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.

Day 224 (Mon 12 Feb)(Day Minus One)Tue, 02/13/2007 - 01:41 — endc011
DAY MINUS ONE

Fred was settled by early evening and seemed happy in his new room. He can watch the world go by from his bed, and this keeps him watching the window for a few hours.

Once he nods off I have to keep waking him, as we have to change his nappy every two hours or so during the night, for his urine to be checked for traces of blood. Obviously this tends to disturb him and so will all the jiggling around he does tend to be sick a little more. This, combined with the various drugs he is having makes him a bit sickly all through the night.

I am up constantly with him, and then drop off quickly. As soon as I hear a bit of a retch or splutter, I awake and usually manage to catch the stuff before it goes all over his clothes. There is not a lot of the stuff, but it means that all the bedding sometimes needs to be changed, plus his clothing. A few times during the night with all the other disturbances mean little kip.

Also, added to this the nurses tend to come in regularly in the dark and move about so you tend to be half awake in any case.

He gets these stomach cramps again during the night and I wonder whether the NG tube is too low again. He is on a pump feed of milk at the moment for 16 hours, receiving 10ml over each hour. This is just to keep his stomach processing food, but each time he is sick, only bile comes out and not milk. I mention it to the staff, and leave it as I do not know the workings of the stomach.

The bed is the same as before, a fold down one. It did not have any bedding at first but it eventually arrived before I wanted to sleep. No duvets here sadly, or if you do they need to be washed so often it is too much hassle. The room has better lighting control so I keep the background light on for the staff and pull the curtain around the bed. I am still a few feet away from Fred, ‘though if I have to get to him in a hurry I am a bit like Eric Morecombe trying to fight my way through the curtain.

In order to keep bugs out, the room has a positive air pressure, in that we have a constantly blowing duct above us that fills the room with cleaned air. There are balanced vents above the doors into the corridor that allow the air from the room to go into the corridor. In theory any nasty smells we have in here as well will leave the room and blight the staff out in the corridor. The down side of this constantly moving air is the temperature, and the noise from the fans.

He is still getting his TPN (in addition to milk) over 18 hours, so nutritionally he should be fine. His Weight was the same as yesterday too in the morning.

By mid-morning he is quite happy, but I can detect a little change in him which is very subtle. He is still happy and smiley, but yesterday he was rolling and clawing at things in a playful way, though today he more subdued. At times he looks quite thoughtful and sad, and tends to stare at things a bit longer than he usually does.

He gets his chemotherapy at 1400h today - Melphalan - which will run for 30 minutes and is likely to make him feel sick. He is getting a number of prophylaxis for a range of things, including anti-sickness. We are also to get some mouth care equipment as ulcers are likely to start appearing soon and he will become susceptible to infections in the mouth. Poor little Fred, yet he is still behind me chuckling away quite oblivious thankfully. As he was having his chemotherapy hooked up, he burst into life with slam dunking legs and big grins at the staff.

I can see a number of the other rooms from here, each with families and staff in. It is difficult to tell the difference between staff and visitors here as we all wear the blue scrub suits. We are all in our own little worlds here, and I do not really know who is who here at the moment. There is at least one name I recognise who was in the newspapers recently looking for a donor. They have had their transplant but have experienced a few complications I think.

Tomorrow is Day Zero, and will be an important one for everybody. We are told the marrow will be infused either late afternoon or early evening depending on where it has come from. We do not know the identity of the donor, other than it is a UK male. He may have given it on the day, or it may have been taken and then frozen for Fred’s use. His transplant was cancelled on two occasions so this may well have happened so as not to inconvenience the donor.

I understand that the donor is checked over medically and is given a date to go and have the procedure done. They will get a drug which stimulates the various things that the hospital wants from the donor’s blood a few days beforehand. Depending on where they are and what register thy came from, they either go to a regional hospital or a private one.

There are two types of having the marrow taken. One is the older way, is to be admitted to the hospital and have a general anaesthetic. The big bones of the hips are entered and a bit of marrow sucked out. It depends on the size of the recipient as to how much is taken. I think you are hospital for a few days afterwards and can feel a bit flu-like.

The other way is to have the blood taken peripherally and you still have a course of medicine to stimulate various cells. You have a tube into the left arm and this passes to a filter, and then a tube comes out of the filter back into the right arm. As the blood passes through the filter they extract the stem cells they require and the blood returns to the donor. From what I have heard, this is the preferred in most cases and by most donors as they are out of circulation for a much shorter period of time, and you do not lose much blood.
We must not forget that the donor too will have been nervous (or terrified even), and may have joined the register many years ago wondering if they ever would be called. Well now they have, and hopefully nothing will happen to jeopardise the event from happening. I do not know anything about them, or their circumstances, but they have been cancelled on a couple of occasions in the past before, because of Fred’s health, and we did worry whether they may cancel for some reason if repeatedly messed about.

Helen D asked about Total Body Irradiation (TBI) the other day and whether Fred would be having some of that. It is something that was discussed with us briefly in the early days but we were told that he would not be having it because he was too young. I think I read somewhere that it is not a good idea at all until at least one year old, as the body is still forming in some ways and the radiation is too risky in some cases. I do not know if I am correct but it sounds right.

Rachel came down this morning with his boil-washed clothes and toys for him. After the hot wash, the clothes are put in the tumble drier. Once the drying is complete the items are transferred into a plastic bag immediately, and sealed to keep out infection. Rachel was given a JML bag sealer some months ago as a present, and has proved useful in the kitchen for heat-sealing freezer and sandwich bags. It has now come to the fore, in that it can quickly seal the sterile bags for Fred, prior to them being brought into the iso. ward. A marvelous thing to have.

