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.
Thursday 30 November 2006
Monday 20 November 2006
Day 136 (Mon 20 Nov)
Tue, 11/21/2006 - 04:50 — endc011
I rang Rachel first thing this morning and he had had a good night. As he must have been exhausted he slept from 1900h through to 0300h when Rach fed him, or changed his nappy. He then slept until 0700h. I think Rachel caught up on her sleep a bit too. I was worried when I drove off, as you never know whether Fred would deteriorate, but there was not any indication of that.
They decided that the cannula in his foot should come out, as it was becoming a pain to give him his meds and take his blood. They took it out and re-inserted another in his other foot for the time being. needless to say, Fred was very distressed about this unexpected probing, but coped with it well. When completed, he sucked on his dummy and had some Calpol which calmed him rapidly.
When they are doing these procedures you like to assist and hold him down to comfort him. He manages to throw a smile in occasionally then gets bawling again. He also tends to look you in the eye occasionally which makes it worse.
I am told that they will put his Hickman back in on Thursday too. This is good news as if he is well enough for a GA, then he is improving.
His temperature has stayed level around 37.5c all day, and they took the dressing off the old Hickman site today and it looked inflamed but OK. Rachel did not think there was any great concern at the moment but they have changed the antibiotics.
As his counts improve, his resistance to infection will increase which means his body can have a go at dealing with the infection as well. At the moment he has no such defences, hence him catching the bug in the first place.
Some good news is that a match has been found for Fred. A UK male, though we are not singing and dancing yet. there are many factors in bone marrow transplant and one is whether the match is A) still alive, B) at the address registered C) is willing to donate and D) medically able. He had agreed but a date has not yet been agreed. With Fred's recent complications this will delay thing a while.
However, a match is no way a "cure" by any means. Fred could very easily reject the marrow donated, and this is sadly a great possibility. It is a trial and error basis really, but it should go ahead if all is well. We have no idea when. We have not yet met with the team but will later this week, or next week. This will really be our introduction to bone marrow transferation (?) so we are about to learn new things.
Fred will, once his counts have come back after the last lot of chemotherapy have his own marrow in optimum condition (hopefully). They will harvest this and save it for a rainy day as a rescue marrow should things go wrong. That will bide him time for a another donor if necessary.
After that Fred will have an eight day course of strong chemotherapy to kill off all his own bone marrow. He will be very vulnerable to all sorts of complications and I suppose this is the most risky so far, as we are now meddling with his own natural composition. Once it has gone, it has gone, but for the rescue marrow in reserve.
Once the chemotherapy has finished the donor will be at the hospital to donate and Fred will get it via his Hickman line over a period of time.
Then it will. I do not know much more so I will keep you all posted.
The Anthony Nolan Trust said that when people hear that a match has been found a number of people will withdraw from donating at the Torquay session. I hope that does not happen because it will affect so many other people, and Fred could very well need more bone marrow in the future. If Fred could speak he would ask that everyone who is contemplating donating, please continue to do so. Whoever the current donor is, sometime ago they chose to offer their marrow for someone and Fred is lucky to be able to receive that chance. Without it Fred would still be waiting.
On the news recently there have been two South West appeals for marrow. One is Yvette Gate, who has been searching for four years or more. Her mother has in the last few days travelled to Gambia to get blood samples from distant relatives. Another, Savanna, is at the moment travelling from Cornwall/Plymouth to the same hospital as Fred in a search for a marrow donor.
Today starts Anthony Nolan Week. Having regard to the above tale a look at the link on my home page, or, in Yvette Gates situation look at her website, which follows. It shows anyone can be affected by this disease, so please trot down to donate marrow.
www.yvettegate.co.uk
Day 135 (Sun 19 Nov)
Mon, 11/20/2006 - 07:01 — endc011
Fred was a little upset again from the late evening, and the doctor came back a couple of times to take his blood from somewhere other than his cannula. Luckily each time he was fast asleep. She asked to be paged when he was awake.
When he did wake for his blood letting session, she had been called to A & E on Level 3, and would be detained for some time. When she came back after being paged he had fallen asleep once again, so she decided not to to wake him and said she would come back early tomorrow for another go.
Jamie, the nurse in charge that night, decided to have a last ditch attempt whilst he had same some spare time. He wanted to spare Fred the pain of needles in his feet or head and so we both manipulated his little fat foot, under my torchlight, (to keep him sleepy and not switch on the main light) and managed to extract the required amount. Only 2-3 mls but enough for the lab and Fred smiled through most of it, occasionally. Fred i think would be grateful and both Jamie and I were chuffed that Fred had avoided needles.
The night passed by without too much waking, but I changed him a few times and fed him at 0530h. At 0700h I gave him his meds, and slept until nearly 0900h when Rachel came in and woke me.
In the early hours as it is getting light Fred has now latched on to rolling to his side and trying to catch my attention. I pretend to be asleep and he will look at me intently from his bed, through the bars. I watch him with one eye. I might squint at him and say "hello Fred" and try to go back to sleep, but he will become more animated and eager. He has now started to hold his dummy and tap repeatedly on the bars until I wake. He has been doing this the last day or two. Tap, tap, tap until I get up. When I settle him, he starts again. He has succeeded in discovering a slightly irritating noise which he likes enormously.
I had a lie-in, and so Fred joined me for a bit, with both of us squished up in the fold down bed. All rather cosy, and he enjoyed it too. His temperature rose to 38.8 so had to be placed back on the bed to chill.
He had some some more GCSF via his foot and slept on and off.
Lunchtime was a Cup-a Soup with bread and we watched the TV.
By mid afternoon I decided I would head back to home for a bit. Just before I did, Fred was sick alot. He perked up again and after making sure he was OK headed back. He managed to splash my coat and trousers a little.
I rang the ward as I reached Torbay and I learnt he had been ill again, though was still chirpy, though very sleepy.
He settled later in the evening and Rachel said he was trying to get some sleep. All was well there and she was getting ready for bed too.
I do not know how the infection is progressing and hope the antibiotics will start to work very soon. I looked today and it has tracked higher up his chest (following the route of the old line under the skin) in the form of a gradual red inflammation.. The doctor said that if it looked infected with pus, they may need to drain it. Pus will only appear once he has neutrophils to fight infection as pus is a by-product of the body doing it job. At the moment he has nothing to do that, therefore no pus.... but the infection is still there of course raging away.
He has had this infection for over a week now and needs to concentrate on gathering his strength. His last weigh-in last night was 7.9kg. Needs to be over 8kg+ to meet the 25th centile in the Red Book.
Due to his his temperatures and sickness he will have lost vital fluids, and some weight and so they will review him on Monday.
Not much more to say really, other than his infection is holding on, and his old line site seems to be gathering an infection rather than getting rid of it. I had hoped it would have stayed in the tube, but it looked liked it escaped on the way out? Hopefully the antibiotics, and his increasing blood count will enable him to get rid of the infection.
Day 134 (Sat 18 Nov)
Sun, 11/19/2006 - 02:34 — endc011
I get a call from Rachel in the morning that Fred had been up most of the night, calling out and crying, and generally being very restless. His temperature had been going up and down too.
All this nocturnal activity by Fred means you do not sleep at all really, or at least you cannot remember sleeping. By the time you do, it is time to start the day again.
When I get in Rachel is looking tired and Fred is not.
I give him a tickle and we have a look at him in the light. He has a dressing over his wound where they took the Hickman out and it has not oozed anymore. i took a photograph of it yesterday to be able to compare the site but all looked the same. However, there was some additional reddening of the skin visible and this was new over night.
We spoke to the nurse and doctor and it looks like the path of the old tube under the skin may be infected. We will watch it, but he is on antibiotics anyway.
They have to use the narrower bore cannula in his foot for fluids and drugs and this is a bit slower. When he gets certain drugs it obviously stings him as he cries. Before, it would disappear deep don into his chest. It is also noticed that when the fluid is pushed through, the entry point in the skin is leaking slightly. We jiggle it about and sometimes it works, sometimes it is leaky. Only a little but, but it should not leak.
There is some discussion that the cannula will need to come out again, and another put in, in the other foot. No GA this time but like before with a little local anaesthetic. Fred has crummy veins because he is so small and it will be a difficult effort. It is mentioned that a vein on his head could be used instead as a cannula site....
Fred is generally OK with himself all day and Rachel goes into town for a well earned break. It is crowded with shoppers and everything takes a lot longer.
She comes back and we sit with Fred who is cooing and gurgling and singing.
His teeth are progressing and I can see the flat tops of them fully now.
Rachel heads off as I am staying tonight and it would be nice for her to get some kip back at the flat.
She heads off so it is just Fred and I. He falls asleep and I fall asleep in the new chair.
One of the doctors is circling to get some blood off Fred. Unfortunately the cannula in the foot did not let the nurse take anything out this morning and we need to have a blood sample today. All they need is 1ml, but that will be difficult I know.
He was asleep earlier, and I have popped out to get this done.
Day 133 (Fri 17 Nov)
Sat, 11/18/2006 - 00:04 — endc011
Fred was not too happy until about 1900h last evening, and then seemed to calm down.
He had his meds and had continued to tolerate his feed as well. I am sure that in its itself makes him feel a bit happier.
He had another dose of the GCSF which will give him a kick start we hope.
He then was really calm and his temperature bobbed around a bit and went down to 35.9c for a hour or two. I gave him a couple of layers of blankets for that and he slept well most of the night.
He was NBM from 0500h onwards so he had his last milk at 0430h, finishing just before 0500h. He also had his last 0700h meds a bit later with some Calpol to tide him over.
They use the opportunity to make use of the line for the last time by giving him a blood transfusion at 0600h. This is followed by a cocktail of drugs in the line. After this I speak with Jo who says that his clotting is not quite correct. In view of that, to be on the safe side she will arrange for some FFP (fresh frozen plasma) and platelets into him before theatre.
The anaesthetist came in to see Fred and he has dealt with him a few times before. The Hickman line will come out under GA as planned. He will have a little stitch mark where they take it out, and hopefully the bugs will go in the bin with the tube.
He discussed the temporary central line, which would either go in a cannula in the back of his hand or foot. Infants veins are a bit thread-like and it can be difficult as we have seen. The alternative could a central line going into his groin. He has had two there before, but because they are in the "nappy zone" there is a higher risk of infection.
They will decide in theatre. I also asked that they change his current NG tube as it is splitting and has been in for a while too.
At 1100h I am on the 'phone to Karen Archer of the Anthony Nolan Trust having a chat. I am mindful of the time, and nip back along the corridors to the ward. Luckily I bump into them going to theatres on Level 4. He is still hooked up to a couple of pumps but seems oblivious of course.
Rachel sees him into the theatre and I wait outside. She comes out and we go off to the room to have a coffee.
A short while later we are called and we go down to pick him up. He is in an adults high sided trolley this time and looks a bit lost in it. A bit grumpy but aware of those around him. And hungry too.
He gets a feed and falls asleep for an hour or two, waking occasionally.
Then he seems to have perked up a bit, and is laughing and chuckling to himself, and examining the labels on his toys. that is the latest thing - labels.
We are "locked down" in our room at the moment because of the potential bugs.
There is the regular curry night tonight but I am up at the flat and Rachel will be with Fred tonight.
He seems to happy at the moment, and fingers crossed his temperature is steadying now. He is more himself.
Day 132 (Thu 16 Nov)
Fri, 11/17/2006 - 04:36 — endc011
Fred was distressed most of last night as his temperature went up and down. He peaked at 39.2c and this meant he was awake all of the night really, making his gurgling and crying sounds.
It is difficult to pacify him when he is like this but it does mean that you have to get up every few minutes and cannot really sleep. He gets Calpol which calms him but this does not always work.
His general well-being is improving slowly but the infection is still there and not going away.
After a couple of nights Rachel is exhausted, as it also very worrying to see Fred cooking to a crisp quietly.
He is due to have his MRI on Friday morning which is quicker than we thought.
They will get the results of yesterdays GFR test, to see how his kidneys are working.
In order to try and get him fighting infection himself they will give him his GCSF (see glossary) which should help him grow more neutrophils to fight the infection from within. It worked really quickly last time and hopefully will again.
When I get back to Bristol I hear that Fred has been encountering problems with the infection. They have identified the type and what it is. It is a common one, but a nasty one. It seems to live in the line and can cause no end of problems. They have cancelled the MRI and have decided to remove his Hickman line in theatre. In theory the bugs should go in the bin with the line, but some may remain in the blood. They will then give his a course of antibiotics to deal with this if necessary.
As the line will be out for a week or two, he will have cannulas in his hand, where they can continue to administer his normal IV drugs. Not ideal but better than an infection.
They could wait and see if Fred will get rid of the bug himself and leave the old Hickman in, but it takes time. Furthermore it increases the chance of it coming back later.
At the moment he is quite chirpy. Changed his bum and fed him. He has settled and is playing with his toys. I bought him a wooden rattle from the shop in Crossways and he liked that. He has started gnawing at it.
So, tomorrow is a big day for him. We are also meeting some other people we have not yet met, who deal with bone marrow transplants. We have not yet looked at the BMT Ward which is upstairs. Then it will be the weekend again.
Fingers crossed again for our little bundle of pudge...
Day 131 (Wed 15 Nov)
Thu, 11/16/2006 - 03:34 — endc011
Fred continues to be a bit gripey but Rachel says he seems to be better now.
He is smiling more and although his infection continues he seems more alert. He has had a number of visits by doctors today and had his GFR (glomerular filtration rate) earlier. This is where he is given a radioactive isotope into the blood and they measure how well the kidneys process it out. It should indicate the efficiency of the kidneys.
He continues to have fluids put into him and he has not really been sick since Rach started the little and often method.
His infection marker - the CRP - should be less than 10, but has now risen to 280. They have identified where the infection is, and it is related to his Hickman line. On the tube are lumen, or little ports, where the drug or syringe can be inserted. As with anything outside of the body going in, it increases the risk of infection obviously. However, it is better than needles or the vascaths he had in his groin in the early days. It is the blue lumen that is infected. They are blue and yellow in Freds case due to being different sizes.
It is a common problem but if the infection is serious it may need to be removed, and a new one inserted.
This has also resulted in Fred having a presumably related stomach infection. Things like that are of concern in hospitals so Fred has been put into "quarantine" in that his room stays shut and the number of people who go in and out are reduced. This is called "barrier nursing".
Whoever is with him, Rachel or I, cannot leave the room unecessarily so it is a bit like a prison in there. You have to press the pager or poke your head out if you want something.
If this is the case my wanderings around the hospital will be severely curtailed. If the 'blog turns up in a very brief form, then I have texted Claire I expect with just a few words. She can be my ghost writer. If it is blank then I, or Claire, did not get a chance to post anything.
I met Emma today who had taken delivery of the business cards that advertise the Bone Marrow session on the 13th December. They are printed nicely and give all the relevant details about being a donor. They have a tiny little photograph of Fred, plus a discreet "inspired by Freddie Wills, age 8 months." They shall be given out as best we can. There are some posters on their way too, which might be similar.
Hopefully now that Freds infection has been identified we can concentrate on getting rid of the nasty bugs in his tummy.
Day 131 (Wed 15 Nov)
Thu, 11/16/2006 - 03:08 — endc011
Fred continues to be a bit gripey but Rachel says he seems to be better now.
He is smiling more and although his infection continues he seems more alert. He has had a number of visits by doctors today and had his GFR earlier. This is where he is given a radioactive isotope in the blood and they measure how well the kidneys process it out. It should indicate the efficiency of the kidneys.
He continues to have fluids put into him and he has not really been sick since rach started the little and often method.
His infection marker - the CRP - should be less than 10, but has now risen to 280. They have identified where the infection is, and it is related to his Hickma line. On the tube are lumen, or little ports where the drug or syringe can be inserted. As with anything outside of the body going in, it increases the risk of infection obviously. However, it is better than needles or the vascaths he had in his groin in the early days. It is the blue lumen that is infected. They are blue and yellow in Freds case due to being different sizes.
It is a common problem but if the infection is serious it may need to be removed, and a new one inserted.
This has also resulted in Fred having a presumably related stomach infection. Things like that are of concern in hospitals so Fred has been put into "quarantine" in that his room stays shut and the number of people who go in and out are reduced. Whoever is with him, Rachel or I, cannot leave the room unecessarily so it is a bit like a prison in there. You have to press the pager or poke your head out if you want something.
If this is the case my wanderings around the hospital will be curtailed. If the 'blog turns up in a very brief form, then I have texted Claire I expect with a few words. She can be my ghost writer.
