Day 48 (Thu 24 Aug)
Fri, 08/25/2006 - 01:22 — endc011
I am heading back to Bristol today and get back here about lunchtime. June has stayed the last couple of days with Rachel so Fred has been looked after.
As I stroll down the corridor to W34 I pass a couple of doctors who say that Fred is doing well and drinking lots. This is good to hear.
When I get in I find my brother Duncan in his cubicle too. He was passing Bristol so popped in to say "hello" which was nice. Fred was dozy at the time but was due a feed. He was looking good to, given the circumstances. As Fred awoke he was very alert again.
He had his feed happily and he is now on 110mls every three hours. He seems to be tolerating them so hopefully this will give a much needed boost. He looks around all the time smiling whilst feeding and does not concentrate properly. After all that starvation I would have thought he would get it down quick. Not much spillage though and therefore no waste.
Duncan heads off and I let mum and dad know the latest on Fred.
He is looking a bit grubby today, so he gets a warm bath. He is not connected to anything so it is a doddle to plop him in the bath for a scrub. Provided his Hickman stays out of the water, he can splash as much as he likes. He seems happier in the bath than last time, and all his nooks and crannies get sponged. He shouts when his little amount of hair is washed, as well as his face. Back into a warm towel on the bed and he gets sleepy again.
His feet have reduced in size considerably and are all wrinkly like the rest of him. He is still baggy. When he was full of fluids he was either "boggy" or "soggy" and now he is "baggy." Poor Baggy Fred.
We have some lunch at the pub and I claim the remainder of my prize - the spirit and mixer. We need more nappies for Fred and have now started to buy "new born" ones as he so small. The other ones leaked around the legs which was OK until Fred was on your lap.
Late afternoon meant that his next course of chemotherapy started. This is given over three hours alongside a fluid supplement that will last six hours. He will also get a drug that deals with any possible damage to the kidneys as well as an anti-sickness drug. He will have some more tomorrow and I gather this course will be stronger than the first.
His WBC is currently 7.7 and this will start reducing in the next seven to ten days I think. They are mindful of his fluids though I think the volumes are alot less on this one, or at least not over such a time. I hope the recent good behaviour of Fred means he can concentrate on fighting any problems that might occur.
He seems a bit sleepier today and nods of more quickly. In the past he seemed keen to stay awake.
I brought my video camera back, the one i bought fro my 40th. I have a load of footage of Fred since his early days being out and about with us. It covers all sorts of mundane activities as well as the regular visits to the grandparents houses. The last video was four days before he went to the doctors. I was on leave that week and met Amanda and James and we went down to Goodrington for a wander. It was roasting hot and Fred was covered in the visible sun cream. He looked a bit odd but we did not want him catching the sun. He seems totally normal in the video there, as well as back at my mum and dads immediately afterwards. There is on his back playing with my dad, with Fred trying to swipe his glasses. Again, nothing untoward in the video.
Hopefully Fred will have a good evening. I do not know how long before it starts to take affect. A Bank Holiday is approaching so I do not know what the staffing levels are going to be.
And no MRI results either today. I suppose with the Bank Holiday approaching we will find out sometime next week. I think we have been waiting two maybe three weeks. Will chase them again I think. I look at my watch and it is 1845h so I guess it is tomorrow now.
Fred says check out the new "glossary" link and:
Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.
Day 47 (Wed 23 Aug)
Thu, 08/24/2006 - 04:27 — endc011
As I am in Paignton for a day or two I met up with Hayley, Graeme and Leoni last evening in the Isaac Merritt. Great to see them although the food takes an hour to arrive. We are all hungry by then and the excuse is that the kitchen is not very big. Still, the service is normally very good so I reckon it must be a hiccough.
I have one of the best nights sleep in a long while, and don't wake until 1100h as our alarm clock no longer works. I have a few jobs to do today and get on with it after a long hot bath, and having lunch at mum and dads.
I speak to Rachel a couple of times during the day and she updates me on his progress.
Fred is on form again today and seems the chirpiest ever. He had a blood transfusion last night so this probably explains it.
Joanna came in and basically repeated what Pam the oncologist said about his planned treatment. He will have two chemotherapy drugs that he has had before plus another new one. It is hoped that he will not get as ill as last time, as I have previously mentioned, but we will have to see. Joanna explains that there are likely to be new things occurring during his treatment. I feel sorry for Fred as I reckon he might think it is all over now - little does he know. In any case hopefully he will never recalls all of this horrible time for him. His treatment is planned to start tomorrow.
No news on the MRI scan yet despite Rachel chasing it.
Rachel's dad Colin visits today as well as Gaye, and Fred is well behaved. One thing I did miss whilst being here was when they went Freddie was permitted for the FIRST TIME EVER to be wheeled to Reception to say goodbye to them. Apparently Sam the playgirl thought it would be OK and checked with staff who said "yes." Fred's eyes were wobbling about in the lift as I guess the excitement must have been too much for him. He has not seen the outside world for a month and a half. That is another little milestone he has passed.
His feeds have increased a bit since I last 'blogged. He had 85mls today on a couple of occasions and this has increased to 110mls before Rachel left the hospital. I am not sure whether this amount can be sustained by him but Fred has blagged it somehow, and the doctors are aware. He has lost his bag of TPN too which I suppose will be compensated by the increase in his milk feed. His weight has dropped another few grams though. I had another look at his Red Book today and see that four days before he was admitted to BRCH he was 6.86kg which is only about 0.6kg more than he is now. He is six weeks older but he has been in 'suspended animation' for that time on very little food that will fatten him up, so I am a bit more happier with his weight.
So that was the good news on Fred today.
I went into Sainsburys today to pick up a few items and bumped into Nicky a friend from the office, as well as Mary whom I have known for many years. We had a chat about Fred and his progress for a few minutes and it was nice to see them. Fred seems a popular little mite and everyone we have met have been so kind.
I have also created a "Glossary of Terms" which will hopefully explain some of the abbreviations I have been using. Have a look at the link over to the right of the screen.
Remember:
Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.
Day 46 (Tue 22 Aug)
Wed, 08/23/2006 - 01:45 — endc011
When I went in Fred was being fed and was swaddled up in a blanket and looking very content. He had just finished his 50mls and was about to be weighed.
I changed his nappy and gave his bum a good wash down and he was popped on the scales for his twice daily ritual of weighing. He had dropped once more down to 6.28kg as he had been weeing alot. The Red Book reckons he should be 7.5kg in normal circumstances at 22 weeks which he obviously isn't at the moment. His feet are still a little puffy and he is positive on his fluid balance. I think that it is a fine tuning exercise now as they do not want him to get dry, nor soggy.
He seems the same as he has been over the last week or so with lots of smiles. I have a number of photos taken in the last day or two that I will upload onto this site later on.
He has six eyelashes on one eyelid and four the other. The good thing is once they are gone they won't get stuck in the little peepers. It's nearly impossible to fish them out, so I leave them. I think he can do without an eye infection.
The Renal Team come in to say that his tests for his kidneys are looking good and that this will mean he should be able to make the maximum of his chemo. I do not know when the chemo. will start but they need to work out how much he was going to get. That is some good news at least.
No news again on the MRI results today. The doctors have been fairly scarce on the ground though we will try and nab them tomorrow.
He had a session in the playroom as well which stimulates the brain a bit. When he was in there he was able to watch the TV and look at all the bright objects around him. Hannah also gave him a workout which would have tired him out.
His feeds have been increased again up to 60mls every three hours which he is happy with. If he gets too much I think he will sick it back up again.
Not much happened up to the time I did the 'blog. I will add those photographs once I have sorted a couple of problems.
And do not forget.....
Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.
Day 45 (Mon 21 Aug)
Tue, 08/22/2006 - 01:32 — endc011
Just before we left last night Fred started to become quite distressed rapidly and we noticed that his whole body seemed to be much pinker than normal. It looked like he had just come out of a hot bath and his temperature had by then started to rise.
The nurse paged the doctor, and Fred continued to be restless for about 15 minutes or so. By the time the doctor had arrived Fred had calmed down again, and the rash had disappeared. They did not know whether he had just had a reaction to something (though he had nothing new before his little incident) and so they decided to monitor him. The whole episode lasted no more than 20 minutes, but illustrated how he can go from being a laughing and chuckling Fred, to a bawling baby with a possible problem.
Rachel got in before me today and Sarah had been his nurse again. He had been a good boy overnight and he remained the same through the day with me. He was a little grumpier than usual, but has been having slightly increased feeds again. He is upto 50mls now.
I had a chat with the doctors who remain pleased with his progress so far. They are trying to balance out his fluids a bit, and reviewed his dietary requirements. The idea seems to be more milk, and so hopefully the next day or two will see this happening. It will certainly appease Fred. His blood all looks good at the moment.
I raise the question of the MRI and CT scans and apparently they are awaiting some information. The doctor I spoke was surprised that we had not heard anything yet and went off, promising we would hear tomorrow. We shall wait and see and once again, fingers crossed.
He also was administered a radioisotope which relates to the testing of the kidneys. He had regular blood and urine tests during the day, and the results should be known tomorrow afternoon. Hopefully they are what the team want to see so that Fred's chemotherapy can start to progress once again. It should start Wednesday or before if all is well.
Fred's weight caused a little concern as he is now down to 6.3 kg. The dropping is mainly from Fred shifting his fluids a bit quicker, and they will be able to balance this hopefully by adjusting his input over the next day or so. He really is quite baggy at the moment, with his wrists having a diameter of about 80mm.
My mum and dad visited today and Fred was in his pram resting. He was pleased to see them and entertained them as best he could. We had lunch in the canteen for the first time and that was actually really good. I did not have to pay.
He had a physio session with Hannah, and he enjoyed that. It gets his arms and legs going and we ended up with on the lap looking back at us, with his little legs wrapped around my side. This gives him a comfortable position, and can see me and we had a good talk. Lots of smiles. Because he is quite weak, he gets tired easily and 10 minutes of concentration make him flag a bit.
A few staff who have been on this week come in and remark how much different he looks and how perky he is. He grins at all of them.
Toward the end of the day he gets a bit gripey as I think he is tired. I also take a look at this bum as I can recognise a familiar cry.... the previous "wounds" all appear to be OK, but one or two look as if they are wet. When I dab some cream on them he howls like mad. They will get the cooled gel strips in tomorrow morning hopefully as we do not want a repeat of the last time.
I may head home tomorrow if Fred is OK and has a good night. Rachel will be back in the morning with her mum, so Fred has more visitors!
Day 44 (Sun 20 Aug)
Mon, 08/21/2006 - 00:20 — endc011
Fred was just staring into space this morning when we arrived minding his own business. He burst into a big grin once he saw us by his bedside. He was pleased to see a friendly face, but had had a good restful night according to the staff. He had just been fed his 40mls of milk so was relaxed.
Most of the day was like the previous few, in that he was very settled and seemed happy. He patiently waited for his feeds and routinely filled his nappy.
Pam, the Oncologist came in and said that they were pleased with his progress so far in that he was slowly but surely balancing his chemicals out. The number of drugs he has been getting has dropped down to the minimum, though they still test his blood regularly and tweak his doses accordingly.
She touched on the subject of Fred's next course of treatment. This is to start week commencing 21 Aug, though they have yet to fine tune his dosage. This will depend on the results of a test tomorrow where they give him a drug and this will measure how effective his kidneys are more precisely. Due to his previous problems it is critical that everything is sorted before they start. I think they measure whats in his urine at some stage.
Fred was due an increase on his feeds so after some debate we decided that 45mls would be better than the proposed 50mls. I would rather he got used to the amount slowly, rather than sick it up again, and they reduce the amount back to a tiny amount. At least on Monday he can have the big 50 of milk.
His chemotherapy will consist of the some he has had already, plus some he hasn't. He will get the usual one intrathecally plus some intravenously. I think one was orally so is in a crushed tablet form and I suppose that will go down his NG tube. This will go on for four weeks and then will stop if all goes to programme.
I do not know what effect this new stage will have on him. Previously he was really ill but I think that now the majority of the leukaemic cells have gone, then this might be easier on him. Before he was going from being untreated to treated, and this hopefully is a natural progression for him. I expect some illness will hit him, and he will become neutropenic again so will be at risk of infection.
However, I hope that his week of rest will stand him in good stead for the next bit.
I hope to be able to have a few questions answered but it is all dependent on so many things.
The results of the MRI and CT scan are supposed to be known tomorrow, so his little "holiday" is drawing to a close for a bit.
Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.
Day 43 (Sat 19 Aug)
Sat, 08/19/2006 - 23:33 — endc011
Fred is much the same today - alert and smiling, and getting a bit more feed each day.
Today he is up to 40mls which includes a thickener of sorts, to ensure it stays down in his stomach. He is also getting his nutrients via the TPN fluid which he gets administered via his Hickman line. He is about 6.7kg now, with most of the excess fluids having been wee'd out. He arms are quite skinny now at the top and you can feel his bones more. The doctors are happy with his weight and he is closely monitored so we are not unduly worried.
The renal doctors have said that his kidneys are working back at normal strength now, so they seem fixed - at least for the time being. A couple of weeks ago he had quite a few problems, and it looks like those have been overcome now. They will have a closer look on Monday but for other reasons and this would determine what chemo. he has next week.
Not much other news really about Fred, as he has been the same now for quite a few days. We are thankful for that.
Our time is filled each day by the following activities. As most days are the same, weekends come and go, so the only thing different about a weekend is there are less staff here.
We usually come in around 0900h. This can be the worst time, as it generally gives you a picture of what the day will bring. Over a week ago and before it could all be a bit worrying arriving to see Fred surrounded by a number of doctors discussing how sick he has been during the night and how another problem has arisen rapidly.
Once Fred is aware we are there I will normally go and get some breakfast from the hospital canteen. The food is good and cheap so I might have a bacon sandwich for 90p, tomatoes on toast or even a mini fry-up - which would cost me up to £1.30. Rachel will normally have some cereal or toast at home as she gets up first.
We change his nappies regularly, even more so now to prevent any nappy rash forming. We have decided to use Boots brand as the Pampers/Huggies might have irritated him a bit. They did at home in any case, and that's why we stuck with the reusables. It is shame we cannot use his own nappies here but it would get too complex for all involved and we would be lugging nappies around each day. The nappies have to be taken down to the sluice room where you write Fred's name on it in marker pen and leave it next to a collection of other childrens paper bowls, bed pans and other nappies. All are named and they are each individually weighed. This gives the nurses an idea as to how much fluid is coming out.
Occasionally we have to put some cotton wool into his nappy as this is later analysed for various things using a litmus test of sorts.
He has been having the barrier cream Cavilon recently which keeps the liquid out. This seems to be keeping him happy down below too. His skin is quite dry so he gets a moisturising cream rub as well, in all his nooks and crannies. It's amazing how much "grit" gets tucked in behind his pudgy knees.
He is due a bath shortly, so will be disconnected from the pump and can have an ordinary bath. We have to be careful to keep the stopped up end of his line free of water, but otherwise sits in the warm water happily. What little hair he has gets a wash too, then he is back in his bed with a warm towel. He is much more fragile than he was so we have to be careful now.
His feeds are generally by bottle at the moment, but he gets his supplement as well. If he does not take the feed we can pop the rest down his NG tube. Before doing this you need to check that the bottom of the tube is in the stomach and not the lungs or something, so we draw a bit of fluid back out of the NG tube and test it for acidity on the litmus paper. If OK, in the milk goes in slowly. He might also get some paracetamol down there too if needed, and then you finish the tube off with a little flush of saline to keep it clear.
We try and entertain him as much as possible. Sam,the playgirl, makes a point of getting him interested whenever she can.
Fred usually goes back to his bed around 1800h ish, where he will settle quite quickly. He will normally have a feed just before this. Once he is happy, we will head off up the road. Its only a 15 minute walk so once we are back we usually cook something up and watch TV until 2300h ish, and then off to bed. Both of us normally sleep right through until the morning without waking. Other than walking alot more, we are not that active most of the day and I was surprised at how tired you can get by sitting around. I suppose worrying at times might not help.
Over the next few days I am interested in finding out how many people are reading this 'blog thing. If you can just leave a comment it will give us some idea. Just a "hello" will do. You do not have to, but I am curious as is little Fred. I think I have only actually told a handful of people and some have passed it on, which is easy to do via email.I will repeat the above request after each 'blog 'til Tuesday I reckon. The statistics currently show 8200 "page views" since I started with Day 32 having 180 views or so. It might just be one person looking every few minutes of course?
Day 42 (Fri 18 Aug)
Fri, 08/18/2006 - 23:12 — endc011
Last night there was very heavy rain and thunderstorms overhead, which affected most of the south west by the sound of it. We had a power cut, which meant we got up a bit later than normal. Our walk to the hospital was through torrential rain without an umbrella between us. Therefore we arrived soaked and with very wet feet. At least we did not have to stand out in the rain like the patients from the BRI next door, as one of their alarms was sounding.
