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.

Day 98 (Fri 13 Oct)
Sat, 10/14/2006 - 00:04 — endc011
Last night Fred was rather good and did not cause trouble on the ward. He hopped from his bed to the pram and back again.

Once he was in bed proper, he fell asleep very quickly and did not wake until the early hours of the morning. I did try to wake him and give him his feed, though he was not having any of it. I tried his NG tube but I could not get any stomach acid back when i checked it so I waited until the morning.

With Fred having all of these fluids, he is putting on weight a bit and must not have an appetite.
I watch TV whilst he drifts in and out of sleep, though he does roll over to watch Ladettes to Ladies.

In the early hours I spy him quietly looking about. He has not seen me because I am on the bed on the floor below him, but I can see him through the sides of the cot. I call out his name and he is startled at first. He then looks down and sees me on the floor, effectively. He squints through the gloom and breaks out into a big grin and chuckle. This is his cue for waking up properly and so I get up too.

He has his early morning obs and meds and by 0700h I have been up for ages and have fed him again.

He is still on various fluids but by the end of the day he is off them. He is due a blood transfusion later today and that should be here by 1800h or so.
The girl next door who is about 12 has just come back from theatre and so is a bit a groggy. Freds nurse asks if Fred can pop in as it would cheer her up. He gets out of bed and into his pram. He makes his way next door and entertains her for 15 minutes or so. This could be a new thing for Fred - ward rounds to entertain.

He seems very good today, but from 1630h onwards we notice his temperature has crept up to 37.9c. We had also had noticed that where his Hickman line enters the chest it was a little redder than normal. His nurse swabbed the area and sent it off to be checked but this could be a source of infection. If it was due to the faffing around with the dressings in theatre none of us will be best pleased.

They will monitor the temperature but if he gets above 38c, then our planned weekend away at the flat with Fred will be scuppered once again. It also would jeopardise his next high dose chemotherapy planned for Monday. Anyway, we shall have to wait and see. Today is Friday the 13th, and so being superstitious, I am perturbed.

In any case, have a good weekend.

Day 97 (Thu 12 Oct)
Fri, 10/13/2006 - 03:17 — endc011
Fred has been much more settled over the last day or two, though is still having the rescue agent through his line, possibly for the next twelve hours or.
Rachel tells me that his fluid balance is now "negative" which i think is good. He is also on the diuretics to deal with the excess to.

I came back today and managed to see June on the bus before she left.
As Fred is hospital bound not much to report again. When I came in to this room this afternoon he had been crying but soon perked up. His full nappy was changed and he managed to fall asleep sucking madly on his dummy.

Rachel and I went back to the flat at about 1845h and when I returned an hour or so later he appeared to be in the same position, so he must be tired.

I am staying overnight in the hospital and this will give Rachel a rest tonight. It is difficult to get a good nights sleep here as so many things are going on around you.

Anyway, must go and feed Fred so that he has another at midnight if he wants it.

Day 96 (Wed 11 Oct)
Thu, 10/12/2006 - 01:27 — endc011
I ring Rachel this morning to check how little Fred is today, after yesterdays experience.
He is much better in himself and is laughing and giggling, and waving his legs about. He seems to be totally different to what he was a few hours earlier.

He is still plumbed in with a hydration fluid, which means that he is weeing alot more than normal. They are checking his urine each time there is a nappy change to monitor his kidney function. So far it has been OK.

With all the fluid going in, there has to be a careful balance with what comes out. This is where things went a bit haywire the last time. He is "positive" at the moment in that he is retaining fluid gradually. On Monday he weighed 7.29kg and yesterday he was 7.45kg. Today he is 7.59kg, so this will be monitored carefully. he may need another lot of diuretics, but he seems to be doing the best he can.

He is feeding OK as well today and all in all he seems to be cheerful.
I managed to reduce our monthly water bill from £70.00+ a month down to £10, and get a £150.00 rebate so that is good.

At the moment not much else has been happening and I am heading back tomorrow, and will get back in time to wave June off at the station.

I will put some new photographs on later, so have a look at the gallery on the 12 October.

Day 95 (Tue 10 Oct)
Wed, 10/11/2006 - 05:01 — endc011
After my last 'blog entry last night Fred settled quite well and fell asleep after a bit of coaxing. I think he had a bit of trapped wind as he was a bit like he was when he suffered from colic when he was little. That passed, and he nodded off, but then I decided he needed a top up of milk at midnight.