I met Emma today who had taken delivery of the business cards that advertise the Bone Marrow session on the 13th December. They are printed nicely and give all the relevant details about being a donor. They have a tiny little photograph of Fred, plus a discreet "inspired by Freddie Wills, age 8 months." They shall be given out as best we can. there are some posters on their way too, which might be similar.
Hopefully now that Freds infection has been identified we can concentrate on getting rid of the nasty bugs in his tummy.
Day 130 (Tue 14 Nov)
Wed, 11/15/2006 - 01:34 — endc011
Last night was a long one in that Fred was very very unsettled due to his high temperature. No matter what they did, his temperature went up and down slowly. Just when you thought the problem was going away his temp would be 39.5c which is just over 103c.
It is not good for Fred and he would then fly into a frustrated rage. He would then drift off to sleep.
He has been quite settled for sometime now and not knowing where the infection is coming from means they cannot be too specific with anti-biotics. It might not even be something anti-b's can deal with, so is a worry.
He felt like a loaf of bread just out of the oven sometimes which was the most worrying, and how long he could sustain being that hot. I guess it was because the room, and I were colder than him.
During one of his bigger screams (when his face goes purple and his mouth just stays open without anything coming out...) I spied the root of the problem possibly.
Lurking on his bottom gum was a pair of little tooth pegs popping through. That immediately made me feel better as I now had some understanding as to why he was so enraged and upset. He has a fever too, but teething will exacerbate it, and will make him mightily miserable.
When I later told my mum and dad later, dad was chuffed to have reckoned this was what was wrong yesterday when they visited. I had given up looking as I thought it would be some time yet due to his treatment. Anyway, little teeth will mean he will start gnawing on things. He has a teething ring which goes in the fridge which he has just played with until now, so we can get that one chilled.
He does not have any neutrophils to fight infection at the moment, so is liable to infection. i think there is a chance he might have a source of infection here, and this might help them deal with it quicker.
He suddenly relaxes too, and sleeps for a few hours, but is sick a couple of times. Poor little Fred.
I nod off at just after four as I am worrying about him and his temperature, but it is dropping slowly.
By the morning he is quite calm, but still really hot. He looks very sad for himself, and is not our Fred. No great shouts, which is a bit worrying. He does manage a smile though occasionally.
He perks up a bit whilst I am preparing to head back once Rachel and June arrive. None of the staff are overly concerned at his temperature behaviour, so I reckon things are OK. If there were problems then we would know.
As I am leaving Kate (ward sister) gets a 'phone call from a member of the public who has read an article in the paper and wants to know about donating bone marrow. How he got through to the ward I do not know, but he is given Anthony Nolan Trusts details.
Rachel and June arrive and spend the day looking after Fred. It sounds like he is the same really, bobbing up and down, but is being looked after. He appreciates this and manages a few smiles.
The doctors, like Rachel and I, are concerned that he does not dehydrate, so he is put on a drip to replace that. Rachel has manage to feed him in small amounts so he retains all of it today, which is far better than I did. Little and often is the key by the look of it.
His weight has dropped a bit which is a disappointment, but he is chirpy.
Rachel and June have rustled up some gloves and shoes for him to keep his extremities warm. They are like ice, with his back and head roasting.
When I speak with Rachel I can hear him chattering in the background with the fan on in the room. He seems quite happy now, and the doctors seem pleased with him so far.
I hope Rachel and Fred have a good night and that he will sleep better. With a better food pattern today, the new blood he had, plus the fluids, I hope this will give him a bit of a kick start into getting better.
I spoke with a few people today about Fred's appearance in the paper. Abi my hair dresser was a the new stand when a couple in front commented on the paper and Fred's picture to her which was nice. Dawn was on checkout in Sainsburys and a few customers commented on him as they passed through the tills.
Perhaps it was Fred's ears burning yesterday?
Day 129 (Mon 13 Nov)
Tue, 11/14/2006 - 01:38 — endc011
Fred was still hot over night but slept well.
Today his temperature went up and down and he was happy for the most of it. He can have only a limited amount of paracetamol before he uses up his credits. He feels really hot at times and the thermometer shows him bob from 36c to 39c.
He is in his nappy all day and sits in his baby bouncer watching the world from his door way. he will nod off, then awaken feeling rather grotty.
My mum and dad visit and he behaves well. I think he is pleased to see then though and raises a few smiles before feeling a bit glum.
He has had his bloods checked and they will do other tests. Nothing back yet though and some take a few days.
He has run out of nappies and I get some plus some wipes as I am changing them far more often now. there is a hint of nappy rash brewing though it comes and goes without careful bum wiping and washing. No gripes from Fred.
He was sick earlier after a might bawling session. Afterwards he looked very relaxed and smiley. Hopefully we will be able to keep the temp under control. Fred has had a good run so far and these things are expected. His MRI scan was cancelled today as he was not well enough and needs a blood transfusion. Just waiting for the blood to arrive.
Today Fred has appeared in the Herald Express and the Western Morning News, in relation to a bone marrow donation session my employer is orgaininsing on the 13 December 2006. The following are links to the articles. I amnot "pointing" at Fred, merely scratching his chop when Claire took the photograph. There is a marked difference between the "before" picture and the one taken recently. Fred's hair has disappeared and has been replaced by an almost blonde fluff.
The Herald Link is (cut and paste possibly:
http://www.thisissouthdevon.co.uk/displayNode.jsp?nodeId=134822&command=displayContent&sourceNode=200313&home=yes&more_nodeId1=134831&contentPK=15933054
The Western Morning News link is:
http://www.thisisdevon.co.uk/displayNode.jsp?nodeId=143632&command=displayContent&sourceNode=142719&contentPK=15935497&folderPk=91672&pNodeId=201752
Hopefully those links will work.
I can hear Fred down the corridor so had better go and see what he is up to.
Day 128 (Sun 12 Nov)
Mon, 11/13/2006 - 05:35 — endc011
We had Fred stay overnight with us and he seemed to enjoy it.
We headed down to the hospital and Fred was placed back in his trusty bed. He had his bloods taken and we decided that we would have something to eat in the canteen as we had no need to go out.
Fred was OK to go out with but he was sleepy and so was I.
His platelet count was low so he had a transfusion of that in the afternoon. He is neutropenic once again and is at risk of infection.
True to form his temperature starts to rise in the afternoon and by 1900h it is just over 38c. He gets some paracetamol and the doctor is bleeped. She organises some antibiotics for the little chap and heads off. Fred is grumpy from then on, and his temp bobs up and down. He is very tired but does not want to sleep.
At the time of typing he has just nodded off but he is not interested in food.
At 0500h Monday morning he will be nil by mouth for at least six hours so I will try and get his feed in by 0430h. If he does not play ball then he has a long time on an empty stomach.
He will have a general anaesthetic for the MRI scan which is due at 1115h over in the BRI.
Rachel is away tonight and tomorrow night, and will be back with her mum June on Tuesday morning.
It is normally nice and quiet in the hospital and if Fred is a bit a dodgy then it is better to be here than up the road.
Tue, 11/21/2006 - 04:50 — endc011
I rang Rachel first thing this morning and he had had a good night. As he must have been exhausted he slept from 1900h through to 0300h when Rach fed him, or changed his nappy. He then slept until 0700h. I think Rachel caught up on her sleep a bit too. I was worried when I drove off, as you never know whether Fred would deteriorate, but there was not any indication of that.
They decided that the cannula in his foot should come out, as it was becoming a pain to give him his meds and take his blood. They took it out and re-inserted another in his other foot for the time being. needless to say, Fred was very distressed about this unexpected probing, but coped with it well. When completed, he sucked on his dummy and had some Calpol which calmed him rapidly.
When they are doing these procedures you like to assist and hold him down to comfort him. He manages to throw a smile in occasionally then gets bawling again. He also tends to look you in the eye occasionally which makes it worse.
I am told that they will put his Hickman back in on Thursday too. This is good news as if he is well enough for a GA, then he is improving.
His temperature has stayed level around 37.5c all day, and they took the dressing off the old Hickman site today and it looked inflamed but OK. Rachel did not think there was any great concern at the moment but they have changed the antibiotics.
As his counts improve, his resistance to infection will increase which means his body can have a go at dealing with the infection as well. At the moment he has no such defences, hence him catching the bug in the first place.
Some good news is that a match has been found for Fred. A UK male, though we are not singing and dancing yet. there are many factors in bone marrow transplant and one is whether the match is A) still alive, B) at the address registered C) is willing to donate and D) medically able. He had agreed but a date has not yet been agreed. With Fred's recent complications this will delay thing a while.
However, a match is no way a "cure" by any means. Fred could very easily reject the marrow donated, and this is sadly a great possibility. It is a trial and error basis really, but it should go ahead if all is well. We have no idea when. We have not yet met with the team but will later this week, or next week. This will really be our introduction to bone marrow transferation (?) so we are about to learn new things.
Fred will, once his counts have come back after the last lot of chemotherapy have his own marrow in optimum condition (hopefully). They will harvest this and save it for a rainy day as a rescue marrow should things go wrong. That will bide him time for a another donor if necessary.
After that Fred will have an eight day course of strong chemotherapy to kill off all his own bone marrow. He will be very vulnerable to all sorts of complications and I suppose this is the most risky so far, as we are now meddling with his own natural composition. Once it has gone, it has gone, but for the rescue marrow in reserve.
Once the chemotherapy has finished the donor will be at the hospital to donate and Fred will get it via his Hickman line over a period of time.
Then it will. I do not know much more so I will keep you all posted.
The Anthony Nolan Trust said that when people hear that a match has been found a number of people will withdraw from donating at the Torquay session. I hope that does not happen because it will affect so many other people, and Fred could very well need more bone marrow in the future. If Fred could speak he would ask that everyone who is contemplating donating, please continue to do so. Whoever the current donor is, sometime ago they chose to offer their marrow for someone and Fred is lucky to be able to receive that chance. Without it Fred would still be waiting.
On the news recently there have been two South West appeals for marrow. One is Yvette Gate, who has been searching for four years or more. Her mother has in the last few days travelled to Gambia to get blood samples from distant relatives. Another, Savanna, is at the moment travelling from Cornwall/Plymouth to the same hospital as Fred in a search for a marrow donor.
Today starts Anthony Nolan Week. Having regard to the above tale a look at the link on my home page, or, in Yvette Gates situation look at her website, which follows. It shows anyone can be affected by this disease, so please trot down to donate marrow.
www.yvettegate.co.uk
Day 135 (Sun 19 Nov)
Mon, 11/20/2006 - 07:01 — endc011
Fred was a little upset again from the late evening, and the doctor came back a couple of times to take his blood from somewhere other than his cannula. Luckily each time he was fast asleep. She asked to be paged when he was awake.
When he did wake for his blood letting session, she had been called to A & E on Level 3, and would be detained for some time. When she came back after being paged he had fallen asleep once again, so she decided not to to wake him and said she would come back early tomorrow for another go.
Jamie, the nurse in charge that night, decided to have a last ditch attempt whilst he had same some spare time. He wanted to spare Fred the pain of needles in his feet or head and so we both manipulated his little fat foot, under my torchlight, (to keep him sleepy and not switch on the main light) and managed to extract the required amount. Only 2-3 mls but enough for the lab and Fred smiled through most of it, occasionally. Fred i think would be grateful and both Jamie and I were chuffed that Fred had avoided needles.
The night passed by without too much waking, but I changed him a few times and fed him at 0530h. At 0700h I gave him his meds, and slept until nearly 0900h when Rachel came in and woke me.
In the early hours as it is getting light Fred has now latched on to rolling to his side and trying to catch my attention. I pretend to be asleep and he will look at me intently from his bed, through the bars. I watch him with one eye. I might squint at him and say "hello Fred" and try to go back to sleep, but he will become more animated and eager. He has now started to hold his dummy and tap repeatedly on the bars until I wake. He has been doing this the last day or two. Tap, tap, tap until I get up. When I settle him, he starts again. He has succeeded in discovering a slightly irritating noise which he likes enormously.
I had a lie-in, and so Fred joined me for a bit, with both of us squished up in the fold down bed. All rather cosy, and he enjoyed it too. His temperature rose to 38.8 so had to be placed back on the bed to chill.
He had some some more GCSF via his foot and slept on and off.
Lunchtime was a Cup-a Soup with bread and we watched the TV.
By mid afternoon I decided I would head back to home for a bit. Just before I did, Fred was sick alot. He perked up again and after making sure he was OK headed back. He managed to splash my coat and trousers a little.
I rang the ward as I reached Torbay and I learnt he had been ill again, though was still chirpy, though very sleepy.
He settled later in the evening and Rachel said he was trying to get some sleep. All was well there and she was getting ready for bed too.
I do not know how the infection is progressing and hope the antibiotics will start to work very soon. I looked today and it has tracked higher up his chest (following the route of the old line under the skin) in the form of a gradual red inflammation.. The doctor said that if it looked infected with pus, they may need to drain it. Pus will only appear once he has neutrophils to fight infection as pus is a by-product of the body doing it job. At the moment he has nothing to do that, therefore no pus.... but the infection is still there of course raging away.
He has had this infection for over a week now and needs to concentrate on gathering his strength. His last weigh-in last night was 7.9kg. Needs to be over 8kg+ to meet the 25th centile in the Red Book.
Due to his his temperatures and sickness he will have lost vital fluids, and some weight and so they will review him on Monday.
Not much more to say really, other than his infection is holding on, and his old line site seems to be gathering an infection rather than getting rid of it. I had hoped it would have stayed in the tube, but it looked liked it escaped on the way out? Hopefully the antibiotics, and his increasing blood count will enable him to get rid of the infection.
Day 134 (Sat 18 Nov)
Sun, 11/19/2006 - 02:34 — endc011
I get a call from Rachel in the morning that Fred had been up most of the night, calling out and crying, and generally being very restless. His temperature had been going up and down too.
All this nocturnal activity by Fred means you do not sleep at all really, or at least you cannot remember sleeping. By the time you do, it is time to start the day again.
When I get in Rachel is looking tired and Fred is not.
I give him a tickle and we have a look at him in the light. He has a dressing over his wound where they took the Hickman out and it has not oozed anymore. i took a photograph of it yesterday to be able to compare the site but all looked the same. However, there was some additional reddening of the skin visible and this was new over night.
We spoke to the nurse and doctor and it looks like the path of the old tube under the skin may be infected. We will watch it, but he is on antibiotics anyway.
They have to use the narrower bore cannula in his foot for fluids and drugs and this is a bit slower. When he gets certain drugs it obviously stings him as he cries. Before, it would disappear deep don into his chest. It is also noticed that when the fluid is pushed through, the entry point in the skin is leaking slightly. We jiggle it about and sometimes it works, sometimes it is leaky. Only a little but, but it should not leak.
There is some discussion that the cannula will need to come out again, and another put in, in the other foot. No GA this time but like before with a little local anaesthetic. Fred has crummy veins because he is so small and it will be a difficult effort. It is mentioned that a vein on his head could be used instead as a cannula site....
Fred is generally OK with himself all day and Rachel goes into town for a well earned break. It is crowded with shoppers and everything takes a lot longer.
She comes back and we sit with Fred who is cooing and gurgling and singing.
His teeth are progressing and I can see the flat tops of them fully now.
Rachel heads off as I am staying tonight and it would be nice for her to get some kip back at the flat.
She heads off so it is just Fred and I. He falls asleep and I fall asleep in the new chair.
One of the doctors is circling to get some blood off Fred. Unfortunately the cannula in the foot did not let the nurse take anything out this morning and we need to have a blood sample today. All they need is 1ml, but that will be difficult I know.
He was asleep earlier, and I have popped out to get this done.
Day 133 (Fri 17 Nov)
Sat, 11/18/2006 - 00:04 — endc011
Fred was not too happy until about 1900h last evening, and then seemed to calm down.
He had his meds and had continued to tolerate his feed as well. I am sure that in its itself makes him feel a bit happier.
He had another dose of the GCSF which will give him a kick start we hope.
He then was really calm and his temperature bobbed around a bit and went down to 35.9c for a hour or two. I gave him a couple of layers of blankets for that and he slept well most of the night.
He was NBM from 0500h onwards so he had his last milk at 0430h, finishing just before 0500h. He also had his last 0700h meds a bit later with some Calpol to tide him over.
They use the opportunity to make use of the line for the last time by giving him a blood transfusion at 0600h. This is followed by a cocktail of drugs in the line. After this I speak with Jo who says that his clotting is not quite correct. In view of that, to be on the safe side she will arrange for some FFP (fresh frozen plasma) and platelets into him before theatre.
