouth, throat and stomach and is quite vulnerable. The good thing is that the cells will be replaced quickly and the mucusitus should, in theory go as quickly as it came.

Fred has previously had three mainstream blocks of chemotherapy and each have affected him in different ways. The Induction Phase was given to him from Day One and made him severely ill through him developing tumorlysis. This is where the leukaemic cells breakdown too quickly for the body to process, resulting in an overload of toxins, causing him no end of problems in intensive care. His counts fell then and came back quite slowly.

The next one was Phase 1a and this time he recovered quickly and did not need any drugs to kick start the process. After that it was Marma Phase and that time he needed a little bit of GCSF to get him going. Following his relapse in December he had another “unplanned” protocol which was the R3 Relapse one. That was fairly severe and his counts remained really flat for quite a while, needing quite a bit of GCSF to stimulate getting the count up.

Mucusitus is just one small part of the problems and there will be other nasties that are not affected by neutrophils counts which are likely to appear some time.

Last night he was very good and settled which was a surprise. He maintained a temperature of 38.7c and below through the night and was a bit grotty generally. He started to sleep well but lightly and this carried on through the night until the morning. He does have episodes of trying to shift the gunk, and I was worried that he would choke. He did get into a pickle a couple of times and he ended up being suctioned again. Once free, he sounds better and relaxes as best he can.

I managed to get some better kip and hopefully this will be how Fred will be for a while.

He is fairly quiet and looking quite tired himself and he has not really done any waving or rolling about for a bit. I take this as an indication of feeling the pits, so it is to be expected.

However, as soon as he sees mum this morning he does a weak smile and a feeble wave is carried out. This gets him a lot of attention and so he seems a bit better in himself. Later he is on his stomach but still has the appearance of someone who is not well, and is exhausted. It is our wedding anniversary today, and this was a nice present for Rachel – to get a royal wave.

We have not done anything about the anniversary this year as we did not do anything for Christmas, Valentines or today, so no cards to each other or presents. Do not really feel in the mood this year.

Fred gets a visitor too today – one of the nurses from Ward 34 is passing by and comes to see him with another. I was up at the house at the time so sadly missed them. Hopefully Fred entertained them as best he could in the circumstances.

We also get other visitors today – Wayne, Claire, Adam and Tim – regular attendees of the ‘blog. Claire kindly updates the site when I am unable. They are doing a spot of “touring” at the moment and are staying in Bristol.

His improvement overnight may be explained by one of his anti-sickness drugs being stopped. Apparently it causes the digestive system to do various things, and by stopping it, he appeared more settled.

There is also some doubt as to whether the NJ remains where it should as a little bit of strange coloured fluid came back out of the tube today, being alkaline. He is x-rayed and it shows it being in the small intestine but maybe a little bit too low.

We ask whether this repeated exposure to x-ray is doing any harm to his newly acquired marrow although we are told the dose is so small that it would it have any effect. It is just when Fred is x-rayed, we have to wear a lead apron.

In conclusion Fred seems to have had a good day, and has been very settled, sleeping most of it. His temperature was relatively high in the morning but has come down throughout the day on its own. He has not had paracetamol today which is hopefully a good sign the infection is being dealt with. His heart rate is also down to 145bpm this evening, being 160bpm this morning and 180bpm yesterday evening.

Rachel will be here tonight with Fred and I hope she has as peaceful a night as Fred did last night.

I have not been able to do any photographs today as Fred has been asleep mainly and declined publicity.

Day 232 (Tue 20 Feb)(Day Plus Seven)Wed, 02/21/2007 - 02:17 — endc011
When I got in this morning it was clear that Rachel and Fred had not had a good night at all, and neither had really slept. He had been restless all night, and is suffering from the mucusitus, which is beginning to thicken up now.

He also has an infection which will make him feel even worse than before, with his temperature bobbing up and down.

He has not really smiled today or rolled over onto his stomach which is usually a good indicator into his wellbeing. He sounds like he has a very bad cold and is having difficulty in breathing easily. He does not know how to clear his throat effectively and so it tends to stick and dry in his mouth. Sorry for the semi graphic description.

He has only been sick a couple of times and it looks like his NJ tube has found its way to its intended destination, so this helps him. He also seems to be tolerating his 5ml feeds more now so we want his gut to keep processing the milk.

He also needed to have his mouth and throat suctioned today which was not a pleasant experience for any of us. Again for of us were around him to hold him down, and when he coughed it up it was like pulling out rubbery slime from his mouth and is the stretchiest I have ever seen. I now know why he has difficulty in shifting it.

He also has a NPA (naso pharyngeal aspirate) which involves a narrow tube, connected to a suction pump, being slipped up his nostril to the back and moved around so as to get a sample to be able to test. It obviously causes him a great deal of discomfort and as I hold his head really firmly but he nearly deafens me with his shouting. His face ends up an angry purple and he is difficult to hold down once he decides to resist.

