Day 293 (Sun 22 Apr)Mon, 04/23/2007 - 03:55 — endc011
Rachel said goodbye to Rachel this morning early. She was the nurse who came to Fred’s christening the other day and I doubt if I will see her unfortunately.

Fred is rather unsettled overnight and is obviously in some pain. It would appear that he has some ulceration to his stomach and this is giving him the pain. He has also got some pain in his mouth and is likely to have some irritation to the brain if the pressure in the CSF is up.

As he gets older his cries are slightly different, and we do not want him to roll around and be unhappy. The anaesthetist is bleeped as we would like to amend his pain relief as it needs doing. He is in theatre at the moment and Fred manages to nod off for the time being.

When I coming back along the corridor he is walking towards me and we have a quick chat. He comes in to see Fred who is again fast asleep and looking very content. He agrees that Fred needs the next step up and we get morphine IV via PCA (patient controlled analgaesia) which means every 30 minutes Fred can have access to a 1ml slug of morphine. It works well as we do not necessarily want Fred getting it when he does not need it.

It seems to work well and allows him to flop around the bed and kip when he wants, and thus makes him more relaxed.

He is vomiting more now, and it is really just “old blood” from his stomach. It has a coffee grounds appearance and it better out than in of course. He is quite happy once he has got rid of it. He does love having a pink foam lolly soaked in water poked in his mouth and suck it like mad. Makes him sick though, but at least he enjoyed it.

The weather is bright and breezy and I head into town to get something for tonight and some lunch for the both of us. It is quiet on a Sunday and I am bawled at by a gaggle of teenage girls in a ghastly pink stretched limousine that is making its way through the traffic. The odd things with these things is no one can really see who is in it (which defeats the object of hiring it), so the only way for people to notice is for them to look out and make a noise. Trouble is the only window to open is the back one and they only come down about 8 inches or so. They try desperately to catch my attention as it slowly moves by.

I turn to see three contorted faces jockeying for a position in the tiny opening, each trying to outstretch an arm without much success. It reminded me of a sight I saw in Egypt where relatives deliver foodstuff to the inmates at a local jail, and do so by passing it though the bars in an opening of a wall by the pavement. All you could see were the prisoners arms frantically grabbing at the stuff as it came close to them.

I collect some food and wait in the “5 items or less” queue only to have someone in front with nine items. Instead of sending him off to the back of another queue he gets processed without comment which makes my blood boil.

During the day Fred remains asleep but needs his PCA every 1.5 hours or so. Once we get used to it we will know when it is the time to give it to him. He does wake up and bawl anyway, so I guess we will just have to wait to see whether he is being grumpy or whether it is real pain.

The doctor comes in today to have a look at him and we discuss a number of things. She mentions that Fred may not go to theatre after all, as his name is not on the list and it is full now. He was due some IT Methotrexate I think, plus a LP. I hope he gets it as we do not know what happens at Exeter.

We have started taking things back to the house so as we do not have too much junk left in the room. I still tick off each day on the “Bone Marrow Transplant Flow Sheet” we were given on Day Minus 8 when we were admitted to BMT Non-Iso. It has various key dates and treatments on which we viewed with curiosity when we got there. One thing it did does have a précis of his time from July 2006 to February 2007, summarising his treatment in ninety words or so. It reads:

Diagnosed with infant ALL – July 2006. WCC 917. Had spontaneous tumorlysis. Immuno: Pro-B ALL. Cytogenetics: MLL gene rearrangement. Started chemo. 08.07.06. Had renal failure requiring haemo-filtration and ventilation. Seizures due to left MCA and PCA infarct. Developed chronic tubular dysfunction with Na*, K+, HCO3, PO4 and CA++ wasting. Had pseudomonas sepsis requiring Hickman removal. Harvest showed 60% blasts. Received Cyclo/Etop (R3 consolidation.) BMA then showed 3% blasts. Acquired C diff. and Norwalk virus diarrhoea which has cleared. Enterobacter and Enterococcus sepsis needing line removal again (Jan 07). Now in remission.

It sort of translates as (remember it is only my own woolly understanding and is likely to be wrong in places):

Fred was diagnosed with Acute Lymphoblastic Leukaemia, a type found specifically in infants, in July 2006. His white blood cells count was 917 when it should have been somewhere around 10 – 15. Once treatment started he experienced tumorlysis, a condition where the cells break down far quicker than the body can tolerate, thus releasing toxins which need to be managed. The type of leukaemia is Immuno: Pro-B, and the cause was a rearrangement of a gene. His chemotherapy treatment commenced on the 8 July 2006. After that time his kidneys started to fail, and his blood was filtered by a machine which takes it out of the body, and returns it filtered, minus the bad bits. He also had some help breathing with a ventilator during his stay in PICU. He also had a couple of fits and scans showed some bleeding to the middle and back left of the brain. His kidneys then started to leak some of the body’s various chemicals - sodium, potassium, bicarbonate, phosphates and calcium. After that he contracted pseudomonas, a nasty infection in his Hickman line which ended up being removed in theatre. When they took a harvest of bone marrow in December (in preparation for the marrow transplant they take some Fred’s marrow and store it for later use) it unexpectedly showed the leukaemia had returned suggesting a very high percentage of the immature cells. His relapse was treated with Cyclophosphamide and Etoposide chemotherapy drugs. Following that treatment, a bone marrow aspirate showed the blast cells were at only 3%. After that Fred contracted clostridium difficile and norovirus, which is a bug. I think the media like to call them “super bugs” but they are bugs that you do not want hanging around really, especially if you are vulnerable. Following that he grew Enterobacter and Enterococcus bugs, which I think came from the stomach, into the blood and decided to attach themselves to Fred’s recently replaced Hickman line. That line was removed by theatre late one night as an emergency. After all those events they considered that Fred was then in remission.

Sadly the final paragraph is now longer correct.

I take the opportunity today of finishing the “Fred’s NHS Cash Cow.” I attach the lashes and the ear tag, and give it a pair of eyes. I shall have a method of opening it, as I do not want to take the money out that has been put in. The world will now see, for the first time, all my efforts which started in BMT weeks ago. Rachel has been my Art Director when I am unsure of what I needed to do. Also I must thank some of the staff for their assistance and encouragement for me to finish the thing when I started to flag. I would also thank the NHS for the various bits of things I used whilst in isolation which were only going to be thrown away anyway.

As the day of departure gets closer it is a sad feeling. We have been here over nine months and have had to settle into a routine. We are leaving not in the circumstances we had all hoped for, and it is a very strange feeling. Usually when you move, it is for a reason that can look forward to, but it means we have got to the next stage though not the end. Of course, we do not want to stay here any longer than we have to really because there is nothing left for us here now. We will leave behind a lot of people who have helped us and have looked after Fred, and I regard most of them as my friends, some more than others which is inevitable. All have been brilliant though and for that I am truly grateful.

I wonder what the R D & E will be like, and we will have to start all over again with them. This time however we are armed with knowledge we did not have on Day One, on July 8 2006. It would have been a good idea to get Exeter to read the ‘blog beforehand so they can see who we all are and how precious Frederick is to us all. However we will have to go through the first few days answering that question “so tell me, how did he present…..?”

Day 292 (Sat 21 Apr)Sun, 04/22/2007 - 04:54 — endc011
These “goodbyes” are becoming a more regular event now, which makes it increasingly difficult for us, but need to be done to say "thank you". Last night Charlie headed off after work as she had looked after him on Friday. She is off for a week now and she took the photo of Fred’s dummy lying on his ear. Fred will miss her odd (but dry) wit too, as will we sadly.

Fred manages his first smile in a while when Rachel comes in this morning just after 0830h. He has been very settled but is asleep most of the time now. This has its advantages and disadvantages of course. It is good to see him sleeping and being peaceful, but we are missing the noise and activity of “normal” Fred as he once was. Smiles are severely rationed at the moment too. He is desperate for a drink most of the time and is now thirstily glugging on his oral meds.

He gets his normal amount of Oramorph, which is every four hours, with extra doses every two hours if necessary. I guess this, plus the other drugs, are making him so sleepy.

Today we head in to town with him. He looks about at the people rushing by and regularly nods off. The sun shines on his little bare hands and feet, hopefully warming them up a bit and making him feel like he is back in sunny Devon. He is also wears his little blue sun hat to keep the sun out of his eyes. Rachel manages to locate some false eye lashes from Superdrug for £1.49 and I get these to try and finish Fred’s Cash Cow which should be revealed before we leave for Exeter on Tuesday. Only a few people have seen it so far, and I think they are impressed. Fred, however, has shown little interest but may perk up when I put some money in it for him.

When we get back to the hospital mid afternoon, we learn that his nurse Sarah has gone home sick, which is another sad thing. I think she wanted to see Fred before she went. She is another long term Freddie fan and I hope she is on again before we all go on Tuesday.

A few days ago we tried various ways to make an imprint of Fred’s foot which I may have mentioned. We tried play dough but opted for damp sand instead, and poured on the plaster of paris. As the sand is damp anyway, we have waited for the thing to dry as long as possible so it does not break. I will try and post a photograph of the thing as it is slowly revealed. The one I took today should show the little toe appearing in the foreground with the other just behind. It is a bit like one of those “dinosaur” archaeologist sets you can buy for children, where you chip away at the solidified sand and find a relic.

Sam the play girl made a Lego “bund” on a base and lay 10mm of damp sand, floated smooth. Freds imprint was quite good and so in went the plaster. Yesterday we tipped it upside down, took the Lego away and then have been letting the sand dry naturally, before brushing it away carefully with a brush bit by bit.

We also notice Fred has anther tooth appearing on the front top left central incisor and looks a biggy. Another reason he must have been in discomfort poor lad.

We get a visit from Linda and Mike who are visiting Mike’s son who is in PICU on Level 4 at the moment. Fingers crossed for them too please.

We also get a visit from Hayley, one of the nurses who looked after Fred in PICU and she is one of the Outreach Team from there, who visit wards to assess patients who are on a list that suggests they may need to be transferred to PICU at sometime. Fred in the past has been on and off that list quite a lot, ‘though today is a social visit, after they became aware of Fred’s situation.

When I get back I start packing the remainder of our clothes ready for the journey back. We have not accumulated the same amount as others, but it is an opportunity for us to jettison stuff that is old and tired and is no longer needed. I chuck out quite a few T-shirts and a some trousers and will use it as an excuse to get some more someday when we are back, or indeed when I need them I suppose. I have managed to keep the filing under control here too, as I have taken stuff back gradually each time I have returned home.

It is an odd business trying to keep on top of bills and correspondence here when you really do not have the time and facilities to do it the same way as you would normally. Only a couple of slight problems here over the time, but nothing to worry about. Direct Debits are marvellous things in this situation, as you do not have to think about silly things like bills, but need to watch that they are right. These utility companies are almost as bad a mobile telecommunication companies at estimating your bill for you and general crummy customer care.

Not much else has happened today again, with Fred remaining as he was but much quieter. Today I suppose was OK in a way and it was nice to find another toothy-peg.

