Day 146 (Thu 30 Nov)
Fri, 12/01/2006 - 02:05 — endc011
Fred and Rachel had a sleepy night by all accounts, though he fed in the early hours I am told.
When I get in he his very much awake and is about to have a feed. We decided to stop feeding him until he was calling out for some grub as he has become too reliant on his NG tube. We wait a while until he is obviously hungry.

He has not shown any interest in taking feed from his bottle for a few weeks now, and feeding by tube tends to take a lot longer, thus increasing the gaps between meals. He has ignored the bottle a few times in the past, but happily resumed.

Once his tum is rumbling proper he is offered the bottle and he takes it straight away. He guzzles 80ml instantly and decides that's enough for his first try. This is encouraging as it gets worrying he will not want his bottle at all. He gets winded and the remainder goes down his tube.

Amanda visits today and her son James has sent some gifts for Fred which is nice. Some rigid books for him to look at and a ball shaped creature that chuckles and makes noises when rolled. Fred grabbed the latter first and has been chewing its arms and legs since. As his bed is sloping, it does roll away out of his grasp, but is too wide for the bars.

We have some lunch in the Wetherspoons - have not been in here for a while now. Spot of shopping in the centre and then head back to the hospital.

Rachel heads back to the flat and I stay for the night here.

Tomorrow is Fred's bone marrow harvest and IT. The IT is one bit of chemotherapy that he missed at the beginning of the treatment which they always wanted to slot in somewhere convenient. We are happier that as much of the planned chemotherapy is given to him. I think he has missed just one injection of chemo so far.

The harvest will take bone marrow from his hip bone and they reckon a 100ml is what they take. He will feel like he has been kicked a bit though for a while. He might also need some fresh frozen plasma and blood possibly.

We hope that we will be able to get back for a few days but we will see. Hope so very much.

Day 145 (Wed 29 Nov)
Thu, 11/30/2006 - 01:05 — endc011
Fred was washed and dressed for his 0900h appointment across in the BRI for his MRI in time. The anaesthetist came over and had a quick look at him, and then Rachel and I went across with Ken his nurse to the x-ray department.

Within a few minutes he was put out with a GA and disappeared for thirty minutes or so. We waited for Fred and went back when he was called. When we got there he was wide awake on his baby trolley looking very alert. Once wheeled back to the Childrens Hospital we thought he would have a sleep, but he chose to remain awake all day.

He had some feed as he was NBM since 0300h and so settled.

In the afternoon Karen Archer from the Anthony Nolan Trust popped in to the hospital and came to see Fred. He was wide awake and we had a good long chat, and it was nice to meet her after the previous email and telephone conversation.

Not alot happened today, other than Fred had a blood transfusion which is a bit like Kryptonite to him. Once replenished he is hyperactive and does not want to sleep, and has the strength of ten men etc etc....

I head back as it is dark now. Evenings will be getting longer in a month or so too.

Both of us are feeling really tired today, so I will have an early night I hope.

Day 144 (Tue 28 Nov)
Wed, 11/29/2006 - 01:21 — endc011
Last night I met up with some friends and had a bite to eat in town, which was good.
Fred did well last night too I hear when I ring Rachel and has been tolerating his feed a bit better now. I can hear him mumbling in the background though, and rustling too.

I pick up my ma and pa and head back to Bristol. There are rail-works in the Bristol area so it easier for me to bring them back with me, saving an hour or so on the train time. It is a lovely clear day all the way up and is quite summery really.

When we get here I drop a few bits off at the flat and park the car up in the hospital car park.
When we get in Fred is there full of energy and being fed some baby rice. He never really liked it, but today ate twelve spoonfuls happily, and opened his mouth in readiness which was a first. In the past you had to trick him and get the food in, which led to a dreadful mess. He was quite clean at the end of it. We had some lunch in the canteen with Fred so it was all rather relaxed.
He stayed awake all day, and is currently watching me type. His eyes are drooping a bit now but he is desperate not to miss out on anything.

I had a chat to one of the nurses today about various things, including the thermometers which go missing. They are the same type as our, an in-the-ear one. We paid a high street price of £40.00 which was average. The nurse told me that they buy them from their supplier at £99.00!! Hmmmm, anyway they are going to get them for less than £35.00 now locally.

Ma and pa head back on the train and I do some shopping. Rach gets ready to head back to the flat.

Tomorrow Fred is having another MRI scan at 0900h, under GA, so will be hungry by mid-morning.