The anaesthetist came in to see Fred and he has dealt with him a few times before. The Hickman line will come out under GA as planned. He will have a little stitch mark where they take it out, and hopefully the bugs will go in the bin with the tube.
He discussed the temporary central line, which would either go in a cannula in the back of his hand or foot. Infants veins are a bit thread-like and it can be difficult as we have seen. The alternative could a central line going into his groin. He has had two there before, but because they are in the "nappy zone" there is a higher risk of infection.
They will decide in theatre. I also asked that they change his current NG tube as it is splitting and has been in for a while too.
At 1100h I am on the 'phone to Karen Archer of the Anthony Nolan Trust having a chat. I am mindful of the time, and nip back along the corridors to the ward. Luckily I bump into them going to theatres on Level 4. He is still hooked up to a couple of pumps but seems oblivious of course.
Rachel sees him into the theatre and I wait outside. She comes out and we go off to the room to have a coffee.
A short while later we are called and we go down to pick him up. He is in an adults high sided trolley this time and looks a bit lost in it. A bit grumpy but aware of those around him. And hungry too.
He gets a feed and falls asleep for an hour or two, waking occasionally.
Then he seems to have perked up a bit, and is laughing and chuckling to himself, and examining the labels on his toys. that is the latest thing - labels.
We are "locked down" in our room at the moment because of the potential bugs.
There is the regular curry night tonight but I am up at the flat and Rachel will be with Fred tonight.
He seems to happy at the moment, and fingers crossed his temperature is steadying now. He is more himself.
Day 132 (Thu 16 Nov)
Fri, 11/17/2006 - 04:36 — endc011
Fred was distressed most of last night as his temperature went up and down. He peaked at 39.2c and this meant he was awake all of the night really, making his gurgling and crying sounds.
It is difficult to pacify him when he is like this but it does mean that you have to get up every few minutes and cannot really sleep. He gets Calpol which calms him but this does not always work.
His general well-being is improving slowly but the infection is still there and not going away.
After a couple of nights Rachel is exhausted, as it also very worrying to see Fred cooking to a crisp quietly.
He is due to have his MRI on Friday morning which is quicker than we thought.
They will get the results of yesterdays GFR test, to see how his kidneys are working.
In order to try and get him fighting infection himself they will give him his GCSF (see glossary) which should help him grow more neutrophils to fight the infection from within. It worked really quickly last time and hopefully will again.
When I get back to Bristol I hear that Fred has been encountering problems with the infection. They have identified the type and what it is. It is a common one, but a nasty one. It seems to live in the line and can cause no end of problems. They have cancelled the MRI and have decided to remove his Hickman line in theatre. In theory the bugs should go in the bin with the line, but some may remain in the blood. They will then give his a course of antibiotics to deal with this if necessary.
As the line will be out for a week or two, he will have cannulas in his hand, where they can continue to administer his normal IV drugs. Not ideal but better than an infection.
They could wait and see if Fred will get rid of the bug himself and leave the old Hickman in, but it takes time. Furthermore it increases the chance of it coming back later.
At the moment he is quite chirpy. Changed his bum and fed him. He has settled and is playing with his toys. I bought him a wooden rattle from the shop in Crossways and he liked that. He has started gnawing at it.
So, tomorrow is a big day for him. We are also meeting some other people we have not yet met, who deal with bone marrow transplants. We have not yet looked at the BMT Ward which is upstairs. Then it will be the weekend again.
Fingers crossed again for our little bundle of pudge...
Day 131 (Wed 15 Nov)
Thu, 11/16/2006 - 03:34 — endc011
Fred continues to be a bit gripey but Rachel says he seems to be better now.
He is smiling more and although his infection continues he seems more alert. He has had a number of visits by doctors today and had his GFR (glomerular filtration rate) earlier. This is where he is given a radioactive isotope into the blood and they measure how well the kidneys process it out. It should indicate the efficiency of the kidneys.
He continues to have fluids put into him and he has not really been sick since Rach started the little and often method.
His infection marker - the CRP - should be less than 10, but has now risen to 280. They have identified where the infection is, and it is related to his Hickman line. On the tube are lumen, or little ports, where the drug or syringe can be inserted. As with anything outside of the body going in, it increases the risk of infection obviously. However, it is better than needles or the vascaths he had in his groin in the early days. It is the blue lumen that is infected. They are blue and yellow in Freds case due to being different sizes.
It is a common problem but if the infection is serious it may need to be removed, and a new one inserted.
This has also resulted in Fred having a presumably related stomach infection. Things like that are of concern in hospitals so Fred has been put into "quarantine" in that his room stays shut and the number of people who go in and out are reduced. This is called "barrier nursing".
Whoever is with him, Rachel or I, cannot leave the room unecessarily so it is a bit like a prison in there. You have to press the pager or poke your head out if you want something.
If this is the case my wanderings around the hospital will be severely curtailed. If the 'blog turns up in a very brief form, then I have texted Claire I expect with just a few words. She can be my ghost writer. If it is blank then I, or Claire, did not get a chance to post anything.
I met Emma today who had taken delivery of the business cards that advertise the Bone Marrow session on the 13th December. They are printed nicely and give all the relevant details about being a donor. They have a tiny little photograph of Fred, plus a discreet "inspired by Freddie Wills, age 8 months." They shall be given out as best we can. There are some posters on their way too, which might be similar.
Hopefully now that Freds infection has been identified we can concentrate on getting rid of the nasty bugs in his tummy.
Day 131 (Wed 15 Nov)
Thu, 11/16/2006 - 03:08 — endc011
Fred continues to be a bit gripey but Rachel says he seems to be better now.
He is smiling more and although his infection continues he seems more alert. He has had a number of visits by doctors today and had his GFR earlier. This is where he is given a radioactive isotope in the blood and they measure how well the kidneys process it out. It should indicate the efficiency of the kidneys.
He continues to have fluids put into him and he has not really been sick since rach started the little and often method.
His infection marker - the CRP - should be less than 10, but has now risen to 280. They have identified where the infection is, and it is related to his Hickma line. On the tube are lumen, or little ports where the drug or syringe can be inserted. As with anything outside of the body going in, it increases the risk of infection obviously. However, it is better than needles or the vascaths he had in his groin in the early days. It is the blue lumen that is infected. They are blue and yellow in Freds case due to being different sizes.
It is a common problem but if the infection is serious it may need to be removed, and a new one inserted.
This has also resulted in Fred having a presumably related stomach infection. Things like that are of concern in hospitals so Fred has been put into "quarantine" in that his room stays shut and the number of people who go in and out are reduced. Whoever is with him, Rachel or I, cannot leave the room unecessarily so it is a bit like a prison in there. You have to press the pager or poke your head out if you want something.
If this is the case my wanderings around the hospital will be curtailed. If the 'blog turns up in a very brief form, then I have texted Claire I expect with a few words. She can be my ghost writer.
I met Emma today who had taken delivery of the business cards that advertise the Bone Marrow session on the 13th December. They are printed nicely and give all the relevant details about being a donor. They have a tiny little photograph of Fred, plus a discreet "inspired by Freddie Wills, age 8 months." They shall be given out as best we can. there are some posters on their way too, which might be similar.
Hopefully now that Freds infection has been identified we can concentrate on getting rid of the nasty bugs in his tummy.
Day 130 (Tue 14 Nov)
Wed, 11/15/2006 - 01:34 — endc011
Last night was a long one in that Fred was very very unsettled due to his high temperature. No matter what they did, his temperature went up and down slowly. Just when you thought the problem was going away his temp would be 39.5c which is just over 103c.
It is not good for Fred and he would then fly into a frustrated rage. He would then drift off to sleep.
He has been quite settled for sometime now and not knowing where the infection is coming from means they cannot be too specific with anti-biotics. It might not even be something anti-b's can deal with, so is a worry.
He felt like a loaf of bread just out of the oven sometimes which was the most worrying, and how long he could sustain being that hot. I guess it was because the room, and I were colder than him.
During one of his bigger screams (when his face goes purple and his mouth just stays open without anything coming out...) I spied the root of the problem possibly.
Lurking on his bottom gum was a pair of little tooth pegs popping through. That immediately made me feel better as I now had some understanding as to why he was so enraged and upset. He has a fever too, but teething will exacerbate it, and will make him mightily miserable.
When I later told my mum and dad later, dad was chuffed to have reckoned this was what was wrong yesterday when they visited. I had given up looking as I thought it would be some time yet due to his treatment. Anyway, little teeth will mean he will start gnawing on things. He has a teething ring which goes in the fridge which he has just played with until now, so we can get that one chilled.
He does not have any neutrophils to fight infection at the moment, so is liable to infection. i think there is a chance he might have a source of infection here, and this might help them deal with it quicker.
He suddenly relaxes too, and sleeps for a few hours, but is sick a couple of times. Poor little Fred.
I nod off at just after four as I am worrying about him and his temperature, but it is dropping slowly.
By the morning he is quite calm, but still really hot. He looks very sad for himself, and is not our Fred. No great shouts, which is a bit worrying. He does manage a smile though occasionally.
He perks up a bit whilst I am preparing to head back once Rachel and June arrive. None of the staff are overly concerned at his temperature behaviour, so I reckon things are OK. If there were problems then we would know.
As I am leaving Kate (ward sister) gets a 'phone call from a member of the public who has read an article in the paper and wants to know about donating bone marrow. How he got through to the ward I do not know, but he is given Anthony Nolan Trusts details.
Rachel and June arrive and spend the day looking after Fred. It sounds like he is the same really, bobbing up and down, but is being looked after. He appreciates this and manages a few smiles.
The doctors, like Rachel and I, are concerned that he does not dehydrate, so he is put on a drip to replace that. Rachel has manage to feed him in small amounts so he retains all of it today, which is far better than I did. Little and often is the key by the look of it.
His weight has dropped a bit which is a disappointment, but he is chirpy.
Rachel and June have rustled up some gloves and shoes for him to keep his extremities warm. They are like ice, with his back and head roasting.
When I speak with Rachel I can hear him chattering in the background with the fan on in the room. He seems quite happy now, and the doctors seem pleased with him so far.
I hope Rachel and Fred have a good night and that he will sleep better. With a better food pattern today, the new blood he had, plus the fluids, I hope this will give him a bit of a kick start into getting better.
I spoke with a few people today about Fred's appearance in the paper. Abi my hair dresser was a the new stand when a couple in front commented on the paper and Fred's picture to her which was nice. Dawn was on checkout in Sainsburys and a few customers commented on him as they passed through the tills.
Perhaps it was Fred's ears burning yesterday?
Day 129 (Mon 13 Nov)
Tue, 11/14/2006 - 01:38 — endc011
Fred was still hot over night but slept well.
Today his temperature went up and down and he was happy for the most of it. He can have only a limited amount of paracetamol before he uses up his credits. He feels really hot at times and the thermometer shows him bob from 36c to 39c.
He is in his nappy all day and sits in his baby bouncer watching the world from his door way. he will nod off, then awaken feeling rather grotty.
My mum and dad visit and he behaves well. I think he is pleased to see then though and raises a few smiles before feeling a bit glum.
He has had his bloods checked and they will do other tests. Nothing back yet though and some take a few days.
He has run out of nappies and I get some plus some wipes as I am changing them far more often now. there is a hint of nappy rash brewing though it comes and goes without careful bum wiping and washing. No gripes from Fred.
He was sick earlier after a might bawling session. Afterwards he looked very relaxed and smiley. Hopefully we will be able to keep the temp under control. Fred has had a good run so far and these things are expected. His MRI scan was cancelled today as he was not well enough and needs a blood transfusion. Just waiting for the blood to arrive.
Today Fred has appeared in the Herald Express and the Western Morning News, in relation to a bone marrow donation session my employer is orgaininsing on the 13 December 2006. The following are links to the articles. I amnot "pointing" at Fred, merely scratching his chop when Claire took the photograph. There is a marked difference between the "before" picture and the one taken recently. Fred's hair has disappeared and has been replaced by an almost blonde fluff.
The Herald Link is (cut and paste possibly:
http://www.thisissouthdevon.co.uk/displayNode.jsp?nodeId=134822&command=displayContent&sourceNode=200313&home=yes&more_nodeId1=134831&contentPK=15933054
The Western Morning News link is:
http://www.thisisdevon.co.uk/displayNode.jsp?nodeId=143632&command=displayContent&sourceNode=142719&contentPK=15935497&folderPk=91672&pNodeId=201752
Hopefully those links will work.
I can hear Fred down the corridor so had better go and see what he is up to.
Day 128 (Sun 12 Nov)
Mon, 11/13/2006 - 05:35 — endc011
We had Fred stay overnight with us and he seemed to enjoy it.
We headed down to the hospital and Fred was placed back in his trusty bed. He had his bloods taken and we decided that we would have something to eat in the canteen as we had no need to go out.
Fred was OK to go out with but he was sleepy and so was I.
His platelet count was low so he had a transfusion of that in the afternoon. He is neutropenic once again and is at risk of infection.
True to form his temperature starts to rise in the afternoon and by 1900h it is just over 38c. He gets some paracetamol and the doctor is bleeped. She organises some antibiotics for the little chap and heads off. Fred is grumpy from then on, and his temp bobs up and down. He is very tired but does not want to sleep.
At the time of typing he has just nodded off but he is not interested in food.
At 0500h Monday morning he will be nil by mouth for at least six hours so I will try and get his feed in by 0430h. If he does not play ball then he has a long time on an empty stomach.
He will have a general anaesthetic for the MRI scan which is due at 1115h over in the BRI.
Rachel is away tonight and tomorrow night, and will be back with her mum June on Tuesday morning.
It is normally nice and quiet in the hospital and if Fred is a bit a dodgy then it is better to be here than up the road.
Saturday 11 November 2006
Day 127 (Sat 11 Nov)
Sat, 11/11/2006 - 22:52 — endc011
Last night was a peaceful one and we all awoke a bit later than we should have.
We need to pop in to the hospital this morning where they will take his bloods. As his counts are dropping there is a risk that his platelet level will be below 10. If that is the case he will need a transfusion today.
We have a quick chat with Jo his doc and then head out into town for some shopping. It is much colder today and there is a breeze. Fred is wrapped in his cosy-toe and gloves and sleeps on and off during the jaunt. Rachel is sorting some shopping so I wander around outside as the shops are getting more crowded, not only with people but more displays which we cannot fit through with the pram.
We get back and his platelets are at 20 which is good. We can head up the road now and so that will be better than one of us staying with Fred.
Two of the nurses are making a list of who you would like to take on a desert island. I managed three before we had to leave. Margaret Thatcher, Ronnie Corbett and Melinda Messenger....
Tonight we are having a mutton stew. Got all the bits and can clear out some of the vegetables in the fridge. Also making some dumplings as i have been deprived of these for some months.
Hopefully Fred will enjoy looking at a dumpling.
Day 126 (Fri 10 Nov)
Sat, 11/11/2006 - 00:10 — endc011
We had Fred with us last night and he behaved impeccably. He slept solidly through the night, but awoke earlier than normal.
We headed down to the hospital after breakfast and he needed his bloods taken. They did this and we were free to go.
Went and had some lunch and then did some shopping. He was very pensive in his little cart and watched everyone going by.
Today he is in his yellow and black striped tank top, with matching hat which June knitted him. He looks like a little bee. Sort of.
We come back and hear the bloods were fine and we can go back to the flat. His counts are falling now which is expected but hopefully they should increase in the next week.
He is due another MRI on Monday morning, and so I will take him down to that. They always said he would need another one sometime into his treatment.
I am not sure what is planned for him after that. We will be having a meeting to learn a bit more about the bone marrow process. The staff tend to tell you about things when you start to need to know, rather than all in one go. We know as much as we can about chemotherapy at the moment, and so learning about a new topic such as bone marrow transplants will be a new one to us.
We keep meaning to go and have a look around the Bone Marrow Transplant ward on the floor above. Fred has met some of the nurses from there in any case, but I understand that it is much much different up there.
Hopefully Fred will not have a temperature tonight as it is nice to have him watching the television with us in the evening before he goes off to bed.
Day 125 (Thu 09 Nov)
Fri, 11/10/2006 - 01:47 — endc011
Fred is doing well at the moment and has not any chemotherapy for a bit.
The doctors have agreed that he can pop out overnight whilst his blood count is on the up. However, with his last lot of chemo, they should drop again soon.
I get back mid afternoon and find Fred in bed,looking very pleased with himself. he has a new toy - a beanie bear, or Dalmatian actually - that has been named "Dotty" and matches his moo suit. There was a Dalmatian in the hospital today called Henrietta that visits regularly. Fred stayed in the safety of his cot though.