Day 291 (Fri 20 Apr)Sat, 04/21/2007 - 01:48 — endc011
Fred enjoys his last music session with Julia, and percusses with his maraca and tambourine. He enjoys this time and shuffles his feet too. We end by singing “The Wheels on the Bus” and he is beginning to doze off by then.

He is due in theatre at 1130h and shortly after 1145h we get the call. He is plopped into his pram and makes the journey he has done so many times before – down in the lift to Level 4, out of the lift turn left, through double doors and turn left. Swipe card through the double doors signed “Theatres” and through the automatic doors to one of the rooms. I stay in reception and wait whilst Rachel goes in with him.

Today his nurse is Charlie and they are in there for five minutes or so. It is a strange reception area in that it is usually unmanned and people in blue scrub suits and theatre headwear flit through. Some are carrying little polythene bags with bits of equipment in, presumably heading for theatre. Some are into the “designer” clogs and headwear, others are not.

Charlie and Rachel emerge Fredless and we head back to the room to wait for Fred. It is not long and we go back down. Again the two of them collect Fred.

He emerges on a trolley with a porter guiding the machine. The lifts are slow again so we decide to use the service lift in the bowels of the building. Fred is quite chirpy again though.

Whilst the anaesthetist was holding him he bled from one of his ears. This ear has had a suspected infection for some weeks, and it appears that he has now got a perforated eardrum. They took a sample of the gunge several days ago and it came back negative, but we hear that another test came back as a fungal infection. I do not know what treatment he should have had but was not grabbing his ears, so hopefully was not in any pain because of it.

He will get some ear drops and some antibiotics in the day to deal with it.

After lunch we take him out up to Whiteladies Road and the Triangle. He watches for a while and then sleeps. We come back through the park on a very sunny day.

Once back he settles and hopefully this will continue.

Michelle comes in late afternoon to discuss the results of the tests and explains the number of leukaemic cells in the sample has gone from 10000 down to 700 and will hopefully continue to decline so as to keep Fred comfortable. Once back in Exeter we will also have a better idea of their plans.

Today was not too bad really.

Day 290 (Thu 19 Apr)Fri, 04/20/2007 - 04:29 — endc011
The pain relief seems to work in that he slept for 14 hours solid overnight and I did well too. He did not require any morphine for 24 hours either which was nice, as he was also getting some paracetamol and other stuff too.

He was again the best he has been for a long while. No NG tube and very chirpy, actively watching the world and participating. The other times he can be a bit grumpy but this could be tiredness.

The day was full of ups and downs for us. As we approach departure it means that some of the staff will not be on until after we have gone, meaning they will not see Fred again. This makes things difficult for all, but is inevitable. I had a long chat with Heidi this morning and Fred was happy to dish cuddles out in the early morning. We shall miss our long chats whilst she does Fred’s obs. and used to happily feed him by his bottle when he was admitted at about 16 weeks old, once he had come up from PICU. Fred obliges by being his normal self.

In the morning we get Sam the playgirl in and we try out various methods of taking a foot print in plaster of paris. Our first attempts at plaster on playdough almost work and so we try again. During the process we are distracted by one of the alarms going off on the pump, and by the time we carefully press Fred’s foot into the stuff, it is rock-hard.

We then discuss an alternative and use dampened sand in a try and try and make a positive print. He does it well, and Sam manages to pour the plaster in the tray. Tomorrow it will be unveiled and hopefully will be another memento of Fred’s hands and feet.

He is still quite sleepy but we have a coffee with Sheena across the road at lunchtime which was nice. It was a lovely hot day and Fred sat in the heat quite happily. We watched the BRI be evacuated as usual through the fire alarms going off.

After that we went into town to get some stuff before returning to the hospital for some late lunch.

We later learn that Fred may not be transferred to Exeter on Monday and it could not be Tuesday. At first this does not appear to be a problem, but we have been delayed once from Friday. It will 10 days since we were told he only has a short time left, and we are losing time rapidly. What if there is another delay or a bed is lost at Exeter?

I had a chat with Helen, one of the CLIC Team at the R D & E and she explained the situation. As Fred id norovirus positive still he will be barrier nursed in isolation. She explains that we will be able to come and go and have visitors. We discussed sleeping arrangement and touch on the subject of coming home with him. I think once we are there we will be able to explore things further.

However we try and make the point that time literally is running out for our son and we really want to get him back into Devon and not to languish here. He is fairly “low maintenance” from a nurse point of view I think, but may be wrong. We will have to see anyway.

At the end of the day Fred goes down to meet young Ellie. She is just over 21 months and is looking stunning in her flowery summer dress and short blonde hair. Their eyes meet in reception and a look a terror comes over Fred’s face. Remember he has not really met other miniature humans and being this close to one who is equally curious is a bit off putting for him.

After a few seconds though, I am sure their love grows a bit, and they peer at each other. Before long Fred is being clambered over by young Ellie, and a few kisses are planted although Fred is still restrained by his straps in the chair. They seem to be comfortable with each other after a while and we are pleased that Fred has met this “old flame.” He first met her in CLIC House in August or September last year and Ellie took an interest in him then. She used to pop into the flat to find him in his armchair and give him a kiss goodnight. She is very gentle with other little ones and really is very nice to him. I shall post some photographs a bit later on.

I think each day will become a mixture of extremes from now on, as it very easy to forget that Fred is so ill. He looks perfect, and behaves like a little one year old. I put this down to the massive reduction in the drugs he has been having, and him being able to feel normal for a bit. Then you remember where we are heading, and it spoils those moments a little.

Day 289 (Wed 18 Apr)(Day Plus 64)Thu, 04/19/2007 - 07:09 — endc011
Fred had a very settled night with Rachel and this continued through the day. He is getting the right balance of Oramorph and other pain relief which allows him to enjoy what’s going on, and for us to enjoy him. He sleeps happily too which is a real blessing for us all given his recent discomfort.

Today was a lovely day for us as we decided to have Fred christened at very short notice after having a conversation with the hospital chaplain. We have seen him a few times over the last few days and his team are regular visitors to each ward in the hospital. No matter what your belief is they come along and have a chat if you wish. After nine months they are regulars to see Fred and us, and are lovely friendly people to talk to about various things, or just gossip. During one of the recent conversations we raised the query of having Fred baptised and learnt it could be done instantly, in the room, or in the Prayer Room on Level 4 whenever we want.

We decided to just do it without any planning at all and had it this afternoon at 1500h in the Prayer Room. By not planning it turned out very well actually as a number of coincidences made it a lovely day. Our friend Frances was not working today and was due a visit, and so she is now Frederick’s godmother. At about 1430h my brother, Duncan, rang to say he was on the way back from Birmingham and may do a surprise visit at about 1515h. As Dunc did not know about the event I mentioned it to him. He put his foot down and eventually arrived just after 1500h, a bit sweaty and out of breath after having to run down the road to the hospital. Duncan is now a godfather.

Also present were Rachel his nurse for today which was another good thing. Rachel has been looking after him after all these months and we enjoy our banter with her and she has been really lovely. By chance the chaplain was talking to Julia (the music therapist) and she thought we might like some music….. We had some guitar plus a bit of singing, followed by a tune on the recorder.

It only took 20 minutes or so, but was a truly wonderful experience and not the situation I was dreading as I thought it would be really difficult for Rachel and especially I. By having family and friends around us at that time made it so special for us. Fred was happy with it all too. When the water was dribbled over his head and ran down his face I thought he would open his mouth to pinch a bit of water as it went by, as he has just started taking water again happily.

Afterwards we had some tea brought into Fred’s room afterwards which was a nice gesture by Sheena the ward clerk. After that one of the children’s grandparents (Lucie) came in with some Marks and Spencers cakes and savouries which was another very touching gesture. Our cobbled together ceremony had turned into a perfect event and I only had a pair of wet eyes for a minute.

We had planned to have Fred christened last year, probably in Chagford and around September but events took us by surprise. We did not really think seriously about this until the last day or so, as time is running out. There are some things you think you can put off until tomorrow….

I should have put some photographs on by the time you read this.

Wayne came along to see us at about 1730h or so and that was lovely to see him. He was coming back from Cromer so thought he would see the little fella. I took him up to the house to see our “pad” and he bumped into a few of the residents. He very kindly took a few of Fred’s toys back home as we will be heading back on Monday and space will be limited.

Today Fred has also looked the best he has for a long while, and has felt good too. No NG tubes either means he looks his beautiful self, and his hair is coming back to a fluffy down and is nice and dark.

David Gate visited today and we had a nice long chat. He said his goodbyes to Fred (as he slept oblivious) and I thanked him for coming.

At the moment Fred is fast asleep and snoring. I am doing the ‘blog and will get my last kebab as again I have not prepared myself for what to eat. I looked in a couple of the photographs and think I may be getting a more porky….

All of the messages we have received either as comments on the blog, by email, by text or by card are appreciated by us, and we really do mean that. There is quite a number sometimes and we might find it difficult to say “thank you” properly. I usually try to send a response every now and then but may not be able to this time, so bear with us. As I say we do love the comments from everyone. I also believe that each of the other ‘blog followers secretly look forward to the comments more than my occasional inane ramblings sometimes.

It is the end of a good day really.

Day 288 (Tue 17 Apr)(Day Plus 63)Wed, 04/18/2007 - 06:21 — endc011
At times, Fred’s discomfort means he is unsettled for periods of time and this usually happens during the night. He gets his pain relief in the form of Oramorph but this does not always synchronise with his other drugs. It has been one of our concerns for a couple of weeks now that Fred should be receiving slightly more than adequate relief as you will recall, and it is absolutely heartbreaking to see your son in apparent agony for short bursts of time without any immediate fix.

I wake up to Rachel coming into the room and peering at me. It is 0845h and I have lost track of time once again and flop out of bed.

Today we spent quite a while discussing with nurses and doctors what will happen to Fred over the next few weeks depending on the state of his disease. As we said in Saturdays ‘blog it is now only a matter of a couple of weeks, maybe more, before he goes. He went to theatre this morning to have some spinal fluid drained which should alleviate some of the pressure causing him discomfort at the moment. They also did some more tests on the CSF to see how it is developing. We learnt the results later and they confirmed the leukaemic cell count had increased since Friday suggesting the disease is advancing. I had naively hoped they would say that there had been an error in the tests and Fred was all clear after all. But that would have been a silly dream really. It means it is increasing and they give him some Methotrexate which will hopefully control or subdue it, plus they plan to give him some Vincristine later, maybe Friday.

As we wander around doing our every day things on the ward, I catch snippets of conversations and telephone calls as the various staff investigate what terminal care Fred can have at Exeter or possibly at home. It is a horribly strange situation to be in, relying on these people to co-ordinate his future, though comforting in a way that these people (whom we have known for nine months) are doing it for Fred’s welfare and wellbeing.

We do not know what is required, and at this stage do not know what is on offer for us and we will learn as we go along.