Once that is done he is quite clear and settles quickly. He is tired as he did not sleep last night and his general grottiness means he cannot relax.

Luckily the music therapist comes to give him his bi-weekly music lesson which he thoroughly enjoys. Guitar, tambourine and rattles all capture his attention for 30 minutes or so. It is surprising to see the change in his general alertness once he is taking part and must make him feel a bit happier.

After that he has a warm bath and a new set of bedding. He is nice and quiet now, and watches us potter about around him. He soon nods off for a bit, and Rachel heads back to the house for some lunch.

I pop into Ward 34 to collect a booklet and have a chat for 10 minutes or so. It looks full in there and they seem busy today.

One of the staff come up to the screen and wave some envelopes at me, and I pop out to open them. One is expected and the other I am not, and do not recognise the hand writing. It is a lovely letter from one of the ‘blog followers and it probably the first “proper letter” I have had for years. It keeps us informed on a number of things and was really appreciated by us all here. It has a printed (and sterile) kiss for Fred which we pass on to him. We read him the letter and he listens carefully for a bit moving his eye brows up and down occasionally. Thanks Emily.

Fred’s pain relief was reviewed today but he will remain on his normal stuff, although he might need to go up to morphine tomorrow if the mucusitus progresses. His pain at night is really quite something by the look of it, and is like he is having an needle stuck in his stomach or something, as he manages to crash around his cot, grabbing at the sides and arching his bag, whilst doing a high pitched blood curdling scream. It is hard to watch, but you seem to get used to it somehow. The worst bit is when he looks at you in the middle of his chaos and I wonder whether he thinks we are not helping him, and just standing by watching.

Day 231 (Mon 19 Feb)(Day Plus Six)Tue, 02/20/2007 - 00:10 — endc011
Helen D asked whether we have to sleep in our scrub suits and the answer is “yes” although this is not a problem as they are comfortable and light weight. Basically you do not take your own clothes into the room and as I am a bit forgetful, it means I do not have to worry about bringing in clothes for the night, or following day. I have now a system in that I will keep deodorant and a toothbrush here for emergencies and that is it. I will wear the same shirt the following day as it has usually only been worn for an hour or two the previous day, although it ends up creased being stuffed into the plastic bag. It is much easier to walk the 5 minutes up the hill to Sam’s House to have a quick bath and change and then to come down again. Plus I need to wash and gel my hair in peace.

There are not any showering facilities for us here, though if necessary I would sneak to the parent’s showers on Level 6, as I doubt anyone would challenge you or mind even. I think occasionally there is the chance to use the bath here, but that varies as they are reserved for patients and there is a risk of cross infection, so I do not think of using them. I would also be wary of using a communal bath, and there is a real threat that someone might force their way in as you soak. This phobia must go back to my school days when you ran to be the first in the shower after Games, and then disappeared to your next class as quickly as possible. Some used to just wet their hair to look if they had showered, to try and fool the “shower monitors” who prowled the heavy steam. The hapless that dilly-dallied would be seen being dragged naked through the shower by others for entertainment, as others cheered them on. I think it is called bullying now.

A few ‘bloggers will have even experienced the marvelous communal bath(s) at Middlemoor - the police training centre - where years ago I was having a quiet bath behind a flimsy, mouldy and stained shower curtain, safe in the knowledge that I had left those idiots behind many years before, only to have the curtain whipped back and cold water tipped on my head, to a peal of laughter and the sound of running feet - all a great wheeze I’m sure.

Bath times may be different if you are a lone carer here though, and cannot leave the room really. And I am sure no one will force the door.

The lockers we get are very small (one for the two of us) but can just about hold a handbag and wallet, plus a few bits and pieces. They also hold your “iso” shoes when you are out of the ward, so as to keep them clean and not left lying about. They are wrapped in a plastic bag and safely stowed away when not in use.

When we are in scrubs our outside, or “non-iso,” clothes are put in a clear plastic bag, and hung up in the various changing cubicles along with everyone elses. Our outside shoes are stored on a rack adjacent. At first it seems a bit complicated but you get used to it quickly although it is easy not to bother to pop out for a minute as it takes 10 minutes to change out, and 10 to change back in.

When coming in first thing in the morning I will sort out all my belongings on the stainless steel trolley in the changing area and sort out what is to come in with me, and what is to remain in the locker. Stuff I do not want is put away and the remainder is wiped thoroughly with the Azo-wipes to disinfect my ‘phone, keys, watch etc. before taking them in with me. All these bits are then generally stored in a plastic bag hung on a hook in our room (see photo titled “Gidgets”), so as not to clutter the flat surfaces in here.

The cleaner will come in during the day and extensively clean the room, usually taking 25 minutes or so. If you spread out, you end up tidying them away again for the cleaner so it is easier to try and keep on top of it. The bed needs to be raised each time they do the floor, but we keep it lowered most of the day, using as a settee. There should be restraining straps on the bed to keep the bedding in place once it is in the vertical position, though ours is missing. This results in the bedding slipping off and ending up in a heap behind the bed, which has to be fished out and re-made.