The rest of the day is with Fred who seems quite upbeat. We change his NG dressing and his Hickman dressing, so he looks quite tidy now.

I take some photographs of Fred in the room and have added a couple today to the Media file. I need another USB lead so I can connect the camera to the laptop to upload some further pictures.


Day 223 (Sun 11 Feb) (Day Minus Two)Mon, 02/12/2007 - 04:24 — endc011
DAY MINUS TWO

He has been exceptionally active today and is particularly vocal. He continues to make an irritating rasping sound, like he is clearing his throat. However, he is rewarding us with lots and lots of smiles today. He was watching Rachel use the laptop by peering down at her from his cot.

We get a briefing about the isolation ward from Jane who is one of the nurses here. She runs through a checklist which most of we are familiar with, but there are few new bits for us.

We get our tour of the unit once more and are shown the cubicles that are available. As Fred is little they would like to have him near the nurses station, which we are used to anyway. There are two, one with an en-suite shower. Strangely not all rooms have showers and as Fred would not use a shower, it is doubtful we would get one. In the end we opt for Cubicle 10, right opposite the desk and by the entrance from the changing room/corridor.

It has a view of the central courtyard, and we can see the windows of the sleeping quarters we stayed in on the 8 and 9 July 2006 when he was first admitted. Also visible is the door to the parent’s kitchen which we used when on Ward 34 from July to February 2007.

The atmosphere is much cooler in the room as it has a form of air conditioning to keep the bugs out and there seems more space. Like the room we have now, there is internet access, although this is only dial-up, it is better than nothing. At least we can keep in touch with the outside world a bit more now.

Fred’s weight bobs up and down a bit today when he is 9.06kg in the morning and is 8.96kg in the afternoon. He remains on TPN and had a bit of yoghurt today. Chemotherapy can affect the taste buds at some stages, and this might explain his displeasure at the taste.

He has his second lot of Cyclophosphamide and Mesna and there is not a repeat of the troubles he had yesterday. He has some painkiller before hand though.

We take a wander up to the shops by the Triangle and walk back past the University buildings which come out by Sam’s House. The shops are not that far away so we have found a short cut.

We start to clear out the room of our stuff as most of it will not come into the room once in isolation. Anything that does needs to be wiped down with a cleaning solution, or washed if it is fabric. The laptop and PDA will be following us, plus a few chargers and things that are essential. With mobile communications being good now, it must have been the highlight of the week to get a letter, or receive a ‘phone call in the old days. Actually letters are good fun to receive here, but we only get them occasionally. Rachel received an oil painting in the post yesterday – of her family's old farmhouse on the ‘moor which was a lovely surprise for her. She will get it framed locally I think and hang it at the house.

At 1615h (whilst I am doing a bit of the ‘blog) we are asked a favour – would we mind moving to Isolation sooner than the 13 February? We have no objections at all really and we ask “when?” The reply is of course “now” so within an hour we have sorted all our stuff into a small pile that can be taken into isolation, and a much larger pile as to what goes back to the house. By the time we have moved in, an adult has taken the room.

Basically a few of Fred’s clothes and a lot of my gadgets have made it through. Rachel’s laptop comes of course and I spend half an hour on the trolley outside his door, wiping everything down meticulously. Any fabric cases are separated, so my camera, video, PDA, assorted chargers/batteries and laptops are all laid bare and installed into the room.

In one hour we have transferred from ‘non-iso to ‘iso’ and Fred seems happy. The room is really good actually and is bigger and lighter. This is good as we could be here some time…..

Basically the same layout as before, but there is a large picture window on one wall, facing the nurses station opposite. One our side of the room is a worktop at desk height which I am typing on now. The internet access is nearby as is the plug sockets. I am sitting here (2010h) in my blue scrub suit, watching the staff on the other side of the glass. It is a bit like being a receptionist, but with no one to receive.

As we are to be free from dirty bugs we have to now adopt the time consuming, but necessary, procedure of coming onto the ward and leaving our outside coats in the cupboard, in a plastic bag. Then we head to the changing room where we choose our blue scrub suits for the day from the cabinet and get changed in a cubicle. Our outside clothes are then bagged up and hung on a rail in the cubicles and stay there whilst we are on the ward. Our outdoor shoes are put on a rack, and will never come onto the ward because they are obviously the dirtiest things. We have indoor shoes now from this point, only to be worn when on the ward.

We are given a locker for our valuables and stuff that will not come on to the ward, such as handbags and wallets, and money. If we need to go off the ward, say to get a meal or wander off, we need to change out of the scrubs, and back into our “outside” clothes again. Apparently you get used to organising yourself properly and end up limiting the time you spend changing and un-changing.

Lots more hand washing and antiseptic gel.

Sadly, eating is limited in the rooms to food cooked/heated on the ward, so fish and chips or kebabs have to be eaten somewhere else. As cutlery and plates are a problem here I might try and see if I can borrow the parents kitchen on Ward 34 tonight. The parent’s kitchen is currently closed for the moment due to infections at Christmas.

There are ten beds in this part of the ward, although if you want to know more about this ward, take a look at the link to the Hospital website on the homepage of my ‘blog. It explains the background behind the ward and what they do. It is not a long section but makes interesting reading.

It looks to be nearly full here at this moment, and a few more are expected in the week I am told. Fred is no longer the New Bug, as there is a three month old, and a six month old here too. It is apparent that the BMT Ward also takes adults as well. The hospital seems to take in patients not only from all over the UK but the world too. There is a family here from Saudi Arabia as well as Greece, so that says something I hope. One of the families did quite a lot of research as to where to go in the world for the treatment and chose Bristol.