I stayed awake and must have got off to sleep about two or three in the morning. There was one poor child who was shouting and screaming out most of the night which kept waking me, though Fred snored through it. Every now and then the nurse comes in to check his temperature, and check his blood pressure, doing his obs. I am so tired I rely on them to ensure he is warm enough and she knows this. He is used to that now and will sleep through it, but it wakes me. I will have a dopey chat with the nurse whilst she does her bit before she scuttles off to another. Otherwise I have the World Service playing on the radio which actually probably keeps me awake. Should North Korea start launching missiles at least I will know first. As well as Frederick of course.

From 0800h today he needs to be nil by mouth, and so a midnight feed could hopefully mean he will sleep through the night, wake at 0500h or a bit later, and have another 175ml feed just before he had to be starved. He also needed his oral meds by his NG tube before that time, so I did not want to overload his belly. He took that sleepily and dropped off. I tried to wind him in the ski-jump position, and he glances at me sideways with a rather sad expression on his face, knowing that he has no wind to burp, but I continue anyway trying to expel any badness from his tum.

At about 0400h they tell me the lab has come back with his blood results which were taken by the Hickman line earlier. As expected, the labs detected the chemo drugs or saline flush and therefore were rejected. This means he will need to have another sample taken early this morning in order for him to catch his late AM slot in theatre. One of the doctors from A and E will come up and do the deed - this time the target will be the top of his foot.

I get some more sleep but wake at 0600h and get him ready for a feed and his 0700h meds. They anaesthetise his foot in preparation an hour beforehand and I am assured he will not feel a thing.

Fred is wide awake by then, and is ready for the day ahead, unaware he is going to theatre of course, and neither aware one of the SHO's from two floors below is on their way to meet him armed with a tray, some wipes and a few butterfly needles and cannulas.

Contrary to what I told Fred he does feel the needle going in the top of his foot and is not pleased one bit. His face goes red as a rooster. Two attempts at getting the blood result in the amount needed and that is portered across to the BRI for testing. A short while later and the result is good so he is still on the theatre list. Hopefully no emergency cases will knock him off after all this hassle.

He gets an extra cuddle from me and reclines happily after that, playing with his hospital activity gym vigorously.

I head over to the canteen for some breakfast whilst the student nurse Hannah looks after him. He is content and manages a few weak smiles, though strangely is not quite "Fred."
At 1000h Rachel arrives and we swap over. I head home and have left Rach a briefing note of what is planned for the day, and what is outstanding. Her mum June is with her for the next three days which is good for them all.

It does not take me long to get back, and I visit a couple of friends as well as my mum and dad. It is good to have a cup of tea and some lunch, and read the papers.

I later speak with Rachel as Fred has been to theatre for his LP, IT and BMA. Unfortunately he is not too well on his return and is sobbing. He obviously had a bit of a painful time down there and is sick. One of the things with the chemo is an excess of mucous which can cause him to gag a bit. Plus the procedures are likely to give him a belting headache, though he gets various painkillers and anti-sickness drugs to help him.

I met with his anaesthetist at 0730h and we agreed to use his lines for the anaesthetic rather than gas, as this had previously made him feel extra grotty. We also had asked Theatre for the Hickman line dressing to be changed whilst he is under anaesthetic which they did, but not as it should have been, so that is replaced on the ward much to his annoyance and discomfort. His NG tube was also replaced in theatre but there was some doubt as to whether it was correctly placed, so he had to have that re-inserted down his nose and throat on the ward, which again distressed him. By then he was mighty hungry too.

I would have thought his hands and foot must have been throbbing as the bruises were just showing when I left.

All in all he has had a bad day, and must be feeling awful and down. I only hope that he is feeling better by now, as I have not been able to speak with Rachel at the time of this 'blog. No news is good news?

I meet up with Dave, Jo and James tonight and we have a good chat. The last time we had a drink together was in June at a party at our house where Fred was passed around to every one and that was the start of the hot summer. Seems a long long time ago now. The evenings are now dark and outside it is thundering, feeling very autumnal or winter-like.

Fred will also have some oral chemo over the next 15 days, plus some other different ones, and his big dose episode today will be repeated again shortly. Hopefully the clotting tests will be done before hand to minimise his misery.

He will be given a "rescue" fluid I think tomorrow, where it reverses the chemo given today down to a manageable level, though I am not sure how that works yet.
If there are thunder storms in Bristol I hope Fred is not disturbed by them. He has slept through them previously. I am not a fan of such storms so will hide under the bed clothes with the World Service playing loudly tonight.

Just as I post this Rachel sends me a text from the hospital to say he is dozing. Once he is asleep he will be away from interference from others. I do not know whether babies dream, but hopefully if he does, they are nice ones for him.