He goes down to theatre mid-morning and comes back fast asleep on the trolley. He looks very peaceful and I think this is the penultimate time he will travel this well trodden route. We have reached a point where invasive surgery is now being questioned by us, as we want to really let him rest now, but I think these procedures today will give us an idea as to how long things will take.

He is quite jolly after and today we have planned to take some prints of Fred’s little hands and feet. I have got two blank canvasses and have liaised with Sam, the play girl. She has got her poster paints out and we choose a design and the colours. Fred is plonked on the floor on a blanket and he finds the whole thing very amusing.

Sam paints his hands and feet in turn and we get the canvasses down gradually. The larger canvass is one of Rachel and my hands in each corner, with Fred’s touching ours in the middle. They look pretty good to me and I will do a bit of subtle sign writing on them in a corner I think. Most are perfect prints but Fred managed to squish his hand, or try and slip a foot away, making the print a bit more “alive.” They look good and I hope to be able to get some Plaster of Paris tomorrow and make some imprints of either his hands or feet, or perhaps both.

Later in the afternoon we had a meeting with Kate, the ward sister, and the CLIC social worker to discuss Fred’s future in more detail. We have some options and it was initially Friday we were heading back to Exeter, but this is unlikely now. Unfortunately not all areas are geared up for terminal care, especially of someone Fred’s age and the anticipated care he will need when the time comes. They are concerned that we might find the level of care different to what we have here and what we expect. Here in Bristol is a regional centre, receiving cases from all over the world and I suppose is funded accordingly. Other hospitals do not have this expertise readily available because Bristol has the staff and resources instead.
It looks like bringing Fred home is not an option for us as there simply is not the medical back up available in Torbay. If we had problems we would have to head back to Exeter possibly in the dead of night. Weekends and out of hours are not covered by CLIC nurses and only by the local GP I understand which would not be acceptable for us or Fred’s needs. Our aim is for Fred to be looked after and we do not think we could do that properly at our home as the complexities will increase as he deteriorates. There will be times when things will become very difficult and we will need assistance and if it is not there properly we will not be helping Fred.

We were a little disappointed at the level of terminal or palliative care available for Fred at home, as it seems to be geared for adults really. We knew that Fred’s illness meant he needed specialist care from the outset, but would have thought that there would be some form of 24 hour support so he could return to Torbay Hospital or home to make things a little bit easier.

The government is pushing hard for births at home, though dying at home does not seem to be on the agenda. I am not sure which is most important to most people, but for us it would have been nice to be able to flit between Exeter R D & E and home somehow.

It is a heavy subject to keep focused on especially when Fred is lying on his bed next to you as you discuss the various options for him. Today was another difficult day - of new topics for us - and it is becoming more apparent to me that there is more to this whole thing than I realised, and that I will soon be out of my depth…

Day 287 (Mon 16 Apr)(Day Plus 62)Tue, 04/17/2007 - 02:54 — endc011
I had a chat with a couple of parent’s last night and a few glasses of wine on the decking at the house which was good. We all have slightly different situations here but we all fear the worst.

I plodded down the hill and got some breakfast on the way. When I get in Fred is awake and cheery, and Rachel is in the shower.

We get a visit from the hospital chaplain and chat about a few things which was good.

He is due to go to theatre later today hopefully in order to have a LP and have a dose of Methotrexate intrathecally. This will hopefully ease any irritation on the brain and the little bit of chemotherapy will hopefully knock a few leukaemic cells out.

We have today started to think about Fred’s return to Devon and it looks like the R D and E Exeter is our destination in the first instance. They have the “Shared Care” link with Bristol and at the time of writing they were willing to accept Fred.

Torbay Hospital does not appear to be suitable for Fred due to his complexities, but we did some research into places like Rowcroft Hospice. Unfortunately they only take adults, or at least people over 16 years of age. We also looked into other hospices for him, but the only one really is the South West Hospice near Barnstaple, which is not really our area.

What we would like is to come back with Fred to home, but it is more complicated than that in practice. CLIC nurses can visit but until we know what medicine and treatment Fred will receive from Exeter it is best to go there first.

There is talk that he will be transferred on Friday all being well and that will be by ambulance. I shall probably follow on afterwards with all our stuff in the car if Rachel is allowed in the ambulance for the journey back. We were not allowed in it on the way up, but there were four staff on board that morning.

Mum and dad visited today and we all enjoyed Fred’s company and hopefully he enjoyed ours too as he was very jolly and had a cuddle with all. We were hoping to get out into town or somewhere to eat although the prospect of theatre prevented that.

Fred got some platelets in as well, again ready for theatre.

Today Fred looks really well as the pain relief has been increased to a more sensible level, and he can concentrate on being our normal Fred. Lots of chuckling from him, and rolling, plus lots of waving his arm. He is still happy to do a “high five” repeatedly and at the moment he is enjoying mum and dads bus ticket which I gave him. He has found it intriguing for the last thirty minutes or so.

He did not get to theatre in the end as he was pushed off the emergency list so will go tomorrow. It is likely he will have an NG tube re-inserted in theatre as well to assist with the safe depositing of his Oramorph. You might recall from a couple of previous ‘blogs theatres do some odd things, and not doing things as requested. The NG tube is a soft flexible tube, about 85cms long that is slipped in the nose and down the throat promptly. To be able to do this, it has a steel cable stiffener in it so it does not crumple up on the way down. Once it is in the stomach (you measure him externally) you take a syringe and draw back the stomach fluids up through the tube with the wire in place. If it tests acid then it is where it should be. Then the stiffener should be able to be pulled out, leaving a much more flexible tube in place that Fred will not notice.

On a few occasions he has come back from theatre with the tube untested and the wire still in, which is uncomfortable for him as it weighs more and swings around his face angering him. This causes annoyance for the nurses too. In the past it means that the tube has to be pulled out by the nurse here on the ward, and reinserted. The idea of it being done in theatre is that he was under the GA.

Anyway, tomorrow will see him go back to theatre (hopefully) and we shall see if they finish off the job properly. Rachel will be seriously seriously annoyed if it comes back as before and made this clear to Charlie, Fred’s nurse for today. She did pass on Mrs Wills’ request by including it to the paperwork that goes to the theatre…… Watch this space, as they say.
Hopefully tomorrow we will be able to sort some more things tomorrow.

Day 286 (Sun 15 Apr)(Day Plus 61)Mon, 04/16/2007 - 04:04 — endc011
Neither of us had much sleep last night as it was so hot and we took it in turns to sleep on the bed. There is a reclining chair which is very good, but not the same as a soft bed.

The same thoughts go around and around in your head and means you cannot sleep anyway properly. When you do, you realise what’s happening and was not a dream that you were having.

Fred gets quite grumpy at times and they explained yesterday that the leukaemic cells in the fluid around the brain were probably causing him irritation and were probably the cause of some of his very subtle changes we saw. In view of this they will increase hi pain relief to keep him comfortable.

When they did the lumbar puncture they would have taken away a certain amount of fluid (thus reducing some of the pressure) which may have explained why yesterday Fred was quite chirpy.

They will think about what to do in detail early next week, but today we have been talking to the staff about the subject and have started to think about and discuss various plans we never dreamt we would have to. We feel very similar to when we first came here in July 2006, when the weather was the same as well. Then, we did not know anything about the disease or what was to happen, but as we got used to things, hope began to give us something to look forward to.

When Frederick relapsed in December, the shock was similar, but we were more prepared in one sense as we felt we would be able to get him back into remission, and then just whizz him into a bone marrow transplant, and that would be his best chance for survival. Many people do not have that chance given to them, and for that we will always be grateful. To run out of time beforehand would have been another thing to fret about.

Yesterday’s news had the same impact as July 2006 but of course this time there is not a protocol of chemotherapy as a safety net, nor a bone marrow transplant in the offing. Fred’s treatment had run its course, and has not succeeded.

We were given realistic statistics that suggested the likelihood of the disease returning within one year was very high, but not a few weeks after the transplant. Once you get past the one year bit it is a milestone and then you think you may have turned the corner. It just indicates how difficult this disease is to treat, and I would describe leukaemia like a “liquid tumour” that spreads everywhere.

We do not know how we will get through the next few weeks as in the past there was always a glimmer of hope there, and now there is none whatsoever.

We have seen a few of the other parents today, with some hearing about Fred and some not. It is a difficult situation in the hospital as well, as I suppose having parents of a relapsed child in their midst does not do the morale of the other parents too much good, so hopefully we shall remain discreet. When I went up to the house I met a few parents and most looked as if they had heard. It’s the same I suppose with any difficult topic, people feel awkward as they do not know what to say; although this time I suspect they can see a part of them in our situation. We certainly felt that pain when some of the other children have passed away here, and you hope that your number is never called in that respect, which of course now it has.

We took Fred out again this afternoon, and though it was not as sunny it was quite humid. He was just in his sweatshirt and bottoms today and nodded off at the beginning so we took him on a new route down Colston Street and down to Broad Quay, through to Welshback where we had some lunch on the pavement. Rachel and I had curried parsnip soup and Fred watched. He is starting to get ticklish now on his feet, and as he was bare foot today he was fair game for tickle-torture. He would giggle until he started to urge, so I stopped.

We gave him an empty bottle to play with and he was content although bits from the trees fell into our soups and drinks. Curried parsnip is rather pleasant, even with furry tree bits.

We walked back toward Broadmead dodging the crowds and arrived back at the hospital all worn out. Fred had remained alert all the way through chewing on his dummy and waving occasionally. Once back in the room he gets put on the bed where he falls asleep where he was lain, and snores and gurgles loudly.

I am back at the house tonight and we will resume swapping over each night I think.

I put the washing in the machine and left it to go through for an hour. When I returned I found the water still in the machine with the clothes bobbing about. I poked and prodded the machine, and hooked out some clothes with a wooden coat hanger but was a bit stuck really. I tried to reset the machine but nothing really happened.

I left it unattended and spoke to Lucy who knew about these things, and she came to assist as she thought someone had paused it inadvertently. When I came back I found that Katherine had gone to the machine in our absence, and without looking tipped all her smalls into the drum full of water just as we arrived. There followed a few minutes of fishing out her pink thongs and the like from our washing, and then we re-started the machine successfully.

Day 285 (Sat 14 Apr)(Day Plus 60)Sun, 04/15/2007 - 17:22 — endc011
Today (Saturday) began as one of the best we have had for a while as the sun was really shining and Fred was taken off the pumps for around four hours which enabled Rachel, June, and I to go out with Fred. We wanted to keep away from the hoards so walked up the road to the Royal Fort park where Fred has been the last couple of outings.

He managed to lie on the grass, on a blanket for a while, before grumbling and spent a while sat on laps watching the world go by. Once back in his pram he nodded off in the sun to the sound of blackbirds (or robins) singing overhead in the trees.

We headed back via the house, where we had a cup of tea, and Fred sat in the back garden for a bit, though it was just too hot. He sat in a high chair for the first time ever in the kitchen too, playing with keys and my phone.

We came back slowly and he became the jolliest he has for a while, and was very animated and smiley. June headed off to the bus station at around 1730h.