Fred was fast asleep on his bed and looked very happy. Apparently he had had too much milk in one of his feeds (30mls every three hours) during the night and sicked it back up again. I am not sure why he had 55mls+ given to him, but he seemed settled.
Rachel was giving him a cuddle and he started to smile alot. This continued on and off for most of the day, which was lovely to see. Some of the nurses witnessed it too, and they were really pleased as well. Fred has been a bit grumpy and demanding in the past so this was a treat for us all.
As he is so alert at the moment, we do not want him to get bored. We debate taking him down to the play room as it is quiet, but he has a line in at the moment and it can get a bit tricky. We get him a pushchair and plonk him in that. At least now he can see around and he is in a different position. He is quite chuffed with this and grins as best he can. We move him to the doorway of his room, so he can look down past the nurses station to the end of the ward. People can see him clearly and it means they stop and have a quick chat which he loves. He needs to have his brain stimulated as much as he can now because it will be easy for him to get bored. When he was at home he would be going off out and about, or in the car, or watching the world in the garden. No its a magnolia wall or ceiling tile. We move him again to watch the TV in the room and he is transfixed by the news.
The doctors come in and are pleased with his progress. They say he looks so much different now, and they normally just see him in his cot. He won't smile for Joanna though despite much cooing and encouragement. He watches them intently, remembering each of their faces for the future....
The physio, Hannah, comes in and is pleased with Fred's neck and general well being. She gives him some exercises to get his arms and legs moving which he seems to like. Hannah rolls up a long towel into a horseshoe so it comes down around one side, under the backs of his legs and back up the other side. This keeps his legs slightly elevated and together, and brings his arms and shoulders forward a bit. He then is on his back, positioned centrally but not flatted out all floppy. Again he appears to be comfortable and dozes with on eye open.
The rest of the day is quiet and Fred gets a new dummy. There have been some "new" ones found in his mouth which i do not think are his, but have been sterilised. the new ones are slightly larger but he does like them at first.
He gets some milk again regularly.
He will have some kidney tests on Monday, and this will decide what chemo he has at that time. He is off antibiotics now, and is just on TPN, which is a liquid feed that goes into his Hickman line. Not the same as a full belly. The tests he had yesterday are provisionally clear again, subject to some further results.
Hopefully the meeting next week will enable a few questions we have to be answered. Also we should know the results of the MRI and CT scan too. Have heard that before, so fingers crossed again. The EEG to his head were not really accurate as Fred was quite awake when they did it. This means the results are plotted as extreme spikes and troughs and mask the real activity. We are told that the EEG probably won't be done again as Fred has not had any recent seizure thankfully. I suppose it will depend on the CT and MRI outcome.
The weekend is approaching so staff levels drop on the ward. i suspect we will meet the weekend team of doctors who come around later. Most we have met now.
We will head back earlier today i think as Fred is settled and the washing and ironing needs to be addressed. No hanging it out on the line today.
Fred's last week has been good for him as well as us, as well as the bloggers and visitors. Have a good weekend - Tim Rachel and Freddie.
Day 41 (Thu 17 Aug)
Fri, 08/18/2006 - 01:00 — endc011
Today it is raining hard and is all rather gloomy out there.
When we get in Fred is awake with Kate, the ward sister, having just given him a wash, a new nappy and changed his top. He seems content at all this attention, and is due in theatre for 1330h or after. He is due to have some chemotherapy in the spine as previously mentioned as well a lumbar puncture to check for leaukaemic cells. He also has a bone marrow aspirate too. These tend to happen every two weeks as standard. He will be under general anaesthetic, so more consent forms to sign.
He has his milk from the bottle but cannot have any more until after his op. As he cuddled up to Rachel he actually gives a broad smile to us, which lasts a few seconds. Then it is back to a grimace, as the milk has run out again. It was lovely to see him smile as it seems to show that he is happier - more like before he was ill.
Les, Jane and the gang pop into see us whilst passing. It is good to see some different faces here. We have a chat about Fred's progress, and today he looks good. His hair has gone from all around the sides now, so he has a little "nest" of hair on the top. He has about ten eyelashes to each eye now unfortunately. Eyebrows still there though.
The Tissue Viability nurse comes in to see Freds backside and hand. Both are doing well now and she gives some advice on the best cream to use for the moment.
Les and Jane head off through the rain back to Devon, and then Neil arrives. It was great to see him too. Fred was on best behaviour, and stayed awake as best he could. Neil headed off back to Devon then in between the rain clouds.
After Neil, came Frances. Fred was getting ready for theatre and again was happy to entertain despite his busy schedule. Frances said how much better he looked since her last visit, when he was in intensive care. He was on a ventilator then, and looked very poorly. He looks more Fred like now she says, which is heartening to us.
Rachel takes Fred to theatre and decides to wait for him. Fred needs more nappies so Frances and I head out into the torrential rain without coats to get some lunch and nappies. Getting soaked is not a good idea so we buy two 75p umbrellas from the local tat shop. On coming out it is sunny so they are not used. We visit good old Wetherspoons, where I find I have "won a bottle of bubbly" and a "spirit and mixer" in a charity draw I entered a few weeks ago.
Coincidentally the nominated charity is CLIC and this means they get £100.00 of ticket sales. Staff are unsure what a 'bottle of bubbly' means and I expected a bottle of Cava or Asti. They present me with two bottles of champagne and ask me to choose. Now, I have to get the most expensive if I can, so choose the one with the orange label. The wine list subsequently shows this at £30.00 a bottle, so I am happy. Poor Frances thinks it is turning into an all day drinking session when I come back to our table with our drinks as well as a bottle of champagne. We quickly hide the bottle so the manager does not come out and take it back.
I also won some free bowling tickets on the Ward 34 draw earlier in the week, so I must be lucky. Lottery next.
When we come back Fred is not there, but he turns up a few minutes later. He is mighty grumpy, and is given some extra pain killers as they had to "grind around" a bit to get the bone marrow. Sounds nasty but Fred gets his dummy and seems OK.
The doctors too are pleased with Fred and Joanna gives him his fourth gold star! Fred is pleased at this too.
His next chemo will start again next week. The dosage will be dependent on how well his kidneys are working, so we do not know what that all entails.
We still have not had the results of the MRI and CT yet. The machine to compare the two is out of action, so this is a bit of a black cloud that hangs over us all at the moment.
I have read the comments and they are lovely to read, as well as amusing. Keep them coming please. Other people who read them enjoy them too. Have to create a "family tree" of who's who maybe.....
Anyway, that's caught up with the latest now the PC is working.
Day 40 (Wed 16 Aug)
Fri, 08/18/2006 - 00:49 — endc011
This 'blog is late as the PC in the hospital was not working today (Wednesday) and I tried to update the site from my mobile, but it did not work this time.
I was in Paignton most of today having caught the 1605h back from Bristol. Rachel has kept me informed of Freds activities.
Not much change really today. He has been by a number of staff and has been happy in himself. He has been taking his feed (15mls) well each three hours, and (touch wood) has not reacted to it. This means that his fluids going in by tube can be gradually reduced which is a great help to him.
The Renal Team are pleased with him also, so it seems his kidneys are improving, or at least becoming more efficient. He is having a rest this week of some of his normal treatments, which gives him a chance to catch up on his kip and general rest.
This resting means that he has, in the last four days or so, become very alert to what is going on around him. His arms and legs are more mobile now which will hopefully strengthen them.
The pressure mattress seems to soothe him, and it is a bit like an inflated pillow. Fred sinks into it a bit.
We head back up the road after Fred has started to doze off. I have brought back the last of the food from home in a heavy bag so struggle back up the hill. All the cupboards are bare now and only pickled jalapeno peppers remain in the 'fridge.
He seems to have developed a routine of being awake in the day, sleeping little occasionally, and then kipping down for the night once the room is darkened. This is good for him as well as the night staff. He is awoken for his feeds though.
Day 39 (Tue 15 Aug)
Wed, 08/16/2006 - 07:58 — endc011
After I posted the ‘blog yesterday I went back in to see Fred. Sarah had prepared his feed bottle for me. It contained 5mls of SMA Gold, which is Fred’s favourite tipple. It only just filled the teat but once he was positioned on my lap he started chomping away like mad. It is the first time in a week that he has had any food by mouth. Sadly it finished before he realised and cried every time I tried to take the bottle away from him. I managed to substitute the bottle for a dummy and after trying to wind him, I put him back into his bed on his side. He nodded off quickly sucking frantically, making quite a noise as he did so.
I have decided to come home today, so I get into the hospital at 0700h. Fred had had an uneventful night and is on his side all swaddled up. He has forgotten about his dummy and had obviously been given drugs orally as his chin is in a right sticky state. I whispered “morning Frederick” to him and his eyes open briefly. I don’t want to wake him really but he goes back to sleep.
The train is very quiet and cold today. Rachel and her mum will get back to the hospital mid-morning.
I speak to Rachel during the day and still no word on the CT and MRI scans. He had had 10mls of milk as well every three hours, which will increase to 20mls tomorrow. He seems to be as happy as he can be today. He also had another bath today which he enjoyed. He took delivery of a pressure mattress (from intensive care) which moves about when filled with air. He is not keen on this noisy device at first, but relaxes once his radio drowns out the background noise of it. Again he has a good day.
I met up with Wayne, Claire and Mark this evening and we decided to pay a return visit to the Embassy Tavern in Paignton. Yet another belt-busting meal that was really excellent. It is well worth a visit and is in Colin Road, just opposite to where the Tembani used to be.
A few people have asked me what made us think Freddie was ill enough to visit the doctor for a second time, especially as he only appeared a bit “off-colour” for a day or two at most.
Fred had been perfectly normal up until the Wednesday or Thursday when we noted that he was not finishing his feed properly. The weather over the previous weeks had been really hot and Fred had got a bit uncomfortable in his pram and Moses basket each time he was placed in it. He would nearly always be just in his nappy, but still be really clammy on his back. We were also giving him water between feeds to keep up his fluids so we thought he had just had enough and was just not hungry. Sometimes however he would finish a whole bottle. Because of this, we were not initially overly concerned about him.
Rachel was changing Fred’s nappy in the morning and noticed a small rash on his back about the size of a kidney bean. It was a cluster of tiny red dots and our initial thought he might have meningitis. I tried to see if they faded when pressed but they did not, so we checked his temperature which was normal. We thought we had better get the rash checked out so arranged an appointment with the doctor for later in the day.
However when Fred was put into his cot he vomited for the first time ever, although only the once. Obviously worried that something was clearly not right, we called the doctor again and they said to come in immediately.
We saw a doctor who examined Fred thoroughly, and he looked at the marks and felt that as it had been really hot, Fred may not like the heat or may have a bug. I explained that the red mark may have come from one of his dummy’s which got stuck under him for a couple of hours a day or two before. He suggested Calpol and off we went.
He generally stayed the same for the next few hours. However on Friday 7 July he was sick once again. We felt that there was something still not right, but had no idea what, and called the doctors surgery once more. The main worry was how to know whether he was taking enough fluids, as he had vomited twice and had slowed down on his feeding. With the weather so hot, a baby can dehydrate rapidly so they suggested he come in a couple of hours later.
We were seen by a different doctor this time who, looking back on it, she spent a longer time examining Fred, particularly his stomach and the glands in his neck. She noted the red mark and a bruise on his thigh. We also pointed out four tiny marks, which looked like insect bites on his leg, which we had discovered after a barbecue at a friends house on the previous Sunday. She was not sure what was up with him, but decided he should be referred to A and E at Torbay Hospital just for a check up and wrote a letter for them there.
We went across and were seen immediately. We got there about 1900h and he had numerous blood tests. We were then moved up to Louisa Carey ward later that evening where we were told we might have to spend the night there.
They changed over staff at 2200h and a few more tests were done. Near midnight the nurse got us to hold a mask over his nose where they gave him Ventolin which she explained would lower his potassium levels, which were high. Again Fred was perky and was happy taking the gas. No one yet had mentioned anything untoward.
Just before 0100h on the Saturday morning the nurse came in to say that the consultant would come in and see us shortly. No one had mentioned him before and this was the first indication to us that something was about to go wrong. He came in a few seconds later, followed by a variety of concerned looking staff who filed in behind him and he sat down with us.
He explained who he was and that he had been called in from home about Fred and that the hospital laboratory had found some “abnormalities” in his blood. He also said that they had been talking with “another hospital” about the test results and that our son was a “very very poorly little boy.” We were still none the wiser (but I now knew something horrible was coming our way). Rachel says she thought that at this point he might have been diagnosed with diabetes or something like that and I was still thinking along the lines of meningitis.
The consultant had a very apologetic manner about him and went on to say that sadly Fred had been diagnosed with a form of leukaemia and that he was very ill. He reminded me of the actor (Jack Shepherd) who played ‘Wycliffe’ with the same mannerisms, facial expressions and tone of voice.
I remember looking up and around and seeing all these blank faces (there were about five of them there) looking back at us. It was not pleasant for them either and Fred was in Rachel arms drifting in and out of sleep. I am not sure why they all had to come in.
We were totally taken aback by what he had to say and he went on for a while about what will happen in the immediate future. Whilst I recall everything he said, it seemed to fade away into the background as I registered the enormity of what had just been said and what was about to happen to us all, still with his colleagues looking awkwardly at us.
Looking back on the events - and what I know now - there were some very subtle indicators that something was wrong with him. However, Fred is an active baby and he gets moved and bumped around so it would be difficult to say it was obvious.
The mark on his back was actually small broken blood vessels just under the skin (petechiae), and because his clotting and blood characteristics were so deranged they were a very common indicator. The little red marks on his legs which we thought were insect bites were not, but were petechiea as well. His liver and spleen - you can feel these by examination - were detectably enlarged a few hours later and our local doctor might have felt this, although I do not know what was in her letter to Torbay hospital. He was simply just off-colour and generally not Fred to us. As he is so small we could not know whether he had any pains but I don’t think so.
The rest, they say, is history. The ambulance and retrieval team from Bristol arrived about 0330h and they spent about an hour transferring him on to their equipment. Fred was wheeled out through the main doors to an ambulance at around 0500h just as it was getting light. He was wide awake and looked back at us as he was pushed up the ramp and set off on his journey to Bristol. We would follow shortly afterwards just as the sun was rising.
We were told by a number of people and books before Fred was born that if you ever suspect your child is unwell in anyway and you are concerned, make sure you see the doctor. If you are not happy with what the doctor says keep pestering them, or go to the hospital instead. They go on to say that the best judge of whether a child is actually ill or not is the mother which is so true. You tend to get seen quicker if the child is referred in any case. A GP may not have much experience with some serious illnesses and we are grateful the doctor who saw Fred decided on getting a second opinion.
A bit of a long winded ‘blog today.
Thursday 24 August 2006
Monday 14 August 2006
Day 38 (Mon 14 Aug)
Tue, 08/15/2006 - 02:01 — endc011
Fred had another good night and was wide awake when I came in. Rachel had stayed the night, so he had been settled again.
The team reviewed Fred as normal and they were pleased with his progress to date. They would be reviewing all of his drugs today and will try and reduce any that are no longer deemed necessary, or at least plan for the next few days. His body chemistry is sorting itself, and his legs look less puffy. They had stopped the diuretics yesterday and he had done a good job himself in processing the fluid out.
The Renal Team explained that his kidneys seemed to be perking up and were more efficient today. He had another blood transfusion last night so today looked much pinker and the blood helped flush out fluids.
He may get some milk by mouth today, but it will only be 5mls every three hours. Not enough to satisfy his empty belly but a treat in any case. The drugs he is given orally must taste good as he loves them when they are dripped in. The crushed tablets may even taste good as they disappear too. A little while later he has a chalky mouth and dribble that is difficult to wipe off when dried.
His bum looks almost healed now and there is not any broken skin.
They have said that he can have a bit of a "rest" from some treatments over the next few days, though he will go to theatre on Thursday for his chemo intrathecally - (in the spine) - as well as a lumbar puncture and bone marrow aspirate. This is to check for the current levels of leukaemia in the spinal and brain fluid, as well as the bone marrow itself. I am told that next week he will start the next lot of "full blown chemo" whatever that is. I shall have to ask.
We did not get the results of the CT and MRI scans. I was about to ask the doctors as they appeared in the afternoon, but one of Fred's neighbours suddenly had a problem that needed all hands on deck, so it was difficult to ask. I guess if there is a problem they would have come to us. Will have to ask tomorrow.
Fred went to x ray for yet another check on his NG tube.
Otherwise Fred has had a good day again today. He much more alert as well. We had a cuddle for 30 mins or so and he spent half of it studying me, whilst I studied him and then he drifted off, only to be wakened by the doctors for a check up. Joanna was pleased with him in general and his bum in particular and gave him his third gold star. He got a bit of a cheer from the others. He had some more platelets today too which will help him flush out.