My mum and dad got Fred a cloth book to look at. Recently his fascination has been paper towels, which are OK but no match for a colourful book. As I type he is by me turning the pages and chewing the corners. He seems happy with it. He is reading labels now, the ones on his toys.
We will be walking up to the flat shortly as Rachel has gone down to the station with her mum.
Hopefully we will have a quiet night with him, and that his temperature will not rise.
Day 124 (Wed 08 Nov)
Thu, 11/09/2006 - 07:53 — endc011
I hear Fred had yet another restful night as did Rachel. He would have had his chemotherapy last night over three hours, and some more at 0900h this morning.
He was his normal self today, all chuckly and jolly. When I rang Rachel he was trying to grab and hold on to his feet and knees and trying to roll.
That was until he had his intra-muscular Asparaginase chemo injection in the thigh today. He did not like that one bit and shouted the hospital down when it happened and got very upset indeed. Luckily mum was on hand and comforted him. Being a brave little lad he sucked on his dummy solidly afterwards for a few minutes and then fell asleep.
Today I heard that my employer, Torbay Council, had liaised with the Anthony Nolan Trust about a staff and public "bone marrow donor session" at Torquay Town Hall. They will be holding the session on the 13th December 2006 at Torquay Town Hall all day and I will give further details again. Rachel and I were pleased to hear that 23 of my colleagues had put themselves forward to be screened and put on the register, all within a few hours of the "All Staff" email being sent to Council employees. Fred is mightily impressed at this level of commitment.
By agreeing to donate bone marrow at some time in the future you will give someone a chance that they will not have had if you had not stepped forward. The chances of being called are quite slim I think, but you never know. You cannot donate just for a particular person and have to agree that it your bone marrow, if required, can be used by anyone, anywhere. There is further information about bone marrow donation on the links I have created on the Home Page of this 'blog - i.e. The National Blood Service and the Anthony Nolan Trust.
As a result of the publicity for the public sessions I was contacted by our local newspaper who will try and raise public awareness about the sessions.
You cannot manufacture healthy bone marrow in a laboratory, so the only source is fellow humans, hence the need for volunteers.
His other day to day business is as normal and he was seen by the doctors who are pleased with his general well being.
Fred's weight is still 7.9kg and we need to get him over the 8kg threshold really. He is feeding well and tonight his evening meal was to be some pureed broccoli. Hopefully he will like this feast.
Hopefully Fred might be able to stay with us over the next night or two if he does not have any complications. However this latest bit of chemotherapy may result in him suffering the ulcers once again.
Fingers crossed for our little boy please.
Day 123 (Tue 07 Nov)
Wed, 11/08/2006 - 07:41 — endc011
Another good night with Fred. After his meds and chemotherapy hookup, he slept well.
In the early hours he made a few noises, so I scooped him up and cuddled him on the chair. He was very sleepy but managed to stay awake for a hug and a smile. After a bit he got a bit bored and wanted his bed again. Placed back he was fast asleep within seconds, all wrapped in his gro-bag.
I had a good nap again until 0630h when he stirred and was hungry. I changed his bum and fed him. His knack of sleep-drinking has not changed so cleared nearly two bottles in almost complete slumber.
Once back in he did not stir until 0830h, when he became very animated.
I sorted him and met Rachel at 1015h and then headed back to Paignton. It was foggy on the M5 but was clear of traffic. I spoke to my brother who was also on the M5 and saw him travelling in the opposite direction near Taunton.
Fred has had another good day and is currently having another flush of chemotherapy. He will have another one tomorrow. Then the problem of mouth ulcers will return though he will have some drugs to combat this hopefully.
Nothing much to report tonight, other than Rachel and Fred are in hospital. Fred will have his chemo this evening and then be prepared for the next lot twelve hours later. He has four in total in this batch. Tomorrow will be the rather painful intra-muscular Asparaginase chemotherapy drug. I think it feels like a "dead leg" on the thigh, but there is no anaesthetic avaliable.
Day 122 (Mon 06 Nov)
Tue, 11/07/2006 - 05:40 — endc011
Fred rose early for a feed and then went back to his slumber. Another quiet night for both of us, and once I had sorted various things I nodded off at 0700h until 0845H.
By that time the ward outside is buzzing with activity and people peer in, not wanting to disturb you, as they assume you are getting ready. Sadly, I am still trying to catch 40 winks, so I give up. They cannot see through the curtain in front of the door, but I can see large, looming silhouettes there which is off-putting.
Fred by now is picking up speed, so I have a quick wash with one ear open on him on the other side of the door.
Once the doors are open it is "all in" as the doc and nursing staff take over for the day. A student doc looks at him today too. I carry on tidying up and hide a dirty plate from last nights food, which I leave in the shower room, on Fred's pram.
My mum and dad are coming today and so Fred gets a wipe and a wash. He is due chemotherapy later this evening and so that is being organised by the staff.
Mum and dad arrive and as it is cold and misty, we stay in. Fred's infection marker - CRP - is now about 20 so it has come down, indicating the infection is subsiding. His temperature has stayed around the 37c mark which is normal for him.
Mum, Dad and I have lunch in the hospital canteen. Fred behaves in our absence and is very active with kicking his legs and trying to twist over, or grab things above him in the bed. He sits in his large rubber ring for a while and enjoys some time sitting on my lap, looking about. His neck muscles are still a bit feeble but he is starting to hold his head.
We are trying each day to make him hold his head weight by himself, although 5 minutes can be enough for him at a time. He tells us when it is uncomfortable.
Mum and Dad go, and I pop into town with them. When I get back Fred has been a pest by shouting and crying until someone comes in to see him. When they leave, he starts again. They decide to plop him in his pram, and sit him on the ward where he watches everyone going by. He is happy then. With the pram coming out of the shower room the dirty plate is exposed to everyone, and is a plate I had forgotten about. It is hastily washed in the kitchen.
Fred spends the rest of the day full of beans and is very very active and noisy. At around 1930h his batteries suddenly fail and he is fast asleep. I manage to do his eye drops so easily and change his nappy whilst he sleeps. He even gets put into his gro-bag without complaint.
It is a bit more difficult tonight getting him in the bag because he is plumbed up to the chemotherapy pump for the next few hours. I manage to get him sorted though.
As I am typing (2150h) Fred should be asleep still, and has finished his first bit chemo. He is having the lines flushed at the moment, although they will re-start chemo. tomorrow morning about 0645h, when I will be probably be just dozing.
Otherwise hopefully Fred will have a quiet night. Rachel is back tomorrow with her mum and I should head back down.
Day 121 (Sun 05 Nov)
Mon, 11/06/2006 - 18:18 — endc011
Rachel stayed with Fred overnight and he behaved well.
When I came in the morning we hoped to be able to head out into town for a bit and hopefully let him stay with us overnight. This would all depend on how his infection is being dealt with.
Not much to do really in the morning other than give him his meds, eye drops, feeds, then change him, before starting again.
The docs come in and say that Fred can go out today as he appears to be getting a bit better. We can also head back up to the flat tonight, but have to keep a close eye on his temp. If it goes above 37.5c then he should come back. They have stopped his antibiotics but he may need some more.
That device changes before we go out. His CRP (infection marker) is still at around a high 55, so he should stay in hospital tonight.
We head into town and get some stuff, and have some breakfast. The farmers market is on, and we were going to buy some sausages, but they had sold out. Next time.
When we get back we pop back to the flat. It is decided that Rachel might as well go back tonight as I will be in the hospital and it is supposed to be foggy on Monday morning.
She heads back in the late afternoon and I settle down with Fred. He is very good but stays awake later than normal.
He sleeps well during the night, as do I from 0400h onwards.
Day 120 (Sat 04 Nov)
Sun, 11/05/2006 - 00:19 — endc011
Fred settled for a while but continued to be restless and shout alot. He would quieten for a bit and then he would break out in to a roar. Most of the time he would be pleased with himself, but then he would start to get a bit upset and not settle.
This went on for a bit but he gradually settled down. Normally his batteries will run out at around 1900h or 2000h after a bit of resistance.
One of the other parents ideas has taken off, and an order for eight or nine curries has been placed and were due just before 2100h. I strolled into the dimmed ward and found a small group gathering, with a makeshift buffet table laden with Bombay mix, crackers and wine. It was rather dark in there with the only light coming from a battery powered pumpkin lantern on the table. There was another family in the cubicles who was not participating, so we moved into the play room.
This has lots of chairs and tables but they are only a foot of the ground.
By now Fred is getting more and more upset and tired so in between mouthfuls I keep an eye on Fred. All the other parents are doing the same. Fred at the time was having a blood transfusion so it would not have been practical to have him in with us.
The food was very good, and we tucked in naans, pickles and poppadoms, and slurped a little wine.
As Fred was getting angrier I headed back to his room at around 2130h. He continued to be restless and getting more and more upset. I fed him but he was still uncomfortable.
One of the nurses came in at around 2300h and said she would look after him on the nurses station as he clearly was getting hyperactive with his new blood. He disappeared out of view so I put my head down. At 0030h I heard him wail and went out to see what was up. He had nodded off for a little while, but had now woken up again, even angrier. I scooped him up and put him back in his bed.
After changing him I went down to the sluice room to leave his nappy when I passed the play room. There were still a couple of parents in there with empty wine bottles around them chatting away happily. There was not much wine that night between us all anyway.
Once Fred was given some Calpol he went to sleep instantly funnily enough. He got his eye drops and slept until about 0600h. I managed to sleep OK, but was a bit tired when I got up.
Fred has some more visitors today - Colin and Gaye, plus June who stayed another night rather than head home on the bus with a migraine.
They arrive and I head back to the flat for a quick kip. When they head into town with Rachel for lunch I decide to stay behind and read the paper and just watch the television.
Freds temperature is a little higher than normal at the moment but hanging around the 37.5c mark. Anything over 38c is of concern but he obviously has an infection.
Whilst he is happy and alert, when his blood results come back there is a way of seeing if he has an infection as it might not be obvious. Amongst all the other date is the CRP marker (or c-reactive protein I think) which if it less than 10 is OK. Fred's had climbed to 12 yesterday which was a slight indication, but today is 144. At least we know he an infection brewing and they are giving him anti-biotics to start to deal with it.
I assume that once it starts to come down then the infection is being dealt with.
Rachel will stay tonight with Fred. Hopefully he will behave himself a bit more tonight, or at least be less hyper. I would have thought he would be quite tired today as well.
Fred has had a few other visitors today in the form of some of the other parents and children. The toddlers on the ward tend to gravitate toward Fred so he is happy to meet and greet in his bed. One of the nurses from Intensive Care who cared for Fred is regularly here and pops in to see Fred, which she did this afternoon, and marvelled at his really chubby thighs and chops.
Rachel was walking in another part of the hospital when she bumped into one of the student nurses from Intensive Care - Faye. She looked after Fred with a colleague she was shadowing for a number of shifts. We have not seen her for a few months, but she remembered Rachel as well as Fred's name. She asked on his progress, and said she would try and visit sometime tomorrow. She visited once before about a fortnight after Fred had been transferred to Ward 34.
It is cold and bright and I am doing this before heading back up the hill with Rachel.
Day 119 (Fri 03 Nov)
Sat, 11/04/2006 - 04:09 — endc011
Fred stayed in at the hospital and was not feeling too good overnight. I think he was restless as Rachel did not sleep well in the hospital.
He was also sick this morning after he had some Calpol, but has slowly improved during the day. His temperature bobs up and down and there is not any real indication as to the source of the infection.
I travel back and get here around 1600h. Fred is looking rosy-cheeked and very smiley. He is kicking his legs out alot and grabbing his feet. He has also started scratching his nails on the bed clothes, which is the noise I kept hearing the other night.
June is due to go back on the coach this afternoon, but does not feel to good either. It makes sense for her to stay another night with Rachel, as I will stay here with Fred. They set off in the gloom with the pram full of bags and belongings. Easier than carrying them up the hill.
I potter around and feed Fred, giving him his eye drops as well. One of the families in the main ward is from Newton Abbot, and has come up with the idea of a curry night here, as it Friday. Seems like a good idea to me and I have not planned what to eat. She 'phones it through and it should be here sometime soon.
I am not sure how many of us are eating curries but no doubt it will stink the ward out. I also here there are some bottles of wine floating about. Sounds like an old school disco as I guess its an alcohol free zone on the wards.
Fred has been quietly watching the television in the dark and I must get him off to sleep.
He is having a blood transfusion at the moment, so will be even pinker in the morning. Hopefully he will cool down again.
The heating has come back on in the last day or two as it was getting a bit silly at night. I just overheard one of the nurses saying that they had rung Estates again about the ward being cold, to which the response was "well it is cold outside." It is actually a bit warm in his room now.
Sounds like my office?
Hopefully he will have a good night without too many incidents. He does need his sleep to help him grow, and if he is feeling poorly it is better he is asleep than awake.
Update of... (Day 118 (Thu 02 Nov)
Fri, 11/03/2006 - 07:42 — endc011
Shortly after I posted the 'blog this evening I had a 'phone call from Rachels mum to say that Fred had been taken into hospital as he became unwell, and that his temperature rose rapidly over 39c. He had become upset and fractious.
Once he was down there they gave him some paracetamol and some other drugs and his temperature started to fall. When Jamie gave an antibiotic via his Hickman line, he was a bit sick too, which apparently is an indication that he might have in infection in the line.
His temperature could also indicate teething but there is not any indication that teeth are coming through. The other evening I saw him biting rapidly, rather than chewing, on his dummy which might be another indication teeth are coming.
They have given him some high strength antibiotics within the last few minutes so hopefully that will address any infection. The difficulty is knowing what the infection relates, which in turn dictates the type of antibiotic.
Hannah the doctor was not too concerned at this as it is expected sometimes and Fred has very been lucky so far. The hope is that he will sort himself out so that it does not compromise the next session of chemotherapy on Monday, as it is important to stick to the protocol as closely as possible.
Rachel has just said (2345h) that his temperature has now gone from over 39c down to 37.9c so hopefully the trend will continue. He is now asleep covered with a light cotton blanket.
This is one of the things that keeps you on your toes, as these complications can multiply rapidly into things more serious. Such an occurance was another reason why we were hesitant last weekend about coming back, but then he was in a better condition blood-wise as he had the neutrofils to combat infection. The last set of chemotherapy would have deliberatly killed those off in the last day or two, and they will continue to diminish whilst he is having this batch of chemotherapy.
Rachel was getting ready to bed down in the hospital whilst he was asleep so i do not know much more.
I hope they will both have a quiet night and that the antibiotics will do their job overnight.
Sat, 11/11/2006 - 22:52 — endc011
Last night was a peaceful one and we all awoke a bit later than we should have.
We need to pop in to the hospital this morning where they will take his bloods. As his counts are dropping there is a risk that his platelet level will be below 10. If that is the case he will need a transfusion today.
We have a quick chat with Jo his doc and then head out into town for some shopping. It is much colder today and there is a breeze. Fred is wrapped in his cosy-toe and gloves and sleeps on and off during the jaunt. Rachel is sorting some shopping so I wander around outside as the shops are getting more crowded, not only with people but more displays which we cannot fit through with the pram.
We get back and his platelets are at 20 which is good. We can head up the road now and so that will be better than one of us staying with Fred.
Two of the nurses are making a list of who you would like to take on a desert island. I managed three before we had to leave. Margaret Thatcher, Ronnie Corbett and Melinda Messenger....
Tonight we are having a mutton stew. Got all the bits and can clear out some of the vegetables in the fridge. Also making some dumplings as i have been deprived of these for some months.
Hopefully Fred will enjoy looking at a dumpling.
Day 126 (Fri 10 Nov)
Sat, 11/11/2006 - 00:10 — endc011
We had Fred with us last night and he behaved impeccably. He slept solidly through the night, but awoke earlier than normal.
We headed down to the hospital after breakfast and he needed his bloods taken. They did this and we were free to go.
Went and had some lunch and then did some shopping. He was very pensive in his little cart and watched everyone going by.
Today he is in his yellow and black striped tank top, with matching hat which June knitted him. He looks like a little bee. Sort of.
We come back and hear the bloods were fine and we can go back to the flat. His counts are falling now which is expected but hopefully they should increase in the next week.
He is due another MRI on Monday morning, and so I will take him down to that. They always said he would need another one sometime into his treatment.
I am not sure what is planned for him after that. We will be having a meeting to learn a bit more about the bone marrow process. The staff tend to tell you about things when you start to need to know, rather than all in one go. We know as much as we can about chemotherapy at the moment, and so learning about a new topic such as bone marrow transplants will be a new one to us.