At 2000h Drs Michelle and Sam came in, plus one of the nurses Nicky, with the results of yesterday’s tests and gave us the news we had all been dreading to hear. The leukaemia has returned in his marrow significantly and the disease has now spread into Fred’s spinal and brain fluids (the CSF) as well. In short there is nothing further that can be done for Fred now really, other than making him comfortable and our time left with him is really only a few weeks sadly.

He will have become resistant to many of the first, and second choice drugs and the fact that the leukaemia has returned so aggressively is an indicator that it has taken hold. Plus the body cannot tolerate high doses of these chemotherapy drugs, and Fred has been on a whole range for the last nine months or so.

In the next few days we will know more as to how Fred will be continue to be treated and where, with us all hoping he can be at a more local hospital to home, at least initially, though our main aim really is to bring Fred home with us, where he belongs.

There is not much for us to say now. Fred seems very comfortable at the time of drafting this (2315h) and is fast asleep, in a sleep suit, lying on his side looking very relaxed. It is an exceptionally hot night, but both of us are here in the hospital tonight.



Tim and Rachel

Day 284 (Fri 13 Apr)(Day Plus 59)Sat, 04/14/2007 - 03:11 — endc011
Fred is due in theatre today though we do not the time until later in the day. He is NBM of course anyway but does not get his few mls of milk on the spoon.

He had another music lesson today and conducted rather than danced along this time. He enjoyed it very much and is very alert again.

His stomach is still causing him problems, and hopefully the investigations can reveal what is the problem.

The rest of his day is spent dozing and playing with Rachel and June.

I head back in the afternoon after doing my various chores. Today I received a cheque from the Royal Antedeluvian Order of Buffaloes, St Michaels Lodge in Paignton. They had heard about Fred locally and decided to raise some funds which was great, and I suppose what local charity support is really about. I added the amount to the donations I was sending to CLIC Sargent and they will be just over £500.00 when they receive the cheques.

I was going to pick up my new car battery today but it had not arrived. There is not any hurry this week but I will cancel the SORN shortly and re-license it in May. I posted my cheques did various admin things at home like sorting the bills out.

I visited Dawn and collected some stuff, with one being a present for Fred from Emily. I planned to give him it after his return from theatre.

After lunch at mum and dads I head back and arrive to find Fred had gone down to theatre at 1545h. He is due to have a BMA and LP, along with an oesophagogastroduodenoscopy, which is a camera popped down all the way as far it will go, I think. He also gets a proctoscopy which is coming from the other end so to speak. They planned to take some samples as they went and took of biopsies of anything that looked worthy of testing. We will have to wait until Monday at the earliest we are told for the results.

Fred emerges 1 ¾ hours later, looking very perky and not like the last time he had a GA. He grumbled a bit and we were told he might be a bit “windy” for a while as I think they inflate wherever they are going beforehand with a bit of air. His oxygen saturation is fine but may dip overnight depending on his position whilst asleep.

He is quite settled the rest of the afternoon and I will be staying with Fred tonight. As I have not thought about food I have decided to pop to the fish and chip shop again. Not healthy I know but probably only a bit worse than some of the ready meals we have to eat sometimes. Possibly.

Day 283 (Thu 12 Apr)(Day Plus 58)Fri, 04/13/2007 - 04:22 — endc011
Today I had a bit of lie in which was nice.

I wandered into town to get some stuff, and later went to get a new battery for my car, as it has given up doing what it does best. My car has been off the road since September to save a bit of money but I need to get it back on the road really.

I toured the battery shops with my dad and managed to rustle one up for a reasonable sum.

I spoke to Rachel a few times today. The weather is good in Bristol and they managed to take Fred to the park, which I went to the other day. He was wide-awake and thoroughly enjoyed the fresh air as always.

He was waving at people in the end and when they returned he had a nap.

This was followed by a session on the floor and he enjoyed that too. He had a few more different toys from the play department put before him and he managed how best to tackle those and knock them down. One of the gifts he had from the ward on his birthday was a truck which makes a lot of noise and he managed to keep the din going by repeatedly banging the head of the driver of the lorry. Rachel sent me a photo of him chewing his toes too.

He went for an MRI scan today on his head, over at the BRI and results will not be known for I do not know how long. We are anxious to know the results as we never got the results of the first one he had in early August. Earlier ‘blogs referred to us chasing the results, and it got a bit embarrassing in the end asking for them. Events were overtaken when the second MRI revealed no problems so we did not pursue that. Hopefully these tests will reveal everything is OK.

Rachel signed the consent forms for a BMA and LP tomorrow. We also hope they will take a look at the problem tooth too at this time as we do not want him to have another GA later without real need. He has had a lot of GA’s in the time he has been at the hospital and they are not the sort of things you want too often.

Last time he had a GA he encountered some serious respiratory problems which took a few weeks to resolve, and was on oxygen for several days.

I sent off some donations today to CLIC Sargent following the Torbay Council football match. There was also some from others attached to that. I looked back at the money that friends, family and colleagues have raised, plus a few strangers. To date we have raised a total of £4363.00 for CLIC Sargent, Ward 34 and the BMT Ward. These monies will go where it is needed rather than the corporate pot and certainly helps those that follow behind us. Thank you to all who have contributed, either financially or by taking part in helping to raise that amount. I am certainly happier now giving money to charities where I am confident that it will be used to the best advantage.

Also, the people who spend the money are genuinely grateful at all they receive as they only have limited budgets for many things and it enable them to buy more of certain items, or things of a better specification. Once I get all my receipts in order I shall post them on the ‘blog. Some however were merely passed on by us (the donations from the news agency and one of the daily newspapers) so I will chase for some form of a receipt.

Day 282 (Wed 11 Apr)(Day Plus 57)Thu, 04/12/2007 - 18:45 — endc011
Fred had another torturous night in parts, where the pain relief did not seem to have effect. It was intense at times, but subsided irregularly and he kipped as did I, when we could.

When the next shift came on I needed some direction as to what was next in pain relief as Oramorph only seemed to work at short periods of time.

He slept well early morning, and I gathered my stuff together.

Rachel and June arrived and we swapped seats for me to head back.

I went off in search of the medicine dispensing soother in Taunton and met up with Frances for a bit in the town at lunchtime. No luck there, so headed back down the M5 intending to look in Torquay or Paignton.

On the way I get a call from Rachel to say that some blood results have come back, after being taken before the bank holiday break. These are peripheral bloods, taken from Fred, and have showed a “rogue” cell in the laboratory. This is not what we wanted to hear, but its identity is not known at the moment, or that is what we are told.

The words “rogue cell” are very worrying indeed and mean that we have to wait until Fridays BMA to have a clue what it may be. Neither of us know what it means, so we will have to worry until then. I wonder whether I should turn around and come back, but there is not much I can do until we know the results of the BMA. Again an appeal for thinking about Fred please?

Heading back into the Bay I see a large black cloud coming from the beach and go and poke my nose in. It is a rubber dinghy on the beach that has caught alight somehow, and was just being put out by the fire service when I arrived. There was nothing at all left of it on the beach other than a few smouldering bits.

I searched Torquay and Paignton for the medicine dummy and eventually locate the one I wanted in a chemists in Paignton. It was the one advertised on line at Mothercare and was £1.50 cheaper too. I should have bought the lot and sold them on Ebay. This is one of the oldest chemists in Paignton so goes to show how useful these little places are, compared with the high street retailers. When I was a kid we used to make fireworks and bangers and bombs to set off down the beach. We used to visit the chemists to buy our stock, which meant one had to go in and ask for potassium nitrate, or sulphur. These two combinations would prompt the staff to ask the elderly pharmacist to peer around the screen at us, looking over his half moon glasses.

The staff would come back and ask what we wanted it for, and we would refer to a school experiment. Most times we are given the stuff and off we went to get some copper pipes. If the pharmacist suggested we come back in half an hour we never did as we always thought the police might have been lying in wait. No damage or injury was ever caused to anyone or anything.

I met up with Wayne in the evening and headed to the Embassy Tavern for a starter of whitebait, followed by a fat steak, which was very good as usual.

Then onto the Wetherspoons in Paignton for a drink. Whilst in there a couple of drunks were starting to cause problems, though were tolerated for a bit. After being declined drinks for the second or third time they became abusive, and the police arrived to shuffle them out. All was going well until outside the pub they decided to resist being moved on, and a large bang against the window signified at least one detained.

A peer out of the window confirmed the second person detained also with his late night Lidl’s bargains strewn across the pavement and road. Both were face down on the pavement and resulted in most of the pub up against the window seeing what was going on, and chuckling at the drunks plight.

They disappeared to the hallowed, but BO-smelling portals, of Torquay Custody and we all carried on regardless.

I had a text from Rachel to say Fred had been out in his pram today again, up to Clifton Village, and enjoyed very minute of it. He has, since when I last saw him, pulled his NG out by himself and is getting meds by syringe through his dummy.

He is also starting to take a few mls of milk by the spoon. This washes his mouth out a bit and encourages him to take some mouthwash too.

Day 281 (Tue 10 Apr)(Day Plus 56)Wed, 04/11/2007 - 03:11 — endc011
Last night I said I would get some fish and chips from up the road, as they to date have been really good. Generally cooked to order it is in great batter, ‘though I am a fan of “old” chips really rather than freshly fried ones. The only few words I have ever spoken to the man is obviously “cod and chips please,” and in answer to his inevitable question as to salt and vinegar, “lots on both please.”

I normally waved at him regularly when we were up at CLIC House as we had to pass his place each time. Also I now use that route to take a short cut through to Somerfields so, again, usually give a nod or wave if he is looking up from his fryer. Yesterday he finally spoke to me and said that it must be time for us to go back soon. I replied that it was…. but how did he know we did not live or work around here? He tapped his nose and said that he knew we were staying at the hospital and remembered we came in the middle of last summer. This intrigued me, as we only just pass by his shop window. He went on to say that I looked like the “rest of them” that come from the hospital. We had a chat and he obviously gets to know who works at the hospital and those that are staying there. Very observant I thought and I did not know that we smelt of D1 disinfectant. Must also be the look we have and the clutching of bags of washing which is spilling out.

Poor old Fred. His problem with severe pains continue and last night they seemed to have increased somewhat. He gets his regular pain relief but this does not seem to cover it really. He can fall asleep but is woken more frequently with a start and takes longer for the pain to subside.

Before midnight he was seen by one of the doctors who thought it would be a good idea to put his NG back in, so as to have it on free drainage and anything collecting in his stomach can come out up the tube, into the bile bag. This means that the NG tube acts like a chimney and any stuff in his stomach finds its way out up the tube into the bile bag. It means it does not build up in his stomach and cause him irritation.

Before he can have the tube passed down though he needs some platelets and they go in just before midnight. These will help his blood clot if the tube scratches anything on the way down and he was due some anyway. He gets some pain relief just before this and is soon settled by 0100h when they come in to do the NG tube. I am never a fan of this, but Alice and Emma do the deed whilst I have a quick coffee elsewhere.