When I saw him a little while ago he was in the pram (where he has been all day) sucking on his dummy in anticipation of this long promised 5mls of milk, which won't even touch the sides.
Day 37 (Sun 13 Aug)
Sun, 08/13/2006 - 23:50 — endc011
Before we left yesterday Fred's breathing rate increased to double its normal rate, to around 85 a minute. His temperature also spiked up to 38.5c quite rapidly which was unusual as he had been settled. In the hour before he had become very quiet, and not making any noise or whimpers. He was given paracetamol which seemed to work in a few minutes and withing 30 minutes his temperature his dropped back to 36c, and his breathing slowed. As he seemed happier we left for the evening.
Fred had a good night by all accounts. Today (so far to 1700h) has been one of the best days yet for him. His temperature has gone up and down a little but the doctor was not too concerned at this, but would continue to monitor it. Also his body chemistry had leveled out and the one we wanted to reduce had done so, and this meant that they could gradually stop some of the medication today. Some of them were quite high yesterday and this was what was concerning them. However, they wanted to see how much Fred could do on his own so they would keep an eye on him.
His breathing had gone back to normal, although it will increase when he has a temperature anyway. His weight had dropped which was good and his fluid were being shifted from the right places too. Again they would continue to monitor the tests to see if they need to intervene or whether Fred can have a go himself.
Since Day One - until three weeks ago - we had been regularly looking carefully at his WBC (white blood cell count) as an indicator to his progress. This went from 948 (healthy person will have 10 - 15) down to zero because of the chemotherapy killing them off purposely. White blood cells comprise of three parts, one being neutrophils. These are the strongest "good" cells that fight infection and without any white blood cells he obviously did not have any neutrophils, so he was "neutropenic" and therefore prone to infections, which could be very serious. We have started to monitor the WBC again now because he has not had any chemo for a bit, plus they have been giving him the GCSF which stimulates healthy white blood cells to start being manufactured again. So in the last few days his WBC has gone from 0 to over 7 which is good. Of the 7, he has a neutrophil count of over 4 which again is promising. These are being made in the bone marrow. None of the staff are jumping for joy, but it is what was expected (or at least supposed to happen) to we seem to be moving in the right direction. In theory there should not be any leukaemic cells left but there usually are at this stage I think.
This means that it will help Fred against bugs and infections. They have a way of checking his level of infection, and it is currently coming down gradually which again is good news.
His WBC will drop again once his next lot of chemo starts, though I am not sure when this will be yet.
Fred's bum is looking alot better now too. Maybe with the increased neutrophils it has helped him, but the skin is not broken and it is not as red as it was. It seems to be healing now, and we are taking extra care over the preparation and cleaning of his bum. He seems happier with it and does not shout when handled in that region.
So, with all that he seems to be chirpier himself, and he deserves a little bit of rest for a bit. We almost got a smile today, but he is holding on to that for the minute. All in all a good day for Fred. However....tomorrow will be the day when they compare the CT scan of a few weeks ago with the more recent MRI scan, both of his brain following the seizures he had. They will also look at the EEG results and let us know what has happened inside his head. We have not discussed this problem at all so we have no idea what the outcome will be, and how it affects Fred. They do not think any problems would affect his treatment, but that is of little consolation. Fingers crossed we have some more good news but from experience his progress can swing from good to bad quite rapidly.
I think Rachel will head home tomorrow morning as planned for a day and return on Tuesday. I am not sure of my movements this week yet.
Day 36 (Sat 12 Aug)
Sun, 08/13/2006 - 00:22 — endc011
Fred is awake when we get in and he seems active. We discuss his progress with the doctors who are on over the weekend.
He has lost quite a bit of fluid overnight, and this is evident by his legs looking much thinner.
His body chemistry remains to be up and down during the day and there is constant debate over how much fluid to give him (all the medicines are in a fluid) and over what period of time. Some of his drugs are in the syringe drivers (the auto pumps) so can be tinkered with as to amount and time.
His NG tube still is not right and he may have to go to x ray once again to check its location. A bit of pulling an dd tugging in the afternoon apparently rights it - for today.
He is a bit grumpy in the afternoon and does not really want to sleep. He is alert and follows you with his eyes and blinks if you move too near to his face.
He lies in various positions more so now, so that fluid does not collect in one area. He also does not want pressure sores!
His bum seems to be much better now and we can wash it without him shouting the place down. We tried to have the nappy off to give him an airing but he has a leaky bum today. Plus he is on the frusemide again to make him wee, so we abandoned that.
He gets more platelets and albumen toward the end of the afternoon which should see him through to late PM.
Rachel and I went to the Ward 34 fete in Castle park, and parted with some money. The weather was good today so the numbers were up. We bought a courgette loaf which had been made by one of Fred's regular nurses - Alyson - and she had made loads of cakes. Could only manage the one, as we have another at home which June brought with her on Wednesday.
So at 1730h, Fred's progress had not been really great. I am not sure what the implications are of Fred holding on to fluids for such a time. It seems we get the fluid out OK, but it returns again a short time later, so it does not cure the problem. I understand that it is all to do with the kidneys playing up a bit, which upsets the balance of everything else.We hope that tomorrow will be better in that Fred sheds his excess overnight.
Day 35 (Fri 11 Aug)
Sat, 08/12/2006 - 01:23 — endc011
The weather is much cooler now so is better for Fred as well as us.
The doctors do their rounds today and are concerned at a number of things. Nothing new, but they have been problems that have been hanging around for quite a while, coming and going, and not really doing Fred any favours.
He is quite puffy from the waist down once again, and his legs and ankles are really chubby with fluid. They have been trying to give him diuretics in the past which has worked rapidly, but it has not solved the problem. They will discuss new ways of shifting the fluid at their ward meeting.
The Renal Team are also concerned that his kidneys are not doing what they should be doing efficiently, and this is having an effect on his body chemistry, which causes him other problems. Again this will be discussed at the meeting.
Generally Fred seems to quite content and his temperature is normal. This seems to enable to rest properly, and with his blood transfusions and platelets in the last 24 hours, he seems very pink and almost Fred-like. His circulation seems to be better again, though that might change once again.
His bum looks to be clearing up at last. We changed him a few times and the broken skin is still there, but it does not cause him the same amount of pain when changed. We continue to apply the gel dressings, as Fred settles almost immediately afterwards now. He is pooing regularly which i think is a good sign, though he has not had any food for two or three days. No wonder he is tetchy.
We asked about some of the tests, and they confirmed that the bone marrow aspirate (sample) taken two weeks ago, showed that there were not any leukaemic cells in his marrow which was expected. This does not literally mean "zero" I think, as it is very difficult to get rid of them quickly, and rogue cells tend to lurk in hidey-holes and wait a few years if necessary. However, it showed that the induction phase had done its job.
They are not going to artificially increase his neutrophils (good white cells) and they hope he should be able to do this naturally from now on. Apparently the benefits to start fighting infection become apparent fairly rapidly, so this might help his bum out a bit, and keep new bugs at bay. Once he starts the next course of chemotherapy, they will drop again, but should at least maintain a few. He will get his aspariginaise in the second cycle as previously mentioned and this will not compromise his treatment.
He also had an EEG (electroencephalogram) which records the brains electrical activity. This test is about one or two weeks late, and was requested following Freds seizures the day before he came out of Intensive Care. i do not know what the result was as it was all spikey graphs on a laptop. He had about 10 stick on probes to his bonce, and wore a net hat to keep them on. We had a difficult time getting rid of the glue out of his hair afterwards. His hair is slowly disappearing and there a little strands on the sheets or where ever he has been. We have saved some for him just in case he needs a moustache later.
The MRI and CT scans to his brain which were done previously will be reviewed on Monday, as will the EEG data.
He had another x ray today as the NG tube in his nose may still not be in the right position. Fred will be cross if it has got to be moved again. I think this is the third time in a week they have tampered with it.
Hannah the physio has been in and shown me how to bend his arms a bit. He is tending to lie still with them above his head and she feels he needs to keep them moving so he does not stiffen up, and it gives him something different to do. His neck movement is now better, and she can crank his head almost 180 degrees again. Two weeks ago his head swivel was 50% of that, so that is good.
The staff are readying themselves for the weekend and the new lot have familiarised themselves with Fred's problems. Hopefully he will have a quiet weekend. Tomorrow is Ward 34 fete in Castle Park. We will go along, as it is to raise funds for the wards baby massage service which is not funded by the NHS. Fred has had a bit of that and it seemed to settle him down and he was happy. It is also good for colic, as Fred had that when he was new born, and a spot of massage helped him bring the wind out.
So far Freds week has allowed him to rest a bit more. Tomorrow is the beginning of our sixth week here. Have a good weekend.
Day 34 (Thu 10 Aug)
Fri, 08/11/2006 - 01:10 — endc011
I caught the train up with my mum and dad and met up with Rachel and her mum. My stomach was a little full after last evenings meal at the Embassy Tavern in Paignton. Really good food and company made it a great break too.
It had been another good night for Fred, and Rach had spoken with the doctors. His bum looks a little better and they will continue with the gel dressings for the time being. He is continuing to get antibiotics for a bit but his temperature is down again now, and he was swaddled up proper when I saw him. He got a bit chilly in the night so looked happy enough amongst his blankets.
He has retained more fluid again and his ankles have puffed up again. Someone had put socks on him overnight but they ended up being a bit tight, and were difficult to get off in the morning. Bigger socks I think, or ones that are more stretchy. Some of the fluid is lurking in places where it is more difficult to escape so he is getting some human albumen, which I guess is like a protein which pushes it out of the tissue. Possibly.
His salts and other chemicals seem OK at the moment and they have stopped supplementing him with a few. He is having a clear liquid feed for the next few days, and this will slow his bowels down a bit. They have also tried to stoop a few other treatments as they feel needs a "break" from all these treatments for a day or two. With this, Fred has actually had the best sleep in a long while - at least two weeks. He had some blood again today (I don't think they did it last evening) so that will make him feel better in himself.
They are going to continue with the last two doses of aspariginaise (one of the four types of chemo) although this will be given in the next stage early on. We did not want him to miss out on this, and neither did the doctors as it is very important the protocol is followed. They are not going to give him donated white blood cells but will let him have another treatment which will help him increase the good white cells more rapidly. That should then be able to help him with infection, and rid him of the nappy rash. They are going to give him something to encourage an increase in the number of these cells which we hope will work. It is GCSF or "granulocyte colony stimulating factor" and I have no idea what it does or how quickly it all happens.
Fred is a wee bit bald on one side now, but it is thinning gradually. It was wearing away in places in any case.
In conclusion I think he looks better to me, and the doctors visits have reduced a little bit. We have not had the results of the MRI or bone marrow yet.
Mum and dad headed off in a taxi to get to Temple Meads, and we later escorted June back to the coach station. Whilst we there we saw Al Nedjari the actor. Rachel saw him first and he was waiting for the 040 National Express to London. You will all know Al from his excellent role as Samir Rachid in Coronation Street in 1994 - 1995. He played the Moroccan waiter who married Deidre. Her daughter Tracey had a kidney problem and he ended up donating his after being attacked on the tow path of the canal in Weatherfield. His untimely death was May 1995 I think. I managed to sneak a picture of him sitting in the concourse just before he boarded the coach. Deidre went on to be convicted of perverting the course of justice and fraud when she got involved with Jon Lindsay, the bogus airline pilot.
So Fred's day seems to be quite good. He can cry if he really wants to, which is a bit reassuring in a way. The nurses are all used to him being a bit unsettled during the night, so it is a novelty for them to have a compliant Fred.
Day 33 (Wed 09 Aug)
Thu, 08/10/2006 - 06:44 — endc011
I am heading home today, so I go in to see Fred at 0700h. I am told by the nurses that he has had a very good night, and has been really settled. Fred is asleep when I go in but stirs when I speak to him. He tries to cry but not much comes out other than a dry croak. He looks comfortable though and goes back to sleep after a couple of minutes of grumbling.
I catch the train home and bump into my mum outside the railway station. I also see Hal from the office who is heading for the station lavatory before a meeting, and we have a quick chat about things.
I have loads to sort today so head back to home on the bus. I do not get it all done, but may be back next week or the week after. It is very difficult to be away from home with all our day to day stuff here.
I speak to Rachel later on. Fred has had a good day as well, and seems as happy as he can be. She has spoken with the doctors and their main concern is the infection risk with his sore bum. Apparently it is worse now, which is a shame. It is a hard area to treat because of where it is (and all the bugs that live in that environment), and when he is moved about it clearly hurts him so much. We have tried many different creams and applications but it seems just to stay. I think they want to persevere with Sarahs (nurse) idea of applying the cooled gel dressings a bit more.
Because it is now a serious infection site they have decided that something needs to be done urgently. The suggestion is to get his white blood cell count back up as quickly as possible, so as to deal with infection. The antibiotics seem to working as his temperature has dropped to normal once again (36.6c). He once went up to 39c+. Our initial concern is that they will not do the last two or three doses of chemotherapy of this initial stage, so that the white cells can start to increase sooner. We were told from the outset that it was very important that he completes as much chemo as possible, but some of it was delayed because of various infections he had, which set him back from the fixed programme. I guess its a toss up between allowing the white cells to increase by not giving chemo (and therefore deal with his infected bum sooner and naturally) or to carry on with the chemo but deal with his bum on a day to day basis hoping the antibiotics can hold off any serious problems. I do not know which would be quicker or better. The doctors are to discuss with others elsewhere (who create the "protocol" of treatment) as to what will be best. We can only leave it in their hands as to the way forward.
There is a train of thought that they can give him white blood cells extracted from donated blood to help him on his way. Apparently we might not be the best candidates in this scenario for a number of reasons, so it would presumably come from the Blood Bank. We will find out more tomorrow I hope.
His kidneys seem to be shaping up OK. He had to go down for yet another x ray as his NG tube was still causing problems and it was repositioned again a bit higher up.
I visited Amanda today and saw little James who was born a few weeks after Fred, on the 6 May. He is growing rapidly and was sitting in his spongy armchair when I went around. He seemed happy and dribbly and is doing well and has changed alot since I last saw him. I also pop in to see Dawn, Emily and Charlotte and catch up on the local gossip, which was a nice break.
I went out in the evening with Wayne and Claire, plus the twins Adam and Tim, for a bite to eat. Rachel rang again to tell me the latest though there was not any new news, other than he had had a good day again. He is due to be transfused with more blood tonight which will help him along a bit.
I am back on the train tomorrow morning early, along with my mum and dad who are going to visit Fred for the day.
I have looked at the statistics for this 'blog which make interesting reading. Since I created the weblog (24 July) there have been 4041 "page views" with Day 20 being the most popular at 120 viewings. If you are interested you can subscribe to receive an email each time a new update is posted. If you leave a comment, it is interesting reading for Rachel and I, as well as Fred I hope sometime in the future. Don't forget that all can see your posting too!
We have not heard anymore about the results of his MRI scan, or his testing of bone marrow. He was due for a lumbar puncture again today but that was postponed, along with his chemo, due to him being not so good.
Day 32 (Tue 08 Aug)
Wed, 08/09/2006 - 01:33 — endc011
Rachel is away today early, heading home, but she rang me at 0800h.
Fred had another good night really, although he had a mild temperature. He had fed during ther night but was settled.
When I got in Fred was asleep and comfortable. When he awoke I thought how ill and tired he looked. His eyes did not sparkle like normal and he looked thoroughly sickly. Which he is of course. He skin looks a bit drier and wrinkly but is a better colour than before. He is starting to lose his hair now and his trademark eye lashes have started to drop out. I think thats what changes his appearance subtley, but I have not seen him for a few days.
The doctors did the rounds and they noted that Freds temperature had gone up again and his stomach was more distended. He has another infection now although again it is difficult to place where is relating to. After much stomach poking Joanna suggests he goes down to radiology for a chest and abdominal x ray. No one really explained why as they had gone before I could ask.
We head down and he gets his two "flashes" and he is well behaved. He seems to like the flat pram he is in, and ends up staying in there most of the day anyway. No point in dragging him around. He heads back up to the ward and I go for some lunch.
When I get back I give him a feed, though he only wants 15mls from the bottle. He also has more ulcers in his mouth, one quite large. His bum looks OK, but not that much better to me. The blisters are open now, and hopefully when dressed will heal.
I am told that he needs to go back down to radiology for an ultrasound of his stomach. Again, none of the doctors are around to tell me why so we head off to the 3rd floor. More worry. I end up going in with Fred and do not want to watch the screen if I can help it. I did see some of his "workings" and it looked like a lava lamp to me - all this stuff glooping around. I was shown his spine and bladder, and saw some stationary poo. I am told that there is not anything unusual there. The good thing is no blisters or ulcers to the liver or spleen, and no blockages in the guts.