We keep meaning to go and have a look around the Bone Marrow Transplant ward on the floor above. Fred has met some of the nurses from there in any case, but I understand that it is much much different up there.
Hopefully Fred will not have a temperature tonight as it is nice to have him watching the television with us in the evening before he goes off to bed.
Day 125 (Thu 09 Nov)
Fri, 11/10/2006 - 01:47 — endc011
Fred is doing well at the moment and has not any chemotherapy for a bit.
The doctors have agreed that he can pop out overnight whilst his blood count is on the up. However, with his last lot of chemo, they should drop again soon.
I get back mid afternoon and find Fred in bed,looking very pleased with himself. he has a new toy - a beanie bear, or Dalmatian actually - that has been named "Dotty" and matches his moo suit. There was a Dalmatian in the hospital today called Henrietta that visits regularly. Fred stayed in the safety of his cot though.
My mum and dad got Fred a cloth book to look at. Recently his fascination has been paper towels, which are OK but no match for a colourful book. As I type he is by me turning the pages and chewing the corners. He seems happy with it. He is reading labels now, the ones on his toys.
We will be walking up to the flat shortly as Rachel has gone down to the station with her mum.
Hopefully we will have a quiet night with him, and that his temperature will not rise.
Day 124 (Wed 08 Nov)
Thu, 11/09/2006 - 07:53 — endc011
I hear Fred had yet another restful night as did Rachel. He would have had his chemotherapy last night over three hours, and some more at 0900h this morning.
He was his normal self today, all chuckly and jolly. When I rang Rachel he was trying to grab and hold on to his feet and knees and trying to roll.
That was until he had his intra-muscular Asparaginase chemo injection in the thigh today. He did not like that one bit and shouted the hospital down when it happened and got very upset indeed. Luckily mum was on hand and comforted him. Being a brave little lad he sucked on his dummy solidly afterwards for a few minutes and then fell asleep.
Today I heard that my employer, Torbay Council, had liaised with the Anthony Nolan Trust about a staff and public "bone marrow donor session" at Torquay Town Hall. They will be holding the session on the 13th December 2006 at Torquay Town Hall all day and I will give further details again. Rachel and I were pleased to hear that 23 of my colleagues had put themselves forward to be screened and put on the register, all within a few hours of the "All Staff" email being sent to Council employees. Fred is mightily impressed at this level of commitment.
By agreeing to donate bone marrow at some time in the future you will give someone a chance that they will not have had if you had not stepped forward. The chances of being called are quite slim I think, but you never know. You cannot donate just for a particular person and have to agree that it your bone marrow, if required, can be used by anyone, anywhere. There is further information about bone marrow donation on the links I have created on the Home Page of this 'blog - i.e. The National Blood Service and the Anthony Nolan Trust.
As a result of the publicity for the public sessions I was contacted by our local newspaper who will try and raise public awareness about the sessions.
You cannot manufacture healthy bone marrow in a laboratory, so the only source is fellow humans, hence the need for volunteers.
His other day to day business is as normal and he was seen by the doctors who are pleased with his general well being.
Fred's weight is still 7.9kg and we need to get him over the 8kg threshold really. He is feeding well and tonight his evening meal was to be some pureed broccoli. Hopefully he will like this feast.
Hopefully Fred might be able to stay with us over the next night or two if he does not have any complications. However this latest bit of chemotherapy may result in him suffering the ulcers once again.
Fingers crossed for our little boy please.
Day 123 (Tue 07 Nov)
Wed, 11/08/2006 - 07:41 — endc011
Another good night with Fred. After his meds and chemotherapy hookup, he slept well.
In the early hours he made a few noises, so I scooped him up and cuddled him on the chair. He was very sleepy but managed to stay awake for a hug and a smile. After a bit he got a bit bored and wanted his bed again. Placed back he was fast asleep within seconds, all wrapped in his gro-bag.
I had a good nap again until 0630h when he stirred and was hungry. I changed his bum and fed him. His knack of sleep-drinking has not changed so cleared nearly two bottles in almost complete slumber.
Once back in he did not stir until 0830h, when he became very animated.
I sorted him and met Rachel at 1015h and then headed back to Paignton. It was foggy on the M5 but was clear of traffic. I spoke to my brother who was also on the M5 and saw him travelling in the opposite direction near Taunton.
Fred has had another good day and is currently having another flush of chemotherapy. He will have another one tomorrow. Then the problem of mouth ulcers will return though he will have some drugs to combat this hopefully.
Nothing much to report tonight, other than Rachel and Fred are in hospital. Fred will have his chemo this evening and then be prepared for the next lot twelve hours later. He has four in total in this batch. Tomorrow will be the rather painful intra-muscular Asparaginase chemotherapy drug. I think it feels like a "dead leg" on the thigh, but there is no anaesthetic avaliable.
Day 122 (Mon 06 Nov)
Tue, 11/07/2006 - 05:40 — endc011
Fred rose early for a feed and then went back to his slumber. Another quiet night for both of us, and once I had sorted various things I nodded off at 0700h until 0845H.
By that time the ward outside is buzzing with activity and people peer in, not wanting to disturb you, as they assume you are getting ready. Sadly, I am still trying to catch 40 winks, so I give up. They cannot see through the curtain in front of the door, but I can see large, looming silhouettes there which is off-putting.
Fred by now is picking up speed, so I have a quick wash with one ear open on him on the other side of the door.
Once the doors are open it is "all in" as the doc and nursing staff take over for the day. A student doc looks at him today too. I carry on tidying up and hide a dirty plate from last nights food, which I leave in the shower room, on Fred's pram.
My mum and dad are coming today and so Fred gets a wipe and a wash. He is due chemotherapy later this evening and so that is being organised by the staff.
Mum and dad arrive and as it is cold and misty, we stay in. Fred's infection marker - CRP - is now about 20 so it has come down, indicating the infection is subsiding. His temperature has stayed around the 37c mark which is normal for him.
Mum, Dad and I have lunch in the hospital canteen. Fred behaves in our absence and is very active with kicking his legs and trying to twist over, or grab things above him in the bed. He sits in his large rubber ring for a while and enjoys some time sitting on my lap, looking about. His neck muscles are still a bit feeble but he is starting to hold his head.
We are trying each day to make him hold his head weight by himself, although 5 minutes can be enough for him at a time. He tells us when it is uncomfortable.
Mum and Dad go, and I pop into town with them. When I get back Fred has been a pest by shouting and crying until someone comes in to see him. When they leave, he starts again. They decide to plop him in his pram, and sit him on the ward where he watches everyone going by. He is happy then. With the pram coming out of the shower room the dirty plate is exposed to everyone, and is a plate I had forgotten about. It is hastily washed in the kitchen.
Fred spends the rest of the day full of beans and is very very active and noisy. At around 1930h his batteries suddenly fail and he is fast asleep. I manage to do his eye drops so easily and change his nappy whilst he sleeps. He even gets put into his gro-bag without complaint.
It is a bit more difficult tonight getting him in the bag because he is plumbed up to the chemotherapy pump for the next few hours. I manage to get him sorted though.
As I am typing (2150h) Fred should be asleep still, and has finished his first bit chemo. He is having the lines flushed at the moment, although they will re-start chemo. tomorrow morning about 0645h, when I will be probably be just dozing.
Otherwise hopefully Fred will have a quiet night. Rachel is back tomorrow with her mum and I should head back down.
Day 121 (Sun 05 Nov)
Mon, 11/06/2006 - 18:18 — endc011
Rachel stayed with Fred overnight and he behaved well.
When I came in the morning we hoped to be able to head out into town for a bit and hopefully let him stay with us overnight. This would all depend on how his infection is being dealt with.
Not much to do really in the morning other than give him his meds, eye drops, feeds, then change him, before starting again.
The docs come in and say that Fred can go out today as he appears to be getting a bit better. We can also head back up to the flat tonight, but have to keep a close eye on his temp. If it goes above 37.5c then he should come back. They have stopped his antibiotics but he may need some more.
That device changes before we go out. His CRP (infection marker) is still at around a high 55, so he should stay in hospital tonight.
We head into town and get some stuff, and have some breakfast. The farmers market is on, and we were going to buy some sausages, but they had sold out. Next time.
When we get back we pop back to the flat. It is decided that Rachel might as well go back tonight as I will be in the hospital and it is supposed to be foggy on Monday morning.
She heads back in the late afternoon and I settle down with Fred. He is very good but stays awake later than normal.
He sleeps well during the night, as do I from 0400h onwards.
Day 120 (Sat 04 Nov)
Sun, 11/05/2006 - 00:19 — endc011
Fred settled for a while but continued to be restless and shout alot. He would quieten for a bit and then he would break out in to a roar. Most of the time he would be pleased with himself, but then he would start to get a bit upset and not settle.
This went on for a bit but he gradually settled down. Normally his batteries will run out at around 1900h or 2000h after a bit of resistance.
One of the other parents ideas has taken off, and an order for eight or nine curries has been placed and were due just before 2100h. I strolled into the dimmed ward and found a small group gathering, with a makeshift buffet table laden with Bombay mix, crackers and wine. It was rather dark in there with the only light coming from a battery powered pumpkin lantern on the table. There was another family in the cubicles who was not participating, so we moved into the play room.
This has lots of chairs and tables but they are only a foot of the ground.
By now Fred is getting more and more upset and tired so in between mouthfuls I keep an eye on Fred. All the other parents are doing the same. Fred at the time was having a blood transfusion so it would not have been practical to have him in with us.
The food was very good, and we tucked in naans, pickles and poppadoms, and slurped a little wine.
As Fred was getting angrier I headed back to his room at around 2130h. He continued to be restless and getting more and more upset. I fed him but he was still uncomfortable.
One of the nurses came in at around 2300h and said she would look after him on the nurses station as he clearly was getting hyperactive with his new blood. He disappeared out of view so I put my head down. At 0030h I heard him wail and went out to see what was up. He had nodded off for a little while, but had now woken up again, even angrier. I scooped him up and put him back in his bed.
After changing him I went down to the sluice room to leave his nappy when I passed the play room. There were still a couple of parents in there with empty wine bottles around them chatting away happily. There was not much wine that night between us all anyway.
Once Fred was given some Calpol he went to sleep instantly funnily enough. He got his eye drops and slept until about 0600h. I managed to sleep OK, but was a bit tired when I got up.
Fred has some more visitors today - Colin and Gaye, plus June who stayed another night rather than head home on the bus with a migraine.
They arrive and I head back to the flat for a quick kip. When they head into town with Rachel for lunch I decide to stay behind and read the paper and just watch the television.
Freds temperature is a little higher than normal at the moment but hanging around the 37.5c mark. Anything over 38c is of concern but he obviously has an infection.
Whilst he is happy and alert, when his blood results come back there is a way of seeing if he has an infection as it might not be obvious. Amongst all the other date is the CRP marker (or c-reactive protein I think) which if it less than 10 is OK. Fred's had climbed to 12 yesterday which was a slight indication, but today is 144. At least we know he an infection brewing and they are giving him anti-biotics to start to deal with it.
I assume that once it starts to come down then the infection is being dealt with.
Rachel will stay tonight with Fred. Hopefully he will behave himself a bit more tonight, or at least be less hyper. I would have thought he would be quite tired today as well.
Fred has had a few other visitors today in the form of some of the other parents and children. The toddlers on the ward tend to gravitate toward Fred so he is happy to meet and greet in his bed. One of the nurses from Intensive Care who cared for Fred is regularly here and pops in to see Fred, which she did this afternoon, and marvelled at his really chubby thighs and chops.
Rachel was walking in another part of the hospital when she bumped into one of the student nurses from Intensive Care - Faye. She looked after Fred with a colleague she was shadowing for a number of shifts. We have not seen her for a few months, but she remembered Rachel as well as Fred's name. She asked on his progress, and said she would try and visit sometime tomorrow. She visited once before about a fortnight after Fred had been transferred to Ward 34.
It is cold and bright and I am doing this before heading back up the hill with Rachel.
Day 119 (Fri 03 Nov)
Sat, 11/04/2006 - 04:09 — endc011
Fred stayed in at the hospital and was not feeling too good overnight. I think he was restless as Rachel did not sleep well in the hospital.
He was also sick this morning after he had some Calpol, but has slowly improved during the day. His temperature bobs up and down and there is not any real indication as to the source of the infection.
I travel back and get here around 1600h. Fred is looking rosy-cheeked and very smiley. He is kicking his legs out alot and grabbing his feet. He has also started scratching his nails on the bed clothes, which is the noise I kept hearing the other night.
June is due to go back on the coach this afternoon, but does not feel to good either. It makes sense for her to stay another night with Rachel, as I will stay here with Fred. They set off in the gloom with the pram full of bags and belongings. Easier than carrying them up the hill.
I potter around and feed Fred, giving him his eye drops as well. One of the families in the main ward is from Newton Abbot, and has come up with the idea of a curry night here, as it Friday. Seems like a good idea to me and I have not planned what to eat. She 'phones it through and it should be here sometime soon.
I am not sure how many of us are eating curries but no doubt it will stink the ward out. I also here there are some bottles of wine floating about. Sounds like an old school disco as I guess its an alcohol free zone on the wards.
Fred has been quietly watching the television in the dark and I must get him off to sleep.
He is having a blood transfusion at the moment, so will be even pinker in the morning. Hopefully he will cool down again.
The heating has come back on in the last day or two as it was getting a bit silly at night. I just overheard one of the nurses saying that they had rung Estates again about the ward being cold, to which the response was "well it is cold outside." It is actually a bit warm in his room now.
Sounds like my office?
Hopefully he will have a good night without too many incidents. He does need his sleep to help him grow, and if he is feeling poorly it is better he is asleep than awake.
Update of... (Day 118 (Thu 02 Nov)
Fri, 11/03/2006 - 07:42 — endc011
Shortly after I posted the 'blog this evening I had a 'phone call from Rachels mum to say that Fred had been taken into hospital as he became unwell, and that his temperature rose rapidly over 39c. He had become upset and fractious.
Once he was down there they gave him some paracetamol and some other drugs and his temperature started to fall. When Jamie gave an antibiotic via his Hickman line, he was a bit sick too, which apparently is an indication that he might have in infection in the line.
His temperature could also indicate teething but there is not any indication that teeth are coming through. The other evening I saw him biting rapidly, rather than chewing, on his dummy which might be another indication teeth are coming.
They have given him some high strength antibiotics within the last few minutes so hopefully that will address any infection. The difficulty is knowing what the infection relates, which in turn dictates the type of antibiotic.
Hannah the doctor was not too concerned at this as it is expected sometimes and Fred has very been lucky so far. The hope is that he will sort himself out so that it does not compromise the next session of chemotherapy on Monday, as it is important to stick to the protocol as closely as possible.
Rachel has just said (2345h) that his temperature has now gone from over 39c down to 37.9c so hopefully the trend will continue. He is now asleep covered with a light cotton blanket.
This is one of the things that keeps you on your toes, as these complications can multiply rapidly into things more serious. Such an occurance was another reason why we were hesitant last weekend about coming back, but then he was in a better condition blood-wise as he had the neutrofils to combat infection. The last set of chemotherapy would have deliberatly killed those off in the last day or two, and they will continue to diminish whilst he is having this batch of chemotherapy.
Rachel was getting ready to bed down in the hospital whilst he was asleep so i do not know much more.
I hope they will both have a quiet night and that the antibiotics will do their job overnight.
Thursday 2 November 2006
Day 118 (Thu 02 Nov)
Fri, 11/03/2006 - 05:56 — endc011
I awoke this morning and had a nice hot bath. We are on a water meter now but did not care. It is clearly cold outside and that is another indication the seasons are changing rapidly.
I spoke with Rachel and there was a frost in Bristol last night. At the time of the 'phone call she and her mum were making their way up to Clifton Village which is probably a 40 minute walk away. As it was cold Fred was double wrapped in his cosy-toe and blankets and was happily peering out in the bright sunlight.
I guess they finally made it to the shops which is a nice collection of independent shops and little lanes which are interesting to explore.
I did not a great deal but tidied and sorted some things on the computer.
I spoke again with Rachel and Fred has had a busy day. He got a bit gripey later in the evening but fell asleep instantly when put in his cot. He slept from 2000h last night to 0600h this morning which was good for all concerned.
Tomorrow he will pop back into hospital where I suppose he will be checked over for the weekend. Hopefully they will let him out for the weekend before he is back on Ward 34 for his block of four chemotherapy sessions next week. This session will likely see all his protection drop once more. The hair that has grown back (now including his mega eye lashes) is likely to fall out again, but might not. The hair can come back totally different than before apparently. It could be blonde or ginger, curly or straight. At the moment it has come back a second time as dark, with a possible wave to it. Who knows next time?