My stomach is rumbling now and I will have to go and get some food – the choice is only a kebab tonight unfortunately. As I am doing this on the laptop and will be posting it on the ‘blog by way of a dial-up connection it may not work, so bear this in mind if the words do not make it.














Saturday 10th Feb 2007 (Day 222) (Day minus 3)Sun, 02/11/2007 - 18:39 — endc011
DAY MINUS THREE
Fred starts the first of his Cyclophosphamide today and he has been having hydration since yesterday. He experiences a short burst - 20 minutes or so - of apparent agony which came on very suddenly. It is known that in some adults they experience pain across the face and sinuses and this may be the cause, though it is not really seen in children. Frederick obviously is not able to tell us anything but it soon passes.
The Cyclophosphamide lasts for an hour and is followed by Mesna, which is given to counter a form of cystitus for a further 23 hours.
As previously, a careful eye is kept on his fluid balance and this is done by weighing him regularly and comparing the fluids going into him, with the fluids coming out. His nappies are saved and weighed and if he should be sick, the sheet/pad are weighed too. In theory a fairly good idea of his balance can be maintained although breathing and sweating will lose some of it. In the morning he weighs 9.16kg and at late afternoon he is 9kg.
His urine is also tested as the current chemotherapy can cause inflammation and bleeding so we put cotton wool balls in his nappy for testing. This is done every hour during the day and every two hours at night.
Should he become too "positive" with fluid he will again have a diuretic, Frusemide, to keep things moving. It does not take long for a nappy to weigh nearly 500g.
We need to keep a check on his bum again as the drugs he is having at the moment will cause mucusitus, which manifests itself as soreness and ulcers from the mouth, down the throat and into the stomach. He is vulnerable in the latter and the bum again too.
Day Zero is only three days away now and we start to get prepared. We get an information sheet and begin to be briefed as to what to expect. Rachel sorted out a few soft toys capable of being boil washed for Fred once he is isolated, although I unwittingly jumbled them up again when looking for a spare bag....
There are only a few things we can take in with us, and things like newspapers have to be new and unopened (and not wet(?)), new glossy magazines and incoming post is opened and outer packaging removed. Fred luckily will continue with his 'clean' diet of pre-packed food, and will not be able to eat things like pepper, as I think it encourages a fungus.
Hand washing has always been important for us (Garnett) but it becomes even more important now as hands are ideal for bugs to lurk on. Lots more washing and spiri-gel from now on.
The sooner Day Zero comes, the sooner Fred will become very unwell, although hopefully it will mean the sooner Fred will be on the mend. The next few days and weeks will be the most difficult time so far I think for us; most of the previous complications were unexpected, although the first two weeks were pretty scary I have to say. Luckily Fred does not have a clue as to what is being organised for him.
He gets to play on the floor and in his arm chair today, in between power-napping and general trouble making.
He has done well so far in respect of fluid-retention so hopefully he will have a stable night. I am off to the house to have some Bernard Matthews discounted "premium" chicken and chips (£1.06 discounted, Tesco) for tea, and as the great man himself says "they're booti-flu." I made that last bit up, but you read it here first.

Friday 9th Feb 2007 (Day 221) (Day minus 4)Sat, 02/10/2007 - 04:13 — endc011
DAY MINUS FOUR
Fred had his NG tube put back down last evening and did not resist, bless him. He gagged a bit but sorted himself afterwards.
Another good night for the two of them and I had my noodles back at the house.
It was snowing lightly when I got up and walked down the hill to the hospital. The good thing is that it now only takes us about 5 minutes to get here, and is downhill all the way.
I popped into the canteen on level 5 to get some breakfast for us, which comprised 3 sausage sandwiches and a drink. The canteen is heaving with people today for some reason and the queue moves slowly.
When I get in he is quite happy but I learn that his new NG has blocked. They have tried unblocking the tube with coca cola but that did not work. It means another will need to be piped down today.
The music therapist comes by in the morning again with her trolley of instruments. Today he listens to the guitar and once he gets going, he is given the tamboureen to bang. Armed with a rattle he gets banging the drum with one hand, whilst operating the tamboureen with both feet.
He clearly enjoys music and concentrates on the rhythm. He is not distracted by us whilst he is making this din and he is in his own little world. He ends up laughing constantly as he gets faster. Once the therapist starts playing the recorder he quietens down and listens intently, looking at his fingers.
He gets another NG tube put down after lunch and he seems used to the procedure by now. He stays perfectly still when required, though expresses his annoyance once the deed is completed.
The electrician from Estates will hopefully appear to check over my PDA and Rachels laptop so we can use it. I hope it is today so that I can leave Claire in peace as she posts the 'blogs when I am unable to.
I head into town to get a few bits but it is cold and raining and I do not stay long.
The rest of the day sees Fred having some apple pureé and he is happy. His weight today is 9.1kg so is a little drop from yesterday.