Back on ward I speak to the doctors. They explain that Fred has an infection and they were wanting to check out his stomach. That looked all clear. Also the chest x rays are clear today so no infection there.
I asked about his MRI scan. The doctor explained the results of the MRA scan, (that's Angiogram) where they looked at the circulation of the brain and that was OK which was good. Did not know that there was such a thing, and nor did the nurse either.... The equipment to compare the MRI and the CT would not work, so they would look at that tomorrow.
The results of the tests to his spinal fluid (done two Fridays ago) must be OK as we have not heard anything and if there was a problem they would have needed to aletr the treatment.
So, his guts have slowed right down again, but are clear. He may be getting an infection form these bugs or his bum, or his Hickman line. They will give antibiotics this afternoon. He will not be fed his normal milk, so his guts can rest. He will get his nutrients via a clear fluid over the next few hours.
He will also get some pain relief and some more platelets this evening. As I am typing these were started 25 minutes ago.
He has not been sick recently and whilst he seems to be holding onto fluids again, he is not as bad as I feared during the day, what with all these tests.
This is whats actually tires you out. Just sitting and worrying about things really makes you want to kip at night.
I will come in early to see Freddie tomorrow.
Claire said she could not see the link to make comments on this 'Blog anymore. Nor can I. I don't know where it has gone but if anyone finds it can they let me know?
Day 31 (Mon 07 Aug)
Tue, 08/08/2006 - 03:31 — endc011
Today was dry but dull. The weather has turned a lot cooler now which is much more comfortable.
My cold hangs on, so it is another day that I cannot see little Fred. Rachel goes in as normal.
I want to register at the library so go there. Forgot I need some i. d. so that was a wasted journey.
Fred went off to theatre for a general anaesthetic at about 1030h. This was done in the BRI next door to the childrens hospital. He needed to be totally still when he went through the scanner. No one has told us when the results will be known, so we have to wonder for a few hours/days longer. Rachel said that the doctors were happy with him today.
His heart rate, temperature, blood pressure and salts were all OK. He has got some colour back now, with him having rosy cheeks yesterday. The pinkness tends to fade after a few days, when he is given blood again. I am not sure how much blood he has been given to date, but he has also had plasma and platelets too.
There are only five families in the house at the moment though we rarely see them as they are in a different part of the house. It makes the house really quiet for the time being. They are on the two floors above. The communal freezers in CLIC House have been auditted by the Manager. A load of stuff has been discarded which is either out of date, or is un-named. There is a load of stuff which is in date but the owners are not known, and these have been put in the "help yourself" tray which has yet to be made public. I have spied a few things which will make there way down to our bag.
Rachel rings to tell me that Fred is running out of nappies, so I have to trek up to Somerfield. There are emergency supplies at the hospital but parents are expected to bring their own. When I get there, the only ones are the type that I think gives him nappy rash and that he can do without. I will go to Boots tomorrow to get some of theirs from there. Rachel is travelling back to Devon tomorrow so hopefully I can go in to see Freddie. She should be back on Wednesday soemtime. We might get the results of his MRI then.
Day 30 (Sun 06 Aug)
Mon, 08/07/2006 - 04:26 — endc011
I decided to stay away again today, as I have developed a cold with a runny nose. My sore throat has more or less gone, but I still feel a bit rough. I think I should stay away tomorrow again, unless I feel 100% tomorrow.
Rachel calls me to say that Fred was unsettled last night and had been sick again. They have decided slow down the rate of feed he is getting, and spread it over three hours. I assume this is to enable him to digest it gradually. They have also given him some medicine to keep the feed down, which hopefully will work. Some days he is good with his feed, others he goes back to square one. The dieticians have tried various fomulae over the last few weeks. He has had his standard SMA Gold, Kindergen, high calory milk, as well as a thicker gloopier mix that will hopefully stay down. For some reason he tolerates it some days, and does not others. I suppose with all his treatment he is bound to feel sick sometimes. Trouble is, it is difficult to tell why.
He had a slight temperature overnight which might have been why he was sick, but that dropped during the day. The doctor was fairly happy with Fred over the last 24 hours and his blood pressure has remained satisfactory. His other body chemicals have remained stable which means less interference. The more fluids given to him, the more the balance seems to get upset. A bit like carrying a full bowl of water really.
He was well enough to have a bath today although he did not enjoy it by all accounts. Afterwards he is usually swaddled in a towel and he nods off quite quickly.
He also had some more chemotherapy today which is on schedule. His neutrophils are at zero now which is good in one way but bad in another. This hopefully means they can start climbing again, so that he can start to fight infection sometime in the future. The staff confirmed Freds MRI slot as between 0900h and 1100h tomorrow - Monday. We really hope the news is good...... His bum is getting better. The general redness has reduced and the "blisters" seem to be drying out after bursting. He got another chilled dressing today from Sarah and this makes him a lot more comfortable. She has been looking after Fred over the last few days but is now off until Thursday.
The dreaded mouth ulcers seem to be increasing as Rachel spied another on his top gum. I have not asked what treatment he can have for them, but will do when we can. Whilst Rachel was at his bedside I had to entertain myself.
There was a "slow food" market on in the town and as I have little else to do, I go to see what?s there. It is in the usual market area and is really a regular farmers market. I see some traders we have met before and have a brief chat. I also manage to get some food half price for our lunch, which was good. Some of the stuff was over priced, but it all looked good. I wandered around for a while and started to get hungry. I head home early afternoon as I am worn out now - all this walking must be doing us good. Have only driven on two occasions in the last four weeks. As I have little to do this afternoon as well I make some pasties for our dinner, as well as stilton ones, for our lunch tomorrow.
Rachel left him fast asleep on his back, lying in his favourite position. He still sings (or mumbles) to himself in his sleep, but we do not know what he is trying to say.
Day 29 (Sat 5 Aug)
Sun, 08/06/2006 - 02:49 — endc011
On the way home last night we were walking up Robin Hood Steps and I saw a driverless car starting to creep down the hill, which is quite steep. There was a man standing by the car, and I shouted to him and pointed to it. He calmly looked around, looked at me and carried on fiddling with his phone. When I got to the car, it had just caught the kerb and rolled into another car, though did not cause any damage. The man on the 'phone explained he did not know what I was on about, but thought someone was in the car. He went onto explain that he had borrowed someones spectacles and could not see very well. He was also pie-eyed which was the real reason, so I propped the back wheels with some wood and left the licensee of the adjacent pub and matey with the borrowed glasses to deal with it.
I woke up this morning with a sore throat, and felt a bit achey. Sadly this means that it would be silly for me to go and see Fred as I would probably give him an infection. He is neutropenic (no neutrophils) at the moment which means he does not have resistance to infection. Me spluttering over him will not do him any favours.
Rachel headed off to the hospital leaving me at home. She had a chat with the nurses who said I had better stay away but she could still visit. If she felt unwell, then she should go home too.
She rang mid-morning and explained that Fred had been really good through the night and this morning had taken to the bottle again. He had tried 10mls at first and then he guzzled another 40mls later on. He is topped up to 100mls via his NG tube. One of the doctors reviewed yesterdays x-rays and felt that the NG tube was not positioned correctly so adjusted it once more. Again Fred did not appreciate the help that was being given. It is hoped that in this position Fred won't want to be sick after his feed.
The Renal Team came again and spoke to Rachel. They explained that only one kidney was damaged, and this was what was causing him to "leak" (salts or acids?) and this hopefully will sort itself. They seemed really pleased with his progress to date.
Rachel also spoke with the doctors working the weekend and they thought he was much more stable. I think his background morphine has been reduced to zero, with an amount being administered when it is really needed.
She also thought that his bum looked a little better, which I hope is the case.
Most of his tubes are disconnected today (at least for the moment) which means he is easier to handle. He weighed about 6.8kg a couple of days ago. This is less than his pre-admission weight, but I suppose that is to be expected. He did weigh somewhere about 8.5kg a few days earlier although that was fluids, which have now been expelled.
Without tubes he is more mobile so I reckon he will get more cuddles from Rachel today. I hope she gives him a big squeeze from me. I expect I won't be able to visit him for a day or two really.
So after exactly one month we have seen Fred go from totally "normal" to being in intensive care. I am not sure what he would have been like without treatment but spent the next three weekes on a roller coaster of progress with him being seriously ill a lot of the time. The last week has resulted in him levelling out and being more relaxed in him self. Obviously the leukaemia is still the main short and long term worry to us. I hope that this progress in some way prepares him for a good start in some form of remission. Good progress now does not reflect in the eventual outcome, but I hope that it shows Fred has strength and fitness to be able to tolerate all the forthcoming treatments.
Our other worries now are the results of the MRI scan next week. This will be an in depth investigation into the small shadows on his earlier brain scan. The doctors will then be able to explain what implications, if any, there will be, both in the short and long term.
Another is what the damage to his kidney means whilst he is recovering and whether this will affect him in the future. I think they will carry out more tests in the next few weeks.
He has also been having short bouts of high blood pressure which he can do without, as this has adverse effects on him in other areas, particularly at the moment.
We do not know what is good progress and what is not, but Fred does not appear to have deteriorated to us, and the doctors seem to be happy with him so far. Fingers crossed.
I have done todays Blog on my PDA sitting in the front room in front of the TV, shelling some peas I bought earlier. Most families have gone home for the weekend, and I think there is only two other families in at the moment.
I had a go at Spiderman on the Play Station but could not get the hang of it.
Rachel comes back. Fred was behaving well this afternoon. He fed a bit more from the bottle. He also produced some big poo, which seems to be returning to normal colour and volume....
She and Sarah the nurse were having a look into Freds mouth, and noticed he had an ulcer. This was to be expected as the treatment is likely to produce a number of these. Usually food by mouth is stopped as it becomes too painful. Poor little Fred. One ulcer can make you feel rotten, let alone a few more. The nurse also thought that a tooth was coming through, although this sounds a bit early? Can do without teething problem methinks.
I will see how I am tomorrow morning, but will probably stay away.
Tue, 08/15/2006 - 02:01 — endc011
Fred had another good night and was wide awake when I came in. Rachel had stayed the night, so he had been settled again.
The team reviewed Fred as normal and they were pleased with his progress to date. They would be reviewing all of his drugs today and will try and reduce any that are no longer deemed necessary, or at least plan for the next few days. His body chemistry is sorting itself, and his legs look less puffy. They had stopped the diuretics yesterday and he had done a good job himself in processing the fluid out.
The Renal Team explained that his kidneys seemed to be perking up and were more efficient today. He had another blood transfusion last night so today looked much pinker and the blood helped flush out fluids.
He may get some milk by mouth today, but it will only be 5mls every three hours. Not enough to satisfy his empty belly but a treat in any case. The drugs he is given orally must taste good as he loves them when they are dripped in. The crushed tablets may even taste good as they disappear too. A little while later he has a chalky mouth and dribble that is difficult to wipe off when dried.
His bum looks almost healed now and there is not any broken skin.
They have said that he can have a bit of a "rest" from some treatments over the next few days, though he will go to theatre on Thursday for his chemo intrathecally - (in the spine) - as well as a lumbar puncture and bone marrow aspirate. This is to check for the current levels of leukaemia in the spinal and brain fluid, as well as the bone marrow itself. I am told that next week he will start the next lot of "full blown chemo" whatever that is. I shall have to ask.
We did not get the results of the CT and MRI scans. I was about to ask the doctors as they appeared in the afternoon, but one of Fred's neighbours suddenly had a problem that needed all hands on deck, so it was difficult to ask. I guess if there is a problem they would have come to us. Will have to ask tomorrow.
Fred went to x ray for yet another check on his NG tube.
Otherwise Fred has had a good day again today. He much more alert as well. We had a cuddle for 30 mins or so and he spent half of it studying me, whilst I studied him and then he drifted off, only to be wakened by the doctors for a check up. Joanna was pleased with him in general and his bum in particular and gave him his third gold star. He got a bit of a cheer from the others. He had some more platelets today too which will help him flush out.
When I saw him a little while ago he was in the pram (where he has been all day) sucking on his dummy in anticipation of this long promised 5mls of milk, which won't even touch the sides.
Day 37 (Sun 13 Aug)
Sun, 08/13/2006 - 23:50 — endc011
Before we left yesterday Fred's breathing rate increased to double its normal rate, to around 85 a minute. His temperature also spiked up to 38.5c quite rapidly which was unusual as he had been settled. In the hour before he had become very quiet, and not making any noise or whimpers. He was given paracetamol which seemed to work in a few minutes and withing 30 minutes his temperature his dropped back to 36c, and his breathing slowed. As he seemed happier we left for the evening.
Fred had a good night by all accounts. Today (so far to 1700h) has been one of the best days yet for him. His temperature has gone up and down a little but the doctor was not too concerned at this, but would continue to monitor it. Also his body chemistry had leveled out and the one we wanted to reduce had done so, and this meant that they could gradually stop some of the medication today. Some of them were quite high yesterday and this was what was concerning them. However, they wanted to see how much Fred could do on his own so they would keep an eye on him.
His breathing had gone back to normal, although it will increase when he has a temperature anyway. His weight had dropped which was good and his fluid were being shifted from the right places too. Again they would continue to monitor the tests to see if they need to intervene or whether Fred can have a go himself.
Since Day One - until three weeks ago - we had been regularly looking carefully at his WBC (white blood cell count) as an indicator to his progress. This went from 948 (healthy person will have 10 - 15) down to zero because of the chemotherapy killing them off purposely. White blood cells comprise of three parts, one being neutrophils. These are the strongest "good" cells that fight infection and without any white blood cells he obviously did not have any neutrophils, so he was "neutropenic" and therefore prone to infections, which could be very serious. We have started to monitor the WBC again now because he has not had any chemo for a bit, plus they have been giving him the GCSF which stimulates healthy white blood cells to start being manufactured again. So in the last few days his WBC has gone from 0 to over 7 which is good. Of the 7, he has a neutrophil count of over 4 which again is promising. These are being made in the bone marrow. None of the staff are jumping for joy, but it is what was expected (or at least supposed to happen) to we seem to be moving in the right direction. In theory there should not be any leukaemic cells left but there usually are at this stage I think.
This means that it will help Fred against bugs and infections. They have a way of checking his level of infection, and it is currently coming down gradually which again is good news.
His WBC will drop again once his next lot of chemo starts, though I am not sure when this will be yet.
Fred's bum is looking alot better now too. Maybe with the increased neutrophils it has helped him, but the skin is not broken and it is not as red as it was. It seems to be healing now, and we are taking extra care over the preparation and cleaning of his bum. He seems happier with it and does not shout when handled in that region.
So, with all that he seems to be chirpier himself, and he deserves a little bit of rest for a bit. We almost got a smile today, but he is holding on to that for the minute. All in all a good day for Fred. However....tomorrow will be the day when they compare the CT scan of a few weeks ago with the more recent MRI scan, both of his brain following the seizures he had. They will also look at the EEG results and let us know what has happened inside his head. We have not discussed this problem at all so we have no idea what the outcome will be, and how it affects Fred. They do not think any problems would affect his treatment, but that is of little consolation. Fingers crossed we have some more good news but from experience his progress can swing from good to bad quite rapidly.
I think Rachel will head home tomorrow morning as planned for a day and return on Tuesday. I am not sure of my movements this week yet.
Day 36 (Sat 12 Aug)
Sun, 08/13/2006 - 00:22 — endc011
Fred is awake when we get in and he seems active. We discuss his progress with the doctors who are on over the weekend.
He has lost quite a bit of fluid overnight, and this is evident by his legs looking much thinner.
His body chemistry remains to be up and down during the day and there is constant debate over how much fluid to give him (all the medicines are in a fluid) and over what period of time. Some of his drugs are in the syringe drivers (the auto pumps) so can be tinkered with as to amount and time.
His NG tube still is not right and he may have to go to x ray once again to check its location. A bit of pulling an dd tugging in the afternoon apparently rights it - for today.
He is a bit grumpy in the afternoon and does not really want to sleep. He is alert and follows you with his eyes and blinks if you move too near to his face.
He lies in various positions more so now, so that fluid does not collect in one area. He also does not want pressure sores!
His bum seems to be much better now and we can wash it without him shouting the place down. We tried to have the nappy off to give him an airing but he has a leaky bum today. Plus he is on the frusemide again to make him wee, so we abandoned that.
He gets more platelets and albumen toward the end of the afternoon which should see him through to late PM.
Rachel and I went to the Ward 34 fete in Castle park, and parted with some money. The weather was good today so the numbers were up. We bought a courgette loaf which had been made by one of Fred's regular nurses - Alyson - and she had made loads of cakes. Could only manage the one, as we have another at home which June brought with her on Wednesday.
So at 1730h, Fred's progress had not been really great. I am not sure what the implications are of Fred holding on to fluids for such a time. It seems we get the fluid out OK, but it returns again a short time later, so it does not cure the problem. I understand that it is all to do with the kidneys playing up a bit, which upsets the balance of everything else.We hope that tomorrow will be better in that Fred sheds his excess overnight.