I shall travel back tomorrow and see little man once again. The weather looks bright but cold for the weekend.
Day 117 (Wed 01 Nov)
Thu, 11/02/2006 - 05:07 — endc011
Fred and I enjoyed a quiet night last night once again, in the confines of the hospital. He was due two more sessions of chemotherapy, one starting at about 1900h for three hours, followed by another this morning commencing at about 0600h.
The M and S curry was not bad at all, and I found a naan bread in the 'fridge from a few days ago which was revitalised in the microwave with a bit of water.
The pump ticks away delivering its potency as usual. As with all chemotherapy drugs it is treated with caution by the staff, who wear protective clothing whilst preparing it, as well as installing it. Goggles, full arm sleeves as well as the normal gloves and polythene apron are worn. This is due to the toxicity of the drug, and how it could affect a healthy persons blood cells if they came into contact with it.
The same still goes for us when we deal with any of his body fluids, more predominantly changing nappies, but also if he sicks or wees on us. Normally a tissue or wipe would suffice, but we should get the gloves on first which can be a pain, especially if they are not to hand and things are happening quickly. Usually they are, as we have got used to it now.
He also continues with his eye care in the form of drops, but now an ointment. The drops are every two hours but overnight it is the ointment which is applied. This is mainly to make life easier for everyone, as the two hour drops would cause him more disturbance, as well as us and the staff. The ointment should last the night so he can get some kip.
The drug he is having - Cytarabine - can cause crystals to form in the eyes occasionally, and so this should remove that danger. I spoke with the nurse about it and she said that it only usually occurs if the drops/ointment are not applied diligently, but if you take short cuts then it can be really nasty. She has only seen one case though.
As he wakes for a feed in the night, his old peepers shed the ointment, so I give him some drops again at 0600h just to tide him over until the next lot. We all can do wthout eye problems.
I get a good last few hours sleep, but I am woken by the nurses putting the early morning chemotherapy on again.
I decide to get up and potter about, and have a wash. Fred is making his usual sounds through the en-suite door, but once he realises I am awake properly now, he drifts off back to have another sleep for a bit.
Last night I spoke with the Hotel Services staff who do the cleaning and food service. I did not realise that Fred can have "real" meals that are pureed by the kitchen, and then frozen for re-heating. Anything goes, and there is not any salt or other nasties added. I suppose it is for patients who need pureed food, but I did not think that Fred would qualify for such gourmet delights.
It comes in separate portions so he can have a little bit of each once it cools. The dietitian reckoned it would be worth a try so we will do that.
Rachel and June arrive at the normal time so I jump into the car and head back. Fred will be pleased to see them again.
The weather is really sunny but cold today. Last night it was cold as the heating has yet to be fired up. Fred had four blankets and a hat to keep him warm.
As I pass by Torquay I meet up with some colleagues for lunch which was nice. I was not sure of my timings today, but it worked out well if not a bit short arranged. I later meet up with Amanda and James at her mum and dads. I have not seen James for a few weeks now and he is growing fast. He is a few weeks younger than Fred and is just as dribbly, with the soggiest of hands too.
Mum and dad are fine and I collect my post before plodding home via Three Beaches Wines Store. Lyn and Paul have had a collecting jar on the counter for some while now and more recently have had a photograph of Fred on it. See the photograph in the gallery. From that small tin, customers and staff raised £80.00 for CLIC which will be put to good use soon, with some of the other money raised. My office has raised £125.00 I think, or more too. There has been a number of cake and book sales which have bolstered the cause. Rachel and I, plus Freddie will decide carefully how it will be donated to CLIC as they have helped us so much over the last few months. We do not want it to disappear into the corporate charity pot.
Rachel, her mum and friends will be having a coffee morning too on the 24 November 2006 in Chagford. Both of them have been making scarves, cards and other items for sale as well as taking delivery of other interesting items in time for Christmas. Some of the scarves (which are hairy wool ones in lots of different colours) have sold in the hospital being bought by the nursing staff once they see them. The amount of stuff made is quite amazing.
Tonight I am watching television at home, and alone :(
I later hear that Fred is allowed out from the hospital until Friday, before the doctors want to see him again. On Monday he starts another session of chemotherapy, similar to the on he had in the last few days. His eye drops will last for five days after the last treatment.
I never thought that in the "Archive" section of the 'blog (Home Page, right hand side) we would ever get to the number of months we have now. When I started the 'blog I knew it was an open ended thing but time has flown, and we are now in November - I am still typing away each day, with Frederick's progress. I think we have come a long way since Day 1 (or Day 0?) - July 8 2006.
It was very hot and sticky back in those days and shorts were what I had to wear. Windows open in the flat and hospital and sunglasses when out and about. Now it is big coats and hats, and I have got my gloves out. We used to be able to leave Intensive Care at 2200h and walk home when it was light, and was still muggy.
Since then new people have come in, and new people gone again, all with their own stories, and were all as worried as us in the early days, and after. We have sort of got used to the routine now, and Fred seems to be dealing with it as best he can.
Day 116 (Tue 31 Oct)
Wed, 11/01/2006 - 03:39 — endc011
Fred nodded off at 2145h last night and did not really wake until 0630h for a brief mumble. He was still tired so returned to his slumber, which enabled me to do same. A bit later I woke to read and listen to the news. All rather relaxing. Normally I am tired and have not slept well, and Fred is restless too. He must have been tired.
The nurses came in during the night to disconnect the chemotherapy pump that was running, and check him regularly. He did not stir and even when they started to put eye drops in he dad not wake. He will have these drops during the current course of chemo.
In the early hours of the morning he was re-plumbed to the machine for the next dose of chemotherapy. This also goes on for three hours and by late morning he is free to go. I have a few things to do, and I have a chat with the dietitian. At the moment Fred weighs 7.7kg with a target weight of 8kg, so he is heading that way slowly.
We pop into town but the weather is not very good looking so I do not stray far. Spicy noodles for lunch and which are ones I have not tried before.
The rest of the afternoon is dealing with Fred and heading back to the flat to get some things. Then back to the hospital, for some more chemotherapy. This will go on for a couple of weeks.
Fred is quite unsettled early evening and is not his usual self. He settles after a long cuddle with me and is plopped back into his gro-bag. After some protestation he is fast asleep.
Today is Hallow e'en and the kids in the hospital have been making things and costumes. The canteen was decorated with more cobwebs and spiders. I had some breakfast in there, and it was sort of jolly. The kitchen staff came around later to scare the children but Fred was having none of it. Quite literally really, as he was too small for any of the treats they were giving away.
I am getting settled in to Fred sleeping again all that time, but we will see. I have bought a Marks and Spencers curry and rice tonight as I have yet to find anything that goes in a microwave tasty. I am reliably informed that the curry will be good, so I managed to queue with the commuting masses for a good fifteen minutes. I hope it is worth it.
Day 115 (Mon 30 Oct)
Tue, 10/31/2006 - 04:04 — endc011
After the weekends excitement we are back now, with it being just a memory. It was easy to switch back to hospital mode without too much trouble. Fred knows this as his second (or now first?) home. Either way we got back to Bristol by about 1730h and unpacked our bits and did some washing.
Rachel heads back to Devon early today and I have a bit of a lie in, as does Fred. He is a bit less settled than the last couple of nights but he is playful. Thankfully Rach has packed the pram with all I need, and all I do is try and wheel it down the road. It is loaded with all his meds and new milk (5.5kg worth) plus all the glass milk bottles that have been used over the weekend. I think they get recycled.
I get in and the staff are pleased to see Fred and enquire about his weekend off. It was good to explain to them all the things we did, all of which were things we used to do regularly.
I wheel him in his room which looks tidy. More careful examination reveals the television has vanished, his scales, and more curiously the clock over his bed. I ask the staff who know nothing about it but I later learn some of the TVs were taken somewhere else. As for the clock no one knows.
Fred has his bloods taken and I eventually get sorted to take him to town to meet my mum and dad who are visiting. We have a look around and head out for lunch. Whilst we are there two separate people come up to look at Fred and we chat about him. He is looking particularly cute today.
After that we troop about the town and it starts to drizzle a bit. Dad is again in control of Fred's chariot. Fred is under the polythene cover and snoring.
They eventually head off and so I go back to the flat to get some gear for tonight.
I come back in and get Fred organised. He is due his high dose Cytarabine tonight for the next four days. He is OK to have this now as all his counts have shot up, as expected. He is plumbed in to the pump and is fast asleep. This time he gets eye drops every two hours, so as to ward off any eye infections. He had some on Intensive Care, but it was a gel to stop his eyes from drying. He receives the drops without stirring one bit. Thankfully they will be doing the drops through the night.
Earlier the porter came with a portable TV to replace the shiny silver one I had before. I recognised this as the one I hoofed out a few months ago as it did not work. I left it where it was and decided I would read my book.
Later on, I sitting in the darkened room staring into space thinking what to eat, when Kate the Ward Sister asked why I was not watching Coronation Street. I explained what had happened and in a few minutes a TV had arrived from one of the other closed beds. I can now watch my TV tonight as well as the news in the morning.
Fred is now fast asleep and I will wake him later to feed him and put him in his gro-bag. Hopefully he will have a peaceful night with this drug, though it is more potent than before.
Day 114 (Sun 29 Oct)
Sun, 10/29/2006 - 18:21 — endc011
Yesterday was a really relaxing day for us all, and Fred once again slept like a baby.
We are heading back today so I am listening to the Archers, and Fred is having his own lie in. He is in some fleecy blue pyjamas, and with the heating on in the room is very comfortable indeed.
I am eating the last bit of turkey and ham pie we had last night. Have not had a shop bought pie so nice for ages, though it was from the butchers in Preston. He said he had made it that morning and there would not be any "air gaps" in the filling. Have not found any yet.
We will load all his stuff back up and it is lunch at grannies. I hear it is a bit of beef.
The clocks have gone back. All the clocks have stopped in our house so we do not have to do much other than the one in the bathroom.
Day 113 (Sat 28 Oct)
Sun, 10/29/2006 - 06:02 — endc011
Just as I was finishing last evenings 'blog the nursing staff asked whether we would like to return to Torbay for the weekend, as Fred was well enough, as his bloods had come back all in order. His counts are up so he is able to deal with infection better now than recently, and he is fine all 'round.
They said that he does not need to be back until Monday PM for any further treatment so really we could go there and then. This was a bit of a shock for us, as we did not reckon on this situation. We chatted it through and they rang through to Torbay Hospital to advise them that Fred would shortly be "in their area" and arranged details between each other if Fred encountered problems. Our main fears are Fred becoming ill outside of his normal hospital due to high temperature or a line infection..
We scooped up the various things that accompany Fred nowadays and at 1830h headed over the Clifton Suspension Bridge, and joined the south bound M5 home. In the rain.
The last time Fred used this long long stretch of road was when he was with the retrieval team in an ambulance coming up here on blues and twos in early July, and being dangerously ill.
We got back at around 2030h and he settled well in his faithful armchair that had remained in the corner of the sitting room. He watched television whilst we pottered around him. We ordered a curry that was delivered and relaxed at home for the first time in four months.
He slept really well in his cot and rose at 0530h for his feed. Then he was asleep for the next few hours whilst we slowly got up. I had my bath in deep hot water whilst listening to the radio.
We went over to my mum and dads with Fred and had some breakfast. The Gramps Wills were entertained by Fred for a while and dad had a cuddle with the Little Man. Fred was on form for them both.
We then popped over to see Wayne and Claire for a bit and he go some extra cuddles, for which he was grateful.
From there we went into town and did all the things we would normally do on a Saturday with Fred. It was good to have him back home again and it did not seem he had been away at all. All those months in hospital disappeared for a short while.
We popped back into mum and dads at the end of the afternoon and Fred fell asleep on the living room floor on a towel. He had spent quite a while kicking his legs this afternoon and so contentedly fell asleep in front of everyone.
I spoke to our friend Dawn and we chatted about Fred being home. They came over in the evening for an impromptu bite to eat and a drink and it was a really good night. One of Fred's biggest fans - Emily - came along later on too, and we had a lovely evening.
Fred has had the best "normal" day today ever and had enjoyed the change immensely. This was a day that, back in early July was he was admitted to Bristols Intensive Care Unit, we did not think we would ever see. He has dealt with a lot by himself, but to come home, looking and feeling "normal", is so wonderful for us.
It is now 2330h and Fred has been asleep for a bit. He is happy where is, arms above his head in a gro-bag, snoring, and I hope that is because he is back home, and the people today he met are ones he remembered meeting more than 112 days ago. All of those people he met have visited him at his bedside in Bristol at some time in the past few months. There are others I wish we had time to visit but could not because of time.
Tomorrow we will go the Chagford and see Freds other Grampies for lunch then head back to Bristol.
Day 112 (Fri 27 Oct)
Sat, 10/28/2006 - 00:05 — endc011
After Fred's jaunt to the Zoo he was well behaved in the evening and went off to bed as normal. I think he feels happier in his own little environment, and knows that we are nearby but doing ordinary things which he can watch.
He sleeps well during the night and also feeds well. He cleared his bottle of 175ml last night in a few minutes which means no more stuff down the NG tube. Quicker for us, more natural for him though we must be careful he does not feed too quickly. You can however extract quite a lot of excess air from his stomach by the NG tube if needed. It is not unusual to suck out 60mls of wind. We would only do that when testing the tube however. Nothing can replace the ritual of winding him properly though.
We have breakfast and are due in the hospital for some bloods taken and then we hope we can go out again. However, they are taken and it is still 1710h and we are awaiting the results. I am not sure what we are waiting for exactly, as he is probably OK to come back with us, as he has nothing planned. We wait in any case as it raining outside.
I use the opportunity to go and get him the rubber ring seat my mum and dad wanted to get him. Did not stock it in Torquay but they have it here. Hopefully he can relax in a more supportive chair, which will strengthen the muscles in his neck.
If we are home early enough tonight I want to make a steak and ale pie if I can. Normally I would make my own shortcrust pastry but there are not any scales at the flat. Or at least i have not found them. I will bring some from home I think.
Fred has been chirpy all day today and is beginning to flag a bit. He has been shouting alot today making new noises.
Rachel has just come in to say we have the all clear to come back on Monday! Not sure what we have planned though. Have not had this situation for a bit. Need to check with the staff how far we can go safely. After nearly four months here you tend to be reluctant to leave the "safety net" of the hospital just in case Fred comes over "all funny" again.....
Day 111 (Thursday 26th October 2006)
Fri, 10/27/2006 - 01:40 — endc011
It was heavy rain again last evening as we pushed Fred back up St Michaels Hill. Once again he was locked into his own little plastic cloche.
Once back he happily settled into life back at the flat and went off to bed at about 2000h.
Fred was a bit unsettled during the night and sang loudly during the early hours. He rose earlier than usual though I managed a lie in until 1000h.
We have the whole day to ourselves and do not have to in into the hospital. I think that this is second time in nearly four months we have been able to escape.
We decide to go to Bristol Zoo. Fred used to visit Paignton Zoo regularly before he was taken ill. Normally it would have cost us £11.00 each to go in but we have a pass from home that works here. This means free entry which is a bonus.
The last time I was here was when I was a child. It was really good and Fred enjoyed the fresh air. Different to Paignton but familiar. A lot more compact but still a few hours entertainment. And it is a welcome break from our normal day.
At the moment Fred is having mashed sweet potato and is getting in a real mess. He finds grabbing the spoon most amusing. He has just had a nice bath and is now relaxing in his moo suit. He has just guzzled 130ml of milk in just a few minutes so we have to slow him down.
We have checked his mouth and the ulcers seem to have receded and he is generally a happier little boy.
He will be due a visit to the hospital again tomorrow morning.
Day 110 (Wed 25 Oct)
Thu, 10/26/2006 - 00:14 — endc011
Last night I met up with Wayne and we visited the Embassy once more, and left a little fuller! Good to catch up on the gossip though.
I travelled back through the heavy rain and there was a lot of surface water on the motorway. It amazes me that in such reduced visibility there are still clowns in 7.5t hired lorries doing 90mph in lane three oblivious to the weather conditions.
I get here just as Fred, Rachel and June are setting off to the coach station. Fred looks very well indeed but has a blood shot eye. Only a little spot, but apparently caused by his great fists. He is allowed out of the hospital now for a day or two as they won't start his next bit of chemotherapy until next week now. His counts are slowly rising which is good. Hopefully the weather will improve and we can go somewhere nice. I fancy a visit to Clevedon as I have never been there before.