When I get back he has a bloody nose which is inevitable really and looks a bit battered. A quick wipe over and some morphine down the tube sees him settle for the night.

In the morning he is quite chirpy and a bit crusty on the face where he has been wiping his nose. He has been fidgeting with the new tube and manages to whip it out whilst I am not looking. I have some meds lined up for him and he is due some Oramorph again too.

This means another needs to go down this morning which hopefully will teach Fred not to tinker with things that do not concern him. Charlie pops it down as I hold his arms. If the tube goes down quickly I am OK, which it does. Once it is past the back of his throat he is generally compliant.

Usually first thing in the morning is the best time to get the suction going, and it is actually quite therapeutic really. Maybe not for him directly, but for me it is quite satisfying getting the tube carefully located on a dangly bit of dried phlegm, and sucking it out without touching the sides of his mouth. As he is usually resisting by thrashing his head about you need at least two of you really.

The tube is 25cms long and about 5mm in diameter and is rigid looking a bit like one of those old water dispensers that you have in a mouse or hamster cage, but is bigger. It is unpleasantly known as a “Yankauer” sucker and it is connected to the suction valve. Interestingly (or not) it gets its name from its creator - Sidney Yankauer - an American surgeon who died in 1932 aged 60.

Turn up the pressure to about 15 kPa (which is just over 2 psi) and wave the tube about in his mouth. Once you have hovered up a rubbery end, you can coax it gently until it rushes off up the tube to a tub on the wall. Very satisfying for all.

He will be back on his 18 hour bags of TPN again today I learn which is good. Sometime this week he will go to theatre and have his BMA and a scope poked down to have a look at what is going on in his stomach. That will be under GA, so hopefully we will not have a repeat of the last time Fred went to theatre, and came back worse than he did before he went in. Again, as I have said we will have to await the results of the BMA to see what is happening. Fingers crossed.

Once his pain is relieved he catches up on his lost sleep which is good for him.

Once he is disconnected from the pumps he is dressed in his tank top and trousers plus his new training shoes. He is planted in his pram, and after a few problems we head out into the bright sunshine. He blinks a lot a first but is soon wide eyed again by the traffic and I turn up the hill toward the university.

The flag stones on the pavement joggle him a bit, and we have a few retching points but all OK. Once in the gardens Fred takes in the blackbird songs just like on his musical light. With the sun on him he starts to nod off gradually keeping half an eye open on what I am doing with the camera. Next we head down the steep grass bank to the small ponds where there are some tadpoles by the look of it, as some of the kids are tormenting them with sticks.

A few photos are taken of him, though I missed the one of the passing bee and Fred spying each other. The insect was a bit wobbly and I had to shoo it on its way as a bee sting for Fred would probably end in disaster.

Once back Fred fell asleep immediately without any grumbling, just slept where I put him.

I weigh him again today and he is 9.8kg which is up a bit really though they have taken him off his Frusemide, the diuretic.

Rachel and June will be back tomorrow and I will head back all being well.

Day 280 (Mon 09 Apr)(Day Plus 55)Tue, 04/10/2007 - 01:52 — endc011
Yesterday, we had been here for nine months in total.

Fred is a rather unsettled today but sleeps well in between his bouts of grumpiness. The results for his ear swab have not come back yet, but this is probably die to the labs closing down for the weekend.

He is still getting these bouts of severe stomach pains, resulting in him crashing about the cot with some force. He is getting various painkillers regularly but these do not seem to deal with the sudden sharp pains. He is prescribed some oral morphine which hopefully will let him have a deeper nap and sit on the pain if possible.

He has not eaten anything for a while now as his TPN equates to 100% of his requirements but this still must make the stomach feel empty and therefore him feel hungry.

He gets a blood transfusion in the afternoon, and will get a platelet transfusion soon after.

I wander into town to get some stuff and go in search of a “medicine dispensing pacifier” which is basically a dummy with a reservoir, and a screw cap. It allows you to put liquid oral medicines in and the baby chomps on it, taking the drug. As Fred does not have his NG at the moment we squirt a bit into his mouth or put it on the dummy which is quite time consuming. I went into Boots and Superdrug but they did not have any. I later track one down to Mothercare for £3.99 and ask Rachel to pick one up from Taunton on the way through on Wednesday when she returns.

I also needed to pop into a couple of ‘phone shops, as I need to change my 'phone. I went into that beastly high street store - Carphone Warehouse - to pick there brains and have their brochures, where I was collared by a very polite sales operative. I asked her if she could give me the date my contract was to expire with them. She looked at the records on the computer screen (it does not tell her I am a disgruntled customer looking to defect as soon as I am able) and gushed “you are due for an upgrade on your phone!!” I ask when this can happen and she proclaims “now!” She seemed more excited than I did at the time, tapping enthusiastically to see what other rewards can tempt me, although she could not find out the answer to my original question - but I knew the rough date anyway but just wanted to check.

I was more than a little bit interested to see what she would offer me and she explained the overly complex procedure for new tariffs nowadays i.e. jump and down three times in Month 5, wave your hands about excitedly and they will send you a chequeback offer of £50.00 etc etc provided you do it on the exact day/hour it is due for redemption otherwise you lose out. If you use 500 minutes to a number with the digit 1 in it they also give you a bundle of 2000 text messages solely for use to Darkest Peru though…….. and so it went on.

I was contemplating her offer, comparing it to a very similar (but much better one up the road) when the spikey haired Manager came rushing over looking very very upset and concerned indeed. I assume his hair was styled like that by him purposely; otherwise it may have been due to static build-up from his glossy nylon suit. Having apparently ‘overheard’ our conversation he sighed wearily shaking his head, “Chloe, that offer ends this afternoon - didn’t anyone tell you?” She looks as shocked as him now, covering her mouth and whines “Oh no. Right” and looked at me ruefully as if to say “silly me!”

She carried on writing the details of the offer (that ends today) on the brochure I am waiting to make off with, as she knows I am only browsing and am looking at changing in the next few weeks and not immediately. Chewing her pen pensively, and on arriving at her cunning plan, she purrs “is there any reason why you cannot sign up today?” I have seen these retail-monkeys in action before and had great delight in responding that I couldn’t possibly now, because her manager/colleague had just insulted my intelligence with the oldest and naffest sales ploy in the book, and I wasn’t having any of it thanks. I explained there was a similar and better offer in the Orange shop up the road that did not have a time limit on it in any case, and I trooped off with brochure firmly in my paw.

Since the company bungled my broadband application last year and left me out of pocket (and bitter) I occasionally pop into these stores and spend time with the staff, just chatting about new tariffs and contracts, as I have no intention of doing business with them again. As the staff members seem to change every week I am greeted with open arms - like a dear old friend - as they do not recognise me. Some of my friends say I am becoming a GOM. This is Grumpy Old Man I think and quite right too.

Fred is on his 48 hour bag of TPN so is unable to promenade with me today. As he is sleeping I do pop out a couple of times which is good just locally to see what is happening. I see the forecast is looking good until Friday and I hope we will be able to go out for some air.

I have some tagliatelli in the ‘fridge here, plus some garlic bread which I should have really. However in the corridor earlier I smelt fish and chips wafting about so I may well sneak up to the Kingsdown Fish Bar for a mighty portion of cod and chips. If you are unlucky, he will heap the largest pile of great chips on, which you end up having to eat anyway. If you are really unlucky, near closing time, he will give you extra bits of fish too. At the end I usually feel too full and queasy.

Day 279 (Sun 08 Apr)(Day Plus 54)Mon, 04/09/2007 - 04:43 — endc011
The Easter Bunny came during the early hours and neither of us heard as we were fast asleep. We both did quite well in respect of sleep and Fred seemed quite happy on waking. He is more entertainable now and enjoys silly things, all which make him laugh. Monkey noises, the Benny Hill theme and biting both his feet all make him laugh.

His ear problem persists in that there is a bit of clear discharge coming out so it is later checked by the doctors. It might be some of his tears but I doubt it.

When Rachel comes down she brings a few more eggs that have been given by CLIC. He has a few here, with a few more in Chagford where Fred has one a few draw prizes in the form of eggs.

We are destined to stay the day inside and peer out of the window. It is quite quiet outside and looks good to wander around in. His TPN is due to finish a long way off.

After some thought elsewhere, the TPN is disconnected and we are told we may be able to escape the place for a couple of hours which is really good. Great thinking girls!

Fred is limbering up when his ears get inspected and it looks like he might have something going on in there. They will take a swab of the stuff to see what it is but it is bunged up with wax. And lots of it.

Fred senses something is up and gets all rather boisterous, as do we. After a few minutes we are off down the corridor with Fred’s hat at a jaunty angle, out into the sunshine.

We wander up to Castle Park and sit on the grass for a bit by the daffodils. Nearby is a Peter Randall Page water sculpture which we first saw in October last year. He was fast asleep by the time he was passing it.

We moved on to the circus on the green, “Sequins and Sawdust” and listened to the band playing inside, and to the occasional cheer from the crowd. A stroll along Wine Street/Corn Street and down back to the hospital and Fred remained fast asleep but happy in his cart. He would wake occasionally and crane his head about to see who was about and then drift off again.

Once back on W34 he gets some potassium as he low and is then hooked up again to the pumps for many hours. He certainly enjoys the change and the fresh air and a bit of sunlight on him must help his vitamin D or something.

I see another CLIC House veteran return today and they used to share the annexe with us from July to October time, and we had a quick chat. It was good to see them too.

I left Fred a bit “noisy baby” as he was obviously wanting to go out again but another 48 hour bag of TPN was being dragged into the ward I suspect at that time. It would be nice for him and I to go out tomorrow if the weather is going to break soon, but at least we had today.

Day 278 (Fri 07 Apr)(Day Plus 53)Sun, 04/08/2007 - 03:23 — endc011
When I get back down Fred is fast asleep and hopefully dressed to go out later on.

The sun is shining this morning too and I walk under the arch to take a look at the university gardens next the house.

After breakfast we wonder what time we can head out with Fred. Unfortunately some clown has arranged for Fred to have a 48 hour bag of TPN connected up which means he cannot come off until sometime on Monday. He normally gets a 18 hour bag, and for the first time in four or five months that little Fred can come out with us, his chances are scuppered and we have to stay in here. To make matters worse his NG tube came out last night, and it has not been replaced which is good. He now looks like a normal little boy as for more than ¾ of his life he has the tube coming out of his nose, untidily stuck with tape to his cheek. Again we are unable to take him out “tubeless” now and it would have been the first time that people would not have stared at him.

No one was sure why the 48 hour bag appeared, but I guess it is because of the weekend. Anyhow, it has managed to spoil what we thought might be a weekend for Fred to stopped being bored and see the outside world. His frustration and anger must be related in some way to being stuck in bed for so long. He really really enjoyed his little jaunt yesterday, as did we. Perhaps if the “decision makers” spent nine months in hospital they would think at how much opportunities like going out can help us maintain sanity.

We leave Fred asleep in his cot and wander into town to see what is going on down there. It is fairly crowded and we browse for some clothes for him.