Day 35 (Fri 11 Aug)
Sat, 08/12/2006 - 01:23 — endc011
The weather is much cooler now so is better for Fred as well as us.
The doctors do their rounds today and are concerned at a number of things. Nothing new, but they have been problems that have been hanging around for quite a while, coming and going, and not really doing Fred any favours.
He is quite puffy from the waist down once again, and his legs and ankles are really chubby with fluid. They have been trying to give him diuretics in the past which has worked rapidly, but it has not solved the problem. They will discuss new ways of shifting the fluid at their ward meeting.
The Renal Team are also concerned that his kidneys are not doing what they should be doing efficiently, and this is having an effect on his body chemistry, which causes him other problems. Again this will be discussed at the meeting.
Generally Fred seems to quite content and his temperature is normal. This seems to enable to rest properly, and with his blood transfusions and platelets in the last 24 hours, he seems very pink and almost Fred-like. His circulation seems to be better again, though that might change once again.
His bum looks to be clearing up at last. We changed him a few times and the broken skin is still there, but it does not cause him the same amount of pain when changed. We continue to apply the gel dressings, as Fred settles almost immediately afterwards now. He is pooing regularly which i think is a good sign, though he has not had any food for two or three days. No wonder he is tetchy.
We asked about some of the tests, and they confirmed that the bone marrow aspirate (sample) taken two weeks ago, showed that there were not any leukaemic cells in his marrow which was expected. This does not literally mean "zero" I think, as it is very difficult to get rid of them quickly, and rogue cells tend to lurk in hidey-holes and wait a few years if necessary. However, it showed that the induction phase had done its job.
They are not going to artificially increase his neutrophils (good white cells) and they hope he should be able to do this naturally from now on. Apparently the benefits to start fighting infection become apparent fairly rapidly, so this might help his bum out a bit, and keep new bugs at bay. Once he starts the next course of chemotherapy, they will drop again, but should at least maintain a few. He will get his aspariginaise in the second cycle as previously mentioned and this will not compromise his treatment.
He also had an EEG (electroencephalogram) which records the brains electrical activity. This test is about one or two weeks late, and was requested following Freds seizures the day before he came out of Intensive Care. i do not know what the result was as it was all spikey graphs on a laptop. He had about 10 stick on probes to his bonce, and wore a net hat to keep them on. We had a difficult time getting rid of the glue out of his hair afterwards. His hair is slowly disappearing and there a little strands on the sheets or where ever he has been. We have saved some for him just in case he needs a moustache later.
The MRI and CT scans to his brain which were done previously will be reviewed on Monday, as will the EEG data.
He had another x ray today as the NG tube in his nose may still not be in the right position. Fred will be cross if it has got to be moved again. I think this is the third time in a week they have tampered with it.
Hannah the physio has been in and shown me how to bend his arms a bit. He is tending to lie still with them above his head and she feels he needs to keep them moving so he does not stiffen up, and it gives him something different to do. His neck movement is now better, and she can crank his head almost 180 degrees again. Two weeks ago his head swivel was 50% of that, so that is good.
The staff are readying themselves for the weekend and the new lot have familiarised themselves with Fred's problems. Hopefully he will have a quiet weekend. Tomorrow is Ward 34 fete in Castle Park. We will go along, as it is to raise funds for the wards baby massage service which is not funded by the NHS. Fred has had a bit of that and it seemed to settle him down and he was happy. It is also good for colic, as Fred had that when he was new born, and a spot of massage helped him bring the wind out.
So far Freds week has allowed him to rest a bit more. Tomorrow is the beginning of our sixth week here. Have a good weekend.
Day 34 (Thu 10 Aug)
Fri, 08/11/2006 - 01:10 — endc011
I caught the train up with my mum and dad and met up with Rachel and her mum. My stomach was a little full after last evenings meal at the Embassy Tavern in Paignton. Really good food and company made it a great break too.
It had been another good night for Fred, and Rach had spoken with the doctors. His bum looks a little better and they will continue with the gel dressings for the time being. He is continuing to get antibiotics for a bit but his temperature is down again now, and he was swaddled up proper when I saw him. He got a bit chilly in the night so looked happy enough amongst his blankets.
He has retained more fluid again and his ankles have puffed up again. Someone had put socks on him overnight but they ended up being a bit tight, and were difficult to get off in the morning. Bigger socks I think, or ones that are more stretchy. Some of the fluid is lurking in places where it is more difficult to escape so he is getting some human albumen, which I guess is like a protein which pushes it out of the tissue. Possibly.
His salts and other chemicals seem OK at the moment and they have stopped supplementing him with a few. He is having a clear liquid feed for the next few days, and this will slow his bowels down a bit. They have also tried to stoop a few other treatments as they feel needs a "break" from all these treatments for a day or two. With this, Fred has actually had the best sleep in a long while - at least two weeks. He had some blood again today (I don't think they did it last evening) so that will make him feel better in himself.
They are going to continue with the last two doses of aspariginaise (one of the four types of chemo) although this will be given in the next stage early on. We did not want him to miss out on this, and neither did the doctors as it is very important the protocol is followed. They are not going to give him donated white blood cells but will let him have another treatment which will help him increase the good white cells more rapidly. That should then be able to help him with infection, and rid him of the nappy rash. They are going to give him something to encourage an increase in the number of these cells which we hope will work. It is GCSF or "granulocyte colony stimulating factor" and I have no idea what it does or how quickly it all happens.
Fred is a wee bit bald on one side now, but it is thinning gradually. It was wearing away in places in any case.
In conclusion I think he looks better to me, and the doctors visits have reduced a little bit. We have not had the results of the MRI or bone marrow yet.
Mum and dad headed off in a taxi to get to Temple Meads, and we later escorted June back to the coach station. Whilst we there we saw Al Nedjari the actor. Rachel saw him first and he was waiting for the 040 National Express to London. You will all know Al from his excellent role as Samir Rachid in Coronation Street in 1994 - 1995. He played the Moroccan waiter who married Deidre. Her daughter Tracey had a kidney problem and he ended up donating his after being attacked on the tow path of the canal in Weatherfield. His untimely death was May 1995 I think. I managed to sneak a picture of him sitting in the concourse just before he boarded the coach. Deidre went on to be convicted of perverting the course of justice and fraud when she got involved with Jon Lindsay, the bogus airline pilot.
So Fred's day seems to be quite good. He can cry if he really wants to, which is a bit reassuring in a way. The nurses are all used to him being a bit unsettled during the night, so it is a novelty for them to have a compliant Fred.
Day 33 (Wed 09 Aug)
Thu, 08/10/2006 - 06:44 — endc011
I am heading home today, so I go in to see Fred at 0700h. I am told by the nurses that he has had a very good night, and has been really settled. Fred is asleep when I go in but stirs when I speak to him. He tries to cry but not much comes out other than a dry croak. He looks comfortable though and goes back to sleep after a couple of minutes of grumbling.
I catch the train home and bump into my mum outside the railway station. I also see Hal from the office who is heading for the station lavatory before a meeting, and we have a quick chat about things.
I have loads to sort today so head back to home on the bus. I do not get it all done, but may be back next week or the week after. It is very difficult to be away from home with all our day to day stuff here.
I speak to Rachel later on. Fred has had a good day as well, and seems as happy as he can be. She has spoken with the doctors and their main concern is the infection risk with his sore bum. Apparently it is worse now, which is a shame. It is a hard area to treat because of where it is (and all the bugs that live in that environment), and when he is moved about it clearly hurts him so much. We have tried many different creams and applications but it seems just to stay. I think they want to persevere with Sarahs (nurse) idea of applying the cooled gel dressings a bit more.
Because it is now a serious infection site they have decided that something needs to be done urgently. The suggestion is to get his white blood cell count back up as quickly as possible, so as to deal with infection. The antibiotics seem to working as his temperature has dropped to normal once again (36.6c). He once went up to 39c+. Our initial concern is that they will not do the last two or three doses of chemotherapy of this initial stage, so that the white cells can start to increase sooner. We were told from the outset that it was very important that he completes as much chemo as possible, but some of it was delayed because of various infections he had, which set him back from the fixed programme. I guess its a toss up between allowing the white cells to increase by not giving chemo (and therefore deal with his infected bum sooner and naturally) or to carry on with the chemo but deal with his bum on a day to day basis hoping the antibiotics can hold off any serious problems. I do not know which would be quicker or better. The doctors are to discuss with others elsewhere (who create the "protocol" of treatment) as to what will be best. We can only leave it in their hands as to the way forward.
There is a train of thought that they can give him white blood cells extracted from donated blood to help him on his way. Apparently we might not be the best candidates in this scenario for a number of reasons, so it would presumably come from the Blood Bank. We will find out more tomorrow I hope.
His kidneys seem to be shaping up OK. He had to go down for yet another x ray as his NG tube was still causing problems and it was repositioned again a bit higher up.
I visited Amanda today and saw little James who was born a few weeks after Fred, on the 6 May. He is growing rapidly and was sitting in his spongy armchair when I went around. He seemed happy and dribbly and is doing well and has changed alot since I last saw him. I also pop in to see Dawn, Emily and Charlotte and catch up on the local gossip, which was a nice break.
I went out in the evening with Wayne and Claire, plus the twins Adam and Tim, for a bite to eat. Rachel rang again to tell me the latest though there was not any new news, other than he had had a good day again. He is due to be transfused with more blood tonight which will help him along a bit.
I am back on the train tomorrow morning early, along with my mum and dad who are going to visit Fred for the day.
I have looked at the statistics for this 'blog which make interesting reading. Since I created the weblog (24 July) there have been 4041 "page views" with Day 20 being the most popular at 120 viewings. If you are interested you can subscribe to receive an email each time a new update is posted. If you leave a comment, it is interesting reading for Rachel and I, as well as Fred I hope sometime in the future. Don't forget that all can see your posting too!
We have not heard anymore about the results of his MRI scan, or his testing of bone marrow. He was due for a lumbar puncture again today but that was postponed, along with his chemo, due to him being not so good.
Day 32 (Tue 08 Aug)
Wed, 08/09/2006 - 01:33 — endc011
Rachel is away today early, heading home, but she rang me at 0800h.
Fred had another good night really, although he had a mild temperature. He had fed during ther night but was settled.
When I got in Fred was asleep and comfortable. When he awoke I thought how ill and tired he looked. His eyes did not sparkle like normal and he looked thoroughly sickly. Which he is of course. He skin looks a bit drier and wrinkly but is a better colour than before. He is starting to lose his hair now and his trademark eye lashes have started to drop out. I think thats what changes his appearance subtley, but I have not seen him for a few days.
The doctors did the rounds and they noted that Freds temperature had gone up again and his stomach was more distended. He has another infection now although again it is difficult to place where is relating to. After much stomach poking Joanna suggests he goes down to radiology for a chest and abdominal x ray. No one really explained why as they had gone before I could ask.
We head down and he gets his two "flashes" and he is well behaved. He seems to like the flat pram he is in, and ends up staying in there most of the day anyway. No point in dragging him around. He heads back up to the ward and I go for some lunch.
When I get back I give him a feed, though he only wants 15mls from the bottle. He also has more ulcers in his mouth, one quite large. His bum looks OK, but not that much better to me. The blisters are open now, and hopefully when dressed will heal.
I am told that he needs to go back down to radiology for an ultrasound of his stomach. Again, none of the doctors are around to tell me why so we head off to the 3rd floor. More worry. I end up going in with Fred and do not want to watch the screen if I can help it. I did see some of his "workings" and it looked like a lava lamp to me - all this stuff glooping around. I was shown his spine and bladder, and saw some stationary poo. I am told that there is not anything unusual there. The good thing is no blisters or ulcers to the liver or spleen, and no blockages in the guts.
Back on ward I speak to the doctors. They explain that Fred has an infection and they were wanting to check out his stomach. That looked all clear. Also the chest x rays are clear today so no infection there.
I asked about his MRI scan. The doctor explained the results of the MRA scan, (that's Angiogram) where they looked at the circulation of the brain and that was OK which was good. Did not know that there was such a thing, and nor did the nurse either.... The equipment to compare the MRI and the CT would not work, so they would look at that tomorrow.
The results of the tests to his spinal fluid (done two Fridays ago) must be OK as we have not heard anything and if there was a problem they would have needed to aletr the treatment.
So, his guts have slowed right down again, but are clear. He may be getting an infection form these bugs or his bum, or his Hickman line. They will give antibiotics this afternoon. He will not be fed his normal milk, so his guts can rest. He will get his nutrients via a clear fluid over the next few hours.
He will also get some pain relief and some more platelets this evening. As I am typing these were started 25 minutes ago.
He has not been sick recently and whilst he seems to be holding onto fluids again, he is not as bad as I feared during the day, what with all these tests.
This is whats actually tires you out. Just sitting and worrying about things really makes you want to kip at night.
I will come in early to see Freddie tomorrow.
Claire said she could not see the link to make comments on this 'Blog anymore. Nor can I. I don't know where it has gone but if anyone finds it can they let me know?
Day 31 (Mon 07 Aug)
Tue, 08/08/2006 - 03:31 — endc011
Today was dry but dull. The weather has turned a lot cooler now which is much more comfortable.
My cold hangs on, so it is another day that I cannot see little Fred. Rachel goes in as normal.
I want to register at the library so go there. Forgot I need some i. d. so that was a wasted journey.
Fred went off to theatre for a general anaesthetic at about 1030h. This was done in the BRI next door to the childrens hospital. He needed to be totally still when he went through the scanner. No one has told us when the results will be known, so we have to wonder for a few hours/days longer. Rachel said that the doctors were happy with him today.
His heart rate, temperature, blood pressure and salts were all OK. He has got some colour back now, with him having rosy cheeks yesterday. The pinkness tends to fade after a few days, when he is given blood again. I am not sure how much blood he has been given to date, but he has also had plasma and platelets too.
There are only five families in the house at the moment though we rarely see them as they are in a different part of the house. It makes the house really quiet for the time being. They are on the two floors above. The communal freezers in CLIC House have been auditted by the Manager. A load of stuff has been discarded which is either out of date, or is un-named. There is a load of stuff which is in date but the owners are not known, and these have been put in the "help yourself" tray which has yet to be made public. I have spied a few things which will make there way down to our bag.
Rachel rings to tell me that Fred is running out of nappies, so I have to trek up to Somerfield. There are emergency supplies at the hospital but parents are expected to bring their own. When I get there, the only ones are the type that I think gives him nappy rash and that he can do without. I will go to Boots tomorrow to get some of theirs from there. Rachel is travelling back to Devon tomorrow so hopefully I can go in to see Freddie. She should be back on Wednesday soemtime. We might get the results of his MRI then.
Day 30 (Sun 06 Aug)
Mon, 08/07/2006 - 04:26 — endc011
I decided to stay away again today, as I have developed a cold with a runny nose. My sore throat has more or less gone, but I still feel a bit rough. I think I should stay away tomorrow again, unless I feel 100% tomorrow.
Rachel calls me to say that Fred was unsettled last night and had been sick again. They have decided slow down the rate of feed he is getting, and spread it over three hours. I assume this is to enable him to digest it gradually. They have also given him some medicine to keep the feed down, which hopefully will work. Some days he is good with his feed, others he goes back to square one. The dieticians have tried various fomulae over the last few weeks. He has had his standard SMA Gold, Kindergen, high calory milk, as well as a thicker gloopier mix that will hopefully stay down. For some reason he tolerates it some days, and does not others. I suppose with all his treatment he is bound to feel sick sometimes. Trouble is, it is difficult to tell why.
He had a slight temperature overnight which might have been why he was sick, but that dropped during the day. The doctor was fairly happy with Fred over the last 24 hours and his blood pressure has remained satisfactory. His other body chemicals have remained stable which means less interference. The more fluids given to him, the more the balance seems to get upset. A bit like carrying a full bowl of water really.
He was well enough to have a bath today although he did not enjoy it by all accounts. Afterwards he is usually swaddled in a towel and he nods off quite quickly.
He also had some more chemotherapy today which is on schedule. His neutrophils are at zero now which is good in one way but bad in another. This hopefully means they can start climbing again, so that he can start to fight infection sometime in the future. The staff confirmed Freds MRI slot as between 0900h and 1100h tomorrow - Monday. We really hope the news is good...... His bum is getting better. The general redness has reduced and the "blisters" seem to be drying out after bursting. He got another chilled dressing today from Sarah and this makes him a lot more comfortable. She has been looking after Fred over the last few days but is now off until Thursday.
The dreaded mouth ulcers seem to be increasing as Rachel spied another on his top gum. I have not asked what treatment he can have for them, but will do when we can. Whilst Rachel was at his bedside I had to entertain myself.
