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.