Thursday 8th Jan 2007 (day 220) (Day minus 5)Fri, 02/09/2007 - 05:08 — endc011
Today is my Dad's birthday so I ring home in the morning and evening. It is a shame we are not all at home like we would normally be.
I had a good look around the house last night and was impressed with what I saw. It was opened in 2002 by Gary Linekar and has fifteen large bedrooms. The quality of furnishings and decoration all appear to be high and new, and are similar in standard to an hotel.
The ground floor is large and open, with a reception and settee-seating area that leads on to a communal type kitchen. There is a "kitchens within a kitchen" layout so there is plenty of space for cooking and spreading out. We each have cupboard space as well as fridge freezer areas. The room also has generous dining facilities adjacent to the huge play room. As the families all come and go at different times there rarely is a scrum for space or equipment.
Further down the corridor are some bedrooms and the laundry room which has three washers and three tumble dryers plus a number of wall mounted irons.
We are up on the first floor where there is another multi-kitchen and dining area. The majority of bedrooms are on this level, though if you go to the floor above there are a few further rooms.
Up there is also a gymnasium and a kitchen plus a massage room.
At the rear of the property is a garden on a sloped area with timber climbing frames and an amount of timber decking....
Some of the bedrooms on the rear elevation have extensive balconies over looking the garden too, 'though ours has a less pleasant view.
The bedroom is spacious with fitted wardrobes plus an immense bathroom, shower and wc. All the hot water you can drink too.
To have such great accommodation is such a help too whilst we are being held here against our will. I think it costs about £100000 a year to run Sam's so all donations to this part of the charity are certainly worthwhile, and you can actually see/experience where the money has been spent.
Next door to the property is another block of parents accomodation called 'Ronald McDonald House' which is funded by the McDonald Corporation. I have often wondered whether the residents get vouchers for burgers.
Fred was on a continuous milk feed overnight as well as his TPN, and so he is getting 5ml over 12 hours which helps his stomach to tick over. He now weighs 9.28kg so he is gradually putting the old weight on.
He is very well and active today which is wonderful for us. He has lightning speed reactions too and at times he is difficult to keep under control. Those tubes are so attractive to him he is like an octopus with ten arms.
His NG tube is whipped out whilst we try and restrain him. He is once again pleased with his efforts and so we leave him until the tube is needed again.
When he is "tubeless" he looks totally normal.
He has his last doses of Bulsulfan and Campath today and did not react to it either yesterday or today. He gets some drugs to cover him just in case, but they drop the steroids for today. Tomorrow he will start a phase of Hydration in the evening, in preparation of the next course of chemo. On Day Minus Three (Sat 10 Feb) he will start Cyclophosphamide and Mesna for two days.
The doctor says that his blood counts are slowly dropping now which is what should happen - so far so good.
He has slept quite well today and as I type (1635h) he is in deep sleep on his side, eyes half open, snoring away.
I am staying at the house again tonight so will be making a noodle stir fry from scratch.

Wednesday 7th Feb 2007 (Day 219) (Day minus 6)Thu, 02/08/2007 - 03:10 — endc011
Just after I sent off yesterdays 'blog I noticed one or two spots on Freds right cheek. I pointed this out to the nurse who explained it was expected and was happening because his 'T cells' were starting to be killed off through the Campath.
Over the next few hours they became more prominent and spread to his legs and back of head. It can come in varying degrees from a mild rash to severe hive-type things. I am told that this generally appears on the first dose, getting less on the second and third doses. He gets some Pethidin and Piriton to counter the reaction.
It starts to fade gradually but he is sick a bit later. Luckily it is some time since he had some oral chemotherapy so hopefully none has been wasted.
The nurse clears his bedding whilst I hold Frederick and give him a cuddle. He is looking very sad at that time, and quite worn out. He is feeling rotten and I hope appreciates all this horrid treatment is to try and make him better. He hugs on to me tightly and blinks wearily but manages a weak smile.
A quick bed bath and new clothes make Fred feel alot better and he goes into deep sleep. I check him at 0400h and the rash looks to have subsided by now.
By morning it has gone.
I chat to our room cleaner who explains the system which is similar to where we were before. More bags for our grubby stuff though.When the rooms are "deep cleaned" it takes about 3 1/2 hours and to date the infection control here is very good which is promising. I suppose the room is just 3 metres square.
He is active most of the day with a few sleeps in between. He gets a massage in the afternoon which he tends to like, but is still too active to enjoy it and relax.
Rachel returns and Fred has some rice pudding. He is weighing in at 9.1kg which is good.

Tuesday 6th February 2007 (Day 218) (Day minus 7)Wed, 02/07/2007 - 04:38 — endc011
DAY MINUS SEVEN
I popped back to Sam's House last night to get some stuff and had a quick look around. All looks good and I saw a few familiar names on the residents board.
I headed back down the steep hill in the gloom and heard a loud scraping sound behind me. It was a cyclist who had probably been coming down the hill too fast and did not see the car emerging, so skidded off the bike, avoiding the car. The road was damp too and he went past me, followed by his bike. He got up and hobbled about for a bit as I went into the kebab shop. Probably did not have any lights on either.
We both had a good night though it was a bit cold without a duvet. Fred had his hat on again to warm his head during the night.
As we are no longer barrier nursed I have some breakfast in the canteen while they prepare Fred's chemotherapy for the day. Today he is having Campath and Bulsulfan plus a cocktail of other drugs during the day.
They are tending to do his obs. every 30 minutes now as he may react to the chemotherapy drugs he is getting.
One of his nurses today is Sarah - who worked on W34 for a bit - and she has not seen Fred for a few months now. She reckons he has grown by a huge amount.
Fred spends a while in his armchair and falls asleep. Once back in his bed he is playing with his toys and shaking the cot from side to side. The music therapist comes around (which he has enjoyed in the past) and listens intently whilst she plays the guitar and sings.
My brother pops by but does not join in the singing. Fred continues to accompany the therapist with a tamboureen and rattle and he seemed to enjoy it very much.
I chatted with one of the doctors about blood, and the transfusion. Apparently if all goes to plan, Fred's blood group will change to that of the donors, which happens to be different. At one point he may have two blood groups.
It is difficult to see Fred happy at the moment with an "appointment" for difficulties coming within the next few days.