There was a "slow food" market on in the town and as I have little else to do, I go to see what?s there. It is in the usual market area and is really a regular farmers market. I see some traders we have met before and have a brief chat. I also manage to get some food half price for our lunch, which was good. Some of the stuff was over priced, but it all looked good. I wandered around for a while and started to get hungry. I head home early afternoon as I am worn out now - all this walking must be doing us good. Have only driven on two occasions in the last four weeks. As I have little to do this afternoon as well I make some pasties for our dinner, as well as stilton ones, for our lunch tomorrow.
Rachel left him fast asleep on his back, lying in his favourite position. He still sings (or mumbles) to himself in his sleep, but we do not know what he is trying to say.
Day 29 (Sat 5 Aug)
Sun, 08/06/2006 - 02:49 — endc011
On the way home last night we were walking up Robin Hood Steps and I saw a driverless car starting to creep down the hill, which is quite steep. There was a man standing by the car, and I shouted to him and pointed to it. He calmly looked around, looked at me and carried on fiddling with his phone. When I got to the car, it had just caught the kerb and rolled into another car, though did not cause any damage. The man on the 'phone explained he did not know what I was on about, but thought someone was in the car. He went onto explain that he had borrowed someones spectacles and could not see very well. He was also pie-eyed which was the real reason, so I propped the back wheels with some wood and left the licensee of the adjacent pub and matey with the borrowed glasses to deal with it.
I woke up this morning with a sore throat, and felt a bit achey. Sadly this means that it would be silly for me to go and see Fred as I would probably give him an infection. He is neutropenic (no neutrophils) at the moment which means he does not have resistance to infection. Me spluttering over him will not do him any favours.
Rachel headed off to the hospital leaving me at home. She had a chat with the nurses who said I had better stay away but she could still visit. If she felt unwell, then she should go home too.
She rang mid-morning and explained that Fred had been really good through the night and this morning had taken to the bottle again. He had tried 10mls at first and then he guzzled another 40mls later on. He is topped up to 100mls via his NG tube. One of the doctors reviewed yesterdays x-rays and felt that the NG tube was not positioned correctly so adjusted it once more. Again Fred did not appreciate the help that was being given. It is hoped that in this position Fred won't want to be sick after his feed.
The Renal Team came again and spoke to Rachel. They explained that only one kidney was damaged, and this was what was causing him to "leak" (salts or acids?) and this hopefully will sort itself. They seemed really pleased with his progress to date.
Rachel also spoke with the doctors working the weekend and they thought he was much more stable. I think his background morphine has been reduced to zero, with an amount being administered when it is really needed.
She also thought that his bum looked a little better, which I hope is the case.
Most of his tubes are disconnected today (at least for the moment) which means he is easier to handle. He weighed about 6.8kg a couple of days ago. This is less than his pre-admission weight, but I suppose that is to be expected. He did weigh somewhere about 8.5kg a few days earlier although that was fluids, which have now been expelled.
Without tubes he is more mobile so I reckon he will get more cuddles from Rachel today. I hope she gives him a big squeeze from me. I expect I won't be able to visit him for a day or two really.
So after exactly one month we have seen Fred go from totally "normal" to being in intensive care. I am not sure what he would have been like without treatment but spent the next three weekes on a roller coaster of progress with him being seriously ill a lot of the time. The last week has resulted in him levelling out and being more relaxed in him self. Obviously the leukaemia is still the main short and long term worry to us. I hope that this progress in some way prepares him for a good start in some form of remission. Good progress now does not reflect in the eventual outcome, but I hope that it shows Fred has strength and fitness to be able to tolerate all the forthcoming treatments.
Our other worries now are the results of the MRI scan next week. This will be an in depth investigation into the small shadows on his earlier brain scan. The doctors will then be able to explain what implications, if any, there will be, both in the short and long term.
Another is what the damage to his kidney means whilst he is recovering and whether this will affect him in the future. I think they will carry out more tests in the next few weeks.
He has also been having short bouts of high blood pressure which he can do without, as this has adverse effects on him in other areas, particularly at the moment.
We do not know what is good progress and what is not, but Fred does not appear to have deteriorated to us, and the doctors seem to be happy with him so far. Fingers crossed.
I have done todays Blog on my PDA sitting in the front room in front of the TV, shelling some peas I bought earlier. Most families have gone home for the weekend, and I think there is only two other families in at the moment.
I had a go at Spiderman on the Play Station but could not get the hang of it.
Rachel comes back. Fred was behaving well this afternoon. He fed a bit more from the bottle. He also produced some big poo, which seems to be returning to normal colour and volume....
She and Sarah the nurse were having a look into Freds mouth, and noticed he had an ulcer. This was to be expected as the treatment is likely to produce a number of these. Usually food by mouth is stopped as it becomes too painful. Poor little Fred. One ulcer can make you feel rotten, let alone a few more. The nurse also thought that a tooth was coming through, although this sounds a bit early? Can do without teething problem methinks.
I will see how I am tomorrow morning, but will probably stay away.
Saturday 5 August 2006
Day 28
Sat, 08/05/2006 - 01:10
When we came in this morning Fred was having a cuddle and some milk from the bottle and seemed quite happy. Rachel took over from Sarah the nurse. He only decided to have a bit, but the bottle seemed to comfort him.
The Renal Team came along again to have a closer look and wandered off again. Did not have a chance to hear what they had to say but will chase them up on Monday. The usual ward round happened and they were fairly happy with Fred. Joanna gave him a gold star yesterday as he been a good boy.
We kept an eye on his bum which is still very painful looking. There are about six different areas of broken skin, that are more visible now. The general redness is reducing though, which hopefully lead to him being more comfortable.
They have reduced his morphine again a little bit, but he can have extra if necessary. This has normally been when we move him about significantly, or change his nappy.
He gets a bath again, which goes quite well. He also has a visit downstairs for a chest x ray as his NG tube in the nose was pulled out a bit by him yesterday. The pictures show it in the right position, so it gets taped down again much to Freds anger. He soon nods off once we have changed his nappy and applied the cool gel dressing.
He is due a transfusion of blood this evening as well as some more potassium. His chemistry is slowly balancing out but there is always something to worry about. He is going for his MRI scan to the brain on Monday and we will be able to see in more detail if there are any problems in that area. Hopefully not, but they have a habit of appearing just when you do not want any more difficulties for him. Haven't a clue what that would entail. The kidney scare is enough for us at the moment.
We get some instruction on how to maintain his Hickman Line (the line into his chest). These are prone to infection or movement, and we are given a pack to deal with minor and major accidents to it. Nothing much in it really other than some clamps and tubes and dressings.
We also have a chat about when Fred can have treatment nearer to home. No date is known yet but they run through it all the same. It will be some considerable time though because of his age. The sooner we know something the better so that we can try and plan a few things. We will have been here for one month tomorrow. It has certainly flown by and I feel we have been here for months. It makes coming home for a few hours nice, though I have always wanted to head back here to make sure Freds OK and not on his own. There would always be one of us here in any case.
He has his feed by tube later in the afternoon and is not interested in the bottle.
The staff are limbering up for the weekend here again. It seems that Fridays must be the Juice Run as I hear orders being placed by phone for various cocktails, and they arrive 30 minutes later by courier. I have seen this behaviour before.
I tinkered with the background settings today of this Blog and thought it looked cheerful.
Probably will cahnge it again in a few days.
In general seems to be fairly settled but unhappy. Hopefully he will have a quiet weekend without incident.
Day 27
Fri, 08/04/2006 - 01:44 — endc011
Fred was asleep when we went in, though stirred shortly afterwards.
He had another big poo that looks more normal now and he was more relaxed after that. They came in and reduced the amount of morphine he was having, and he was asleep the majority of the time.
The Renal Team visited him again and explained to us the damage that had been caused to his kidneys, though they suspected the reason for the excess acid in his blood was something quite simple to deal with. Hopefully it will be that, and any damage to the kidneys are recoverable.
There was some suggestion that this may have happened in the chaotic first few days when he was in ICU. We will have to see whats going to happen there, but again they did suggest it was too bad.
We had our blood taken today for tissue matching, though I do not know how long that all takes to get a result. It has been explained that we are not likely to be able to give bone marrow to Fred because we will only be half-matches.
He was a bit gripey this afternoon and has been sick a few times. His blood pressure has gone up a little bit, though he seems to have calmed down a bit now. He sounded a bit husky today. Don't know whether the reduced morphiine means he has more pain or not.
His bum is looking better to me, though it is still sore looking. Hopefully he will have a quiet few days to clear his backside.
Day 26
Thu, 08/03/2006 - 00:59 — endc011
Woke this morning at the normal time - 0630h. Forgotten my shaver and deodorant so had to pop over to Sainsburys for a quick shop.
Amanda kindly offered to drive me back to Bristol this morning so I had time to visit mum and dad briefly. After a white knuckle ride (she kindly switched my airbag on) from Paignton we got here just before lunch. It took 45m to get from Paignton to Newton Abbot and 1 hour to get from Newton Abbot to Bristol........
Fred was asleep when we got here and had a relatively peaceful morning. He had been a bit noisy earlier but his bum is still hurting. They think the broken areas of skin are slightly worse and this seems to be confirmed by Fred.
He is went down to x ray to have his kidneys scanned for damage as he has excess acid in his blood at the moment. This is raising his blood pressure which makes him breathe harder. The results come back that there are not any clots but it appears there is some damage. This should repair itself and likely occurred when he was in his initial treatment in ICU. Some of the chemotherapy drugs have side effects which cause damage to kidneys. As I think kidneys are regenerative (?) I hope this is a small problem. The doc does not seem to concerned and they were looking for other things which were not there.
We give him a bath which cause him some temporary upset and tend to his sorely bum. The nurse puts a cool gel covered gauze dressing on the areas that are broken, and it looks like a burns dressing. That keeps him a bit more cheerful.
He is also on morphine at the moment which can be altered on demand if he is particularly annoyed. On the few occasions it is used he seems to calm down quickly and allows him to kip.
He is resting at the moment and we will be heading back up the hill shortly.
Thanks for the messages guys. They are good to read, and give me something to look forward to. Good to see Tony is clambering aboard Rhythmic Beat. Hope you fixed all those mechanical and electrical faults this year. Make sure K does not use the toilet on board either, and bottoms up when you have the vin diesel.
Day 25
Wed, 08/02/2006 - 08:23 — endc011
I popped in to see Fred early this morning, just before I caught the 0808h train from Bristol to Paignton. I found him lying on his front, fast asleep with his bum exposed to the air. The nurse Hayley had rigged up an air hose to blow over his bum to help it heal. He seemed happy and did not wake up despite me talking to him. Thankfully he was connected to a monitor to check his breathing.
She said that Fred had had a really good night and was tolerating his feeds well. Whilst he had been a little sick, he seemed relaxed. With that in mind I headed off toward rain clouds.
We are now starting our fourth week here and it seems like a lot longer. We have spent a grand total of £8.00 on parking charges. I spent that amount after a few hours parked at Torbay when little Fred was born! Fred is more “himself” at the moment, but that has a habit of rapidly changing overnight, which makes things a lot more difficult. The worst bit is going in first thing in the morning to see how he has been.
At five months old he has been through more than I ever have, and had more injections than I ever hope to have. So far nearly a fifth of his life has been stuck in hospitals.
I think back on what we have all had to experience and to date, during his “remission induction” of three weeks and three days, he has:
Been subjected to numerous tests and procedures which are continuing on a daily basis
Almost started chemotherapy on a regular basis, which results in his body chemistry going totally out of sync. with everything else for the first two weeks plus. The side effects of chemotherapy sometimes do not make pleasant reading either
Been to theatre three times under general anaesthetic to have his lumbar punctures, chemo. administered into his spinal fluid and a sample of bone marrow taken
Severe oedema which gave him an additional weight of around 2kg
The rapid drop of white blood cells, resulting in tumourlysis, for a few days. This is treated with a variety of drugs and was to be expected. The haemofiltration filter helped clear some of the stuff plus the excess fluid
A couple of mild seizures, which may have been the result of a blood clot, or mini stroke. He will have some further tests in time
A serious infection when he was quite vulnerable anyway, which resolved itself after a few days
X rays to check for pneumonia and bowel problems which again seem to have cleared now
Numerous other scares about marks, blotches and bumps that seem to be insignificant
Generally being very poorly, and when he has improved, the doctors telling you how poorly he actually been
Looking back on that I wondered what progress we have actually made. Long term, we do not know. Short term and Fred has improved remarkably from when he was first admitted and seems to have stabilised himself. He looks more like our little son and his habits are creeping back. Smiles are the best treats though. He seems to have tolerated all of the procedures without any noticeable adverse reactions. We have also accepted all of these procedures as “normal” and whilst it is worrying, we accept it is all for the best.
And Fred still manages to squeeze out a little grin every now and then when he feels it is warranted, but it does get tiring just watching him be unhappy. It is good that we can give him a cuddle and he does like that most of the time. Also he has been having the occasional bath, which he enjoys greatly. He always has, with the exception of his first few when I suspect the water was actually too cold. He has been riding his imaginary bicycle in the bath too which was nice to see.
Whilst the hospital strollers are a bit battered, he is not too proud to happily sit in one and drops off immediately once he is on the move.
The nurses and doctors we have experienced are so dedicated in what they do, and this can take a lot of worry away as it is reassuring. Fred (or The Fredster as Sister calls him) also does not seem to have any complaints about the nurses regularly manhandling him. He is wary when the rubber gloves can be heard being put on though.
I rang Rachel this afternoon to see what he has been doing today and heard him in the background protesting loudly about something. They have stopped giving him his “maintenance fluid” which I assume are a sign he is stabilising chemically. I would hope then that he can have a bit of peace internally, other than the chemotherapy which comes in various phases.
I am off out this evening to meet up with friends, which will make a change.
The next bit of text will be after a couple of pints so may be factually incorrect, offensive or poorly typed.
I spoke to Rachel again and he seems to have another good day.
I had a few pints at the pub, plus some grub, with Hayley R and Wayne. Tomorrow I get a lift back to Bristol with Amanda, which is gratefully received. Hopefully his bum will have improved a bit so that he can settle more.
Day 24
Tue, 08/01/2006 - 02:10 — endc011
Rachel stayed overnight, in Freds room. There is only one fold down bed so I headed off home. Fred was sick before I headed back so it meant that Raceh was even more worried about him choking in the night. he was failry fractious by all accounts and R had about an hours kip she reckoned.
I spoke to her as she was heading along the embankment to join the M5 on her way home to her mum and dads.
I got here a short while afterwards and Fred had been disruptive. He did not want a bottle and basically cried all day, stopping for power naps in his buggy. His bum is getting better in that the redness is reducing, but he has a few areas of broken skin that when they come into contact with poo or wee, must sting like crazy. He howls at the top of his voice, and when he is doing this constatntly whilst you hold him, its very distressing. Then suddenly he will quieten down and have a long nap. Then, as his nappy refills, he shouts again. We are changing him as best we can, and he gets regular creams but there is not much else to do.
He takes about 70mls happily which is good. No sickness yet and the longer its inside the better.
At times he is normal Fred. Eyes wobbling about, occasional swallowing, then pinching his face up. nearly had a smile I think.
As I say, most of the day he is unsettled, but I take him to the play room and chat to one of the other mums. her son has been here for four years plus, but they live a few miles away. Fred is still the youngest in here, but he is favourite with the nurses. When he is on form he can really charm them. Shame about his backside though.
He has his deluge of drugs through the day. He is alot less puffier than before although he has a slight temperature that bobs up and down. I hope it is not another infection. That's all we need.
I stay until about 1900h and Fred goes back to his bed and I give his tummy a massage. Its reducing in size and his hands are alot better now. His feet are a bit like satsumas, but they are improving.
It tipping down with rain at the moment and I do not have a coat yet. I have carrier bags and I have access to unlimited numbers of plastic aprons, but no coat. Will have to get one tomorrow if I come home.
Spoke to Paul in the office today. he had been speaking with the Anthony Nolan Trust about doing a "corporate" blood letting exercise at the Council. Rachel and I thought it was a brilliant idea, and if it does not directly assist Fred, then someone else will definately benefit. "It Could Be You" as they say......
Anyway, I hope that things work out for Freds bone marrow. We do not know much at moment about the topic, but I guess thats around the corner soonish.
Well, the rain is still out there and I will trudge up the hill, past the friendly chip shop man. Must remember to get the key from the room otherwise I will have to climb in the window.
Day 23
Mon, 07/31/2006 - 03:16 — endc011
Freds day today has been similar to yesterdays in that he has been very settled and quite quiet. He has slept alot too, so hopefully has gained from his rest.
When we came in first thing today, he been sick earlier. This sometimes happens when he has been feeding, and with all of the drugs he is on at the moment it is no wonder he feels so grotty. His legs are still pretty puffy though when we weigh him he has lost around 0.5kg (or 0.5 litre) of fluid since the last time. he should be heading back to his pre-hospital weight of about 7.3kg. He weighed 15lb 2oz when he was 15 weeks and 2 days old. He seems to hold the water and gain weight rapidly, but loses it a little more slowly.