Tonight I am looking after Fred and I hope he has got into a pattern of deep sleep during the night.

Day 143 (Mon 27 Nov)
Tue, 11/28/2006 - 01:22 — endc011
Fred and I had the best nights sleep in a long while last night. he woke only to suck his fingers and then sleep again.

I did not really hear the nurses coming in, other than the occasional murmur from Fred and a few bleeps.

It was raining again last night, and the sirens particularly noisy and frequent. Do not know why but they were. The level of warmth is just about right in his room now, but he was in a gro-bag just to keep him happy. I also put a hat on him once he was asleep.

He had a pink bum starting again so this was liberally treated with cream. It could be a mixture of the antibiotics or his teething or both. He shouts when I wash him with plain water, but this morning only mumbled a protest and it was clearing up.

I took the car home with some of our summer belongings just to have a tidy up. The drive back was clear, with a little rain on the way.

Whilst I was back, David gate popped in to see us. he is the father of Yvette Gate, whom I mentioned in an earlier blog. They are looking for a bone marrow match and have been for some time. Unfortunately I was not there at the time, but he met Fred and Rachel. I spoke at length with him on the 'phone which was nice. Hopefully they will receive the news they want soon.

I deal with a few cobwebs in the house what have appeared over the last few days, and go and see my mum and dad.

I speak to Rachel a few times and Fred seems fairly happy, though we are concerned about his feeding habits at moment. Hopefully he will be able to keep it down in future. It is never very much though.

I have uploaded a few photographs onto the 'blog, and one is of Fred in his Bumble Bee suit as requested by Helen. It is a bit darker than I thought so will take another as soon as Fred is ready to model.

Day 142 (Sun 26 Nov)
Mon, 11/27/2006 - 02:46 — endc011
I had one of my previously cooked/frozen meals (lasagne) last night at the flat and Rachel had the cottage pie. Makes a change and is quick.

Fred was still being a little sick after each feed, and this has increased in frequency. It is not much, but should not be happening. He is generally happy though.

We speak with the doctors who explain that his blood are looking good. He has somewhere like 600 platelets, 32 WBC and a good number of neutrophils. We queried the apparently high WBC as we thought this was an indication the leukaemic cells were returning, but they explained that it is normal for the recently rejuvenated "healthy" marrow to over-produce and will settle in the next few days.

There are other apparent good indicators with his well-being that would not be present if there was a problem. We discussed his feeding and sickness problem. I suppose it is easy to forget that Fred is not well and feels possibly horrible some of the time. Plus the volume of medicines he is getting, orally and intravenously may mean he does not want to eat.

We therefore decide to slow down on his feeding and give his stomach a rest. We will wait until he asks for some food, though they will probably top him up with fluids overnight. he does not have a temperature so the risk of dehydration reduces a bit.

Fred is very mobile at the moment and can (with assistance) put his toes in his mouth easily. He is saying strange things that sound like "dada" and "daddy" but cannot repeat them when requested. They cause him great amusement and everyone else who encourages him.

Rachel heads back and I give him a feed as I think he is starting to get hungry again. So far after an hour he is still keeping it down. We have decided that we will try and give it to him sitting up. He has tolerated those feeds lying down for a few months previously though.
I have been sitting reading the papers and catching up with the world outside. This morning I managed to catch up on the Archers once again which was nice.

Fred is sitting alongside me again as I type. I have had to put the hood up on the pram as he keeps staring at the bright light overhead, which is giving him a squint.

I will try and head back tomorrow to do a few things hopefully.

Day 141 (Sat 25 Nov)S
un, 11/26/2006 - 01:54 — endc011
As he had slept quite alot during the day, Fred was a bit more active than normal during the evening. Luckily by late evening he had quietened down and was fast asleep after his feeds.
I heard him snuffling around in the early hours and watched him through the "night video" mode of my video camera which was interesting. he was not aware I was watching him, and though he did not nothing of interest, was fun to watch. I called out his name and he jumped, startled, at the noise. He peered back at the direction of my voice though could not see me. however, he must have known it was friendly as he smiled in the darkness.

I woke up in the morning still pretty tired. You cannot sleep soundly as the nurses come in regularly and bleep and ping as they do various obs on him.

I manage to listen to the cricket all night on World Service though which was quite good.
Rachel rings early in the morning to say she will be heading back soon, once she has delivered the last of the prizes from yesterdays CLIC Coffee Morning in Chagford.