Monday 5th Feb 2007 (Day 217 )(Day minus 8)Tue, 02/06/2007 - 04:07 — endc011
Fred is finally where he should have been in November of 2006. We are now in Cubicle 14 of the BMT Ward and live at Sam's House just a few minutes walk from the hospital. Our accomodation there looks good, having a huge ensuite bathroom.
Yesterday he started some anti-infective treatment comprising three drugs (Ambisome, Clonazepam and Defritide.)
Today he had his first "conditioning" chemotherapy drug Bulsafan so the ball has started rolling for him in effect. He may start experiencing side effects soon but I understand at around Day Zero and beyond things will start to occur.
I arrived with my mum and dad during late morning and they enjoyed seeing Fred on top form. He was tired so had a sleep whilst we had some lunch but soon woke again. He enjoyed the attention whilst perched in his new blue arm chair.
The ward is so much quieter in that there is not that constant bustle like before. Ward 34 was once or twice a bit noisy for Fred but was generally good fun. That sounds weird for an Paediatric Oncology Ward but we were settled and happy to be there, given the circumstances. It was like going into work each day seeing the same old gang so we shall miss them. Obviously his rooms on that ward have been filled and again it seems odd to see a family plopped into our old "home" of six months.
I visited Ward 34 this afternoon to hand over a cheque in the sum of £1000 from one of the newspapers that published an inaccurate article about Fred. Hopefully it will help those coming along behind us in some way.
The room we are now in is about 3.5m square with a window overlooking the new renal unit which is under construction at the moment. It has similar facilities but no ensuite like before. There are not any baths or showers here which is peculiar so we have to make our way back to Sams House or sneak to the parents PICU showers on Level 4. Also there is not any air handling in the room so it is quite warm in here at times. Apparently gets colder over in Isolation though.
Rachel is back at home for a day or two and is taking some stuff back too.
The good thing about this ward is they get you cups of tea and other things which is different. The staff so far have been great too.
I am not sure what to eat tonight as I have yet settled to a routine.

Day 216 (Sun 04 Feb)Mon, 02/05/2007 - 04:53 — endc011
You can see that I have been a bit busy recently, and that is the reason why the ‘blog has been delayed since Thursday 1 February. I have now updated back to Day 213. You will also note that the titles are formatted slightly differently for each day. Claire, who does the ‘blogs for me when I am unable to post them, prefers a different format including the year. Thanks Claire for all your help though :) I do not know what computer arrangements there are in the BMT Unit so there might be a bit of ‘blog disruption over the next few days.

I also seem to have been eating a lot the last few days which makes a change from the intermittent feeding we get used to in the hospital.

Today I went to a christening in Paignton, where I am to be godparent of little James David, or david james as the vicar kept referring to him. He is 6 weeks younger than Fred and you will have seen some of his comments on the ‘blog over the duration. James and Fred went out in the week before he was diagnosed (when I was on a weeks leave) down to Goodrington beach on a nice hot day.

Again the weather is very good this morning and the sky is blue, with the bay looking a real picture. I am collected by Amanda and Mark, together with James who is very smartly dressed indeed, strapped into the back of the car. I have not seen him for a few weeks, but he is growing quickly.

Once at the church we are given a brief run down of what will happen, as I was not able to attend the rehearsal. All went well, and even the children did not make any noise, which was good. James managed to hook my handkerchief out of my breast pocket and suck on it though.

Over to the golf club for a carvery and drink afterwards was another great change. I have been eating a lot the last few days, and I noticed that the waist band on one of my suits had tightened just a little. On my return to home I had a little nap, and have to pack all my stuff back up to take back to Bristol.

Rachel assures me that Fred is very active and moving around the bed too. They have moved from Ward 34 to the BMT Unit as planned. I have not heard much more than that really, and I suspect the accommodation is of similar size to our cubicle on Level 5.

The ratio of staff his higher, at 1 nurse for every two patients. On Ward 34 it varied but was around 1:3 or 4 patients. There is also an adult on the ward too and I think they can take older people. It is different in that you can press the buzzer and they will come and cook your food for you as they have Hotel Services staff permanently available on the ward. Apparently nothing is too much trouble so we will have to see. I have purchased a lot of spicy noodle packs from our local Thai mini-market.

Day 215 (Sat 03 Feb)Mon, 02/05/2007 - 04:17 — endc011
I met with my brother in Torquay and bought some things I needed and had a quick look around.

I am visiting Wayne and Claire tonight for an “annual feast” that occurs this time of year. It is a time when Wayne tries out his new draft menu for 2007, and so we have to sample about 15 or so main meals and comment on them, followed by the puddings. Wine also needs to be tested too. We do not have full portions of course, just samples…

I ring Rachel and hear that they have moved up to Sam’s House and it is apparently very good indeed. She briefly explains the layout of the place and it sounds like a good change to me. Luckily CLIC arranged for one of the taxis to move the stuff across.

Day 216 (Sun 04 Feb)Mon, 02/05/2007 - 04:17 — endc011
You can see that I have been a bit busy recently, and that is the reason why the ‘blog has been delayed since Thursday 1 February. I have gone back to Day 213. You will also note that the titles are formatted slightly differently for each day. Claire, who does the ‘blogs for me when I am unable to post them, prefers a different format including the year. Thanks Claire for all your help. I do not know what computer arrangements there are in the BMT Unit though so there might be a bit of ‘blog disruption over the next few days.

I also seem to have been eating a lot the last few days which makes a change from the intermittent feeding we get used to in the hospital.