We do not have access to cooking facilities here either, so have to rely on the staff cooking for us. That is fine most of the time, as they have Hotel Services staff on until early evening to do this for us. So far someone has come in to us in the afternoon to ask what food we have here, for them to heat up that evening. We can only have pre-cooked ready meals stored and cooked here and these are kept in the ward kitchen and I have wondered whether they would get the hang of my noodles here. For some reason, I was not asked last evening, so had to wait until 2100h to ask for something to eat as the kitchen staff had gone home by then. The nurses are busy at that time of the evening, setting up meds and stuff for the night so it is difficult to catch them as they fly by. Hopefully the parent’s kitchen will re-open again soon, as it is a pain for both staff and parents. It was closed due to some nasty infections at Christmas which were floating about, but some of the staff are wondering why it is still closed after all this time.

Fred still has a repeat of grumbly belly, and this seems worse at night. At times it is clear it is sharp stabbing pains and he thrashes around a bit, trying to find some relief. It is a mixture of stomach pains and mucus too, coming back up his throat making him want to be sick. When he is, it is just bile and stuff, but it all adds up to a thoroughly miserable night for him. Some of the stuff is quite thick and difficult to shift as he not yet really mastered the art of phlegm-shifting, so it adds to his distress.

He also gets a small temperature spike this morning, hitting 38.1c so is given some paracetamol and a bit later some antibiotics to try and knock it out before any infection takes hold. This drops quite quickly but they will check him regularly. I hope he does not get an infection as he will be a bit more vulnerable in here, and will have many other things to concentrate on getting rid of.

They are to tinker with his feed as well today, as his potassium levels have increased overnight. I do not know the implications of this, but remember in the early days here, his levels went up and down when he was in ICU. The first time we ever heard about his potassium levels being too high was at about 2200h on the 8 July 2006, the day he was admitted here from Torbay Hospital. We did not know the significance then as to what was happening and just thought it was not important, so I just get a bit twitchy hearing it creep up again. Apparently his feeds are high in potassium too, so they can re-balance then as well if necessary. I later hear that the levels have returned back to within a normal range later in the day.

Rachel and take it in turns to pop back to the house to have something to eat, and during this time Fred is quite well settled. I receive some post sent up by my mum and dad.

The rest of the day sees Fred feeling generally poorly with a temperature burbling away in the background. Some of the time he is happy but he tends to sleep a bit more often now, and awaken with a bit of a cry. This is all to be expected and I think the beginning of the various problems that will normally blight a person who have had a bone marrow transplant. He does manage the occasional smile, although his trademark wave is on hold at the moment.

He gets extra antibiotics and anti-sickness, plus some pain relief so help him as he is likely to be reaching a point where they are needed more.

Day 230 (Sun 18 Feb)(Day Plus Five)Mon, 02/19/2007 - 01:44 — endc011
Rachel and Fred’s night was not too bad, though hardly any sleep was had by either. Fred remained unsettled but it was not a repeat of previous nights by the sound of it.

When I get in he is having a cuddle with mum and is looking out of the glazed screen on to the ward. As I come out of the changing room he spies me and waves cheerily as usual with a fat grin. His arm movement is getting more refined now, and he appears to be pleased to see me.

He seems to be his normal self, although Rachel reports a small distinct “bruise” on his right foot, which is about two millimetres in diameter. It was not there yesterday and is like a blood blister rather than vague blue/grey bruise so we show this to the doctors. They will keep an eye on it. He has a proper bruise on his head where he cracked it against the metal bars of the cot, hence the plastic bumpers he has now.

As with any of these strange manifestations on him I take a photograph of the mark so that we can compare whether it is getting any bigger or changing in some way. When he started to get a sore bum again on W34 I took some photographs for this reason, as prior to this the doctors and us would spend an age looking at his backside with a torch, crowded around the foot of his bed, debating whether it looked worse or not. However, I have steered away from getting the images developed at Boots, as my explanation to them they were taken for “medical reasons” may fall on deaf ears.

It may well be that the NJ tube has now sprung into the intended location (jejunum) as it is coming back as alkaline, and not acidic. He is also due a test next week where they will slip a probe down his nose or throat toward or past the oesophagus to check whether there is any acid at that point. There should not be, but if there is it suggests reflux may be making him sick regularly.

I have had a number of requests for some photographs of the hospital and our accommodation, plus various other things (in addition to Fred) so as to give an idea of where we are and what it is like, hence the recent photographs of the ward and other areas. I have to do it covertly sometimes as they will think this place has finally got to me if I am caught photographing a shoe rack. I would like to have a few staff photographs but they may not feel comfortable with it, especially when I tell them it would go on the internet. We are getting to know this lot more now and will raise it I think.

