Day 108 (Mon 23 Oct)
Tue, 10/24/2006 - 01:50 — endc011
Fred was permitted to leave the hospital yesterday evening, so we whizzed up the hill and installed him in his little bouncer chair. It had been raining hard on the way up, though he was kept nice and dry by the rain cover. By the time we got in he was fast asleep as usual though there had been a bit of a leak into his foot well.

He has a feed and stays awake, watching us, watching him. It is lovely to have him back with us again away from the hospital. My stomach is rumbling a bit but we had a big lunch. Time for some soup we think and we clear out the fridge and rustle up a chunky soup that Fred really wants to try. I think the splash of tabasco and extra garlic cloves will affect his bum if he has a sample.

He has a feed but is a bit sick later on. He has been like this since his chemotherapy started again a couple of weeks ago. One of the side effects is sickness, but it should have passed by now.

The other is mucusitis which he is dealing with by himself to some extent. It looks worse than he is letting on.

He is very very tired for some reason and gets a bit fractious. Once he is placed in his familiar cot he is instantly fast asleep. Rachel goes to bed early to read and I catch up with a few things. Again it is raining really hard outside.

He stays asleep all night and we feed him early in the morning. Rachel heads off and I have another hour in bed as he has to be in x-ray before 0930h.

I get in and we manage to get his blood taken for a cross match as he will have a transfusion again in the next day or two I think. They also take some bloods for checking his various levels.
He will start on his next bit of chemotherapy tomorrow, although this depends on his platelet levels. On Saturday they were 60, Sunday 49 and today they came back at 42. He cannot have his next course until they are increasing over 100. this can go up really quickly though, or slowly. His other counts are on the up though which is good.

His weight today is 7.5kg so he has shifted a fair amount of fluid of himself over the last week. I still do not know what his proper weight would be, other than the normal average weights for his age.

I also measured his body length today which was 27" or 68.5cms. He might be a bit more than that as you need to stretch him a bit to get the true length.

I take him down to x-ray with Hannah the student nurse and he is seen immediately. They spend well over 30 minutes looking at his heart with a scanner. It is difficult to see what is what with the heart as there is little to recognise. Fred falls asleep quickly despite chilled gel on his chest and the probe twisting and digging into his chest for that period of time. At the end of it the cardiographer states that Fred has a "beautiful view of his four chambers" and gets a student to have a go at looking for it. She asks if it OK to do that beforehand and as Fred is still fast asleep it seems a good idea. She crunches around being tested by her colleague on what valve is where. Fred remains asleep even when another nurse in the room drops some metal things on the floor.

On the adjacent couch is a tint tiny baby who sounds just like a lamb crying. A wobbly high pitched cry as her heart is scanned. The baby looks very new to me.

Eventually the finish on Fred and he awakens as we wipe him down of the sticky gunge. He is oblivious to whats happening and is quite happy as we take him back up to Level 5. I later hear that there are not any problems with the scan. He had one many weeks ago when he was in intensive care and that was OK. I was a bit nervous this time as immediately after the last scan in July he had a number of fits. No sign of anything this time nor should there have been.
My mum and dad visit and Fred is pleased to see them. Fred has a few more checks done on him before he can go out. Eventually we are given the green light and we head in to town. Dad is at the wheel again and Fred quickly falls asleep. We have some lunch and then do some shopping for a couple of things.

Once that is done they clamber in to the cab heading back to Temple Meads. I wander a round for a bit and get something for me to eat this evening.

Fred and I have the option of staying away from the hospital tonight. However, I must be institutionalised by now and decide I will stay in with Fred. It is raining, I have to get up early tomorrow and it is just alot easier here to change him and keep him going through the night. With two it is a lot easier at the flat. Plus there is also another couple in our bit at the moment and it is probably easier that Fred stays in. I hope he does not find out he has the option of going out.

I am doing the 'blog at just gone 1900h. Fred is in his pram wedging the door open to the computer room. He has a dummy in his mouth, and is a bit dribbly today. He is watching me looking at him, chomping on the dummy. He looks very relaxed at the moment. I can detect a small grin from behind the soother. If I had left him in his cot he would have known he had been abandoned and shouted until a nurse came to pacify him or find me instead. He is quite cunning.