He is asleep when we get back, sleeping at a crooked angle again. He really does insist of lying all twisted up, with his arms jammed up behind him. He then wakes and cries out loud when the arms have gone to sleep and they do not work.

Not much else happens in our day and I am off to get my tea in a moment. Its spaghetti Bolognese and a pile of garlic bread for me.

I have to keep putting a bit of his oral meds on his dummy and squish a bit into this mouth as by 2030h he is still NG tubeless which is great for him and us.

Day 277 (Fri 06 Apr)(Day Plus 52)Sat, 04/07/2007 - 07:31 — endc011
I had a bath this morning and decided that I would head back to Bristol as I was missing Rachel and Fred, and had done the bits I wanted to do. As it is a Bank Holiday weekend we might as well try and be a normal family.

I was going to turn up unannounced but chose not to in the end. I visited mum and dad before leaving and headed back along the M5. There had been an accident at J22 on the southbound carriageway earlier in the day, and although it had been cleared for some time, when I passed it was slow moving traffic from J22 back to J19 and beyond.

As I arrived in the hospital I was told that Fred could go out for an hour which was good. It was a complete surprise to us, and I was glad I decided to come back after all.

So at about 1600h Fred was installed into his pram and we headed up the road toward the Triangle and beyond, onto Whiteladies Road. It was a lovely warm day and Fred was wearing his farmer’s style hat and also a new pair of training shoes that Emily got him. It was nice to see him in normal clothes and he appeared to be very interested in what was going on around him.

Things that were close by would make him take a look and he was also very focussed on us too.

Once back he was a bit grumpy which made us think that to lye in a bed may make you bored.

Otherwise it was a lovely day and hopefully we will be able to take him up to the gardens tomorrow if that is possible.

I left Rachel in the hospital and I will be there tomorrow night.

Tonight I ended up chatting for hours with a couple of the parents and so hence the late ‘blog.

Day 276 (Thu 05 Apr)(Day Plus 51)Fri, 04/06/2007 - 03:34 — endc011
I rang Rachel and found that now he has a bit more pain relief he had a more settled night, which was good news. Little grumbles but no real crashing about.

I had a nice soak in the bath this morning and sat down to fill in my job application forms. It needs to be in by tomorrow, although I thought it was the 16th of this month and not the 6th. Hence me coming down to retrieve some of the information I need.

All filled out I went over to my mum and dads for some lunch then went to Exeter with my dad to drop off the forms. It was a nice day and a nice drive. I could see the traffic is getting busier for the bank holiday weekend, and hope I shall miss the bulk of it tomorrow.

Fred has been more settled again today and Rachel and Alice managed to, in a joint effort, extract a lot of gunge from his mouth. It is still the remnants of his mucusitis, and solidifies in his mouth. In the early hours of the 4th I extracted a kidney bean sized piece of gunk from his mouth, which was sent off for analysis. It has pink bits in it again; the last time it went off to Microscopy and they confirmed it was indeed a lump of “tissue” and was a bit of mouth lining coming adrift. It does not mean he has got a bit of mouth lining missing as afterwards if you look his mouth is clear and pink. I suppose it the old bits of mouth coming adrift but can be a choking hazard, so “better out than in.”

The results of the x-ray and echo come back OK and so we just await the BMA and endoscope lark next week. There is a possibility he will join the weekend list for this, if a slot becomes available. The results of the BMA are something we dread as you know. It is horrible to have to wait, as it will confirm whether the transplant is working or whether the leukaemia has come back. I am not sure what, if any, treatment is available if it is not good news. Hopefully we will have good news so an appeal once again for all fingers crossed and prayers please.

The Chimerism tests came back OK the other day too if I did not mention it other ‘blogs.
We also see Helen D yesterday and have a chat with her. Rebekah seems to be doing well which was good to hear and hopefully things will continue to progress. Next time Helen comments on the 'blog hopefully she will give a little round-up of recent events?

I am back tonight catching up on the ‘blog and will make some burgers I think. I have a surplus of beef mince and cheese, plus some veg in the ‘fridge.

I have had another look at the statistics for the ‘blog which grow gradually. To date there have been 69,178 page views since I started, which equates to an average of 247 views each day. I do not think that is me looking 247 times a day. I hope. There may have been a few generated from my letter which was published in The Times on Friday. I was responding to a letter about ‘blogs where the author reckoned ‘blogs were boring things about nothing in particular. I agreed that many are vague ramblings about topics no one was interested in, but referred to our ‘blog and how helpful it was to us. It enables me to record all the silly things, and more serious happening to Fred and allows friends and relatives to keep abreast of his progress without resorting to contacting us.

We are happy for people to contact us about Fred, but some people do not want to bother us, so it is a happy medium really.

I have taken all of the ‘blogs to date and put them back into a Word document, so that I can edit it a bit more. I am currently going through and correcting the errors, and tidying up the text so it is more readable. As I try and type quickly (because often I do not really have time to do this on one go) some of the tenses get muddled, but I would like a better record.

I have also added another photograph of Fred called “Eyebrows Ahoy” as you should be able to detect the first sproutings of eyebrows and some eyelashes which are coming back after they dropped out for a fourth or fifth time. They have previously come back black, mousey brown and a hint of “ginger”, and now appear to be a black-as-coal smudge. They look a bit large to me at the moment. He is also getting a slight velvety down on his head. With a bit of prickle though.

Day 275 (Wed 04 Apr)(Day Plus 50)Fri, 04/06/2007 - 02:59 — endc011
He continues to grumble during the night with these bouts of severe stomach pains which last about 5 minutes, and then he will fall asleep again. I try and restrain him during the event but find I have to let him free, as I am afraid his resistance will break an arm or dislocate a leg.

Trying to change a sloppy nappy at 0300h in the morning is normally easy in that he will remain on his back, and it only takes a few seconds. If we are lucky he will sleep through the whole thing. Once he remained fast asleep and left his legs in the upright position whilst he continued to sleep. They stayed upright for a minute or so. Recently he has fought and twisted and rolled, spreading dung everywhere, and us all getting in a mess. Bless him.

During the night I am half awake and have the curtain around the bed pulled to keep out the light. I am happy to have the dim light on as it helps the staff who are regularly in and out. Otherwise they crash around with torches and we end up waking anyway.

I thought I saw a couple of bright flashes and was puzzled at this, because at 0130h in the morning you do not expect photographers moving around. Anyway, I was tired and nodded off until about 0300h or something like that, when I heard Fred choking. He does this often unfortunately.

I got out of bed and found Charlie dealing with Fred, and he calmed down. In the gloom she asked if I had spotted “the present” but as it was early I admitted I had not. The nurses come in very quietly and often you do not know they are in the room because it is dark. In BMT I used to get out of bed and walk a few paces and nearly step on one that would always crouch by the side of the bed trying the read the volume of drug given on the pumps. I keep asking they wear a bell or a flashing light or something as it is frightening sometimes to find someone hunched up by the side of your bed.

Anyway at the foot of the bed was a photograph of Fred she had taken earlier, with him having carefully placed a dummy on his ear, looking like a huge hearing aid or an earplug. She had come in and seen it, and nipped out to take a picture – hence the flashlight earlier….


He has been fidgeting with his ears recently and this is why he has put it there.

It was a great picture, so I tried to strip the picture off the camera to put it on to Rachel’s lap top, which did not work so I tried various other options. By 0400h I was wide awake, and so in the end we ended up with me taking a picture of the picture on my camera, and then transferring it to the laptop, and then cropping the image. I was wide-awake by then and there was little point of me going back to bed.

I should have put the picture on the Gallery by the time you read this.

He gets some more pain relief during the day and Rachel comes back. Just as she arrives we are advised that he has got a slot for an x-ray and an echo scan of his abdomen. He was due at 1600h that afternoon but I sad he may as well go with Alice, his nurse, whilst I go back to the house with Rachel to get some things. Fred knows the score now and would be happy with Alice, as would we, so he gets plopped into his pram, and off he goes for 30 minutes.

I pack my stuff into the car and we both have some lunch on the way back to the hospital.

We have our lunch in Fred’s room which is quiet and empty without him. The door opens and Fred is wheeled in happily. Apparently he was very good when they did the echo, which he normally is. This is where they use a handheld scanner covered with thick gel and his tummy is scanned. It is the same (or similar to a baby scan) and the images look the same too. It looks uncomfortable because they can be quite firm with the probe and appear to shove it under the bottom of the rib cage to see things.

We will have to await the results of that. He has been having problems with his stomach and this is a way of checking things out. He will also have a BMA next week in theatres and will also have an endoscope down his throat whilst he is under. Again it is not something they do readily but it will enable them to have a look to see what is causing his stomach problems.

Before the transplant we were warned that it would be Fred’s most likely weakness and of course now it appears to be, though more subtle than we envisaged.

I head back again into fine weather and meet up with Hayley in the evening at the Wetherspoons where I tuck into a Surf and Turf which was most excellent.

I get back full and fall asleep without putting the radio on which is unusual.

Day 274 (Tue 03 Apr)(Day Plus 49)Wed, 04/04/2007 - 02:26 — endc011
He was settled most of the night but still occasionally suffered terrible stomach pains. He carries on a few times but generally sleeps well, as do I.

I wander up to the house in the morning to get some stuff and come back via the canteen as I am hungry. This is a different one to the one we normally go, but it has shut early. It advertises as to being open from 0800h to 1400h but does not advertise it shuts at 1100h for an hour. At 1045h all the food has gone and the tills are cashed up.

I get a surprise visit from Frances and she has not seen Fred for quite a while now. She thinks he is a lot bigger than he was and he is a little grumpy. He soon mellows and smiles a bit.

During this time we discuss his general well being and his pain relief and so hopefully he will be able to have some morphine or similar. Previously he has had it on demand, or PCA – patient controlled analgaesia. I would hope that if he gets pain at night, we can give him a blip of pain relief and it work quickly.

We also discuss his mouth which is getting a bit crusty again. I extracted a largish lump of gunge/tissue this morning with the suction device, and he was much happier. However it needs to be kept clear.

As his mouth may be sore still, he gets a gel coating which covers up any exposed nerve endings, and effectively “seals” his mouth lining. Apparently it is very good on the adolescents.

I see Frances off and return to be visited by Hannah the physio. We discuss his sitting up and posture which he is behind on because of his treatment and staying in bed a lot. We try a few things on the floor and find a comfortable position where Hannah’s left leg is a back support for him, and her right leg is a “table” in front of him. He is sandwiched between the two.

This enables him to sit upright with his own support but feel comfortable enough to relax and concentrate on what is going on around him. He can reach out for things that are at his “waist height” and look about. He seems happy with this, and when he gets tired, he can lean back gently and recline.

I scrunch myself down on the floor too, and Fred squeezes in with me. He adjusts himself and seems happy to do so. After a while he reclines to look and talk to me, and starts to drift off gradually.

Eventually he gets back onto his bed and falls asleep.

He also gets 20mls of feed via his NG tube and manages to keep this down, on top of all his other stuff.