The room is alot cooler now so he seems less clammy. We change his nappy regularly because of his weeing. No poo yet but this will hopefully come in time.
We pop out to the coffee shop in the BRI, and get the paper. Nothing much happening in the world except the usual troubles.
On the way back I talk to a friend who I have not spoken with for quite a while, and that is Kenzie. She was not aware of Freds illness and we have a long chat about things. It is nice to catch up some old news, and I give her Freds Blog address. Seems to be a useful medium, although I am not sure what other uses it has.
We head home slightly earlier than normal and have something to eat. Rachel is going to stay with Fred tonight in the bed in the room. If he wakes in the night (which is normal) he will wake her too. At least he can get a longer cuddle than he may get off the nurses..... He gets his food three hourly at the moment through this tube, so there will be some activity around R's bed. Tomorrow she is heading home for an overnight stay, returning on Wednesday. She will be staying up at her ma and pa's place. I will head down on Tuesday for a bit. There are so many things I need to do that I have been putting off for. Need to cancel some direct debits, pay some bills, do some correspondence. I do not know whether I will have time for all of the things I have planned to do, but have made a list so that I can strike them off. Need a haircut too. Mum and dad have all our post at the moment, so I can collect that.
I also need a haircut.
I have been trying to add some pictures to this Blog thing but it does not let me. I will try it as home if I have time. Must cancel the broadband as well I suppose.
On our return Freds nappy is changed again. He settles and I head off up the hill back to CLIC House. The evenings are drawing in now, with the summer nearly being over.
Day 22
Sun, 07/30/2006 - 01:11 — endc011
Weather has turned today and rain is forecast. I had a text from Dawn who said that it was raining in Hayle at the time.
Fred has a good night, and was fairly calm when we arrived. He was just livening up and Charly was just about to give him some feed. She said he had been good, which is a postive sign for the day.
As it is the weekend, the two doctors discuss Fred and whats going to happen with him over the weekend. He is getting heavy with fluid again and is about 1 kg more than yesterday. This causes problems with swelling of the legs and hands, which is mainly uncomfortable. He is given more Frusemide - a diuretic - (or froozy juice) to make him wee more. He is going to get some more calcium and protein, as well some more blood as well which should perk him up a bit.
Fred does not do a great deal today, and has mainly been relaxed and sleeping alot. He is catching up on his lost kip.
One of Rachels friends, Kay, visits which is really nice. We sit with Fred and chat about all sorts of things. Fred is well behaved at the moment and does not fly off into a tantrum. He has also had 60ml of liquid by bottle and seems to be retaining that happily.
He has yet another large runny poo which is a good sign that stuff is moving through. He has not really had much in the last week or two, so things will slow down. Better out than in, I say. We clean up his bum which is not as sore now. Cannot see any broken skin but he seems more comfortable "down below." That was the prime suspect for his illness earlier on in the week.
We see Kay off late afternoon, which coincides with Freds next feed. We discuss how much to give him, and we will try 50mls tonight. Given gently he should be able to cope with it. Otherwise its will be "NG" - naso-gastric tube which is probably a lot less satisfying for him, as well as us.
Fred is really heavy to hold at the moment and it is difficult to bounce him into a comfortable position. Not just because of the tubes and lines, but he is a bit weaker now and we do not want to wobble his little head unecessarily. He has been giving people his big blue eyes treatment today. Hopefully the puffiness won't spread beack to his face, as it causes his little peepers to close up.
We are off to Asda in a while to get some provisions. It had just started to rain when we popped out. I realise that I do not have a coat or anything here at the moment.
We need also to renew our car park permit. Normally without a permit it is £15.00 plus a day, we get a permit from the hospital for £2.00 a week which is good for us.
Anyway, we hope Fred will have a quiet weekend. We may even be able to scoot home next week, as there as so many little jobs that need to be done that have been put to one side.
Day 21
Sat, 07/29/2006 - 00:56 — endc011
Yesterday evening, I left before Rachel. When she got back she explained that Fred had done a particularly large poo, which was a sign that things were starting to move again. Most pleasing.
Today (Friday) we come in and find Fred has been grumpy for a while and unsettled. He is 'nil by mouth' again and has been since 0730h, so is also very hungry. He is due to go to theatre again today for another set of procedures. Two of them have been done before, and a third is being done for the first time.
Under general anaesthetic, he has a lumbar puncture to test the spinal and cerebral fluid for leukaemia cells. His last one was more or less clear, but they then inject a chemotherapy drug back in to do its job, just in case. The third procedure is a bone marrow aspirate, which involves a needle drawing off some marrow from the hip bone, for testing.
We are due to tested soon to see if we match. It is unlikely as we will probably be half-matches, but they test anyway regardless.
I end up in A and E myself (in the Bristol Royal Infirmary) next door this morning too. Not quite on the same scale as young Fred, but its still painful to me. I have a blister on my foot which has burst and gone a bit funny. Its embarassing going into the NHS Walk In Centre for something so trivial. Anyway, they agree it could become infected and treat it all within 15 minutes of arriving.
Freds ready to go to theatre when I come back. He is still unsettled, but promptly falls asleep as we wheel him down. Rachel takes him through with the nurse, and he is fast asleep as they put him to sleep. We get a call an hour later saying he is ready for collection.....
He is fine but even hungrier now! Well gripey. He will get a feed soon.
The doctors are generally pleased with him at the moment, except for a few mild problems. Joanna gave him a gold star yesterday as he was doing so well. Hopefully this will continue gradually.
He has a feed, though only 30mls via a tube but its better than nothing. If he tolerates that he will get more this evening.
My foot still hurts. I am complaining about being a bit sore, and Fred has not complained once about all he is having.
I have had some lovely email and messages today, which makes home seem alot closer. I am sent a message from my colleague Emma, and I see that Elizabeth Raikes (Chief Exec Torbay Council) has mentioned Freds plight in her weekly letter. It refers to other colleagues wishing to get involved in things like going on the blood and bone marrow register, as well as other practical things to help. Its really nice and cheers up Rachel as well as me no end.
Rachel and I registered as blood/marrow donors a couple of days ago. I was always nervous of it before and it did not seem relevant. I can reassure you that whatever you do, or don't do, you do not know when you will need it. Bad luck can tiptoe up on anyone, no matter who they are.
Anyway, it is Friday at the hospital, and like the Council, everything almost shuts down. There will be a few doctors around and hopefully Fred will have a good weekend.
Day 20
Fri, 07/28/2006 - 00:55 — endc011
We come in tentatively, not knowing how the night went. He had had a good night and his temp. was down to 37.7, although wavering. His heart beat was at 110bpm so this had settled too. He generally seemed to be OK, and the doctors were pleased that he seemed to have sorted himself out.
They agree that this is an opportunity to do his chemo. and other treatments that have been put off, so move rapidly with getting it sorted.
We give him a proper bath and wash his bum. He likes that and is wrapped up in a fluffy towel. He soon is off to sleep, quite relaxed. His hair is all fluffy and waves about in the breeze of the fan. He seems to be more settled now which must be good for him.
There had been a really bad smell in the Parents Kitchen, which I noticed when we first came in. It seemed to coming from the locker above ours. It got to a point where I did not really want to go into the room as it was so bad. I spoke with the administrator and she arranged for Estates to break open the locker to see what was in there. he turned up sometime later and forced the lock. There was a mouldy loaf of bread in there that was causing the smell. There was some grumbling that it was not his job to do such things, and that they should have contacted another department.
Fred continued withg his next bit of chemo. as planned although a few days behind schedule. He is still a bit puffy but he has been worse.
Rach tries to give him some milk from a bottle and he happily slurps 30ml of the stuff. Thats a first too. He has not been interested in a bottle, hence the Speech Therapist wanting to come in a re-educate him on such matter. Cannot give too much as he will sick it back up. He has not had much food for several days and his stomach might not like it. He seems content with the stuff anyway and drops off back to sleep.
I wander off to take the car up to the shops to get some food. Our accomodation is really good. We have a bedroom with wardrobe, tables and bedside cabinet. Lamp and clock radio and a window which overlooks the garden as well. Just down the hall is a nice sized shower room with power shower and wc and basin, plus hanging space. The front room is a nice size as well, with a dining table and two small settees. There is a patio door to the garden and pations with tables and chairs outside. The garden also has a barbecue area which looks well used. The TV, DVD and video are all new looking and this accomodation is just for us and another girl. She comes from the south west as well but does not stay all the time like us. She is due back this evening I think she said. This means the fridge space will become slightly less, so we tend to buy fresh food daily or every other day. There are bigger communal freezers in another part of the house which I need to investigate. Trouble is they are all full. Someone has seen fit to fill up some of the shelves with bags of ice cubes. I will grumble that some people are shopping and storing weeks or months worth of food in the freezers, which is not really the idea.
I also saw fit to complain to "my" local councillor about the bushes, branches and brambles that are over hanging the footpath on the route in. I get a response back that she has referred it to an officer. I will await contact.
Day 19
Wed, 07/26/2006 - 19:18 — endc011
We get down to the hospital a bit later than normal. We are greeted by Peter, who normally works in the bone marrow treatment ward (BMT.) Fred has not been too good last night and has been sick again. His temp. is remaining high and he is not right again. Whilst his breathing is efficient, it is a bit laboured. His stomach is quite distended now and this could be for a number of reasons. They decide to take him down for a chest and abdomen x-ray. There is a possiblity that the cause of his fever is pnuemonia, and they want to see if there are problems in his bowel and gut as things have slowed down to zero in that area. Fred looks quite uncomfortable. We get down there OK, but on the way back up the lifts have all packed up. We debate carting him up by pushchair but this is not ideal. He is happy where he is at the moment. Apparently the heat is causing the lifts to shut down if the motor room gets too hot. They cool down and come back on again.
His bum is also a problem, plus it is hot in the room despite his fan on him. All 'round, Fred is causing the doctors concern. Given his poorly condition, they are getting behind with his chemo. plans and he really needs to lose the fever in the next 24 hours. His temp. goes up and his heart rate is around 195.
The x-rays come back. Thankfully his chest is clear and it appears there is a swelling in his gut. Soemthing is stuck and it will be referred to a radiographer for a second opinioin. His view is that it might even be a hernia causing the problems.
We have had so many obstacles it seems each time there is a problem it is a major one. Fred is already really ill with his leukaemia, and it seems so unfair he is getting a further battering through all of this. Thankfully the hernia theory does not appear to be correct but I suppose there is still a possibility.
His fever continues and he really is poorly again today. He stays the same but they hope that tomorrow he will be better. If not they will re-think some of his plans, or at least have to continue with some of the treatment regardless of his current illness.
Before we go home Joanna says his kidneys have really picked up, (and not packed up) and his other results seems promising. She gives him a silver star for today......
Sat, 08/05/2006 - 01:10
When we came in this morning Fred was having a cuddle and some milk from the bottle and seemed quite happy. Rachel took over from Sarah the nurse. He only decided to have a bit, but the bottle seemed to comfort him.
The Renal Team came along again to have a closer look and wandered off again. Did not have a chance to hear what they had to say but will chase them up on Monday. The usual ward round happened and they were fairly happy with Fred. Joanna gave him a gold star yesterday as he been a good boy.
We kept an eye on his bum which is still very painful looking. There are about six different areas of broken skin, that are more visible now. The general redness is reducing though, which hopefully lead to him being more comfortable.
They have reduced his morphine again a little bit, but he can have extra if necessary. This has normally been when we move him about significantly, or change his nappy.
He gets a bath again, which goes quite well. He also has a visit downstairs for a chest x ray as his NG tube in the nose was pulled out a bit by him yesterday. The pictures show it in the right position, so it gets taped down again much to Freds anger. He soon nods off once we have changed his nappy and applied the cool gel dressing.
He is due a transfusion of blood this evening as well as some more potassium. His chemistry is slowly balancing out but there is always something to worry about. He is going for his MRI scan to the brain on Monday and we will be able to see in more detail if there are any problems in that area. Hopefully not, but they have a habit of appearing just when you do not want any more difficulties for him. Haven't a clue what that would entail. The kidney scare is enough for us at the moment.
We get some instruction on how to maintain his Hickman Line (the line into his chest). These are prone to infection or movement, and we are given a pack to deal with minor and major accidents to it. Nothing much in it really other than some clamps and tubes and dressings.
We also have a chat about when Fred can have treatment nearer to home. No date is known yet but they run through it all the same. It will be some considerable time though because of his age. The sooner we know something the better so that we can try and plan a few things. We will have been here for one month tomorrow. It has certainly flown by and I feel we have been here for months. It makes coming home for a few hours nice, though I have always wanted to head back here to make sure Freds OK and not on his own. There would always be one of us here in any case.
He has his feed by tube later in the afternoon and is not interested in the bottle.
The staff are limbering up for the weekend here again. It seems that Fridays must be the Juice Run as I hear orders being placed by phone for various cocktails, and they arrive 30 minutes later by courier. I have seen this behaviour before.
I tinkered with the background settings today of this Blog and thought it looked cheerful.
Probably will cahnge it again in a few days.
In general seems to be fairly settled but unhappy. Hopefully he will have a quiet weekend without incident.
Day 27
Fri, 08/04/2006 - 01:44 — endc011
Fred was asleep when we went in, though stirred shortly afterwards.
He had another big poo that looks more normal now and he was more relaxed after that. They came in and reduced the amount of morphine he was having, and he was asleep the majority of the time.
The Renal Team visited him again and explained to us the damage that had been caused to his kidneys, though they suspected the reason for the excess acid in his blood was something quite simple to deal with. Hopefully it will be that, and any damage to the kidneys are recoverable.
There was some suggestion that this may have happened in the chaotic first few days when he was in ICU. We will have to see whats going to happen there, but again they did suggest it was too bad.
We had our blood taken today for tissue matching, though I do not know how long that all takes to get a result. It has been explained that we are not likely to be able to give bone marrow to Fred because we will only be half-matches.
He was a bit gripey this afternoon and has been sick a few times. His blood pressure has gone up a little bit, though he seems to have calmed down a bit now. He sounded a bit husky today. Don't know whether the reduced morphiine means he has more pain or not.
His bum is looking better to me, though it is still sore looking. Hopefully he will have a quiet few days to clear his backside.
Day 26
Thu, 08/03/2006 - 00:59 — endc011
Woke this morning at the normal time - 0630h. Forgotten my shaver and deodorant so had to pop over to Sainsburys for a quick shop.
Amanda kindly offered to drive me back to Bristol this morning so I had time to visit mum and dad briefly. After a white knuckle ride (she kindly switched my airbag on) from Paignton we got here just before lunch. It took 45m to get from Paignton to Newton Abbot and 1 hour to get from Newton Abbot to Bristol........
Fred was asleep when we got here and had a relatively peaceful morning. He had been a bit noisy earlier but his bum is still hurting. They think the broken areas of skin are slightly worse and this seems to be confirmed by Fred.
He is went down to x ray to have his kidneys scanned for damage as he has excess acid in his blood at the moment. This is raising his blood pressure which makes him breathe harder. The results come back that there are not any clots but it appears there is some damage. This should repair itself and likely occurred when he was in his initial treatment in ICU. Some of the chemotherapy drugs have side effects which cause damage to kidneys. As I think kidneys are regenerative (?) I hope this is a small problem. The doc does not seem to concerned and they were looking for other things which were not there.
We give him a bath which cause him some temporary upset and tend to his sorely bum. The nurse puts a cool gel covered gauze dressing on the areas that are broken, and it looks like a burns dressing. That keeps him a bit more cheerful.
He is also on morphine at the moment which can be altered on demand if he is particularly annoyed. On the few occasions it is used he seems to calm down quickly and allows him to kip.
He is resting at the moment and we will be heading back up the hill shortly.
Thanks for the messages guys. They are good to read, and give me something to look forward to. Good to see Tony is clambering aboard Rhythmic Beat. Hope you fixed all those mechanical and electrical faults this year. Make sure K does not use the toilet on board either, and bottoms up when you have the vin diesel.
Day 25
Wed, 08/02/2006 - 08:23 — endc011
I popped in to see Fred early this morning, just before I caught the 0808h train from Bristol to Paignton. I found him lying on his front, fast asleep with his bum exposed to the air. The nurse Hayley had rigged up an air hose to blow over his bum to help it heal. He seemed happy and did not wake up despite me talking to him. Thankfully he was connected to a monitor to check his breathing.
She said that Fred had had a really good night and was tolerating his feeds well. Whilst he had been a little sick, he seemed relaxed. With that in mind I headed off toward rain clouds.