Yesterday I went out and bought a duvet and cover for under £11.00 from Wilkinson’s, with the intention of using them in here. I will have to unwrap them in the changing area before bringing them through, as well as change the duvet cover every two or three days, as I cannot continue with the current stuff. We are given very thin knitted blankets and sheets that do not stay under the mattress, so you are constantly making the bed during the night, especially of you are getting in and out like we are. At least a duvet only takes a second to make.

It was good to read some more comments today, plus a new name - Charlotte – so a “hello from me” and “a hello from him.” It certainly helps reading the various comments whilst stuck in here, and you do end up logging on every now and then through the day to see if there are any new ones. Having a new name appear is great and is like getting an unexpected personal letter in the post so makes you wonder how many people read the ‘blog. I can see how many pages have been viewed on the Statistics page, which are not the same as “hits” as you have with websites. I looked earlier today and we have had 57,303 page views over 230 days which averages at 249 per day. I guess there must be a few people who do not leave comments for one reason or another but I am also curious to know how people come across the site without specifically searching for it. A lot of ‘blogs can be found on Google blogsearch, though you have to be fairly specific to get interesting results. A few new names appearing would boost the flagging spirits of the Wills family.

We have dial-up connection at the moment which is brilliant given the circumstances. I saw some contractors feeding purple cables up through the suspended ceiling the other day and did not think anything more of it. I later learnt that wireless broadband is coming (hopefully for us as well) as that will be fantastic, although Level 6 (Oncology Day Beds) below has almost got it. This laptop makes the hours here pass by really quickly and also gives you something to do in the early hours when Fred is “active.” You get some weird looks at 0300h in the morning as they can see a dimly lit face hunched over the laptop through the glass screen, all bleary eyed - anxiously awaiting a comment to come up on the ‘blog….

During the day he is still quite settled, though he gets Buscopan to alleviate his stomach pains, and this seems to work quickly. He uses the opportunity to sleep when he can too which is a break for him as well as us.

His eye brows and lashes are returning rapidly although they should fall out again soon, as the recent chemotherapy takes effect. Even his bonce is beginning to get a suede-like down on it. His last lot of hair had an auburn colour to it though this time it seems a lot darker, and the time before it was a mousey brown. It can come back any colour though and it could end up curly. I am also told that following a BMT he could have the same hair characteristics as the donor. I will have to find out more as to how a transplant can affect you in these ways as it is an interesting topic. The change of blood group fascinated me no end, as it did a few others who read the ‘blog.

As Fred is a baby still, being bald as a coot does not make him look unusual. Lots of the children here do not have any hair because of their treatment and so we do not notice it all now. In fact you so many different sorts of patients in the children’s hospital that you do not bother to take a second look anymore. Before I am sure we would have been gawping but it is what you get used to. Also, after a period of time you appreciate that there is always someone else worse off than you, although I pity the person who is that “someone” at the bottom of the heap.

I unwrapped the duvet and cover in the end, installing it on the bed, discarding the old blankets. It is warmer and more comfortable than before, though I am not sure whether I will get the benefit of it tonight. Brightens the room up a bit.

Fred is due to have a platelet transfusion sometime in the early evening today, as he has been sick a few times and is showing a little fresh blood. This is to be expected and as his platelet count is low, he should be transfused. Hopefully that will patch up any sore spots in his throat or stomach.

Other than his grumpiness due to painful stomach he seems chirpy most of the time. Whilst uploading some photographs he cranes his neck to see what I am doing as my head is blocking his view. A minute or two later he is slumped fast asleep.

Day 229 (Sat 17 Feb)(Day Plus Four)Sun, 02/18/2007 - 00:57 — endc011
We have been here nearly 7 ½ months now, and this life seems normal to me now. It is only at night when it is quiet that you can lie and think about what has happened during the day, and then look around the darkened hospital room and wonder why you have not gone mad along time ago. The institutional furniture and fittings and together with the lack of personal objects all contribute to the peculiar atmosphere, coupled with the constant rumble of the air handling above the bed plus the irregular ticking and bleeping of the pumps in the room.

It still amazes me how we switched from world to another without any effort although it was entirely against our will. Of course there was not any other option and there is little mileage in feeling hard done by anymore, although when contemplating the last several months, I feel cheated out of all the normal “newborn” stuff we expected to experience.

It can become very difficult at times when you are facing an open-ended duration here.

When we were told he had a serious illness, all of our mundane plans were cancelled with Dr Sainsbury’s words. The annual barbecue in a few weeks time, the holiday, the idea of spontaneously going camping as the summer had arrived all never materialised. Nor did our visits to the various local agricultural shows with Fred, or the baby massage/swimming classes which were planned. We never got to go the Woodcarving Fair at Roadford or the British Cheese Festival in Cheltenham. Some of these events are starting to come around for a second time now although we did manage to get to the Wood Festival at Westonbirt Arboretum a few months ago, whilst Fred remained on Ward 34, though we came back early as we were worried about him.