He seems happier to sleep on his front now, or mainly his side. It is difficult to keep him on his back as he used to now. This is all OK, until I want to access his nappy.

I shall head back tomorrow as I have some business, and Rachel will take over the reins of keeping Fred under control.

Day 273 (Mon 02 Apr)(Day Plus 48)Tue, 04/03/2007 - 02:40 — endc011
We had a good nights sleep followed by a decent breakfast and got down just after 0900h to find that he had been a bit grumpy in the night at times, but was generally settled.

He did not look too pleased to see us though, and after a few cuddles he was chirpy again. He has retained some fluid overnight as his face is a bit puffy and yesterday he weighed about 9.96.

He gets a splosh of Frusemide which will shift some of the fluid and by 1900h he weighs 9.62 which is an improvement. His mouth is a bit sorer today as his tooth is developing and he has an ulcer on his gum too.

As his nose remains a bit blocked, he is blowing through his mouth a bit so this dries it out and leaves him a bit crusty orally.

He spends quite a while asleep which is good if he is grumbly and now predominantly lies on his side holding onto the bars. He accepts the dummy tentatively though.

My mum and dad visit just after Rachel heads back. They stay for a while and Fred is awake but remains unsettled for them. A couple of weak smiles and he seems to be happy they have visited him.

His CRP has risen again to 41 which is annoying. He has not really been having much milk as they have tested for an intolerance to lactose and we shall find out those results soon. In the meantime he gets his SMA Gold in 10mls, via his NG tube over 30 minutes. This is mixed with Gaviscon to neutralise some of the acid in the stomach I think.

Up to the time of posting the ‘blog Fred has kept it down so far. We really do need him to get feeding properly to be able to move forward a bit more.

One of the medical students comes in to have a look at Fred and we discuss him for a bit. She was born in Torbay Hospital and is currently in her fourth year here. Fred remained asleep through most of it though.

I am settling to watch Coronation Street in a moment.

Day 272 (Sun 01 Apr)(Day Plus 47)Mon, 04/02/2007 - 05:48 — endc011
I awoke this morning with the theme tune of Howard’s Way still ringing in my ears, and so headed across to my mum and dads for some late breakfast and a cup of tea.

I stayed there for a bit and then drove back in nice weather.

When I got in Fred was having some “mouth care” with Rachel and Charlotte, his nurse. He is a bit uncomfortable as his tooth may be playing up, but also he has got some of this rubbery gunge stuck on the top of his mouth again, which is joined to his tongue. It looks like a big sultana and needs to be got at, but he is not having any of it, so he gets a mouth wash with anaesthetic, some water and a bit of Nystatin.

He will suck on a dummy when he wants, though it must be sore as he has rejected a few dummies overnight.

He looks fairly pleased to see me when I come in, and he settles for a bit.

He spends quite a while asleep today and once awake seems alert. Rachel heads up to the house to get the washing going as she is staying again tonight in the hospital. Once she has gone one of the nurses suggest that Fred is OK to get into his pram and have a 5 minute tour of Reception and the bit outside the hospital. He has not seen daylight since the end of November I think, and gets wrapped up good and proper. He has his bumble bee outfit put on him, plus he has mittens for socks.

I cannot get hold of Rachel because she has left her bag and mobile ‘phone in the room and so I seize the opportunity to get going for a few minutes. Charlotte comes down with us and then returns to the ward.

I take a few photographs of him outside the hospital and he is intrigued by the outside world. The “lollipops” outside the hospital are of great interest as is the traffic whizzing by. There is a strong breeze and his eyes water quite a lot. Once he has got used to it he is smiling quite happily.

For some reason Rachel comes in via the main entrance today, as we normally come through A and E on Level 3. I do not see her as I have my back to her talking to Fred. She is mightily surprised that Fred is out of his room, and so that was good.

Once back he gets a hot bath and is rubbed down with towels which he loves. Then is he is liberally dusted with talc and for an extra treat slips into a warmed sleep suit. He is asleep within five minutes.

His weight today is 9.96kg which is good, as he should not be having too much fluid going into him now. Quite a few of the drugs have been stopped and now there are more gaps in his line time. His CRP is now down to 27 when it was 53 the other day and his temperature has remained stable too. He did restart his I.V. Septrin which deals with the possible pneumonia (PCP) problems he had a few weeks ago after coming back from theatre. They never found out what it was as the tests came back negative, but they do think it was, or is, a lung infection of some sorts. Hence the I.V. Septrin re-commencing and this seems to be working anyway.

It is good to see him sleeping so soundly as it must do him good.

I managed to bring a girl back to the house to stay overnight, and we had a nice quiet meal together. Her name is Rachel and I married her a few years ago……. The nurses suggested today that we should let Fred stay with them in hospital tonight as they are relatively quiet on the ward and they are well-staffed, and we should head back to the house and the two of us just be “normal” for a few hours. At first we were reluctant but in reality, if there is a problem there is nothing really we can do. If he is upset no amount of consoling from us helps, and he knows the nurses well anyway.

So we decide to leave him there fast asleep, although he does wake as we are going out of the door. He watches us with one eye open and drifts off again. We are only a five minute dash away and they can contact us if necessary. Most nights recently have seen him sleep well, and with a carefully planned set of drugs overnight he can sleep happily. Hopefully Fred will be able to dwell on his new found independence and think about the big world he looked at this afternoon.

We get back and I have a poke about in the cupboards. We do not have much in and as it is Sunday, the shops are all shut. However I rustle up some pasta with tomatoes, broccoli and peas, with garlic and chilli. Its taste is improved somewhat with lots of cheddar, and this make a nice quick meal. Rachel washes it down with some cider and I drink the last remains of my Admirals Ale which Wayne and Claire bought for me when they visited last in late February.

She gets the washing machines fired up and disappears as I am doing the ‘blog. She returns a while later with a pile of ironing all done.

A bit of television is watched and then my eye lids are as droopy as ever. Whilst Rachel is ironing I ring and speak with one of the nurses who says Fred is fast asleep and has been for a few hours. I forget to tell Rachel and a short while later she speaks to one of the doctors who says Fred is making a protest at the moment as his nappy is being changed, although he has discovered Fred is partial to a head massage.

Rachel has agreed to let me have the radio on tonight in the background.

Day 271 (Sat 31 Mar)(Day Plus 46)Sun, 04/01/2007 - 06:01 — endc011
I rang Rachel a few times during the day and Fred had been sleeping most of the time, but had been a bit grumbly.

He has been dozing in his pram a bit more now but is not tolerating hs feeds as he was.

We await some tests as to whether he has developed a lactose intolerance, which can happen after a bout of chemotherapy, and an extended time without feed conventionally. I do not know how long that takes, but his recent dislike of feed is certainly another setback for the moment.

Tonight I had a chinese with Mark and Amanda, following a visit during the day to see my godson James. He was very active and was extra dribbly, plus covered in crumbs from the box of broken biscuits we shared. James has stopped doing his “Prince Charles” impression, which is sad.

I have not had a chinese for months and months and I had chilli prawns Kung Po which was very good. A few beers and wines accompanied the meal and we watched a few episodes of Howard’s Way. I have not seen this since 1985 but vividly remembered the plot and characters with fondness. I think purchasing a boxed DVD set is in order now.

The last time I watched it properly was in Newcastle 1984 – 1987 when it was first shown on television and when I was a student living with Shaun (blogger married to Victoria and with Devon and Violet.) I was particularly keen to watch some episodes where Jan Howard had a liaison with Claude Dupointe, a fashion designer who wore a funky shirt, the same that I used to wear. It was a limited edition shirt made by Mono given to me by my brother. Happy days!

Day 270 (Fri 30 Mar)(Day Plus 45)Sat, 03/31/2007 - 19:52 — endc011
Fred woke me this morning with a wail, and carried on for an hour with what appeared to be lots of pain in his stomach. He had been settled all night and I woke every two hours to see what he was up to and change his nappy if necessary.

He had painkillers at 0700h and by 0800h he had settled into a deep sleep again. To see him throw himself about his cot in pain is very difficult given he seems to have had a run of happiness recently. He is not happy to be held and gets very angry at intervention, but is soon fast asleep.

I fall asleep until 0930h when I am awoken by Rachel peering round the curtain, saying “helloooo.” Fred remains curled up on his side snoring loudly, and wakes with a start. He takes about a minute to adjust and then starts shouting again. Comforted by mum, he starts to play.

He has not had any fluids by mouth for a day or two and we are worried about his fluid intake. His TPN last night provided him with a top up, and his NG meds were followed by water flushes so he is getting fluids, but not in the way we hoped.

Later in the morning he accepts water by the spoon reluctantly and we still think his tooth may be causing him discomfort. He does drink this little bit of fluid as he used splutter in the early days.

By mid-morning he is “full with beans” and enjoying our company. His alertness is great in that any noise or movement will see him turn toward it and decide whether it is worth continuing to look at. If it is someone coming in through the door he will watch them and wave in his usual manner. If they wave back the whole thing can go indefinitely.

The doctors have a look at him and he continues as the day before.

I head home and check up regularly on his progress.

I do some more batch cooking again and tonight comprises sausages in onion gravy, with cheesy mashed potato; a beef pie with a detachable puff pastry lid; and cottage pies. They all go into the takeaway style foil containers and I then freeze them for use in Bristol. I managed to clear out my mums fridge of vegetables in the process too. One of the potatoes I had here had sprouted a foot long shoot which had made its way through the dresser door into the light.

Day 269 (Thu 29 Mar)(Day Plus 44)Thu, 03/29/2007 - 23:01 — endc011
I get in a bit later than normal this morning as I nodded off in my Dettol bath this morning. I was a bit dozy as I left the television on all night in the room though did not notice it.

Fred had a restful night and only woke a couple of times for a drink. He is still a bit difficult with feeding and drinking and the last day or two has seen him not wanting much. A few days ago he was managing a staggering 350mls of water, milk and cereal, but today has had only about 100mls reluctantly.

This is a worry for us as one of the key things to get you out of here, is him being able to eat for himself, and not rely on the NG tube or TPN. However it is a step in the right direction.

We speak with the doctors who are weaning him off various drugs; the most recent was Defibrotide which prevents VOD. This a nasty thing that involves the liver and the blocking of the small veins in them, and which can be life threatening in a few cases. By him coming off it, it is hopefully another indication that he is heading in the right direction.

We are also told that there is an international shortage of the drug, it occupies about 8 hours of his line time and obviously has a resource impact on the nurses who have to hook him to it. So everyone appears to be a winner.

Fred has also been a bit grumpy recently, although he is not having regular pain relief as he was a few weeks ago. It is clear he is in discomfort and one of his cheeks has been looking a bit flushed of late, as well as slightly swollen.

His nurse decides to take a couple of mouth swabs for analysis and during the battle to keep his arms down and his head still I catch glimpse of a little white peak on his bottom right hand gum. We get the sample but hold him down again to see what it is. It looked like the head of a spot or abscess to me, but it was in view for only a second if that.