Today I going to a christening locally, where I am to be godparent of little James David. He is 6 weeks younger than Fred and you will have seen some of his comments on the ‘blog over the duration. James and Fred went out in the week before he was diagnosed (when I was on a weeks leave) down to Goodrington beach on a nice hot day.

Again the weather is very good this morning and the sky is blue, with the bay looking a real picture. I am collected by Amanda and Mark, together with James who is very smartly dressed indeed, strapped into the back of the car. I have not seen him for a few weeks, but he is growing quickly.

Once at the church we are given a brief run down of what will happen, as I was not able to attend the rehearsal. All went well, and even the children did not make any noise, which was good. James managed to hook my handkerchief out of my breast pocket and suck on it though.

Over to the golf club for a carvery and drink afterwards was another great change. I have been eating a lot the last few days, and I noticed that the waist band on one of my suits had tightened just a little. On my return to home I had a little nap, and have to pack all my stuff back up to take back to Bristol.

Rachel assures me that Fred is very active and moving around the bed too. They have moved from Ward 34 to the BMT Unit as planned. I have not heard much more than that really, and I suspect the accommodation is of similar size to our cubicle on Level 5.

The ratio of staff his higher, at 1 nurse for every two patients. On Ward 34 it varied but was around 1:3 or 4 patients. There is also an adult on the ward too and I think they can take older people. It is different in that you can press the buzzer and they will come and cook your food for you as they have Hotel Services staff permanently available on the ward. Apparently nothing is too much trouble so we will have to see. I have purchased a lot of spicy noodle packs from our local Thai mini-market.




Day 214 (Fri 02 Feb)Mon, 02/05/2007 - 04:16 — endc011
I am awoken early by the bedroom door opening, and Samuel (who is nearly 4) telling me it is time to wake up. This is at about 0730h and I thought I might be able to wallow a little longer, but obviously not, as he repeatedly came in. He also wanted some of his toys in there too. Eventually I get up, and we have some breakfast.

That morning we head up to the field to pick all the poo up of Frances’ three horses which is actually such a change to our normal routine and as it is a fine cold morning, being out on the levels of Somerset is great.

I head back after all that and hear from Rachel they are getting ready to move the stuff from CLIC House across to Sam’s House which is closer to the hospital. It is still owned and operated by CLIC Sargent, but is mainly for people with children staying at the hospital before, during, or after a BMT.

I have not been there at all before and I am not sure where it is. However we are told that is “better” than where we are at the moment and is newer. There is a much more higher level of cleanliness at the house for obvious reasons, and there are some different house rules to reduce the risk of infection.

When I get back I decide to pop over to Torquay in the evening as one of the girls from work is leaving. I have not seen most of my colleagues since June 30 2006, when I took a weeks leave and then Fred was diagnosed. They are bowling and going to a Mexican restaurant nearby. It is good to see them all again and catch up on the latest in the office and hearing the usual reports.

After another big meal I head back home (not too late) planning to do a lot more on Saturday.

Day 213 (Thu 02 Feb)Mon, 02/05/2007 - 04:14 — endc011
Fred behaved overnight although on a couple of occasions he was sick. Nothing like what we encountered before, but it is decided that the NG tube should come out and be replaced. It has been in three weeks now and the stopper on the end has broken so that is no bad thing.

One of the surgical team come down to look at the incision on the neck, where the recently inserted the Hickman line. It is covered with the temporary strips, steri-strips but when Fred is craning his neck, you can see the wound clearly and the tube inside. Obviously Fred will become susceptible to infection and we point this out.

They re-strip the incision and Fred is held down, though he does not make any fuss. He is just very curious about those around him.

Today is very active again and is turning on his stomach and trying to swim but does not get anywhere. He still gets upset and being stranded sometimes but he is more happier at this new look on life around him..

Rachel comes in and is soon joined by Colin, June and Gaye. As we are still being barrier-nursed they have come armed with flasks of hot water to make some tea as we are not able to use the parents kitchen still. I think we have been isolated in this way almost continuously since Christmas, but with a short break.

Fred is due to have the “echo” on his chest which is routine before a bone marrow transplant. As he is allegedly “buggy” with C – Diff. and the norovirus they come to Fred with a mobile unit. Lights down, gel on his stomach, he behaves himself impeccably once again.

His NG tube is whipped out and is replaced later on in the day. He looks great without that damn tube hanging there.

After that we are given a tour of the BMT unit on level 7. It is similar in look to the current ward but bit seems much quieter. We did not see many staff about but they tend to spend longer in the cubicles rather than rushing around as they do on Ward 34.

The Unit is in two parts. The first side that we will be staying in is the non-isolation side. Very similar to where we were before, and we probably will not notice too much difference. On the 13 February (Day Zero) Fred will be transferred to have the infusion of marrow, probably late afternoon. To enter the isolation ward you change into the blue scrub suits that they wear in theatre and store your belongings in the lockers. You need to bring a pair of shoes in for the duration that are new and have not seen the outside world. Once all changed you enter the ward and once in the room you do not come out unless you are going off the ward.

It is geared up to look after the patient and parent so they will get you anything you need. However there is not any food allowed in the rooms so you need to go to the parents kitchen – which is currently closed due to Norwalk….

The room is cleaned twice a day or more so clutter is not allowed and when you want to pass grubby items out of the room, you place it in a cupboard that is accessible by the staff on the other side. The whole key to success is to remove all threats of infection hence the isolation.

Fred will only be allowed four nominated visitors, including Rachel and I, so that leaves only two to come and see him. Once we find out what actually happens we will know more.

We head back down to see Fred who is happily playing with his toys unaware of all this preparation.