Day 94 (Mon 09 Oct)
Tue, 10/10/2006 - 04:55 — endc011
Fred behaved himself last night and was the star attraction whilst he was awake. Rachel also had a good nights sleep I believe, and when I came in he was already hooked up to the pumps.
They started the hydration fluid at 0500h and this continued until 12 noon where they swapped it all for his high does chemotherapy. This will go in over a 24 hour period as I have previously said, and immediately following that he will go to theatre, for more chemotherapy, plus a lumbar puncture and bone marrow aspirate.

Unfortunately, for some reason, they did not take a blood sample before they connected the chemo, although this is required to check how is clotting is working for tomorrows procedure in theatre. If it is not done today, there will not be enough time tomorrow, and so he will miss his slot and therefore his IT chemotherapy. The only way it can be done is to take it from a vein. The lines are already in use for his intravenous drugs so they cannot really be used. I consent to them doing it via a vein as there is not much choice, and Fred will forget pretty quickly.

Sadly it takes a few attempts just to get 1ml of blood and both hands are needle pricked. Poor angry Fred. The sample goes off for analysis.

Fred has been really well today and has had apple and apricot mush, and then later had some strawberry fromage frais. He was not sure of the latter but soon tucked in to a few spoonfuls. That was his supper really so I did not overdo the solids. We watch Coronation Street together and he seems relaxed.

Later I settle him into his bed. No gro-bag tonight as the lines have to come out somewhere, and having them near his hands is not a good idea.

At around 2130h Jo says to me that the sample we took earlier in the day had clotted by the time it had got the lab, and that they needed to repeat the procedure. Sounds like clotting is good, but they need to test it properly.

So we start again. Fred does not give blood easily and so he has two attempts in each hand plus, a cannula, but this does not work. Jo looks at his feet for a vein, but it is decided to stop his chemotherapy for a minute or two. They use the line and take blood from there which is easier. There is a risk that the blood will have some drug in it from the line, but this is flushed through thoroughly. Out comes the blood and is whisked over to the labs for testing.

If it comes back contaminated with the drugs, then it will the foot I'm afraid. Probably around midnight too.

The good thing is Fred can suddenly start smiling and laughing during the procedures so he must not be toooo grumpy.

Anyway Fred was asleep just now.

I went across to a little sushi bar this evening and had some. Very nice plus had some Tom Ka Chicken soup. Hot, coconut broth with all sorts of twigs in. That must be the lemongrass.
Anyway I need to go back and see what Fred is up to. None of the children are asleep yet and so the nurses are run a bit ragged at the moment.

Day 93 (Sun 08 Oct)
Mon, 10/09/2006 - 03:29 — endc011
Yesterday went well in that Fred could stay out until this morning. Given that we could leave the city behind we ventured as far as Cribbs Causeway.

We have only been there once before, and I remember why now. It was a beastly experience that we shall try and avoid like the plague another time. Those of you who have been will recall a myriad of expensive clone retailers replicating a High Street in Anytown, and American style franchise food shops selling nasty stuff at inflated prices. A normal sized muffin for £1.89 plus a coffee for the same price. Me being a skinflint compares this to Wetherspoons (£1.25 for the two) and probably from the same factory.

However, being the hypocrite we went to Asda and bought various bits and bobs all at deflated prices. Still have not found a butcher in Bristol.

Fred enjoyed the trip as he could look about at new things and we bought him some mini fromage frais which he now loves. better than baby rice, he reckons.

The haggis went down well, and Fred had a good day. He got very tired and grizzly at 2000h, and tried valiantly to stay up with us, but fell asleep between the living room and his bed.
We all sat and listened to the Archers this morning and had some breakfast. I have not heard this for about four months now and used to catch up on broadband. It was nice to have a leisurely few hours together, something which we have not done for a long while. And with it being a weekend made it seem even more lazy. I just needed the papers that time of the day but could not be bothered to walk to the shops.

He had to pop in today for some bloods and came out again. Due to the timing there was not much to do, but we did go and look for the Book Barn just past Temple Meads. This is the second time we have gone looking for it and found the building, although it was closed on Sundays. This was despite their advert stating it was open seven days a week, 9 to 5.
We then decided to head over to Clifton Downs which was really nice. If you have not been there it is worth a passing visit. Basically it is a large green open space, a bit like a plateau that looks over and across to the Clifton Suspension Bridge to the south and to the docks to the north. You get a good view of the A4 Portway down below which is the main road that follows the river, under the suspension bridge. It was rather windy up there, but Fred enjoyed the fresh air.

We headed back for something to eat and then at 2000h we came back into the hospital. Fred's bed was all made, and we plopped him in there as he was getting tired again.