It is a triple episode of Coronation Street tonight and Fred is anxious to get the prime position for the television in his room.

Day 107 (Sun 22 Oct)
Mon, 10/23/2006 - 00:42 — endc011
Fred is a good boy through the evening and is all ready in bed at about 2200h last night.
I manage to get to bed a bit earlier than normal whilst staying in the hospital. Once he is settled he does decide to stay up late and not sleep. I turn the television off and the lights down and then he is fast asleep. Tonight he wears a hat to keep his head warm.

Rachel comes in with some bacon sandwiches that she made at the flat this morning which are nice. It saves us from buying some and means I can listen to the Archers.

We get the go -ahead to go out for the day and if his temperature stays stable, and his sickness is OK, we can stay out overnight. This will be the first time in three weeks or more weeks that we can do this. His blood counts are dropping now, what with the recent high dose chemotherapy, and he may not be able to come out for a while.

We need to get lots of stuff and head into town. Our friends Paul, Dawn, Charlotte and Emily are passing by and we plan to meet up with them.

The weather is not too good and the traffic is very heavy coming into Bristol. However we meet up with them and head to the Wetherspoons as it is the nearest and Fred likes it. Have a nice lunch with good company, and Fred stays awake for most of it. Again he likes looking at the glazed roof which fascinates him. It is decorated with hallowe'en bits and pieces.

They head off later and we go back to the hospital to collect his bottles, and get some more meds. Once we are on the move he is fast asleep again.

We wait around so that he can have some things done to him and hopefully we can then start back up the hill. Not sure what the weather is doing at the moment though. Fingers crossed.
He has to be in tomorrow at 0930h as he is having some tests to his heart down in x-ray. That means an early start for us all I think.

Day 106 (Sat 21 Oct)
Sun, 10/22/2006 - 01:23 — endc011
When I came in this morning I found that Fred had been sick twice through the night, which was of concern to the doctors.

He has his mouth examined and he still has a number of ulcers in there, which are of some size. It is due to the chemotherapy and they were waiting for it to happen, though I think it has appeared a bit later than expected. In a way, it is a good thing as things they expect to see are happening. However not good for Fred's general well being.

It is likely these ulcers will travel down the throat into the stomach area, and down to his bum if he is unfortunate, hence our vigilance on the nappy rash front. We were going to buy some new ones today though could only find Huggies or Pampers. We have been using some "Billy Bargain" ones from the local discount store which are not as efficient in one way, but are cheaper and seem to have less chemicals in them. Fred always used to start getting a rash if he used the expensive ones.

We gets some anti-sickness meds as well as para c. and codeine. This makes him chirpy so we head off on a longer than expected walk to Clifton Village. i have driven through it many times and it always looks good. We have a wander around and also visit the Museum again. There is an exhibition on of sculptures which are OK, but up to much really. I leave my mobile phone on a bench but it is handed in a while later for which I am very grateful.

We come back and Fred settles down for the evening. It is much cooler now so the gro-bag is out plus a small wooley hat. Fred can drop down to less than 35c sometimes which is not too good, and someone suggested a little hat over night which I will try.

I has rained today in between the sun but id much cooler now. I think we have seen the last of the how weather, obvious really as we are nearly in November! I seem to be stuck in that summer mode still.

I spoke to Kenzie over in America yesterday and she reads the 'blog there which is good. Also Susan reads it in Vancouver so Fred's followers are near and far. I will have to work out who is the farthest away. The comments he gets are good for him, though he is very poor at geography at the moment. I did show him a small atlas of the world but he was more interested in the paper it was printed on rather than the content.

I am not sure what to eat tonight. With a bit of forward planning we normally eat stuff we make, but in the hospital it can be a bit difficult. Some people who are stuck here 24 hours a day, seven days a week have to live off takeaways and the like which is OK for a bit, but probably gets expensive.

There is a kitchen with a microwave but it is the one that smells funny. I might have some of my spicy noodles that make me cry I think.

Day 105 (Fri 20 Oct)
Sat, 10/21/2006 - 02:11 — endc011
We both had a quiet night, though I slept lightly. Fred has got the knack of sleeping right through his regular obs, and only stirs a little if really pushed. He can endure several blood pressure checks on his arm, things being poked in his ear to check his temperature and things clipped to his fingers or toes to check on his breathing and sats. I usually wake up each time no matter how quiet the nurse tries to be.