His rage and strength is quite spectacular at times, and he certainly knows when it is time to fight his corner. The “spot” is swabbed for analysis and we debate what it could be. Rachel washes her hands thoroughly and pokes a finger into his mouth. He has got two nibblers already on the bottom central and they are quite sharp so one has to be vigilant.

She removes her finger and proudly announces that it is rock hard and bony, so must be another tooth coming along. This would explain (we hope) his grumpiness and lack of interest in food orally, and so the three of us give him a loud cheer, hurrah! He likes this very much and wobbles his head frantically and laughs, slapping the bed with the palm of his hand. Rachel said it was a suspected tooth all along and none of us believed here……

I am getting a taste for the “facts and figures” (or ‘factoids’ as they say on Radio 2) of his treatment as I learn one of the drugs he has everyday - Ambisome - costs £105.00 per dose and he has been having that each day for ages I think.

We celebrated with a drink from the Juice Bar up the road which sadly closes tomorrow. It has been open a year and so we have been customers for the last nine months. The nurses normally order a few for themselves and once we have eight orders we get a 10% discount. Normally the smoothies go down well and give us a small vitamin boost. I shall have to get my juicer up here and run a small outlet from the doorway.

Most of the day he has been sleeping which is good as he is still simmering an infection somewhere. His CRP was 55 yesterday and today it is 53 so no change. His temperature ranges between 37c and 37.8c regularly. It may well have something to do with the pneumonia scare we had the other week, which seemed to have been initially dealt with by one of the antibiotics they stopped. That one has been re-started and hopefully it will help him get rid of it.

Once he has lost his infection then we may be able to head out in the pram for the first time since December. We would head for Clifton Village as the air is cleaner up there.

Day 268 (Wed 28 Mar)(Day Plus 43)Thu, 03/29/2007 - 02:55 — endc011
Both of us arose at about 0500h this morning as we had had a good nights sleep and he wanted to play. In the gloom I can see him ferreting about for things. At that hour and if I am quiet he will ignore me and entertain himself happily. If I sniff, or cough, his head will turn and he will start to get fractious wanting my attention.

By then I am up and potter about, and he will go back to sleep for a bit of a lie-in.

I have a shower and a wash and was going to get some breakfast, but never got around to it.

I started to finish of my Cash Cow today and detailed the nose which I am still not happy with. I wanted more detail on the whole thing and it looks good, but I have never really worked with acrylic paints. Watercolour, gouache, and oils are OK, but acrylic is a bit heavy on a very porous surface. Plus the brushes are £1.99 ones I bought and shed hairs annoyingly.

Anyway, I have nearly finished it and will photograph it when it is ready.

Rachel returned at lunchtime and Fred had a bath. A good splosh about for him and he was dusted down with talc and looked as good as new. He seemed to have enjoyed the event and nodded off again.

The ward is back open again with five beds running and I guess this will fill up over the next day or two.

I popped into town and bought some things but never got around to lunch. I had to look for some false eye lashes for the Cash Cow and nervously asked in Boots. I obviously mumbled as I had to repeat myself, going red in the process and was directed to “Beauty”. I suspected that she suspected…….

I head back to the house and go via Somerfield for some bargains, but do not find any. I get my things and head back.

The house now has wireless broadband which is really good. There are a few people here that use the laptop and wireless and the hospital has one or two laptops for loaning to families. It does enable you to contact the outside world. As we remain barrier nursed we cannot use the Ward 34 resource room where I normally used to do the ‘blog and have no real need now provided I can connect to a stray insecure wireless, or if all else fails use my mobile phone as a modem which is OK.

When I left, Charlie was hanging up his transfusion of platelets and taking down his old bag of blood which went up at 1600h or so. I learnt that the blood transfusion he had today was his 101st unit of blood. That equates to around 13 litres of blood as he does not always take the whole bag. I was once told a unit of blood (however much that actually is in quantity…?) costs the department about £100.00.

Day 267 (Tue 27 Mar)(Day Plus 42)Wed, 03/28/2007 - 01:16 — endc011
His thirst, or hunger continues unabated, which means that once satisfied he nods off into a sleep slumber. This is great for both of us and I hope suggests he is more settled now feeding normally.

We both sleep well and I wake to the sun streaming in the window onto a sleeping Fred.

He has not been able to have any milk from about 2300h last night as his sodium and potassium have been increasing. This means that the feeds he is getting are dropped in favour of water, the “re-hydrate” him as he is a bit dry. The diuretics have ceased too, which means hi weight of 9.3kg may be an accurate one.

He seems happy with just water and some weak juice. I have tried to get him interested in a blue twin handled beaker. He will play with it but will not accept the teat. I will not force him though and I am sure he will find out what is inside if he perseveres.

His day consists mainly of sleeping and drinking which I suppose is actually quite nice for him for a change.

We have some fun with music and some singing, plus I give him a pen and paper. The pen is of no interest whatsoever, but the paper is. He spends the rest of the day searching for it when it has fallen out of the bed and he really does like to study it closely.

He is a sweatshirt and bottoms today and looks very casually attired. He is normally in his sleepsuits so today he looks like he is ready to go out. Which he is not of course.

There is a high level of infection in here at the moment, all with the same normal stuff but those that are not ailing are sent home. Of the 10 beds on the ward, the five cubicles are in use with the remainder empty.

There will be an influx tomorrow of new people as the ward is declared “clear” in the afternoon, so that was all a bit peculiar. This is the first time that we have seen the occupancy down to five. Normally it runs at a maximum of eight beds, maybe nine I recall.

Anyway, Fred seems to be happy with his water and reads his new books. He likes to stare at the pages with mirrors on them, and I can wave at him from behind which perplexes him somewhat. He will peer into the book and grin back at me, and then look over his shoulder so he must grasp the theory about reflections.

He has lost a couple of meds which go via his Hickman line again today which is promising.

I use the time to sort out some monies heading for CLIC Sargent and Ward 34. I cannot remember what the amount to date is as it has been in dribs and drabs. I shall have to work it out but it a good sum.

Tonight I shall have fish and chips I think. Tomorrow I will be at the house as Rachel will be back by then, and I shall cook something from scratch. Not sure what yet.

Rachel visited Tavistock today which is not far from home. He went into Creber’s which is a rather nice old delicatessen where she stocked up on Gentleman’s Relish and more unusually Poachers Relish. The latter was one I bought recently but the seal was broken when I opened it. She also stocked up on Dorset Knobs and some other marvellous biscuits for the mini Tuck Shop we keep in the hospital. Just for own use really.

Day 266 (Mon 26 Mar)(Day Plus 41)Tue, 03/27/2007 - 01:55 — endc011
Last night was the best night sleep Fred had had for quite a while and I managed to keep him dozing until 0400h when he was hungry. Another nap afterwards and he ad some feed at 0600h and more dozing followed.

The fist half of the day involved us both sleeping, once Rachel and June had gone. He was off his line for an hour or so, but he did not settle much whilst on the floor. Back in bed he fell asleep so I did same.

Today the weather is fairly bright and not as cold as I thought it would be. I went into town twice and left Fred to his own devices.

I speak with Michelle, who explains the possible plan over the next few weeks. What she tells me surprises me no end, and I have to realise this is only an estimate and knowing Fred there will be some setbacks along the way. However, we need to sort out Fred’s feeding issues as at the moment he is partly dependant on the TPN, although hopefully the last few days have seen an improvement in his eating habits. We have to make him keep it down though and that is the next problem. He has also a grumbling infection somewhere, as his CRP has been below 10 for quite a while although now is going up again.

Once he is off antibiotic treatment and they feel he is stabilised, then he could be able to stay up at the house with us, and visit the hospital via “Day Beds.” This could be as soon as in two weeks time, given the right circumstances.

We then went onto what happens after that, as we are having difficulty in knowing how much longer we need to be here for. Again, anything can happen in the meantime but Michelle thought that he may need to spend around two weeks visiting Day Beds.

She inferred that after that Fred could return with us to home, and he visit Bristol three times a week, presumably going home each time with us. This suggests a month before he is likely to be in a position to head home but I suspect it will be longer than that in any event. That is all up in the air at the moment and I doubt whether we will achieve such a target in a short space of time, ‘though it does give us a glimmer of hope to squint for.

I am not sure what specialist experience Exeter or Plymouth hospitals have but hopefully at some stage they will be able to become involved in the “shared care” package which was discussed with us some months ago.

Again, I shall only be happy when we are actually there as Fred is very very early from a bone marrow transplant and we have such a long way to go. No jumping for joy at the moment as my superstitious side has increased tenfold and we do not want to tempt any fate.

Today saw Fred receive a jiffy bag all the way from Milton Keynes and he helped me open it up. Another very kind gesture and he wobbled his head in appreciation, sporting a milky tongue for all to see at the time.

He has started limbering up to do his “thank you” letters for his birthday, and is planning to set aside some time each day to deal with correspondence.

He seems very alert today and rather cheery in the afternoon. He was looking at me laughing when the en suite toilet door creaked shut, suddenly startling him. His face was a picture as he watched it close by itself and then he looked back at me quite surprised at what had just happened.

Day 265 (Sun 25 Mar)(Day Plus 40)Mon, 03/26/2007 - 03:48 — endc011
Nobody told me that the clocks went forward this morning and so I was confused to say the least. I missed the Archers unfortunately.

Once I had all my bits together I popped over to my mum and dads and then headed back to Bristol.

Fred had some Codeine during the night which seemed to settle him and so both had a reasonable nights sleep by all accounts.

When I get in Fred is active but a bit grumbly. June and Rachel head back to the house and Fred falls fast asleep for a couple of hours allowing me to do so too.

The evenings are obviously lighter now and I look down onto Colston Street which is deserted. There aren’t any pigeons today for some reason.

It would appear that Fred will not have a BMA tomorrow as first thought. He will have a chimerism test during his 0600h bloods. Fred was making a great din at the time Michelle was talking and so we may well have misunderstood.

Day 264 (Sat 24 Mar)(Day Plus 39)Sun, 03/25/2007 - 07:33 — endc011
Being away from Fred means the ‘blog is a bit light of information and today is no exception.

He has been his normal self today and has been occasionally yucky but was percussing loudly when I rang

Rachel’s mum, her dad and Gaye visited and all enjoyed his company as usual, with him kipping and being active for the duration.

No other news today really. I visited Claire for tea, and was given a “Ready Steady Cook” challenge - with chicken breasts, potatoes, mushrooms, tomatoes, onions and garlic being in the bag.

With 30 minutes to cook we rustled up chicken breasts in olive oil stuffed with mature cheddar, sauté potatoes with onions and garlic in olive oil (with a stock cube or two crumbled and mixed over them), mushrooms filled with a butter and tomato mash (….), and basted baby sweet corn all seasoned accordingly.

A very pleasant evening.

I shall return to Bristol tomorrow.

Fred is due another BMA test on Monday in theatre, which will require another GA, plus another Chimerism test. Again, we shall have to worry ourselves silly for a day or two and wait for the test results, as the former looks to see whether leukaemia has returned or not.