Tomorrow morning at 0600h will see the start of the first bit of chemotherapy. I think it is planned to run over 24 hours so he will not be too mobile tomorrow but previously he could be moved about if necessary. Hopefully he will be up to his solids and milk.

he has been very jolly today and easily laughs. He spent a lot of time exploring my face with his soggy hands. He was amazingly gentle most of the time, intently tracing my ears and nose with his saliva-clad hands. Then he was scratch and twist an eyelid just to see if I was paying attention. However much it hurt, Fred enjoyed it immensely, as did I.

Anyway, better troop back home now as it is very dark outside. The summer has truly gone now and it won't be long before the clocks go forward.

Day 92 (Sat 07 Oct)
Sat, 10/07/2006 - 18:17 — endc011
Fred stayed with us last night and had a right old time on his fleecey play mat, with multi-gym. He combined this with watching television quite well.

He managed to polish off the remainder of his cheesy vegetables happily. It is going in now, being munched around and then not coming out again. He is also now on 175ml of milk as well.
Over night he nice and quiet and no repeat of last weeks antics. The gro-bag is good in that he cannot poke the blanket off with his feet, and so seems happy to be in it. The room is colder than it was, though the heating is not yet on. He wakes at about 0345h for a feed and settles quickly after that. I can hear him fidgeting in there for a bit, but thankfully no singing practice.
This morning we have to take him into the ward for his bloods etc, and we can go again. We see he does not have a nurse today, which either hopefully means they will kick him out promptly, or that we will languish all day waiting for an opportunity for someone to deal with him. It is bright and sunny today and one of the last chances to take him out when he is not being affected by his chemotherapy.

I am doing this much earlier than normal - 1115h - in the vain hope that we will be going again soon.

The house is two thirds full again, with some of the old faces coming back for further treatment. They tend to be simple cases or older children that can be treated locally to them. Hopefully little Fred will one day be able to "move out."

I need to get some more potatoes and swede, as tonight I am cooking haggis. Another relic from the 'fridge at home. I have some snails in there, not many, but i think they are due a visit to Bristol. These snails are dead and in garlic butter, so are not an infestation - like the psochids I had to deal with the other day.

It will be a visit to the shops today in this weather I hope, unless they are all closed by the time we come out of here.

If we have to come back for any reason, no doubt I will update the 'blog again.

Day 91 (Fri 06 Oct)
Fri, 10/06/2006 - 22:22 — endc011
Another good night and without a temperature means that Fred is allowed out today. He came back in last Saturday and so stayed in for nearly a week.

The doctors review his blood results and say he can be away for the weekend but he needs to come in each morning for his bloods, so no long journeys for us. They had suggested a week ago that we might be able to go home for the weekend this weekend, but sadly not to be.

His neutrophils are up (good) and his infection marker is down (also good) so he can have the time off. On Monday at 0600h he will start his 24 hour high dose chemotherapy intra-venously. There is some preparation beforehand, so he will stay in on Sunday night. Then on Tuesday he will have his LP, BMA and IT chemotherapy in the afternoon. Again it will be in theatre and so far he has not had problems with those procedures.

We went out today to the library to return my Enid Blyton books, and then had some lunch in town. Spot of shopping in Boots for some throw away nappies, plus some wipes. He will be back in his power pants soon - the cotton reusables which are his favourite.

We load up with milk and stuff, plus some bottled solid food for him, which the hospital provide. Today he had cheesy vegetables which he liked. He chomps on it a bit more now and it disappears quickly. He has a pot of chocolate pudding which should be interesting for him, as well as us.

It is 1530h so we are ready to head back in the rain. Hopefully Fred will not get another infection this weekend.

We have missed the Juice Run here today, but it has been quiet. Might head to Weston over the weekend or at least do some proper shopping somewhere.

I checked the statistics for the 'blog and there have been 21,550 "page views" so far since I started it. Have a good weekend.

Day 90 (Thu 05 Oct)
Fri, 10/06/2006 - 02:52 — endc011
When I was printing off the last weeks 'blog I noticed that I had repeated a day, so we have gone from Day 88 to 90 so as to correct it.

Fred was well behaved overnight and his temperature has remained at around the 36/37c area which is normal for him.

It is raining quite hard in Bristol and so Fred is a bit housebound in any case today. He is still receiving antibiotics and so he cannot go back to the flat just yet. Otherwise he seems fine to everyone and is as entertaining as ever.

Last night I met up with Wayne and had a chat which was good. Paul appeared and we caught up on more gossip.