Fred is not really interested in his bottle at the moment and I later find out why. However, he is alert and in a good mood as always.

I manage to listen to Radio 4 then the World Service and try and get some sleep. Because he has not fed, it is difficult to test the NG tube, so it is much later than I planned. Then it is running into Fred's next feed time but he is fast asleep. I decide not to worry too much about all of this. Fred will let me know when he is hungry, so I go back to the bunk.

I get up a bit later than usual and Fred feeds a bit. I have a look into his mouth and see a number of small ulcers, the most prominent on his top lip and about the size of a fat grain of rice. No wonder he is choosy about when he wants to feed. I expect it also depends on whether the paracetamol or codeine is working.

Fred's day is much the same as it has been the last two weeks really, though we try and get him sitting up in a foam Bumbo chair. His head is still wobbly but he does not seem upset by this position. As he has been lying on his back for most of the last three or four months we guessed he would be a little behind in this sort of development. It is to be expected though the physiotherapist is very pleased with him so far.

During the afternoon the results come back to say that the methotrexate (chemo) levels have dropped and he is taken off the line. Now he is off the tubes for a bit we shall try and get him to exercise those neck muscles a little more.

He dozes a couple of times and is very playful late afternoon. I noticed last night that his eyes popped out of his head when I played with a torch in the gloom. He is interested in the dim glow of his musical light, but this transfixes him almost. His pudgy hands keep reaching out for the torch and I let him have it for a while. I make sure he does not burn his eyes out with him waving it around his face or drop it on his head. When I take it from him he still follows the light in the dark.

We let him stay with the nurses when we head back to the flat for something to eat in the evening. He is quite happy watching the ward from his perch.

When we get back he has been good and is back in his bed fast asleep. He has positioned himself at a peculiar 45 degrees and looks like he will bang his head against the raised sides. Once we move he wakes up, making lots of protesting sounds as he was obviously enjoying his little kip.
Whilst I am typing this I heard a tap on the window and look around to see Rachel and Fred peering in at me. She is holding him in her arms. Both are smiling and they come in and sit down behind me on the settee. Fred is watching what I am doing whilst he sucks on his red dummy. The room is very quiet but he is contributing to the atmosphere by making lots of loud noises in his nappy....

Hopefully he will have a good night. I realise that today is Friday and that all the staff numbers have reduced. No juice run today, though we did that yesterday.
Have a nice weekend.

Day 104 (Thu 19 Oct)
Fri, 10/20/2006 - 06:07 — endc011
Fred is in fine singing form overnight, and stays awake as long as he can. In the hours of the early morning he is warbling away like a songbird.

He has another good morning and has some chocolate pudding for his lunch. He ends up in a real mess but he enjoys himself but is not too sure about the chocolate. I thought he would either love it or hate it, but he is not telling.

Hayley and Graeme from the office visit and Fred entertains them. He is still smiling and chuckling, but still has some sores in his mouth. I have yet to see them clearly as he keeps his mouth closed when you want it open, and vice versa. I must be a bit better than a few days ago as he is not salivating anywhere near as much and he does not have a dry cough or pull a face when he swallows.

As he is hooked up to the machine there is little else we can do. He gets his "rescue" fluid which is like an antidote to the chemotherapy drug he had over the 24 hour period on Monday/Tuesday. It kick starts the good cells, but not the bad ones somehow.

It is starting to rain and we troop up the hill in the dark. When we first arrived here in early July we could walk back at 2230h and there still was a bit of light in the sky. Now I have brought down my winter coat and hat, plus some stouter boots. And a torch.

We get back to the flat and I get some bits together before I head back down to the hospital again. Once again it is raining hard on the way back.

Fred and I watch TV for a bit then I get him ready for bed. He has had his feed and is quite happy. Unfortunately once inside his gro-bag he is sick and he has to be unwrapped and washed down. The bedding gets changed and by the time all this is finished Fred is fast asleep.