Fred has been good by the sound of it, staying in the hospital today really to avoid the down pours.
Anyway, not much to report today which I suppose is good. I need to dry out a bit before I run after the other three, before the coach leaves.
Have a good party Claire - and happy birthday once again....
Day 109 (Tue 24 Oct)
Wed, 10/25/2006 - 08:09 — endc011
Yesterday evening I was with Fred in Bed 5, where we have been since Day 14, 21st July 2006 – my brother’s birthday. Fred and I decided not to head back to the flat.
Once settled I switch my radio off for a bit and listen to the heavy rain outside whilst lying in bed. The room is in darkness, but there is some light coming through the glazed panel in the door, through the curtain we draw at night. On the other side of the door is Ward 34 (Oncology), with a nurses station immediately outside to the left. This large desk is the hub of activity during both the day and night.
At night there will normally be two nurses on duty, plus a health care assistant. Sometimes there will be just the two nurses when it is quiet. Of the two, at least one must be trained to a certain standard in administering chemotherapy drugs (I think) for obvious reasons.
If there is not much happening, and with patients asleep, it must drag on and on for the staff. They cannot leave the ward on breaks so have to entertain themselves. There is always things for them to do, but if I am pottering about in the wee hours with Fred I do carefully peer out onto the ward to see what they are up to. If you need them they come instantly in any case.
I have also overcome my “shyness” of wearing pyjamas out on the ward and in the public corridors. I cannot be bothered to wear a dressing gown so my Homer Simpson sleep suit is worn with my moccasin slippers, or I might wear my Bugs Bunny long red t-shirt. Both are rather old and probably not really suitable for my age, but who cares? There can be some grim sights during the hours of darkness in a hospital. I did contemplate wearing my jeliboah which is like a large cotton ankle-length embroidered t-shirt which I bought in Egypt many years ago. Rachel recently reminded me that she wore it when Fred was born and it does not really look like a gentleman’s night attire. It is very comfortable though and the Egyptian men have worn them for centuries…
As I have previously mentioned, the pull down bed goes right down to floor level and Fred’s cot is at waist level a few feet away so is much higher than me when reclined. With the lights out I can see the rain overflowing from the guttering through the window and is illuminated by the security lights on the building opposite outside. For those who have not been in his room it is about 4 or 5 metres square, and is painted a bright yellow, with a yellow sheet vinyl floor to match. He has a high level window that opens, as well as a circular window that does not. The latter is so inaccessible it has, and never will be, cleaned, so the view of the street below is obscured.
Night itmes are quite cold in the room hence Fred now wearing a gro-bag and a hat at night now. I have a duvet on the bed which serves its purpose and the bed is actually quite comfortable. My old sleeping bag was too restrictive so is bundled in a corner. The bed can be stored all made up, so once it is done you only need to tidy it up in the morning to put it away again. The mattress is really soft so once I am tucked in, I position my radio by my ear so as to listen to Radio 4 and the World Service and am quite cosy.
During these quiet times it gives you an opportunity to lie back and reflect on things. Not just about poor little Fred and where we are at the moment (we have done hours and hours of that silently), but other silly little things. I end up wondering why certain things had been designed the way they were in his room. One of the most irritating is the three light switches which are near the hinge on the door. The door is nearly always open, but the switches are behind the door. Most of the doctors do not know where the switches are in any case. You have to move the bin and stretch in to try each switch in turn, to find the light you want. The lights are all at the edge of the room by the walls so there is not any general light anyway. The main light does not work I have recently noticed.
One of the light sources is the high level shelf, which has a fluorescent light fitting within it, shining up the wall. However, use the shelf by putting stuff on it and the light is obscured, and of course the items get hot too. The others are so dim they give little light but are good as nightlights.
The high level window does not have any curtains at all, so this in the past had been obscured with sheets of paper sellotaped by previous occupants. They have fallen off now though and the light from the adjacent offices stream in. If you want to open or close this window you have to climb up on to the mattress and wobble about until you grab hold of the handle to close it.
It is difficult to sleep as there is a lot of background noise occurring on the ward even with the door and curtain shut. The staff check on Fred regularly through the night so you tend to wake, or even wait, for there visit. Fred might need to have his nappy changed in the night, as we do not want him sitting in a damp nappy longer than he has to. If there has been a delay on him getting his meds or feeds, then he might need some attention at around 0100h ish. With these little things to worry about you tend to get your start sleeping from around 0400h onwards.
Last evening there was screaming and shouting from a child who was in obvious distress. I could hear things being knocked over whilst parents and staff tried to deal with the situation. By the sound of it I reckoned it was an NG tube being replaced. Later I asked a nurse about it and she confirmed that his tube had been pulled out, and the noise I heard was indeed it being replaced.
Fred will rise at 0500h fully refreshed and recharged and will want our company regardless of whether Rachel or I have slept properly. That turns into 0600h and then it will be his feed due, plus his 0700h meds which currently consist of five drugs – Magnesium Glycerosulphate, Potassium Citrate, Sodium Bicarbonate, Itraconazole, and Septrin, plus some Paracetamol and Codeine more recently. All these obviously have a liquid volume once combined and then there is a flush of sterile water to clear the NG tube of sticky residue. This can fill his tummy a bit before his feed. We try and defer his feed following this if possible. This all goes down his NG tube so he does not have to be awake, but it takes time to do it properly.
A few weeks ago there were several more drugs to give, all staggered through the day. As he has stabilised they have been discontinued. The ones Rachel and I now give are oral drugs, so could be popped in the mouth if necessary. However, Fred is frothy at the mouth sometimes and some of them taste positively nasty. He also has an oral chemotherapy – Mercaptopurine – which is too useful for him to waste by spitting it out.
All his other drugs are given by the nursing staff intravenously through his Hickman line – again he does not need to be awake for those.
However whilst he is asleep Fred can be heard snoring quite loudly, though it is a real pleasure to hear him waking up in the dark and snuffling about. I can hear him scratching his face and eyes. A yawn is regularly heard, followed more recently by a loud sigh. Then you can hear him opening and shutting his mouth, moving his tongue about. He is able to put his dummy in and out now, and he can be heard chomping frantically on it. It is easy to know when the dummy has dropped out of his mouth, as it bounces onto his mattress. There is a short silence before Fred breaks into a wail, which is our cue to wearily get up and put it back in his mouth. Then there is a clumsy but shuffling movement that makes him head toward the end of the bed, where he is then placed back at the head of the bed.
You can also clearly hear the rumbling of his stomach and then a bit lower down there will be a nasty bubbling sound that lasts several seconds. Nappy cahnge due. He of course thinks he is in an empty room, until I call out his name. He will then wobble his head around to where he thinks the sound has come from. His eyesight is good in the dark and I can make out a big grin when he spies me. By then it is time to get up, and this morning I likened it Ronnie Barker and “Open All Hours” – where he sets out his stall in the early hours. I get up and get ready with the door and curtain still shut but with the light on. Get Fred sorted and changed for the day, and then open the double doors to his room. Prop the doors with a “clinical waste” bin and plop Fred into his pram, and position him in the doorway looking down the corridor. The nursing staff then come up to greet Fred who returns them with a big grin. Those finishing their shift will wave goodbye to him, and those arriving will give him a cuddle and a tickle.
He will watch the patient name board being changed, in order to find out who his nurse is for this shift.
After I had come home I rang Rachel who was back with her mum June. Fred had had a good day and following the results of his blood tests, had been allowed back to the flat. They had been into town for lunch, and Fred had behaved impeccably.
They had spoken with Michelle the Consultant, and his platelet levels were still below the 100 mark, so he could not have this part of the chemo yet. Maybe tomorrow or after.
They went back to the flat and he slept well without problems and will return to the hospital tomorrow morning. I should be back there in the afternoon.
Fri, 11/03/2006 - 05:56 — endc011
I awoke this morning and had a nice hot bath. We are on a water meter now but did not care. It is clearly cold outside and that is another indication the seasons are changing rapidly.
I spoke with Rachel and there was a frost in Bristol last night. At the time of the 'phone call she and her mum were making their way up to Clifton Village which is probably a 40 minute walk away. As it was cold Fred was double wrapped in his cosy-toe and blankets and was happily peering out in the bright sunlight.
I guess they finally made it to the shops which is a nice collection of independent shops and little lanes which are interesting to explore.
I did not a great deal but tidied and sorted some things on the computer.
I spoke again with Rachel and Fred has had a busy day. He got a bit gripey later in the evening but fell asleep instantly when put in his cot. He slept from 2000h last night to 0600h this morning which was good for all concerned.
Tomorrow he will pop back into hospital where I suppose he will be checked over for the weekend. Hopefully they will let him out for the weekend before he is back on Ward 34 for his block of four chemotherapy sessions next week. This session will likely see all his protection drop once more. The hair that has grown back (now including his mega eye lashes) is likely to fall out again, but might not. The hair can come back totally different than before apparently. It could be blonde or ginger, curly or straight. At the moment it has come back a second time as dark, with a possible wave to it. Who knows next time?
I shall travel back tomorrow and see little man once again. The weather looks bright but cold for the weekend.
Day 117 (Wed 01 Nov)
Thu, 11/02/2006 - 05:07 — endc011
Fred and I enjoyed a quiet night last night once again, in the confines of the hospital. He was due two more sessions of chemotherapy, one starting at about 1900h for three hours, followed by another this morning commencing at about 0600h.
The M and S curry was not bad at all, and I found a naan bread in the 'fridge from a few days ago which was revitalised in the microwave with a bit of water.
The pump ticks away delivering its potency as usual. As with all chemotherapy drugs it is treated with caution by the staff, who wear protective clothing whilst preparing it, as well as installing it. Goggles, full arm sleeves as well as the normal gloves and polythene apron are worn. This is due to the toxicity of the drug, and how it could affect a healthy persons blood cells if they came into contact with it.
The same still goes for us when we deal with any of his body fluids, more predominantly changing nappies, but also if he sicks or wees on us. Normally a tissue or wipe would suffice, but we should get the gloves on first which can be a pain, especially if they are not to hand and things are happening quickly. Usually they are, as we have got used to it now.
He also continues with his eye care in the form of drops, but now an ointment. The drops are every two hours but overnight it is the ointment which is applied. This is mainly to make life easier for everyone, as the two hour drops would cause him more disturbance, as well as us and the staff. The ointment should last the night so he can get some kip.
The drug he is having - Cytarabine - can cause crystals to form in the eyes occasionally, and so this should remove that danger. I spoke with the nurse about it and she said that it only usually occurs if the drops/ointment are not applied diligently, but if you take short cuts then it can be really nasty. She has only seen one case though.
As he wakes for a feed in the night, his old peepers shed the ointment, so I give him some drops again at 0600h just to tide him over until the next lot. We all can do wthout eye problems.
I get a good last few hours sleep, but I am woken by the nurses putting the early morning chemotherapy on again.
I decide to get up and potter about, and have a wash. Fred is making his usual sounds through the en-suite door, but once he realises I am awake properly now, he drifts off back to have another sleep for a bit.
Last night I spoke with the Hotel Services staff who do the cleaning and food service. I did not realise that Fred can have "real" meals that are pureed by the kitchen, and then frozen for re-heating. Anything goes, and there is not any salt or other nasties added. I suppose it is for patients who need pureed food, but I did not think that Fred would qualify for such gourmet delights.
It comes in separate portions so he can have a little bit of each once it cools. The dietitian reckoned it would be worth a try so we will do that.
Rachel and June arrive at the normal time so I jump into the car and head back. Fred will be pleased to see them again.
The weather is really sunny but cold today. Last night it was cold as the heating has yet to be fired up. Fred had four blankets and a hat to keep him warm.
As I pass by Torquay I meet up with some colleagues for lunch which was nice. I was not sure of my timings today, but it worked out well if not a bit short arranged. I later meet up with Amanda and James at her mum and dads. I have not seen James for a few weeks now and he is growing fast. He is a few weeks younger than Fred and is just as dribbly, with the soggiest of hands too.
Mum and dad are fine and I collect my post before plodding home via Three Beaches Wines Store. Lyn and Paul have had a collecting jar on the counter for some while now and more recently have had a photograph of Fred on it. See the photograph in the gallery. From that small tin, customers and staff raised £80.00 for CLIC which will be put to good use soon, with some of the other money raised. My office has raised £125.00 I think, or more too. There has been a number of cake and book sales which have bolstered the cause. Rachel and I, plus Freddie will decide carefully how it will be donated to CLIC as they have helped us so much over the last few months. We do not want it to disappear into the corporate charity pot.
Rachel, her mum and friends will be having a coffee morning too on the 24 November 2006 in Chagford. Both of them have been making scarves, cards and other items for sale as well as taking delivery of other interesting items in time for Christmas. Some of the scarves (which are hairy wool ones in lots of different colours) have sold in the hospital being bought by the nursing staff once they see them. The amount of stuff made is quite amazing.
Tonight I am watching television at home, and alone :(
I later hear that Fred is allowed out from the hospital until Friday, before the doctors want to see him again. On Monday he starts another session of chemotherapy, similar to the on he had in the last few days. His eye drops will last for five days after the last treatment.
I never thought that in the "Archive" section of the 'blog (Home Page, right hand side) we would ever get to the number of months we have now. When I started the 'blog I knew it was an open ended thing but time has flown, and we are now in November - I am still typing away each day, with Frederick's progress. I think we have come a long way since Day 1 (or Day 0?) - July 8 2006.
It was very hot and sticky back in those days and shorts were what I had to wear. Windows open in the flat and hospital and sunglasses when out and about. Now it is big coats and hats, and I have got my gloves out. We used to be able to leave Intensive Care at 2200h and walk home when it was light, and was still muggy.
Since then new people have come in, and new people gone again, all with their own stories, and were all as worried as us in the early days, and after. We have sort of got used to the routine now, and Fred seems to be dealing with it as best he can.
Day 116 (Tue 31 Oct)
Wed, 11/01/2006 - 03:39 — endc011
Fred nodded off at 2145h last night and did not really wake until 0630h for a brief mumble. He was still tired so returned to his slumber, which enabled me to do same. A bit later I woke to read and listen to the news. All rather relaxing. Normally I am tired and have not slept well, and Fred is restless too. He must have been tired.
The nurses came in during the night to disconnect the chemotherapy pump that was running, and check him regularly. He did not stir and even when they started to put eye drops in he dad not wake. He will have these drops during the current course of chemo.
In the early hours of the morning he was re-plumbed to the machine for the next dose of chemotherapy. This also goes on for three hours and by late morning he is free to go. I have a few things to do, and I have a chat with the dietitian. At the moment Fred weighs 7.7kg with a target weight of 8kg, so he is heading that way slowly.
We pop into town but the weather is not very good looking so I do not stray far. Spicy noodles for lunch and which are ones I have not tried before.
The rest of the afternoon is dealing with Fred and heading back to the flat to get some things. Then back to the hospital, for some more chemotherapy. This will go on for a couple of weeks.
Fred is quite unsettled early evening and is not his usual self. He settles after a long cuddle with me and is plopped back into his gro-bag. After some protestation he is fast asleep.
Today is Hallow e'en and the kids in the hospital have been making things and costumes. The canteen was decorated with more cobwebs and spiders. I had some breakfast in there, and it was sort of jolly. The kitchen staff came around later to scare the children but Fred was having none of it. Quite literally really, as he was too small for any of the treats they were giving away.
I am getting settled in to Fred sleeping again all that time, but we will see. I have bought a Marks and Spencers curry and rice tonight as I have yet to find anything that goes in a microwave tasty. I am reliably informed that the curry will be good, so I managed to queue with the commuting masses for a good fifteen minutes. I hope it is worth it.
Day 115 (Mon 30 Oct)
Tue, 10/31/2006 - 04:04 — endc011
After the weekends excitement we are back now, with it being just a memory. It was easy to switch back to hospital mode without too much trouble. Fred knows this as his second (or now first?) home. Either way we got back to Bristol by about 1730h and unpacked our bits and did some washing.
Rachel heads back to Devon early today and I have a bit of a lie in, as does Fred. He is a bit less settled than the last couple of nights but he is playful. Thankfully Rach has packed the pram with all I need, and all I do is try and wheel it down the road. It is loaded with all his meds and new milk (5.5kg worth) plus all the glass milk bottles that have been used over the weekend. I think they get recycled.
I get in and the staff are pleased to see Fred and enquire about his weekend off. It was good to explain to them all the things we did, all of which were things we used to do regularly.