Today I nearly did all I wanted to. That was until I encountered the psochids in the bin. There was thousands of the little buggers sitting on the kitchen bin lid. I tried to kill them off with a spray, but took it outside in the end and poured boiling water of them. I think I threw a half used pack of flour out last time as well as some rolled oats. These things are the same as booklice, and like the taste of flour and glue. I checked all our cupboards and jars but there was not anything hiding amongst them. Hopefully they will have all gone by the time I next check.

The drive was uneventful but rather wet. No accidents this time, and I did not take me long.
Fred's counts are improving and he is clearing up the remains of his infection. His neutrophils are increasing by themselves and all seems OK.

As he cannot stay with us overnight, we take him back to the flat whilst we get something to eat. Before we his temperature has increased to 37.8c which is not a good sign. However, it looked like he was over-dressed and over heated a bit. Once we got him home he was 36.1c and has remained at that since we returned.

He gets put into his gro-bag and looks rather comfortable. He gets his feed, plus I give him his meds.

Time for me to head back, as the night staff come on. Fred is pleased with his new toy that James gave him - it has been named "cobweb."

We hope that the infection markers in Fred's blood will allow him back with us, as he starts his chemotherapy next week apparently.

Day 88 (Wed 04 Oct)
Thu, 10/05/2006 - 00:48 — endc011
Fred has had a good night I am told and his temperature has remained normal for nearly 48 hours. This tends to be the target period of time before they assess whether he is fit to go out again into the germ ridden world.

I gather his neutrophils are increasing and so does his ability to fight infections. There are numerous sources of infection which previously was probably his nappy rash. That is liberally covered with cream and has not been a recent problem. Fred's current habit is to stuff both hands in his mouth plus anything else he can get his hands on.

Other sources of infection are his Hickman line site, which I suppose is an infection waiting to happen. Whilst it is dressed, it is a tube from outside going inside. The clear plastic dressing allows close monitoring of it, but sometimes when he is neutropenic, there would be any outward signs of infection, because pus and inflammation come from the white blood cells - which he does not have of course.....

We constantly spiri-gel our hands but with dummies dropping out and getting jumbled up with old ones, plus sneezes and coughs from passers by, an infection is inevitable.

He has been happy today and rather active I hear. It is time for warmer clothes too, both for Rach and Fred. I will still just wear a t-shirt though. I am bringing down a few jumpers, plus the gro-bag for Fred. Hats will be brought out too. Fred's collection of hats is becoming legendary in the hospital.

I took my car for an MOT today and it failed. I think it was the same point last year that was raised as an "advisory" but I get it fixed in the end. I am lent a courtesy car which enables me to visit one of Fred's little friends - James. He bought him a spider that vibrates, and which can be clipped to things. He loves all his toys at the moment, with his bed full of clutter sometimes. James is about six weeks younger than Fred, but is now doing the things Fred should be doing. He has succeeded in rolling over, unlike Fred who needs to just get a bit more momentum to complete the manoeuvre. Trouble is Fred has recently been in the bed trying to roll, plus he has his lines getting in the way.

Whilst collecting my car I popped across to the fire station to see Dave who was working. Nice to have a chat and a cup of tea plus catch up on all the gossip too.

I collect my car and the MOT certificate and head back. I have taken the car off the road now which should save a few pounds on fuel and excise license. Gave it a wash and vacuum though this morning.

Hopefully Fred's temperature will remain constant, which to me might mean that he can come back to the flat tomorrow night. However, I won't expect it will be for a day or two in any case, knowing how things work.

Day 98 (Fri 13 Oct)

Sat, 10/14/2006 - 00:04 — endc011
Last night Fred was rather good and did not cause trouble on the ward. He hopped from his bed to the pram and back again.


Once he was in bed proper, he fell asleep very quickly and did not wake until the early hours of the morning. I did try to wake him and give him his feed, though he was not having any of it. I tried his NG tube but I could not get any stomach acid back when i checked it so I waited until the morning.


With Fred having all of these fluids, he is putting on weight a bit and must not have an appetite.
I watch TV whilst he drifts in and out of sleep, though he does roll over to watch Ladettes to Ladies.


In the early hours I spy him quietly looking about. He has not seen me because I am on the bed on the floor below him, but I can see him through the sides of the cot. I call out his name and he is startled at first. He then looks down and sees me on the floor, effectively. He squints through the gloom and breaks out into a big grin and chuckle. This is his cue for waking up properly and so I get up too.


He has his early morning obs and meds and by 0700h I have been up for ages and have fed him again.


He is still on various fluids but by the end of the day he is off them. He is due a blood transfusion later today and that should be here by 1800h or so.
The girl next door who is about 12 has just come back from theatre and so is a bit a groggy. Freds nurse asks if Fred can pop in as it would cheer her up. He gets out of bed and into his pram. He makes his way next door and entertains her for 15 minutes or so. This could be a new thing for Fred - ward rounds to entertain.