I have also noticed that one of his eyes are a bit red, and there is a bit of gunk in it. I mention it to one of the nurses who takes a sample, and I wash his eyes with sterilised water. His latest habit is to grab at his eyes and rub them, so he might have poked himself in the eye, or might have an eye infection.

There is a new tiddler on the block again. I believe he came in today but that's all I know. Fred has been the smallest for a few months now.

I am getting ready for bed in a minute and will probably need to feed Fred sooner rather than later as his stomach will be empty earlier than normal. However I will let him tell me when he wants a feed rather than me wake him. He has been quite awake most of today though.

Day 103 (Wed 18 Oct)
Thu, 10/19/2006 - 06:41 — endc011
Another sleepy night for Fred whilst he was hooked up to the pumps.

I rang Rachel at 0830h thinking she would be up, but got a non-plussed response as she was catching up on some sleep whilst Fred was asleep at that time too. Apparently he had been "singing" again for the past few hours and both had just just nodded off again. Whoops...
He has had a good day today and I rang later to find him in a most co-operative mood and he made noises over the 'phone o me. He is still on his Rescue/Flush and will be for a day or two I think.

He is a bit more positive fluid-wise at the moment and last weighed in at 7.75kg, which is a lot more extra fluid on him than yesterday. The diuretics will hopefully keep this under control, but it does mean lots of nappy changes, and careful attention to his little bum once more. Rachel says that it is looking the same as before.

He is still taking milk by the bottle, though we change the teats again to a softer one as his gums may be sore now. He does take the bottle with the different ones.

His day is good with him happy and chuckling as he normally does. His mum and gran keep him entertained during the day and he stays chirpy.

I am back at home at the moment and have fixed the back door now once and for all. My dad came over and helped me get the last bits right so that was good. Lots of using a hammer and drilling to make it all fit.

I meet up with Wayne that evening, and Rachel contacts me to say that Fred is fast asleep and content. Hopefully no more early morning singing from Fred. It is lovely to hear though.
I have uploaded a few more photographs today which might be of interest. I had a few problems with some of them, but that is hopefully sorted now.

It is raining outside now so must head off to bed. I will be back to Bristol tomorrow late AM, where a couple of friends are visiting so I hope to catch them.

Day 102 (Tue 17 Oct)
Wed, 10/18/2006 - 07:39 — endc011
Last night Fred was really good and slept well. I had to wake him to do his 2200h meds, but could not get anything back from his stomach when I tested his tube. I waited until 0100h, but was not successful. He needs his meds and feed. One of the nurses comes in to give him some other drugs in the early hours and manages to get a little from his stomach to test. It shows as "acid" on the testing strip, so he can have stuff down his NG tube.

He gets his meds from her, plus mine, and a feed. He glugs his milk and is fast asleep again soon.
At 0600h he gets another load of stuff, and I give him his feed. His throat must be sore as he sounds very dry when he coughs. He also gets some anti-sickness meds, so by 0700h he cannot have anything else.

He decides that by being playful at that time of the morning is fun, so I join in bleary-eyed.
The anaethetist comes in and checks through his notes and we discuss his history and the plans for him in theatre. He is weighing 7.6kg now, when he weighed 7.38kg last night. Taking into account his fluid input over the last few hours, and his fluid output, he is over 500g/500ml positive. He will get a diuretic later to get rid of this excess before it causes him problems.
I manage to change his nappy whilst keeping him fast asleep and he does not wake at all. He does a strange thing of keeping his legs in the vertical position after I have changed him. Useful for nappy changing but a bit different to his normal habits. He must be very tired for that after all the fuss.

Rachel arrives with June at just gone 1000h and we swap over the car. I head back to home for two days.

He heads off to theatre whilst I am heading back on the M5 and does well. He is the last AM slot, and will have his intrathecal chemotherapy, plus a lumbar puncture to check that there are not any leukaemic cells in the cerebro-spinal fluid. To date all the tests have been clear which is good. He comes back happy, but is sick later. Once he has done that he goes to sleep.

Later they check his mouth ulcers which have not improved, but by now he is weeing a bucket load, which is good. This is because of the "froozy juice" (frusemide) diuretic from earlier.
Later on in the evening I hear that Fred is quite happy and has been fed. He is fast asleep and hopefully will be calm for the next few hours. I met with my friend Mark in Wetherspoons Paignton as it is the steak night.