It is raining and Fred is still on antibiotics, so we are not going anywhere really. I watch the television and fall asleep just like Fred who is next to me in his chair. Just before I nodded off he was carefully reading his rag book that mum and dad gave to him. (This is the one that crackles noisily during the night, so I confiscate it then, as it keeps me awake.)

Fred has been sick a couple of times today which is a little worrying. We do not want any other set backs from illness or infection. We have to give him 1050mls of milk each day, and this means it might have to go down when he does not want it. Not much comes back up, but it means a change of clothes and bedding and Fred gets upset at all the trouble he causes.

However, a second or two after being yuk he will be laughing and giggling so he could not feel that bad.

I am get ready to go back to the flat. Over the next few days we will be getting ready to move to another CLIC property, which is still nearby, called Sam's House. It has a much much stricter view on hygiene as some of the patients and carers will be susceptible to the simplest of infections, so will be different to where we are now. It is newer, and bigger and is apparently really nice. We will be the new-bugs once again. We have been at CLIC House since July continuously, and have seen lots of people come and go.

Fred will start to have various things happening to him shortly in preparation for a transplant. There is some confusion over certain dates, which rely of other things happening so once we are told formally we will know.

I hope that the response to the Bone Marrow Donor Session in Torquay is going well. It is "inspired by Frederick Wills, aged 8 months" according to the Anthony Nolan publicity. It is on at the Torbay Council Town Hall, Torquay on Wednesday 13 December 2006. My colleagues are donating from 1000h to 1230h and it is open to the public from 1230h to 1530h. Just turn up but please make sure you know about what is expected of you before you sign up really. Check out the Anthony Nolan Trust website on my homepage under the "donating bone marrow" link or contact 020 7284 1234.

Day 140 (Fri 24 Nov)
Sat, 11/25/2006 - 05:29 — endc011
Fred and I had a good night, with him sleeping quite well. I kept an eye on his nappy during the night as we want to keep any rashes at bay at the moment.

He woke for a feed at 0530h but this was by the NG tube. He was not interested in the bottle and has not been for a few days. Sometime he will, other days he will not.

As usual by the time his feed is down, it is time for his meds at 0700h, and then it is time to feed again after a couple of nappy changes as he starts to get going for the day.

I try to catch a bit of last minute kip but sadly it does not happen.

Not much is happening to us today so I read and Fred plays. I try to get him in an upright position for a while on my lap, but he is restless, and he spends some time in his chairs. He seems happy.

I head into town in the afternoon and he sits in his doorway watching everyone go by. he rarely falls asleep and is constantly tickled by passers by.

I get his some stuff and things called Bickie Pegs. They are like solid biscuit sticks that he can gnaw on, whilst he is teething. It took him a while to get the hang of it but he did have a nibble. He has started to bite quite hard on things now, and was getting a bit frustrated today with not having something solid to chew on. We were given a chill-able teething ring, which we have used as a rattle and toy, and we now put it in the fridge for him. That seems to work.

Rachel and her mum are having the CLIC Coffee Morning in Chagford today. I do not know what the weather is up there but I hope it will be well attended. Once everything has been sorted I will report back as to success.

Again, an uneventful day of just Fred and me, sitting in the room.
Hopefully tonight he will be settled again.


Day 139 (Thu 23 Nov)
Fri, 11/24/2006 - 05:51 — endc011
He was well behaved last evening but did stir through the night wanting some feed.
He was NBM from 0900h so had a feed just before. He needed some fresh frozen plasma (FFP) this morning too and this arrived just before he went to theatre for his Hickman line replacement.

He went down happily and returned at about 1500h a bit groggy but generally chirpy. they cancelled the IT chemotherapy and this will be done next week.

At 1200h we met with the Consultant who gave us some information about the bone marrow transplant process . It was a re-cap on what has happened in the past and how Fred is now, and what to expect in the future. We were given statistics as to success that were not as good as we would have wanted. Without the bone marrow transplant it would be grim reading. We knew the odds I suppose but with the last few months of things looking up, we were today reminded as to how serious all of this is for Fred.

Fred is tonight very chirpy and is looking really good. His temperature has levelled out now and his infection seems to have passed, so is improving at the moment.

As Fred is well, Rachel has headed back to organise the coffee morning tomorrow which hopefully will be a success. I hope all their hard work pays off. Fred reckons it will too.
Anyway, short and sweet tonight. Fred is in his bed and is getting a bit more mobile now, even if it is bum-shuffling.