He seems very good today, but from 1630h onwards we notice his temperature has crept up to 37.9c. We had also had noticed that where his Hickman line enters the chest it was a little redder than normal. His nurse swabbed the area and sent it off to be checked but this could be a source of infection. If it was due to the faffing around with the dressings in theatre none of us will be best pleased.


They will monitor the temperature but if he gets above 38c, then our planned weekend away at the flat with Fred will be scuppered once again. It also would jeopardise his next high dose chemotherapy planned for Monday. Anyway, we shall have to wait and see. Today is Friday the 13th, and so being superstitious, I am perturbed.


In any case, have a good weekend.

Day 97 (Thu 12 Oct)

Fri, 10/13/2006 - 03:17 — endc011
Fred has been much more settled over the last day or two, though is still having the rescue agent through his line, possibly for the next twelve hours or.
Rachel tells me that his fluid balance is now "negative" which i think is good. He is also on the diuretics to deal with the excess to.


I came back today and managed to see June on the bus before she left.
As Fred is hospital bound not much to report again. When I came in to this room this afternoon he had been crying but soon perked up. His full nappy was changed and he managed to fall asleep sucking madly on his dummy.


Rachel and I went back to the flat at about 1845h and when I returned an hour or so later he appeared to be in the same position, so he must be tired.


I am staying overnight in the hospital and this will give Rachel a rest tonight. It is difficult to get a good nights sleep here as so many things are going on around you.


Anyway, must go and feed Fred so that he has another at midnight if he wants it.

Day 96 (Wed 11 Oct)

Thu, 10/12/2006 - 01:27 — endc011
I ring Rachel this morning to check how little Fred is today, after yesterdays experience.
He is much better in himself and is laughing and giggling, and waving his legs about. He seems to be totally different to what he was a few hours earlier.


He is still plumbed in with a hydration fluid, which means that he is weeing alot more than normal. They are checking his urine each time there is a nappy change to monitor his kidney function. So far it has been OK.


With all the fluid going in, there has to be a careful balance with what comes out. This is where things went a bit haywire the last time. He is "positive" at the moment in that he is retaining fluid gradually. On Monday he weighed 7.29kg and yesterday he was 7.45kg. Today he is 7.59kg, so this will be monitored carefully. he may need another lot of diuretics, but he seems to be doing the best he can.


He is feeding OK as well today and all in all he seems to be cheerful.
I managed to reduce our monthly water bill from £70.00+ a month down to £10, and get a £150.00 rebate so that is good.


At the moment not much else has been happening and I am heading back tomorrow, and will get back in time to wave June off at the station.


I will put some new photographs on later, so have a look at the gallery on the 12 October.

Day 95 (Tue 10 Oct)

Wed, 10/11/2006 - 05:01 — endc011
After my last 'blog entry last night Fred settled quite well and fell asleep after a bit of coaxing. I think he had a bit of trapped wind as he was a bit like he was when he suffered from colic when he was little. That passed, and he nodded off, but then I decided he needed a top up of milk at midnight.


I stayed awake and must have got off to sleep about two or three in the morning. There was one poor child who was shouting and screaming out most of the night which kept waking me, though Fred snored through it. Every now and then the nurse comes in to check his temperature, and check his blood pressure, doing his obs. I am so tired I rely on them to ensure he is warm enough and she knows this. He is used to that now and will sleep through it, but it wakes me. I will have a dopey chat with the nurse whilst she does her bit before she scuttles off to another. Otherwise I have the World Service playing on the radio which actually probably keeps me awake. Should North Korea start launching missiles at least I will know first. As well as Frederick of course.


From 0800h today he needs to be nil by mouth, and so a midnight feed could hopefully mean he will sleep through the night, wake at 0500h or a bit later, and have another 175ml feed just before he had to be starved. He also needed his oral meds by his NG tube before that time, so I did not want to overload his belly. He took that sleepily and dropped off. I tried to wind him in the ski-jump position, and he glances at me sideways with a rather sad expression on his face, knowing that he has no wind to burp, but I continue anyway trying to expel any badness from his tum.


At about 0400h they tell me the lab has come back with his blood results which were taken by the Hickman line earlier. As expected, the labs detected the chemo drugs or saline flush and therefore were rejected. This means he will need to have another sample taken early this morning in order for him to catch his late AM slot in theatre. One of the doctors from A and E will come up and do the deed - this time the target will be the top of his foot.


I get some more sleep but wake at 0600h and get him ready for a feed and his 0700h meds. They anaesthetise his foot in preparation an hour beforehand and I am assured he will not feel a thing.