All of his developmental milestones so far have been witnessed here, which is not a normal environment by any means. He started on solids but this has been interrupted again by the chemotherapy affecting his taste and he is not keen on it at the moment. One of the difficult things is that Fred has not really played with, or met even, anyone his of own age, and his only real contact with others is solely adults. He has not been able to mingle with the other children here because of the risk of infection. As he has spent a lot of time in bed, his neck and back muscles are not as strong as they should be by now and he has difficulty sitting up unaided. This can be rectified quite easily and he will catch up, but it is a shame he is not doing these things when he should.

He must think he is the only tiny person in the world, and that is why he is stuck in hospital.

His NG/NJ tube problems persist, causing him an intermittent wave of discomfort and sickness. Again he can have anti-sickness drugs but it is difficult to know whether they work or not as sometimes sheer tiredness takes over and blocks out the pain I think. I am not sure what the answer is, and it is a bit of trial and error. I am not keen he has too many x-rays, as he has only just got his new marrow although I am sure it is all within safe limits.

The BMT Ward is different to Ward 34 in many respects, due to a number of reasons. They are more geared up for making you hot drinks and cooking your food on this ward, although at the moment the parents area is out of bounds because of infection, so they probably do not have much choice in that respect. Also here you are encouraged to press the nurse call system more than you do on Ward 34. I do not think we ever used the call system down on 34, but here we press it constantly. At first you feel a bit of a pest but get used to it. Obviously if there was a problem you can summons them immediately.

Last night he was unsettled from 2300h until about 0500h and so neither of us got any sleep really. He is still having stomach pains and bringing up bile and mucus. Once he gets rid of that he settles for a bit and is back to normal. The frequency of his gripes are increasing now and it looks like mucusitus is setting in as expected.

In the morning he is still not happy most of the time, and the doctors take a look at him on their ward round. They confirm early mucusitus so that will continue to be a problem for him until his neutrophils start to increase again. It is not known how long that will be, though we will ask for the results of the bloods each day if possible.

He is tired but curious still and loves a cuddle with his mum, and he reminds me of a tree frog with his arms and legs wrapped around her. From this point he can have a good nose about from a high vantage point.

His grumpiness comes and goes with whatever drugs they give him and sometimes he is back to normal for a bit. However most of today he is normal Fred, waving at visitors who wave back.
I may have put a few extra photographs on if I had time....

Day 228 (Fri 16 Feb)(Day Plus Three)Sat, 02/17/2007 - 01:13 — endc011
Just after I posted last evenings ‘blog the nurse came in with a couple of trays, some syringes and a tube. The NJ tube is about to be inserted, though it will require four us this time. It all looks like the same equipment as normal but the procedure to get the end of the tube down into the jejunum is a bit more tricky.

Fred is laid prone and the distance from the mouth to the ear measured, then a measurement from the ear to the bottom of the stomach is taken. Added to that is 10cms and I assume this is roughly where the tube is to end up. The tip of the tube is gelled and it is slipped into his left nostril and worked down in to the stomach. Fred expresses great discomfort at this point and there is a little bleeding from the trauma of it being tunnelled down the back of the nose.

Once down, his stomach has air pumped in via a syringe (10ml per kilo of body weight) to distend it slightly and make it a bit easier for the end of the tube to go through the opening into the small intestine. The old NG remains, and is tested to check that it is still in the stomach, and that the stuff coming back should indicate on the test strips as acidic.

The last 10cms of the tube is then worked around the stomach in a twisting motion, hopefully catching on the opening and popping down into the small intestine. This is not pleasant for Fred at all, and he is struggling like mad, hence the four of us around him. Once located, blue dye is pushed down the line. In theory, when the NG tube is used to check the stomach content, there should not be any dye because it is in another “separate” part of the digestive system. What actually comes back is a faint blue result, confusing the issue. Another x-ray is now required which eventually showed the tube coiled in the stomach, and just the tip poking down out of the stomach. Not ideal but almost there. Another x-ray will be required to see if it has sprung into position.

When I get in this morning Fred is looking remarkably well and has a healthy glow about him. He has had some blood last evening and so hopefully feels a bit rejuvenated. He has had quite a good night but Rachel looks tired. He was x-rayed last night at 2200h waking the both of them up and making Fred quite grumpy afterwards.

He is quite active again and looks alert and still is waving his hand madly at anyone that waves at him. He finds it a real hoot and does not stop. He gets quite a few cuddles today and enjoys all of this fuss.

The tube needs to be relocated so this is done but causes him no end of distress. There are problems and so eventually both the tubes are pulled out, leaving him tubeless. A tube is re-inserted a bit later though I am out at the time.

Fred of course is feeling a bit short changed by all this attack on his body and is a bit defensive for the rest of the afternoon. Cuddles and a story make him happier and then he does settle.