We are now starting our fourth week here and it seems like a lot longer. We have spent a grand total of £8.00 on parking charges. I spent that amount after a few hours parked at Torbay when little Fred was born! Fred is more “himself” at the moment, but that has a habit of rapidly changing overnight, which makes things a lot more difficult. The worst bit is going in first thing in the morning to see how he has been.
At five months old he has been through more than I ever have, and had more injections than I ever hope to have. So far nearly a fifth of his life has been stuck in hospitals.
I think back on what we have all had to experience and to date, during his “remission induction” of three weeks and three days, he has:
Been subjected to numerous tests and procedures which are continuing on a daily basis
Almost started chemotherapy on a regular basis, which results in his body chemistry going totally out of sync. with everything else for the first two weeks plus. The side effects of chemotherapy sometimes do not make pleasant reading either
Been to theatre three times under general anaesthetic to have his lumbar punctures, chemo. administered into his spinal fluid and a sample of bone marrow taken
Severe oedema which gave him an additional weight of around 2kg
The rapid drop of white blood cells, resulting in tumourlysis, for a few days. This is treated with a variety of drugs and was to be expected. The haemofiltration filter helped clear some of the stuff plus the excess fluid
A couple of mild seizures, which may have been the result of a blood clot, or mini stroke. He will have some further tests in time
A serious infection when he was quite vulnerable anyway, which resolved itself after a few days
X rays to check for pneumonia and bowel problems which again seem to have cleared now
Numerous other scares about marks, blotches and bumps that seem to be insignificant
Generally being very poorly, and when he has improved, the doctors telling you how poorly he actually been
Looking back on that I wondered what progress we have actually made. Long term, we do not know. Short term and Fred has improved remarkably from when he was first admitted and seems to have stabilised himself. He looks more like our little son and his habits are creeping back. Smiles are the best treats though. He seems to have tolerated all of the procedures without any noticeable adverse reactions. We have also accepted all of these procedures as “normal” and whilst it is worrying, we accept it is all for the best.
And Fred still manages to squeeze out a little grin every now and then when he feels it is warranted, but it does get tiring just watching him be unhappy. It is good that we can give him a cuddle and he does like that most of the time. Also he has been having the occasional bath, which he enjoys greatly. He always has, with the exception of his first few when I suspect the water was actually too cold. He has been riding his imaginary bicycle in the bath too which was nice to see.
Whilst the hospital strollers are a bit battered, he is not too proud to happily sit in one and drops off immediately once he is on the move.
The nurses and doctors we have experienced are so dedicated in what they do, and this can take a lot of worry away as it is reassuring. Fred (or The Fredster as Sister calls him) also does not seem to have any complaints about the nurses regularly manhandling him. He is wary when the rubber gloves can be heard being put on though.
I rang Rachel this afternoon to see what he has been doing today and heard him in the background protesting loudly about something. They have stopped giving him his “maintenance fluid” which I assume are a sign he is stabilising chemically. I would hope then that he can have a bit of peace internally, other than the chemotherapy which comes in various phases.
I am off out this evening to meet up with friends, which will make a change.
The next bit of text will be after a couple of pints so may be factually incorrect, offensive or poorly typed.
I spoke to Rachel again and he seems to have another good day.
I had a few pints at the pub, plus some grub, with Hayley R and Wayne. Tomorrow I get a lift back to Bristol with Amanda, which is gratefully received. Hopefully his bum will have improved a bit so that he can settle more.
Day 24
Tue, 08/01/2006 - 02:10 — endc011
Rachel stayed overnight, in Freds room. There is only one fold down bed so I headed off home. Fred was sick before I headed back so it meant that Raceh was even more worried about him choking in the night. he was failry fractious by all accounts and R had about an hours kip she reckoned.
I spoke to her as she was heading along the embankment to join the M5 on her way home to her mum and dads.
I got here a short while afterwards and Fred had been disruptive. He did not want a bottle and basically cried all day, stopping for power naps in his buggy. His bum is getting better in that the redness is reducing, but he has a few areas of broken skin that when they come into contact with poo or wee, must sting like crazy. He howls at the top of his voice, and when he is doing this constatntly whilst you hold him, its very distressing. Then suddenly he will quieten down and have a long nap. Then, as his nappy refills, he shouts again. We are changing him as best we can, and he gets regular creams but there is not much else to do.
He takes about 70mls happily which is good. No sickness yet and the longer its inside the better.
At times he is normal Fred. Eyes wobbling about, occasional swallowing, then pinching his face up. nearly had a smile I think.
As I say, most of the day he is unsettled, but I take him to the play room and chat to one of the other mums. her son has been here for four years plus, but they live a few miles away. Fred is still the youngest in here, but he is favourite with the nurses. When he is on form he can really charm them. Shame about his backside though.
He has his deluge of drugs through the day. He is alot less puffier than before although he has a slight temperature that bobs up and down. I hope it is not another infection. That's all we need.
I stay until about 1900h and Fred goes back to his bed and I give his tummy a massage. Its reducing in size and his hands are alot better now. His feet are a bit like satsumas, but they are improving.
It tipping down with rain at the moment and I do not have a coat yet. I have carrier bags and I have access to unlimited numbers of plastic aprons, but no coat. Will have to get one tomorrow if I come home.
Spoke to Paul in the office today. he had been speaking with the Anthony Nolan Trust about doing a "corporate" blood letting exercise at the Council. Rachel and I thought it was a brilliant idea, and if it does not directly assist Fred, then someone else will definately benefit. "It Could Be You" as they say......
Anyway, I hope that things work out for Freds bone marrow. We do not know much at moment about the topic, but I guess thats around the corner soonish.
Well, the rain is still out there and I will trudge up the hill, past the friendly chip shop man. Must remember to get the key from the room otherwise I will have to climb in the window.
Day 23
Mon, 07/31/2006 - 03:16 — endc011
Freds day today has been similar to yesterdays in that he has been very settled and quite quiet. He has slept alot too, so hopefully has gained from his rest.
When we came in first thing today, he been sick earlier. This sometimes happens when he has been feeding, and with all of the drugs he is on at the moment it is no wonder he feels so grotty. His legs are still pretty puffy though when we weigh him he has lost around 0.5kg (or 0.5 litre) of fluid since the last time. he should be heading back to his pre-hospital weight of about 7.3kg. He weighed 15lb 2oz when he was 15 weeks and 2 days old. He seems to hold the water and gain weight rapidly, but loses it a little more slowly.
The room is alot cooler now so he seems less clammy. We change his nappy regularly because of his weeing. No poo yet but this will hopefully come in time.
We pop out to the coffee shop in the BRI, and get the paper. Nothing much happening in the world except the usual troubles.
On the way back I talk to a friend who I have not spoken with for quite a while, and that is Kenzie. She was not aware of Freds illness and we have a long chat about things. It is nice to catch up some old news, and I give her Freds Blog address. Seems to be a useful medium, although I am not sure what other uses it has.
We head home slightly earlier than normal and have something to eat. Rachel is going to stay with Fred tonight in the bed in the room. If he wakes in the night (which is normal) he will wake her too. At least he can get a longer cuddle than he may get off the nurses..... He gets his food three hourly at the moment through this tube, so there will be some activity around R's bed. Tomorrow she is heading home for an overnight stay, returning on Wednesday. She will be staying up at her ma and pa's place. I will head down on Tuesday for a bit. There are so many things I need to do that I have been putting off for. Need to cancel some direct debits, pay some bills, do some correspondence. I do not know whether I will have time for all of the things I have planned to do, but have made a list so that I can strike them off. Need a haircut too. Mum and dad have all our post at the moment, so I can collect that.
I also need a haircut.
I have been trying to add some pictures to this Blog thing but it does not let me. I will try it as home if I have time. Must cancel the broadband as well I suppose.
On our return Freds nappy is changed again. He settles and I head off up the hill back to CLIC House. The evenings are drawing in now, with the summer nearly being over.
Day 22
Sun, 07/30/2006 - 01:11 — endc011
Weather has turned today and rain is forecast. I had a text from Dawn who said that it was raining in Hayle at the time.
Fred has a good night, and was fairly calm when we arrived. He was just livening up and Charly was just about to give him some feed. She said he had been good, which is a postive sign for the day.
As it is the weekend, the two doctors discuss Fred and whats going to happen with him over the weekend. He is getting heavy with fluid again and is about 1 kg more than yesterday. This causes problems with swelling of the legs and hands, which is mainly uncomfortable. He is given more Frusemide - a diuretic - (or froozy juice) to make him wee more. He is going to get some more calcium and protein, as well some more blood as well which should perk him up a bit.
Fred does not do a great deal today, and has mainly been relaxed and sleeping alot. He is catching up on his lost kip.
One of Rachels friends, Kay, visits which is really nice. We sit with Fred and chat about all sorts of things. Fred is well behaved at the moment and does not fly off into a tantrum. He has also had 60ml of liquid by bottle and seems to be retaining that happily.
He has yet another large runny poo which is a good sign that stuff is moving through. He has not really had much in the last week or two, so things will slow down. Better out than in, I say. We clean up his bum which is not as sore now. Cannot see any broken skin but he seems more comfortable "down below." That was the prime suspect for his illness earlier on in the week.
We see Kay off late afternoon, which coincides with Freds next feed. We discuss how much to give him, and we will try 50mls tonight. Given gently he should be able to cope with it. Otherwise its will be "NG" - naso-gastric tube which is probably a lot less satisfying for him, as well as us.
Fred is really heavy to hold at the moment and it is difficult to bounce him into a comfortable position. Not just because of the tubes and lines, but he is a bit weaker now and we do not want to wobble his little head unecessarily. He has been giving people his big blue eyes treatment today. Hopefully the puffiness won't spread beack to his face, as it causes his little peepers to close up.
We are off to Asda in a while to get some provisions. It had just started to rain when we popped out. I realise that I do not have a coat or anything here at the moment.
We need also to renew our car park permit. Normally without a permit it is £15.00 plus a day, we get a permit from the hospital for £2.00 a week which is good for us.
Anyway, we hope Fred will have a quiet weekend. We may even be able to scoot home next week, as there as so many little jobs that need to be done that have been put to one side.
Day 21
Sat, 07/29/2006 - 00:56 — endc011
Yesterday evening, I left before Rachel. When she got back she explained that Fred had done a particularly large poo, which was a sign that things were starting to move again. Most pleasing.
Today (Friday) we come in and find Fred has been grumpy for a while and unsettled. He is 'nil by mouth' again and has been since 0730h, so is also very hungry. He is due to go to theatre again today for another set of procedures. Two of them have been done before, and a third is being done for the first time.
Under general anaesthetic, he has a lumbar puncture to test the spinal and cerebral fluid for leukaemia cells. His last one was more or less clear, but they then inject a chemotherapy drug back in to do its job, just in case. The third procedure is a bone marrow aspirate, which involves a needle drawing off some marrow from the hip bone, for testing.
We are due to tested soon to see if we match. It is unlikely as we will probably be half-matches, but they test anyway regardless.
I end up in A and E myself (in the Bristol Royal Infirmary) next door this morning too. Not quite on the same scale as young Fred, but its still painful to me. I have a blister on my foot which has burst and gone a bit funny. Its embarassing going into the NHS Walk In Centre for something so trivial. Anyway, they agree it could become infected and treat it all within 15 minutes of arriving.
Freds ready to go to theatre when I come back. He is still unsettled, but promptly falls asleep as we wheel him down. Rachel takes him through with the nurse, and he is fast asleep as they put him to sleep. We get a call an hour later saying he is ready for collection.....
He is fine but even hungrier now! Well gripey. He will get a feed soon.
The doctors are generally pleased with him at the moment, except for a few mild problems. Joanna gave him a gold star yesterday as he was doing so well. Hopefully this will continue gradually.
He has a feed, though only 30mls via a tube but its better than nothing. If he tolerates that he will get more this evening.
My foot still hurts. I am complaining about being a bit sore, and Fred has not complained once about all he is having.
I have had some lovely email and messages today, which makes home seem alot closer. I am sent a message from my colleague Emma, and I see that Elizabeth Raikes (Chief Exec Torbay Council) has mentioned Freds plight in her weekly letter. It refers to other colleagues wishing to get involved in things like going on the blood and bone marrow register, as well as other practical things to help. Its really nice and cheers up Rachel as well as me no end.
Rachel and I registered as blood/marrow donors a couple of days ago. I was always nervous of it before and it did not seem relevant. I can reassure you that whatever you do, or don't do, you do not know when you will need it. Bad luck can tiptoe up on anyone, no matter who they are.
Anyway, it is Friday at the hospital, and like the Council, everything almost shuts down. There will be a few doctors around and hopefully Fred will have a good weekend.
Day 20
Fri, 07/28/2006 - 00:55 — endc011
We come in tentatively, not knowing how the night went. He had had a good night and his temp. was down to 37.7, although wavering. His heart beat was at 110bpm so this had settled too. He generally seemed to be OK, and the doctors were pleased that he seemed to have sorted himself out.
They agree that this is an opportunity to do his chemo. and other treatments that have been put off, so move rapidly with getting it sorted.
We give him a proper bath and wash his bum. He likes that and is wrapped up in a fluffy towel. He soon is off to sleep, quite relaxed. His hair is all fluffy and waves about in the breeze of the fan. He seems to be more settled now which must be good for him.
There had been a really bad smell in the Parents Kitchen, which I noticed when we first came in. It seemed to coming from the locker above ours. It got to a point where I did not really want to go into the room as it was so bad. I spoke with the administrator and she arranged for Estates to break open the locker to see what was in there. he turned up sometime later and forced the lock. There was a mouldy loaf of bread in there that was causing the smell. There was some grumbling that it was not his job to do such things, and that they should have contacted another department.
Fred continued withg his next bit of chemo. as planned although a few days behind schedule. He is still a bit puffy but he has been worse.
Rach tries to give him some milk from a bottle and he happily slurps 30ml of the stuff. Thats a first too. He has not been interested in a bottle, hence the Speech Therapist wanting to come in a re-educate him on such matter. Cannot give too much as he will sick it back up. He has not had much food for several days and his stomach might not like it. He seems content with the stuff anyway and drops off back to sleep.
I wander off to take the car up to the shops to get some food. Our accomodation is really good. We have a bedroom with wardrobe, tables and bedside cabinet. Lamp and clock radio and a window which overlooks the garden as well. Just down the hall is a nice sized shower room with power shower and wc and basin, plus hanging space. The front room is a nice size as well, with a dining table and two small settees. There is a patio door to the garden and pations with tables and chairs outside. The garden also has a barbecue area which looks well used. The TV, DVD and video are all new looking and this accomodation is just for us and another girl. She comes from the south west as well but does not stay all the time like us. She is due back this evening I think she said. This means the fridge space will become slightly less, so we tend to buy fresh food daily or every other day. There are bigger communal freezers in another part of the house which I need to investigate. Trouble is they are all full. Someone has seen fit to fill up some of the shelves with bags of ice cubes. I will grumble that some people are shopping and storing weeks or months worth of food in the freezers, which is not really the idea.
I also saw fit to complain to "my" local councillor about the bushes, branches and brambles that are over hanging the footpath on the route in. I get a response back that she has referred it to an officer. I will await contact.
Day 19
Wed, 07/26/2006 - 19:18 — endc011
We get down to the hospital a bit later than normal. We are greeted by Peter, who normally works in the bone marrow treatment ward (BMT.) Fred has not been too good last night and has been sick again. His temp. is remaining high and he is not right again. Whilst his breathing is efficient, it is a bit laboured. His stomach is quite distended now and this could be for a number of reasons. They decide to take him down for a chest and abdomen x-ray. There is a possiblity that the cause of his fever is pnuemonia, and they want to see if there are problems in his bowel and gut as things have slowed down to zero in that area. Fred looks quite uncomfortable. We get down there OK, but on the way back up the lifts have all packed up. We debate carting him up by pushchair but this is not ideal. He is happy where he is at the moment. Apparently the heat is causing the lifts to shut down if the motor room gets too hot. They cool down and come back on again.
His bum is also a problem, plus it is hot in the room despite his fan on him. All 'round, Fred is causing the doctors concern. Given his poorly condition, they are getting behind with his chemo. plans and he really needs to lose the fever in the next 24 hours. His temp. goes up and his heart rate is around 195.
The x-rays come back. Thankfully his chest is clear and it appears there is a swelling in his gut. Soemthing is stuck and it will be referred to a radiographer for a second opinioin. His view is that it might even be a hernia causing the problems.
We have had so many obstacles it seems each time there is a problem it is a major one. Fred is already really ill with his leukaemia, and it seems so unfair he is getting a further battering through all of this. Thankfully the hernia theory does not appear to be correct but I suppose there is still a possibility.
His fever continues and he really is poorly again today. He stays the same but they hope that tomorrow he will be better. If not they will re-think some of his plans, or at least have to continue with some of the treatment regardless of his current illness.
Before we go home Joanna says his kidneys have really picked up, (and not packed up) and his other results seems promising. She gives him a silver star for today......
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