I wheel him in his room which looks tidy. More careful examination reveals the television has vanished, his scales, and more curiously the clock over his bed. I ask the staff who know nothing about it but I later learn some of the TVs were taken somewhere else. As for the clock no one knows.
Fred has his bloods taken and I eventually get sorted to take him to town to meet my mum and dad who are visiting. We have a look around and head out for lunch. Whilst we are there two separate people come up to look at Fred and we chat about him. He is looking particularly cute today.
After that we troop about the town and it starts to drizzle a bit. Dad is again in control of Fred's chariot. Fred is under the polythene cover and snoring.
They eventually head off and so I go back to the flat to get some gear for tonight.
I come back in and get Fred organised. He is due his high dose Cytarabine tonight for the next four days. He is OK to have this now as all his counts have shot up, as expected. He is plumbed in to the pump and is fast asleep. This time he gets eye drops every two hours, so as to ward off any eye infections. He had some on Intensive Care, but it was a gel to stop his eyes from drying. He receives the drops without stirring one bit. Thankfully they will be doing the drops through the night.
Earlier the porter came with a portable TV to replace the shiny silver one I had before. I recognised this as the one I hoofed out a few months ago as it did not work. I left it where it was and decided I would read my book.
Later on, I sitting in the darkened room staring into space thinking what to eat, when Kate the Ward Sister asked why I was not watching Coronation Street. I explained what had happened and in a few minutes a TV had arrived from one of the other closed beds. I can now watch my TV tonight as well as the news in the morning.
Fred is now fast asleep and I will wake him later to feed him and put him in his gro-bag. Hopefully he will have a peaceful night with this drug, though it is more potent than before.
Day 114 (Sun 29 Oct)
Sun, 10/29/2006 - 18:21 — endc011
Yesterday was a really relaxing day for us all, and Fred once again slept like a baby.
We are heading back today so I am listening to the Archers, and Fred is having his own lie in. He is in some fleecy blue pyjamas, and with the heating on in the room is very comfortable indeed.
I am eating the last bit of turkey and ham pie we had last night. Have not had a shop bought pie so nice for ages, though it was from the butchers in Preston. He said he had made it that morning and there would not be any "air gaps" in the filling. Have not found any yet.
We will load all his stuff back up and it is lunch at grannies. I hear it is a bit of beef.
The clocks have gone back. All the clocks have stopped in our house so we do not have to do much other than the one in the bathroom.
Day 113 (Sat 28 Oct)
Sun, 10/29/2006 - 06:02 — endc011
Just as I was finishing last evenings 'blog the nursing staff asked whether we would like to return to Torbay for the weekend, as Fred was well enough, as his bloods had come back all in order. His counts are up so he is able to deal with infection better now than recently, and he is fine all 'round.
They said that he does not need to be back until Monday PM for any further treatment so really we could go there and then. This was a bit of a shock for us, as we did not reckon on this situation. We chatted it through and they rang through to Torbay Hospital to advise them that Fred would shortly be "in their area" and arranged details between each other if Fred encountered problems. Our main fears are Fred becoming ill outside of his normal hospital due to high temperature or a line infection..
We scooped up the various things that accompany Fred nowadays and at 1830h headed over the Clifton Suspension Bridge, and joined the south bound M5 home. In the rain.
The last time Fred used this long long stretch of road was when he was with the retrieval team in an ambulance coming up here on blues and twos in early July, and being dangerously ill.
We got back at around 2030h and he settled well in his faithful armchair that had remained in the corner of the sitting room. He watched television whilst we pottered around him. We ordered a curry that was delivered and relaxed at home for the first time in four months.
He slept really well in his cot and rose at 0530h for his feed. Then he was asleep for the next few hours whilst we slowly got up. I had my bath in deep hot water whilst listening to the radio.
We went over to my mum and dads with Fred and had some breakfast. The Gramps Wills were entertained by Fred for a while and dad had a cuddle with the Little Man. Fred was on form for them both.
We then popped over to see Wayne and Claire for a bit and he go some extra cuddles, for which he was grateful.
From there we went into town and did all the things we would normally do on a Saturday with Fred. It was good to have him back home again and it did not seem he had been away at all. All those months in hospital disappeared for a short while.
We popped back into mum and dads at the end of the afternoon and Fred fell asleep on the living room floor on a towel. He had spent quite a while kicking his legs this afternoon and so contentedly fell asleep in front of everyone.
I spoke to our friend Dawn and we chatted about Fred being home. They came over in the evening for an impromptu bite to eat and a drink and it was a really good night. One of Fred's biggest fans - Emily - came along later on too, and we had a lovely evening.
Fred has had the best "normal" day today ever and had enjoyed the change immensely. This was a day that, back in early July was he was admitted to Bristols Intensive Care Unit, we did not think we would ever see. He has dealt with a lot by himself, but to come home, looking and feeling "normal", is so wonderful for us.
It is now 2330h and Fred has been asleep for a bit. He is happy where is, arms above his head in a gro-bag, snoring, and I hope that is because he is back home, and the people today he met are ones he remembered meeting more than 112 days ago. All of those people he met have visited him at his bedside in Bristol at some time in the past few months. There are others I wish we had time to visit but could not because of time.
Tomorrow we will go the Chagford and see Freds other Grampies for lunch then head back to Bristol.
Day 112 (Fri 27 Oct)
Sat, 10/28/2006 - 00:05 — endc011
After Fred's jaunt to the Zoo he was well behaved in the evening and went off to bed as normal. I think he feels happier in his own little environment, and knows that we are nearby but doing ordinary things which he can watch.
He sleeps well during the night and also feeds well. He cleared his bottle of 175ml last night in a few minutes which means no more stuff down the NG tube. Quicker for us, more natural for him though we must be careful he does not feed too quickly. You can however extract quite a lot of excess air from his stomach by the NG tube if needed. It is not unusual to suck out 60mls of wind. We would only do that when testing the tube however. Nothing can replace the ritual of winding him properly though.
We have breakfast and are due in the hospital for some bloods taken and then we hope we can go out again. However, they are taken and it is still 1710h and we are awaiting the results. I am not sure what we are waiting for exactly, as he is probably OK to come back with us, as he has nothing planned. We wait in any case as it raining outside.
I use the opportunity to go and get him the rubber ring seat my mum and dad wanted to get him. Did not stock it in Torquay but they have it here. Hopefully he can relax in a more supportive chair, which will strengthen the muscles in his neck.
If we are home early enough tonight I want to make a steak and ale pie if I can. Normally I would make my own shortcrust pastry but there are not any scales at the flat. Or at least i have not found them. I will bring some from home I think.
Fred has been chirpy all day today and is beginning to flag a bit. He has been shouting alot today making new noises.
Rachel has just come in to say we have the all clear to come back on Monday! Not sure what we have planned though. Have not had this situation for a bit. Need to check with the staff how far we can go safely. After nearly four months here you tend to be reluctant to leave the "safety net" of the hospital just in case Fred comes over "all funny" again.....
Day 111 (Thursday 26th October 2006)
Fri, 10/27/2006 - 01:40 — endc011
It was heavy rain again last evening as we pushed Fred back up St Michaels Hill. Once again he was locked into his own little plastic cloche.
Once back he happily settled into life back at the flat and went off to bed at about 2000h.
Fred was a bit unsettled during the night and sang loudly during the early hours. He rose earlier than usual though I managed a lie in until 1000h.
We have the whole day to ourselves and do not have to in into the hospital. I think that this is second time in nearly four months we have been able to escape.
We decide to go to Bristol Zoo. Fred used to visit Paignton Zoo regularly before he was taken ill. Normally it would have cost us £11.00 each to go in but we have a pass from home that works here. This means free entry which is a bonus.
The last time I was here was when I was a child. It was really good and Fred enjoyed the fresh air. Different to Paignton but familiar. A lot more compact but still a few hours entertainment. And it is a welcome break from our normal day.
At the moment Fred is having mashed sweet potato and is getting in a real mess. He finds grabbing the spoon most amusing. He has just had a nice bath and is now relaxing in his moo suit. He has just guzzled 130ml of milk in just a few minutes so we have to slow him down.
We have checked his mouth and the ulcers seem to have receded and he is generally a happier little boy.
He will be due a visit to the hospital again tomorrow morning.
Day 110 (Wed 25 Oct)
Thu, 10/26/2006 - 00:14 — endc011
Last night I met up with Wayne and we visited the Embassy once more, and left a little fuller! Good to catch up on the gossip though.
I travelled back through the heavy rain and there was a lot of surface water on the motorway. It amazes me that in such reduced visibility there are still clowns in 7.5t hired lorries doing 90mph in lane three oblivious to the weather conditions.
I get here just as Fred, Rachel and June are setting off to the coach station. Fred looks very well indeed but has a blood shot eye. Only a little spot, but apparently caused by his great fists. He is allowed out of the hospital now for a day or two as they won't start his next bit of chemotherapy until next week now. His counts are slowly rising which is good. Hopefully the weather will improve and we can go somewhere nice. I fancy a visit to Clevedon as I have never been there before.
Fred has been good by the sound of it, staying in the hospital today really to avoid the down pours.
Anyway, not much to report today which I suppose is good. I need to dry out a bit before I run after the other three, before the coach leaves.
Have a good party Claire - and happy birthday once again....
Day 109 (Tue 24 Oct)
Wed, 10/25/2006 - 08:09 — endc011
Yesterday evening I was with Fred in Bed 5, where we have been since Day 14, 21st July 2006 – my brother’s birthday. Fred and I decided not to head back to the flat.
Once settled I switch my radio off for a bit and listen to the heavy rain outside whilst lying in bed. The room is in darkness, but there is some light coming through the glazed panel in the door, through the curtain we draw at night. On the other side of the door is Ward 34 (Oncology), with a nurses station immediately outside to the left. This large desk is the hub of activity during both the day and night.
At night there will normally be two nurses on duty, plus a health care assistant. Sometimes there will be just the two nurses when it is quiet. Of the two, at least one must be trained to a certain standard in administering chemotherapy drugs (I think) for obvious reasons.
If there is not much happening, and with patients asleep, it must drag on and on for the staff. They cannot leave the ward on breaks so have to entertain themselves. There is always things for them to do, but if I am pottering about in the wee hours with Fred I do carefully peer out onto the ward to see what they are up to. If you need them they come instantly in any case.
I have also overcome my “shyness” of wearing pyjamas out on the ward and in the public corridors. I cannot be bothered to wear a dressing gown so my Homer Simpson sleep suit is worn with my moccasin slippers, or I might wear my Bugs Bunny long red t-shirt. Both are rather old and probably not really suitable for my age, but who cares? There can be some grim sights during the hours of darkness in a hospital. I did contemplate wearing my jeliboah which is like a large cotton ankle-length embroidered t-shirt which I bought in Egypt many years ago. Rachel recently reminded me that she wore it when Fred was born and it does not really look like a gentleman’s night attire. It is very comfortable though and the Egyptian men have worn them for centuries…
As I have previously mentioned, the pull down bed goes right down to floor level and Fred’s cot is at waist level a few feet away so is much higher than me when reclined. With the lights out I can see the rain overflowing from the guttering through the window and is illuminated by the security lights on the building opposite outside. For those who have not been in his room it is about 4 or 5 metres square, and is painted a bright yellow, with a yellow sheet vinyl floor to match. He has a high level window that opens, as well as a circular window that does not. The latter is so inaccessible it has, and never will be, cleaned, so the view of the street below is obscured.
Night itmes are quite cold in the room hence Fred now wearing a gro-bag and a hat at night now. I have a duvet on the bed which serves its purpose and the bed is actually quite comfortable. My old sleeping bag was too restrictive so is bundled in a corner. The bed can be stored all made up, so once it is done you only need to tidy it up in the morning to put it away again. The mattress is really soft so once I am tucked in, I position my radio by my ear so as to listen to Radio 4 and the World Service and am quite cosy.
During these quiet times it gives you an opportunity to lie back and reflect on things. Not just about poor little Fred and where we are at the moment (we have done hours and hours of that silently), but other silly little things. I end up wondering why certain things had been designed the way they were in his room. One of the most irritating is the three light switches which are near the hinge on the door. The door is nearly always open, but the switches are behind the door. Most of the doctors do not know where the switches are in any case. You have to move the bin and stretch in to try each switch in turn, to find the light you want. The lights are all at the edge of the room by the walls so there is not any general light anyway. The main light does not work I have recently noticed.
One of the light sources is the high level shelf, which has a fluorescent light fitting within it, shining up the wall. However, use the shelf by putting stuff on it and the light is obscured, and of course the items get hot too. The others are so dim they give little light but are good as nightlights.
The high level window does not have any curtains at all, so this in the past had been obscured with sheets of paper sellotaped by previous occupants. They have fallen off now though and the light from the adjacent offices stream in. If you want to open or close this window you have to climb up on to the mattress and wobble about until you grab hold of the handle to close it.
It is difficult to sleep as there is a lot of background noise occurring on the ward even with the door and curtain shut. The staff check on Fred regularly through the night so you tend to wake, or even wait, for there visit. Fred might need to have his nappy changed in the night, as we do not want him sitting in a damp nappy longer than he has to. If there has been a delay on him getting his meds or feeds, then he might need some attention at around 0100h ish. With these little things to worry about you tend to get your start sleeping from around 0400h onwards.
Last evening there was screaming and shouting from a child who was in obvious distress. I could hear things being knocked over whilst parents and staff tried to deal with the situation. By the sound of it I reckoned it was an NG tube being replaced. Later I asked a nurse about it and she confirmed that his tube had been pulled out, and the noise I heard was indeed it being replaced.
Fred will rise at 0500h fully refreshed and recharged and will want our company regardless of whether Rachel or I have slept properly. That turns into 0600h and then it will be his feed due, plus his 0700h meds which currently consist of five drugs – Magnesium Glycerosulphate, Potassium Citrate, Sodium Bicarbonate, Itraconazole, and Septrin, plus some Paracetamol and Codeine more recently. All these obviously have a liquid volume once combined and then there is a flush of sterile water to clear the NG tube of sticky residue. This can fill his tummy a bit before his feed. We try and defer his feed following this if possible. This all goes down his NG tube so he does not have to be awake, but it takes time to do it properly.
A few weeks ago there were several more drugs to give, all staggered through the day. As he has stabilised they have been discontinued. The ones Rachel and I now give are oral drugs, so could be popped in the mouth if necessary. However, Fred is frothy at the mouth sometimes and some of them taste positively nasty. He also has an oral chemotherapy – Mercaptopurine – which is too useful for him to waste by spitting it out.
All his other drugs are given by the nursing staff intravenously through his Hickman line – again he does not need to be awake for those.
However whilst he is asleep Fred can be heard snoring quite loudly, though it is a real pleasure to hear him waking up in the dark and snuffling about. I can hear him scratching his face and eyes. A yawn is regularly heard, followed more recently by a loud sigh. Then you can hear him opening and shutting his mouth, moving his tongue about. He is able to put his dummy in and out now, and he can be heard chomping frantically on it. It is easy to know when the dummy has dropped out of his mouth, as it bounces onto his mattress. There is a short silence before Fred breaks into a wail, which is our cue to wearily get up and put it back in his mouth. Then there is a clumsy but shuffling movement that makes him head toward the end of the bed, where he is then placed back at the head of the bed.
You can also clearly hear the rumbling of his stomach and then a bit lower down there will be a nasty bubbling sound that lasts several seconds. Nappy cahnge due. He of course thinks he is in an empty room, until I call out his name. He will then wobble his head around to where he thinks the sound has come from. His eyesight is good in the dark and I can make out a big grin when he spies me. By then it is time to get up, and this morning I likened it Ronnie Barker and “Open All Hours” – where he sets out his stall in the early hours. I get up and get ready with the door and curtain still shut but with the light on. Get Fred sorted and changed for the day, and then open the double doors to his room. Prop the doors with a “clinical waste” bin and plop Fred into his pram, and position him in the doorway looking down the corridor. The nursing staff then come up to greet Fred who returns them with a big grin. Those finishing their shift will wave goodbye to him, and those arriving will give him a cuddle and a tickle.
He will watch the patient name board being changed, in order to find out who his nurse is for this shift.
After I had come home I rang Rachel who was back with her mum June. Fred had had a good day and following the results of his blood tests, had been allowed back to the flat. They had been into town for lunch, and Fred had behaved impeccably.
They had spoken with Michelle the Consultant, and his platelet levels were still below the 100 mark, so he could not have this part of the chemo yet. Maybe tomorrow or after.
They went back to the flat and he slept well without problems and will return to the hospital tomorrow morning. I should be back there in the afternoon.
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