I managed to mend our back door on the house, which has been a "pending" job for a few years. I have managed to cobble together various bits of locks and mechanisms to make it work, saving me £300+ for a new door.

Hopefully Fred will stay asleep and happy for the duration. He will be on further fluids intravenously for the next few days. He seems to be doing well at the moment and will be seven months in two days time (19.10.06). In a few days time he will have been hospitalised more than he has been out in his short life. He went in during the summer months, and now it is more or less nearing winter.

Day 101 (Mon 16 Oct)
Tue, 10/17/2006 - 04:05 — endc011
Fred was well behaved last night apparently and fed when required. Rachel left this morning earlier than normal as it is free parking at the hospital until 0700h.

When I get in Fred is a bit noisy and unsettled but soon calms. He gets a nappy change and some feed and is happy. The hydration started at 0500h and the chemotherapy should start around midday. They carry out some checks on his urine and this seems to be fine. This means they can start it a little earlier than planned.

The reason for this is the chemo takes 24 hours to go through, and he is due in theatre on the last AM slot, so it will be tight again. he is not having any bone marrow tested tomorrow, so it is just the LP and IT. Still painful I suppose.

My mum and dad visit again today. It is raining very heavily whilst they walk to the hospital, and I meet them in reception wringing out their coats.

Fred welcomes them with a warm grin and is very lively and alert for them. He is chuckling and enjoys the attention he is getting from them. He is a bit more lively than normal I think which I hope is a good sign.

We have some lunch in the canteen and Fred is awake when we get back. he tends to detect absence a bit more now, but is soon calmed again. It is a good job he is not going out anyway in this weather.

Fred remains awake during ma and pa's visit but looks sleepy toward the end. I see them to the taxi rank whilst Fred starts to doze.

I pop in to see him and head back to the flat to get some stuff.

When I get back in Fred has been a bit troubled and they can see why. He a number of sores starting to form in his mouth, and he is dribbling a lot more. It is clear that it is difficult for him to swallow sometimes, so he gets some paracetamol and some codeine. This makes him alot happier and he drinks his milk well. We check his bum as this is related in a way to the chemo effects, and can see it is looking redder in places, so extra cream again. This is the effects of last weeks high dose chemo, plus it is being topped up today with the second dose of the same.
I get another kebab, this time a shish kebab rather than a doner and we both watch Coronation Street. Fred soon drifts off to sleep watching his light that revolves.

I am doing the 'blog after giving his oral chemo, so hopefully he will not wake until later. If I give him a feed at midnight, he should go through to 0600h I think. he can have a feed then, but he will be nil by mouth from 0800h onwards. I will change over with Rachel and June tomorrow, normal time if all goes well here.

Day 100 (Sun 15 Oct)
Mon, 10/16/2006 - 01:57 — endc011
Today is our one hundredth day in Bristol, and it feels every bit of it. However, compared to what Fred was like 100 days ago we are happy to be able to continue with his treatment, more or less on course and to the Protocol.

After my kebab had settled I watched TV for a bit in the darkness and Fred was fast asleep again. I decided he needed a feed later on in the night so he got that and kept it down. He got another at 0530h as he woke and shouted for it, but I had it all prepared so he quietened quickly.

This meant I had a few hours sleep where no one would come in, and I guessed Fred would now sleep until 0800h or so. I had a good block of sleep then.

In the early hours of the morning just as it was starting to get light I could watch Fred stirring quietly, without him knowing I am there in the dark. He just looks about and looks at his hands and picks up a stray dummy, or toy. No fuss or shouting. He has started scratching his nose occasionally and looks very grown up when he does both eyes. Once he is aware I am nearby he joggles to see where I am am, then becomes very unsettled and noisy. I decide I had better get up and feed him again.

Rachel appears after a while refreshed from a sleepy night. We are told that Fred can go out today and return in the evening. We must be so institutionalised that we decide to stay in for a bit, so that I can listen to the Arches and Rach can make some more cards for the CLIC coffee morning.

Once that is done we head out into town to see whats happening.