Fred is wide awake by then, and is ready for the day ahead, unaware he is going to theatre of course, and neither aware one of the SHO's from two floors below is on their way to meet him armed with a tray, some wipes and a few butterfly needles and cannulas.


Contrary to what I told Fred he does feel the needle going in the top of his foot and is not pleased one bit. His face goes red as a rooster. Two attempts at getting the blood result in the amount needed and that is portered across to the BRI for testing. A short while later and the result is good so he is still on the theatre list. Hopefully no emergency cases will knock him off after all this hassle.


He gets an extra cuddle from me and reclines happily after that, playing with his hospital activity gym vigorously.


I head over to the canteen for some breakfast whilst the student nurse Hannah looks after him. He is content and manages a few weak smiles, though strangely is not quite "Fred."
At 1000h Rachel arrives and we swap over. I head home and have left Rach a briefing note of what is planned for the day, and what is outstanding. Her mum June is with her for the next three days which is good for them all.


It does not take me long to get back, and I visit a couple of friends as well as my mum and dad. It is good to have a cup of tea and some lunch, and read the papers.


I later speak with Rachel as Fred has been to theatre for his LP, IT and BMA. Unfortunately he is not too well on his return and is sobbing. He obviously had a bit of a painful time down there and is sick. One of the things with the chemo is an excess of mucous which can cause him to gag a bit. Plus the procedures are likely to give him a belting headache, though he gets various painkillers and anti-sickness drugs to help him.


I met with his anaesthetist at 0730h and we agreed to use his lines for the anaesthetic rather than gas, as this had previously made him feel extra grotty. We also had asked Theatre for the Hickman line dressing to be changed whilst he is under anaesthetic which they did, but not as it should have been, so that is replaced on the ward much to his annoyance and discomfort. His NG tube was also replaced in theatre but there was some doubt as to whether it was correctly placed, so he had to have that re-inserted down his nose and throat on the ward, which again distressed him. By then he was mighty hungry too.


I would have thought his hands and foot must have been throbbing as the bruises were just showing when I left.


All in all he has had a bad day, and must be feeling awful and down. I only hope that he is feeling better by now, as I have not been able to speak with Rachel at the time of this 'blog. No news is good news?


I meet up with Dave, Jo and James tonight and we have a good chat. The last time we had a drink together was in June at a party at our house where Fred was passed around to every one and that was the start of the hot summer. Seems a long long time ago now. The evenings are now dark and outside it is thundering, feeling very autumnal or winter-like.


Fred will also have some oral chemo over the next 15 days, plus some other different ones, and his big dose episode today will be repeated again shortly. Hopefully the clotting tests will be done before hand to minimise his misery.


He will be given a "rescue" fluid I think tomorrow, where it reverses the chemo given today down to a manageable level, though I am not sure how that works yet.
If there are thunder storms in Bristol I hope Fred is not disturbed by them. He has slept through them previously. I am not a fan of such storms so will hide under the bed clothes with the World Service playing loudly tonight.


Just as I post this Rachel sends me a text from the hospital to say he is dozing. Once he is asleep he will be away from interference from others. I do not know whether babies dream, but hopefully if he does, they are nice ones for him.

Day 94 (Mon 09 Oct)

Tue, 10/10/2006 - 04:55 — endc011
Fred behaved himself last night and was the star attraction whilst he was awake. Rachel also had a good nights sleep I believe, and when I came in he was already hooked up to the pumps.
They started the hydration fluid at 0500h and this continued until 12 noon where they swapped it all for his high does chemotherapy. This will go in over a 24 hour period as I have previously said, and immediately following that he will go to theatre, for more chemotherapy, plus a lumbar puncture and bone marrow aspirate.


Unfortunately, for some reason, they did not take a blood sample before they connected the chemo, although this is required to check how is clotting is working for tomorrows procedure in theatre. If it is not done today, there will not be enough time tomorrow, and so he will miss his slot and therefore his IT chemotherapy. The only way it can be done is to take it from a vein. The lines are already in use for his intravenous drugs so they cannot really be used. I consent to them doing it via a vein as there is not much choice, and Fred will forget pretty quickly.


Sadly it takes a few attempts just to get 1ml of blood and both hands are needle pricked. Poor angry Fred. The sample goes off for analysis.


Fred has been really well today and has had apple and apricot mush, and then later had some strawberry fromage frais. He was not sure of the latter but soon tucked in to a few spoonfuls. That was his supper really so I did not overdo the solids. We watch Coronation Street together and he seems relaxed.


Later I settle him into his bed. No gro-bag tonight as the lines have to come out somewhere, and having them near his hands is not a good idea.