Day 138 (Wed 22 Nov)
Thu, 11/23/2006 - 00:16 — endc011
Little Fred was well behaved last night and he slept most of the time. I fed him at 0430h to keep his feed intake going, and he generally will watch me holding the syringe above his head, as it goes down his NG tube.

At that time of the morning Fred will be half asleep and I am reluctant to wake him properly by him getting out of bed. Plus he might not want the bottle at the moment. When he is off-colour he tends to lose interest in the bottle but not the dummy.

I give him his meds spot on 0700h as I want them to absorb into the body, before his next feed.
Not alot happens today really. We are no longer being "barrier nursed" so we can move around, but Fred cannot leave the hospital and the weather is not so good. It is a time to be quiet and nod off, and Fred does same.

Fred has another cannula put in, this time his left hand. I move out of the way whilst Fred is comforted by mum, and I come back to find the towels a bit blood covered. A little had been spilt. However, Fred had a cannula that worked and hopefully will continue to do so. They splint and bandage his arm so as to keep it in position.

He is due for a visit to theatre tomorrow for his new Hickman Line and an IT bit of chemotherapy. This is one he missed in the early days, and they always wanted to try and squeeze it in if they could somewhere suitable.

He is due the visit in the afternoon and will be NBM from 0700h onwards I think.
I mentioned the line that was removed might not have been the source of infection yesterday, but I have been told that when it was originally tested there were traces of the bug inside the line, hence it coming out. In any case, a new one hopefully will mean there is a less chance of the bug appearing at the wrong time.

Fred's day has been relaxed and his temperature is subsiding hopefully. His CRP is showing the infection is reducing so that is good. Also his other counts remain on the up, which is good for Fred, and us.

I am off shortly back to the flat. I did not sleep that well in the latter part of the night, or if I did I cannot remember anyway. Fed will hopefully use this opportunity to recharge his little batteries and get his head down to kip.

The weather is grey and miserable and it has started to rain here. Good job I bought my hat.

Day 137 (Tue 21 Nov)
Wed, 11/22/2006 - 02:36 — endc011
Last night I went on a cooking marathon at home. We decided that the food we were starting to eat here is habit forming, so I took the opportunity to get some foil food containers. I did a number of beef lasagne's, some beef stews, and a few cottage pies, which I froze. We can then defrost them here and have them when we want.

Fred had another good night and was well behaved with Rachel at hospital.

This morning they needed to get some blood out and his cannula was not working properly again, so he will need to give some later.

I picked up mum and dad from home at 1000h and we arrived in Bristol by 1200h. I went back to the flat and showed ma and pa the place, and put the bulk cooking parcels in the freezer. We then parked up and walked to the hospital in a hail storm.

When we arrive there is crowd around Fred and needles are being waved about. The room is not bug enough for all of us and Fred is causing a commotion.

When all is calm Fred is sobbing a bit but it pleased to see me. Mum and dad have also bought some more rag books for him to chew on, and he is pleased at that. We spend the afternoon in the room with Fred desperately trying to stay awake for us all. He manages until they have gone.

The results of his old Hickman Line come back to stay they did not find the bug on it.

The new doctor arrives and has a look in his ears as one is hotter than the other. He finds that Fred has an ear infection and this is related to the particular bug they found earlier, thought to be linked to his infected line. I am not sure whether there ever was an infection in the line, and might have been in his ear all along. We did mention that one ear was hotter than the other a while back.

Anyway, little can be done now other than to wait and see what Fred does. His counts are on the way up - i.e. he will be able to fight infection himself now which is good, and they bounced back quickly as before. His CRP was at 248 yesterday or the day before but is now at 60, so the infection is clearing.

They plan to give his some chemotherapy on Thursday when they intend to replace his Hickman line. That will mean Fred does not have to endure unnecessary pain from blood-letting.

So after all this Fred gets an ear ache. I used to suffer from them as a kid and so he must feel pretty grotty on top of all the other things.

Fred's nappy rash has returned with a vengeance and is linked to the antibiotics he is having. It causes him great pain as I used a baby wipe without thinking earlier. I shall use warm water next time I think to clean his fat bum.

I discussed the rash with his nurse and she went away and made a paste of mitanium, nystatin and paraffin which smelt horrid but looked OK. I slapped that all over and hopefully this will help his along to recovery.

I am with him tonight and I do not know what to eat. I do not think I have any money for that matter. It might have to be stinky noodles again.