Michelle, the oncology consultant who has been co-ordinating his treatment comes in for the consent forms to be signed. She re-caps on one of her earlier meetings with us, when she warned us what to expect after the bone marrow transplant. Fred is almost certainly going have a very very difficult time over the next few weeks with the most likely being stomach problems. There are a lot of other complications too, though we hope that he can work his way through them again as he has before.

She reminded us of the statistics of success which really brought the whole thing home, and to see him lying on the bed near us, rolling and chuckling made it all the more difficult to comprehend.

After lunch we had a good time with Fred and he enjoyed all the company.

I am off for a few days, as Fred will be heading to the bone marrow transplant unit on Sunday.

I am visiting some friends in South Petherton which is an hour or so away, and stay the night with Frances and Paul. I am fed with great food that evening which is a trial run for a dinner party they are having in a few weeks time.

Wednesday 31st January 2007 (Day 212)Thu, 02/01/2007 - 03:38 — endc011
The doctors confirmed the good news to us this morning and that we would be transferred from Ward 34 to the BMT Ward on Level 7 on Sunday 4th.
He will continue to have antibiotics and also will start a short block of chemotherapy today. This is really a 'maintenance' treatment to keep the leukaemia at bay whilst awaiting the transplant day.
On Monday 5 February he will start his 'conditioning' and this shall last for eight days. It is a treatment to kill as much of his own marrow as possible before the transplant occurs. The first day of the treatment is known as 'Day Minus 8' with the transplant date of the 13th being 'Day Zero.'
After that each day is known as 'Day Plus 1' and so on.
It is likely that little Fred will become profoundly ill over the course of the treatment and we have been briefed as to the likely problems. These problems could start occurring around Day Plus 5 I believe. Some problems he may have experienced before, and others will be new to him but it is common to have serious situations arising and we have to be prepared for that somehow.
As this is his only option for survival it is great we have the opportunity. Many many people do not and that is why it is so important for people to join a bone marrow register. However, now the day is actually approaching I worry for Fred. To not have the transplant could have been a route for us but we saw from his rapid relapse in December that it would not have been a successful tactic.
The BMT is not a guaranteed fix but is the best we have.
He has enjoyed today with a few more visitors and has also had another session with the physio. Hannah brought him in an adjustable soft chair which he seems to like very much indeed. It can be moved to suit a number of positions from up right to reclined.
Lots of laughter and smiles from Fred has meant a good day for all.
The weight of him at 9.2kg is likely to be a real weight, which is promising too. Hopefully the heavier he is, the better position he will be in health-wise for his BMT.
I am also given a pack of Polish food from one of the other children's parents, who is Polish. She was eating them at the house a few weeks ago and I asked what they were. They looked like a huge plate of dumplings but are made of potato I think. About the size of golf balls you have them with either onions and olive oil, or just butter.
I should have spent the last seven months learning new languages as my Polish is not good, although I am a proud monoglot, I am not sure how to cook them. If anyone has any ideas then please post them on the blog here.

Tuesday 30th January 2007 (Day 211)Wed, 01/31/2007 - 03:57 — endc011
Another quiet night for Fred and he also took about 80mls of milk plus water.
He was NBM from 0500h and but had a quick feed half an hour earlier. I awoke at 0600h and listened to the radio as he stirred slowly and had a shower.
He was going to theatre early, but is put to the back of the list due to his bugs and also that the chemotherapy will not appear until late morning.
However he is unexpectedly brought forward to 1015h and heads down to theatre. Today he weighs 9.2kg which is an improvement on his previous weights and the heaviest he has been so far for a long time. He is slowly heading for his average weight though this is only a guide weight.
They give him anaesthetic and drifts off in 10 seconds or so. I put him on the trolley and leave him to the staff.
He is down there until 1200h and we collect him from theatre. He looks battered and bloodied this time with bruising. He is not very happy either and we learn they did not give him his IT nor do the trephine either. The chemotherapy was not ready in time.
We took him back to his room and washed him down. He was quite grubby with a few extra holds in him.
The Hickman line is now back in and ready for use. It is back on the same side as the one removed on Saturday night and that may be how the bruising is more prominent.
His femural line was removed very neatly too though he is a bit sore all over. He has little plasters on his back where they took the bone marrow sample.
Fred remained jovial during the day amazingly and had a little further milk.
We will get the results as soon as they are available and this will decide whether he has the transplant on the 13th or not. This is the worst bit as Fred looks so well at the moment and has had a rough two weeks really. If the leukaemia has come back rapidly we will have a difficult time ahead for all of us.
He has been sick a couple of times this afternoon hopefully due to the anaesthetic. He seems "comfortable" as they say.
Update at 2010hrs;The oncology consultant rang through to the nurses desk on ward 34 with the results of the bone marrow aspirate. She asked Anna the nurse to go in and tell Rachel that the tests showed the marrow as "clear" and that Freddie would be as we understand it proceeding with his transplant on the 13th February as planned.
This is great news and I will find out more information tomorrow.