It is my turn tonight to be here and I hope that Fred will be OK. Rachel has headed back to the house for a peaceful night I hope.
In summary Fred seems to be feeling OK, and his sickness is much reduced but with the new tube it may return. He is still feeling well enough to keep rolling on to his stomach and to try and move about grabbing at things out of his reach. Today we were blessed with a lot of smiles and waves. With the large window here, those passing by can start a wave, and he will now reply with a vigorous wave in return. This can go on for several minutes with some passers by.
I understand that a few of the Ward 34 Gang have been following the 'blog so "Hello" to those on two floors below. We occasionally bump into people whilst moving around the hospital. Hope all is well down there and, (to anyone) - please feel free to leave a message or comment. It really is the highlight of our day now, being in here, to receive something.
Day time television is really beginning to get to us now. Even the adverts are something we look forward to. At the moment my favourites are the washing powder ad. with Richard Fairbrass and "Right Said Fred" playing, as well as the Geordie woman happily arranging a PictureLoan for £25,000 which I think works out 75% interest.
I also intend to try and put some photographs up on the site each day, so have a look in the Media section.

Day 227 (Thu 15 Feb)(Day Plus Two)Fri, 02/16/2007 - 00:30 — endc011
Whilst doing the ‘blog Iast evening I was looking out of the large glass screen (see photograph “Mission Control”) and watched a new parent, I assume, being shown around like we were the other week. He was being shown the various cubicles available, which is good as it gives you some input if there is a choice available. When we were show around you get that feeling of being out of familiar territory and everything is new again.

Fred continues to shift between being sicky to bouncing and laughing. Most of the time he appears to be well, and in the last day or two he seems to have become more settled than the last two weeks. I cannot see a pattern to the sickness as it sometimes takes a while to establish, and Fred may sleep for an hour or two. Accidentally wake him, and he may be sick - there is not much in his stomach usually, but it disturbing for him as well as us.

Yesterday I still think the tube is not in the right place and I mention it a few times to various staff. One of the doctors decides to get Fred x-rayed again to have a long chest section done. Thankfully as were are in isolation the mobile unit arrives at around 2100h. This is the one that looks like a photocopier with an angle poise lamp on it – one of the units is decorated to look like a giraffe. Fred is positioned on the plate but screams and squirms as best he can. The machine buzzes for a second and the machine is trundled back off the ward.

The images are processed immediately and should appear on the network within five minutes. I wait for the doctor to have a chance to take a look and decide if there is a problem. Later, I am told that the NG tube looks too low, and that it is right by the pylorus, a valve going into the small intestine that is possible causing irritation. We pull it back an inch or so, much to Fred’s anger. Today we discuss further his continuing sickness with the doctors There are a variety of things we can try, and some of it is trial and error.

Small children like Fred are not well designed to lie down all day and receive feeds, and so there is always a chance liquids will make their way back up as vomit. We steeply incline the bed, and prop him with towels. There is also talk of him having his NG tube removed and replaced with an NJ tube. This goes beyond the stomach into a part of the small intestine, the jejunum. It should mean that feed and meds can be fed into there, and it should not come back up to be vomited. However, it is not as straightforward to locate, and involves a bit of jiggling about and possible another x-ray to ensure its location.

In order to address being awoken regularly by Fred during the night, I have decided that whilst Fred is feeling grotty there is not any advantage in planning to get a good night’s sleep here. Therefore it is easier to accept you will not get any, and deal with Fred as and when he needs attention. This way you do not get in flap that you are not getting sleep and in any case at some point Fred falls asleep for a bit, as do I. Normally you can catch up on the sleep in the morning from around 0600h to 0900h or so. As Rachel and I tend to try and alternate staying at the hospital a good nights sleep is not that far away. Rachel sometimes is happy to stay for two nights which tends to be the most tiring, depending on what occurs during the night.

Fred continues to be given anti-sickness drugs and I think they work as he tends to fall asleep for a few hours when he is given them. However, he will still wake and yuck up just when you feel it was safe.

Unfortunately there is a list as long as your arm as to what could happen to Fred whilst he is at this vulnerable stage. We are aware that the smallest straightforward infection in here can become very complicated indeed and so hygiene can become an obsession for some.

In addition to the varying problems with rejection of the marrow and host, he may also encounter mucusitus (he has suffered this fairly mildly before and involves ulceration to the mouth, throat, stomach and beyond….), problems through fungal, bacterial and viral infection, pneumonia, liver damage, rashes, fevers, nausea, diarrhoea and respiratory problems. I am sure there are more to appear but that is enough for the moment. My notes from our meeting in November with Michelle suggest that Fred should start to go downhill from Day Plus Three onwards, which happens to be tomorrow. His skin colour looks much healthier in the last day or two for some reason and he has a slight “tanned” look about him. We raise this but are told not to worry as it is normal. Strangely, he is due his first blood transfusion for a bit today so he must be low on Hb.

When Fred is not feeling poorly he is actually quite jolly and very inquisitive. He is still rolling and trying to see what is going on out of his view. He had another massage too today, which relaxed him and this was followed by a nice warm bath. He has not been enjoying his baths of late, but today was quite relaxed and reclined in amongst the suds. His bonce gets washed and again no tears. Back on the bed he is rubbed dry in towels, and then spends the afternoon resting, watching television and playing with his wooden rattle and other noisy things.