We are wandering around Broadmead when we go over to listen to a Brass band playing and see that there is a gathering of people. We realise that this must be something to do with Ian Bothams walk for Leukaemia Research where he is visiting 17 cities by the 17th October 2006, and I think finishing in London. We decide to see whats going to happen and eventually Ian Botham arrives with a following and passes the "finish" line outside Marks and Spencers. It is not a big crowd though a few people are generously donating to the collection tins. Fred is captivated by all the noise, so I go over to Ian Botham, and ask if I can take a photograph of him with Fred. He happily obliges and we have a quick chat, and is interested to hear that Fred has leukaemia. He appears a bit creaky and he bends down to talk to Fred - must be all that walking. He then sets off to his next destination.

We then bump into Ian Bleasedale who plays "Josh" the paramedic in BBCs Casualty. We have a longer chat with him and he chats with Fred who smiles a wee bit. He inquires about Fred's progress and treatment to date, and how we are coping staying Bristol. I managed to get another photograph of Fred with him which was good too. A reporter was hovering in the background and showed me a photograph of Fred and Ian Botham he had taken earlier. He too enquired about Fred and was interested in Fred's illnes and progress and that we had come along with Fred.

All of our stomachs were rumbling, so after chatting a little more we headed off for lunch.
Once we got back to the flat Fred rested on his Eeyore playmat and slept the whole time. Then we wheeled him back down to the ward as he will have an early start again tomorrow.

At 0500h again he will start a course of 5 hours of re-hydration, then will have 24 hours of high dose chemotherapy. Following that there will be a few hours of the "rescue" fluid to get rid of the chemotherapy, and then probably a course of the diuretic - frusemide, or froozy juice. He has not been too bad on this first part, but I gather it does accumulate, and he may start suffering from mucousitus shortly, where he will have a very sore mouth. He has had it before and he had a number of ulcers in his mouth that looked so painful.

Then on Tuesday, he will be back to theatre for his LP, IT and BMA which will probably knock the stuffing from him once more. He has bounced back though recently, so fingers crossed please? I have also repeatedly asked for his "clotting" to be checked before he is connected to his chemotherapy, as we do not want a repeat of the "needles and pins" saga we had last week.

Day 99 (Sat 14 Oct)
Sun, 10/15/2006 - 04:29 — endc011
Fred was a bit restless last night and in the early hours he was sick. He was OK after that and when I came in at about 0930h he was sick once more. He is not running a temperature and he seems well, but they give him some anti-sickness drugs to assist. They stopped his dose yesterday and this might be the tail-end of the chemotherapy making him queasy.
It does mean that any chance of staying with us overnight are dashed once more, though we are allowed out during the day.

We head over to the Book Barn which is a good place. We found it in the end and it was open. It is a huge warehouse of secondhand books which are all catalogued properly and sell for reasonable amounts of money. We browse around there and Fred is asleep the whole way through. After that we head over to Fishponds, next to Ikea, for a poke about. We then head back to the flat to have a lazy afternoon.

Fred is full of beans, but gets fractious and tired. Rachel has a belting headache so I decide to take Fred back to the hospital, so she can get an early night. Off we head.

By 2030h I am hungry so I go off in search of sushi and broth, but find it is closed. Shame as he said he would stay open late on a weekend I thought. The only alternative vending machine sandwiches or the Greek restaurants that sells kebabs. I purchase one of those and take it back to Fred's place. Its a good sized portion with lots of meat and chilli sauce plus a good load of salad. I watch Ant and Dec whilst Fred watches me, though the room stinks a bit. I could have eaten it in the Parents Room I suppose, but it smells again in there of rotting food in one of the lockers.

By the time I have finished my kebab Fred is fast asleep so I cover him up. I have to wait until is in deep sleep to put the blankets on, as he will kick them off as soon as he feels anything on his legs. A gro-bag would have been good but I did not bring one with me. I also forgot the duvet I wanted to bring down in the rush.

Not much planned for Fred tomorrow though. Might be able to take him out, but Rachel will have to stay tomorrow night with him. It is not too bad if you get the feeds and meds synchronised right, but tonight I suspect I will be feeding him at 0300h ish. Need to go slowly as do not want to be clearing up sick at that time of night as it will mean me parading around in my Homer Simpson sleep suit and moccasin slippers.