Monday 29th january 2007 (Day 210)Tue, 01/30/2007 - 03:46 — endc011
Whilst I gave Fred his meds last night he awoke in considerable pain and tried to be sick again. This continued for a while before he drifted off again. I have him a little milk by his NG tube and he awoke again in serious pain.
This seems to happen alot and Fred is not keen on it either. We discuss the matter in the early hours and decide no more tube feeding until when it is light.
With that Fred and I have a very restful night.
The following day I chat with the dietitian who explains the bottom of his NG tube is lower than it should be on the x ray, and is passing through his stomach in toward the jejunum area. Apparently you can have NJ tubes in this area but currently this may be the source of irritation and so they will pull it back 3 inches and see how he copes.
My mum dad and brother visit today and witness his NG being pulled back but Fred stays very still when needed and is all sorted now.
He is very active again today and 'enjoys' a constant stream of people coming to see him, mainly about tomorrows procedure. He will have a bone marrow aspirate and possibly a trephine (with the latter being a hollow drill to take a bone sample, I think.)
They will also do a lumbar puncture and possibly give him some chemo in the spinal fluid. He will be done in the morning I think, though that can be variable of course.
Mum and dad go back after Fred has entertained them for the day and he remains alert for some time.
I read 'Practical Caravan' and todays 'papers, whilst Fred sings and shouts before finally flaking out after 30mls of milk and water.

Sunday 28th January 2007 (Day 209)Mon, 01/29/2007 - 03:16 — endc011
Another quiet night for the two of them means some better sleep for both of them.
Rachel heads back this morning which leaves Frederick and myself to entertain each other.
He is on fine form again and we manage to have a wrestling competition as well as lots of cuddles.
For a time he is off the pumps and free to roll about the floor. He is on the mat for nearly an hour and eventually rolls off into the feet of the trolley a bit too quickly. This once again frightens him, so he goes back to his bed where he relaxes and falls asleep.
I pop into town for some food as well as some stuff for Fred. When I get back he is quite angry and the three nurses on today have been taking it in turn to try and placate him. Once I arrive he settles and watches TV whilst I read the papers and eat sushi.
Later he is put on my bed and is propped up with pillows to try and strengthen his neck muscles. He still has a way to go in this respect but soon he gets out of hand and is returned to his own bed.
His blood counts are gradually increasing and he continues to have GCSF to boost them. Hopefully they will not rise unexpectedly.
On top of his TPN feed he is having 20mls of Infratrini milk followed by 5mls of water. His weight today is 8.8kg 'though I do not know how much of that is actually excess fluid.
He is fast asleep now clutching his dummy and snoring loudly.

Saturday 27th January 2007(Day 208)Sun, 01/28/2007 - 03:04 — endc011
Last night I was looking forward to a "bangers and mash meal" only to be advised it was now out of date - I thought I had only bought it a day or two ago. My hopes for some ravioli were further dashed when it too had expired last week.
Being remanded in custody means we do not have access to the families kitchen, canteen or computer room and have to rely on us asking staff to get and make food and drinks. As there is not a formal system for treating us like in-patients, it is very much up to us to either eat out, or buy food to be prepared by staff whilst being barrier-nursed. You cannot even rustle up a cup of tea without asking, and technically hot drinks are not allowed on the wards.
The staff are of course busy and easily distracted to do more important tasks, which means sometimes a meal or two can be missed in here. I can nip out in the evening up the road for a kebab quite easily but it is not so practical for Rachel.
Fred is very active and whilst rolling onto his stomach is fun, it causes havoc with his tubes. He is normally having four tubes working at the moment, being morphine, antibiotic, TPN and paracetamol.
He is using the tubes now like climbing ropes together with the bars on the bed to make his way up and down the cot.
All of this activity means he needs constant watching, even in a secure 1m x 1.5m 'cage.'
Compared to a week ago he is much improved and more settled. I stayed for the first time in his new room and it was Ok. At least the shower is much better than before. The window too gives a clear view of late night revellers sporting traffic cones on their heads.
It seems a bit cooler in here at night, with the duvet being as thin as a cats ear.
We went into town at lunchtime whilst Fred slept soundly. Nothing much else happened today and so I head up to the house at about 1800h. I shall have a steak and kidney pie which has been defrosted - a supermarket bargain now out of date, but safely frozen on purchase.

Friday 26th January 2007 (Day 207)Sat, 01/27/2007 - 03:19 — endc011
Fred and Rachel had a good night with him settled.
He is having small feeds of about 20ml and seems to be tolerating so far. It is via his NG tube so is still cheating a bit but does the job. He is also getting his TPN again too without any apparent problems.
These little advances mean that he has gained weight to 8.8kg although an amount of that could be fluids.
For the first time in months he took to the bottle today and happily drank 35mls which is not a lot, but indicates that HE wants it at that time. The second time he holds the bottle himself for the first time ever and drinks carefully. He even can bring the bottle back up to his mouth when he wants. Another little milestone in that he has been so uncomfortable these last couple of months he did not have interest in much.
The doctors are pleased with him to date. He will be going back to theatre on Tuesday 30 January to have a LP, BMA and a new Hickman line put back in. We will have to wait again for a bit to see if the leukaemia is returning.

Thursday 26th January (Day 206)Fri, 01/26/2007 - 03:55 — endc011
Hello BloggersTim is back in isolation with Freddie and Rachel. He has sent the following update for you all:
I get back about lunchtime and trot off down to the hospital. When I get there I find his new room and peer in.
The room is dark and I can see a small shape in the cot. I can also see Rachel in the gloom too.
He is fast asleep looking very comfortable and the room looks fine. Slightly smaller but the window has a view and seems alot better. The en suite shower is much better than before and Rachel does not want to go back into cubicle 5. After a while I can feel why.
I also find out he has another gut bug, C-Dif. which is clostridium difficile. More barrier nursing.
Hayley and Graeme are in town and we meet up with them for some lunch. A couple of pints and a chat which was a nice change.
They came back to see Fred and he was fairly happy to see them. Again he looked very tired but managed to stay awake so that he did not miss anything.
I got back to the house and it was heaving with people. There was a time some months back that I was the only one in the house for some weeks. Good to see a few of the old faces though.