As I typing the last of this post, the nurse comes in to suggest now is the time to try and insert the NJ tube. It can take a little while and is likely to be unpleasant for our little man….

Day 226 (Wed 14 Feb)(Day Plus One)Thu, 02/15/2007 - 01:56 — endc011
Yesterday the infusion lasted three hours, with the volume being 81mls over three hours. They tend to happen late afternoon because I the marrow is harvested in the morning, it is processed and is couriered to its destination. If the marrow is frozen it needs to be defrosted and brought to the correct temperature. I gather that in the early afternoon the doctors decide exactly what volume is given, hence the timing.

He was given drugs immediately before the transplant to counter any anticipated reaction, though problems can come in various forms so it does not always work.

Blood pressure can rise during this time so it is checked every 15 minutes, and Fred’s does go up a little, but returns to normal quickly. His temperature remained constant as did his oxygen saturation at 100%.

Once the transplant is complete it is all packed away and his obs. go back to the normal every couple of hours from 2200h onwards. There is still a big chance that he will get problems with the transplant, but I gather that may start to happen during the next few days. Bone marrow creates blood, protection against infection and clots the blood when needed so to tinker with something so fundamental can have serious implications, especially as Fred is so small.

The marrow enters the blood via his Hickman line and circulates, eventually ending up in the cavities where the old marrow once was. Most of the big bones house the marrow. The recent chemotherapy drugs were very high strength to kill off his marrow, which is why he is at great risk of complications now and is making him feel awful. The space within the bone probably still has a cell structure in there of sorts, but I think ideally it should be inert. The incoming marrow finds it way there, and sticks to the inside of the bone. Healthy marrow is a spongy substance.

Hopefully, it will end up where it should and engraft itself there. After some days it should start populating the cells and in theory will start manufacturing healthy marrow. Fred’s blood group in O Positive and the donors is O Negative, so as I mentioned in an earlier posting, he will change blood groups. At one point he will actually have two blood groups and I see on Day Plus 28 there is a “Chimerism test.” Chimera refers to the changing from one to another and this will be a good indication that things are going well if the donors marrow is starting to manufacture blood.

There is always a chance of problems such as rejection which is one of our biggest worries. Fred is known as the “host” and the donor’s marrow is known as the “graft.” There is a problem known as Graft versus Host Disease (GvHD) where the donor’s marrow attacks Fred, seeing him as a foreign object, which is a bit ironic in the situation. Fred could also reject the graft of course. We will have to wait to see what happens in this respect.

There is however, a form of controlled rejection which does happen and is preferred in some ways. This is Graft versus Leukaemia, and the healthy incoming marrow produces things to go and find the last remaining leukaemic cells and destroy them in a mopping up exercise. It does not always happen and does not necessarily mean there is a problem if it does not occur.

There are a number of other problems which are inevitable over the next few weeks, and I will explain these as we go along. They were one of the topics discussed with Michelle prior to signing the consent forms, and made us realise that we still had a long, long way to go. Incidentally, she is on leave at the moment as enquired as to Fred’s progress from America.

Having seen some of the clinical photographs on the ward posters of the varying degrees of GvHD, it does not look pleasant at all.

I assume that if all goes well he will not need anymore chemotherapy. I hope that is the case, as it does make him quite poorly. I had a look at what chemotherapy he has had since he came in, and they are, in order: Steroids (initial treatment), Vincristine, Daunorubicin, Cytarabine, Asparaginase, Methotrexate, Idarubicin, Mercaptopurine, Cyclophosphamide, Fludarabin, Etoposide, Campath, Bulsulfan and Melphalan over the seven months. In addition to this he must have had hundreds of different other medicines to deal with his problems, from paracetamol to anti-seizure drugs to a paralysing drug in intensive care.

He seems to be fine at times, with him rolling about as normal. When he is sick it tends to come in short waves, and once gone he seems fine again.

Rachel gives his cot the daily scrub and clean, with a change of bedding. It is quite tricky as there are lots of bits and nooks and crannies on the bed, which makes it difficult to clean.

We had a ‘phone call from Kate - sister of Ward 34 - about some of the cheques that were sent to the ward following fund raising. They should receive about £2300.00 I think, though I do not have the final figures with me. All my scraps of paper and diary are now locked away back at the house. There is some equipment she needs that is not provided by the NHS so that was a good way for us, and you, to say “thank you” so far for the care Fred (as well as us) have received so far.

I learn that my colleagues in Building Control are having a fund raising football match at Torbay Leisure Centre on the 6 March 2007, between 1800h and 1900h. The Leisure Centre has waived the booking fee which was good with funds going to CLIC. They are playing Torbay Care Trust and I am not sure if I will be able to make it to spectate, but will try.

The play therapist comes in again this time armed with a baby gym. It is new an unopened and was donated to the Hospital Christmas Present Appeal run by the local newspaper. Fred is unsure of it at first, but then warms to the idea and bashes it madly with his newly acquired waving action. This causes him great excitement for a while before he falls asleep for an hour or two.

He slept quite well last night, and as I am here tonight I hope he will do same. Rachel has headed off to do some shopping up at Somerfields, looking for the bargains and then on to catch up with the washing.
I put a few photographs of Fred on yesterday, plus I shall try and post a few more this evening if the lad lets me.

Day 225 (Tue 13 Feb)(Day Zero)Wed, 02/14/2007 - 01:46 — endc011
DAY ZERO

We have arrived at the big day now, and to me it feels like any other day here really. We have not really been told what will happen as it depends on the volume and various properties of the stuff. They deal with it and decide over how long it will be given to Fred.

I stayed at the house last night, and this morning I rose a bit earlier. I had my Dettol bath although my mobile phone took in some water when it slipped into the bath. I left it drying out and so I had to resort to using one of my few “reserve” ‘phones.

I get to the hospital to find him fast asleep. He quickly awoke though, but was promptly sick. He vomits regularly and this must tire him out no end, as he is retching in long blocks. Not a great deal comes out though, but the effort is draining for his little frame. His nurse today gives him a series of anti-sickness drugs to help keep him happy.

Fred’s general happiness and wellbeing is starting to slip now as the chemotherapy starts to work its way through his little body. He is starting to be sick more often and this upsets him a lot, keeping him awake. During the night he is regularly sick, so in the end Rachel did not get any sleep at all. He is not as playful as he was a few days ago, but is still smiling on demand when he feels able. He has a habit of waving madly at the moment, and almost does this when each new person comes into se him.

I start to read the comments on the ‘blog and show them to Rachel. Fred looks on over my shoulder too, trying to see what we are looking at. It is great to see those words of encouragement from everyone, and even the shortest of messages means a lot to us in Cubicle 10 BMT. It is nice to know that others are worrying and praying too and it all helps. Ironically Fred is the only who is not understanding all of these kind words, yet he is on centre stage.

Later in the morning I hear the banging of drums. The music therapist is doing her rounds and is due to visit Fred today. She comes in later and we all sit around Fred whilst she plays her guitar and tambourine. Fred concentrates a lot more this time, neither smiling nor crying.

I also get a visit from the play therapist on this level, who has brought in a couple of toys for Fred, wrapped in the obligatory polythene bags. We have a chat about keeping him amused whilst he is here, and once he is sorted we will try some new things with him.

There are so many rules on this ward about cleanliness that you become paranoid as to whether you are doing it right. Some people also have different advice on what to do, and you are not issued with a booklet either. It is mainly by word of mouth and each person seems to have a different view on certain things.

Fred’s bedding is changed every day and the bed washed down thoroughly too. We will be shown how to do today as well. Our fold down bed has the bedding changed every two or three days. The bedding is sealed in polythene and is opened out by the store, with the plastic binned there.

At least Fred’s grubby nappies are stowed away in the double sided cupboard, where the nurses empty it from the corridor side. I was thinking of climbing into the cupboard just before they come to open the door, only for them to find my head and shoulders in there. They might find it amusing I thought.

Fred manages to catch up on some sleep, and Rachel goes back to the house with some clothes to be washed. She changed out of her scrub suit this morning but forgot the bag of washing which was in the “dirty” cupboard. She tried to rang me on the ‘phone in the room, but I was having a chat with one of the doctors about the possible initial problems with a reaction to the transplant at the time, so each time it rang I picked the ‘phone up and put it down again. Typical local government tactic…. I eventually spoke with her and met Rachel in the changing area with the bag. Hopefully she will have a kip at the house whilst it is washing and drying.

She comes back after cleaning the room and doing the laundry. Fred had a two hour sleep in the afternoon and this did him a world of good.

Late afternoon see the doctors and staff come in. The transplant is about to start and the bag of marrow arrives. It is in a paperback sized bag and contains a very bright red liquid. This marrow has a high level of red blood cells in, hence the colour. It can vary from a milky pink to a bright red.

At 1710h precisely the bag is connected to Fred and the transplant commences. It will take three hours and there is some in reserve, frozen.

He is monitored every 15 minutes and this includes his temperature, blood pressure and oxygen saturation. The first 15 minutes will give some indication as to whether he will react to the blood product. Thankfully this does not occur but we are a long, long way to go yet. I think really it has not yet started.

Fred seems very happy with himself given what is happening. As I said in the opening paragraph it is a bit of an anticlimax. However, we realise this is Fred’s only hope to be cured of cancer, so it makes it all the scarier, as if it does not work… well.

I will stay for a while and Rachel will stay overnight again. I doubt if I will sleep through worry, and Rachel will not sleep because of same, Fred yucking up and the constant visiting by staff whilst it goes on.

I will be able to let you know tomorrow what happens.