At around 2130h Jo says to me that the sample we took earlier in the day had clotted by the time it had got the lab, and that they needed to repeat the procedure. Sounds like clotting is good, but they need to test it properly.


So we start again. Fred does not give blood easily and so he has two attempts in each hand plus, a cannula, but this does not work. Jo looks at his feet for a vein, but it is decided to stop his chemotherapy for a minute or two. They use the line and take blood from there which is easier. There is a risk that the blood will have some drug in it from the line, but this is flushed through thoroughly. Out comes the blood and is whisked over to the labs for testing.


If it comes back contaminated with the drugs, then it will the foot I'm afraid. Probably around midnight too.


The good thing is Fred can suddenly start smiling and laughing during the procedures so he must not be toooo grumpy.


Anyway Fred was asleep just now.


I went across to a little sushi bar this evening and had some. Very nice plus had some Tom Ka Chicken soup. Hot, coconut broth with all sorts of twigs in. That must be the lemongrass.
Anyway I need to go back and see what Fred is up to. None of the children are asleep yet and so the nurses are run a bit ragged at the moment.

Day 93 (Sun 08 Oct)

Mon, 10/09/2006 - 03:29 — endc011
Yesterday went well in that Fred could stay out until this morning. Given that we could leave the city behind we ventured as far as Cribbs Causeway.


We have only been there once before, and I remember why now. It was a beastly experience that we shall try and avoid like the plague another time. Those of you who have been will recall a myriad of expensive clone retailers replicating a High Street in Anytown, and American style franchise food shops selling nasty stuff at inflated prices. A normal sized muffin for £1.89 plus a coffee for the same price. Me being a skinflint compares this to Wetherspoons (£1.25 for the two) and probably from the same factory.


However, being the hypocrite we went to Asda and bought various bits and bobs all at deflated prices. Still have not found a butcher in Bristol.


Fred enjoyed the trip as he could look about at new things and we bought him some mini fromage frais which he now loves. better than baby rice, he reckons.


The haggis went down well, and Fred had a good day. He got very tired and grizzly at 2000h, and tried valiantly to stay up with us, but fell asleep between the living room and his bed.
We all sat and listened to the Archers this morning and had some breakfast. I have not heard this for about four months now and used to catch up on broadband. It was nice to have a leisurely few hours together, something which we have not done for a long while. And with it being a weekend made it seem even more lazy. I just needed the papers that time of the day but could not be bothered to walk to the shops.


He had to pop in today for some bloods and came out again. Due to the timing there was not much to do, but we did go and look for the Book Barn just past Temple Meads. This is the second time we have gone looking for it and found the building, although it was closed on Sundays. This was despite their advert stating it was open seven days a week, 9 to 5.
We then decided to head over to Clifton Downs which was really nice. If you have not been there it is worth a passing visit. Basically it is a large green open space, a bit like a plateau that looks over and across to the Clifton Suspension Bridge to the south and to the docks to the north. You get a good view of the A4 Portway down below which is the main road that follows the river, under the suspension bridge. It was rather windy up there, but Fred enjoyed the fresh air.


We headed back for something to eat and then at 2000h we came back into the hospital. Fred's bed was all made, and we plopped him in there as he was getting tired again.


Tomorrow morning at 0600h will see the start of the first bit of chemotherapy. I think it is planned to run over 24 hours so he will not be too mobile tomorrow but previously he could be moved about if necessary. Hopefully he will be up to his solids and milk.


he has been very jolly today and easily laughs. He spent a lot of time exploring my face with his soggy hands. He was amazingly gentle most of the time, intently tracing my ears and nose with his saliva-clad hands. Then he was scratch and twist an eyelid just to see if I was paying attention. However much it hurt, Fred enjoyed it immensely, as did I.


Anyway, better troop back home now as it is very dark outside. The summer has truly gone now and it won't be long before the clocks go forward.

Day 92 (Sat 07 Oct)

Sat, 10/07/2006 - 18:17 — endc011
Fred stayed with us last night and had a right old time on his fleecey play mat, with multi-gym. He combined this with watching television quite well.


He managed to polish off the remainder of his cheesy vegetables happily. It is going in now, being munched around and then not coming out again. He is also now on 175ml of milk as well.
Over night he nice and quiet and no repeat of last weeks antics. The gro-bag is good in that he cannot poke the blanket off with his feet, and so seems happy to be in it. The room is colder than it was, though the heating is not yet on. He wakes at about 0345h for a feed and settles quickly after that. I can hear him fidgeting in there for a bit, but thankfully no singing practice.
This morning we have to take him into the ward for his bloods etc, and we can go again. We see he does not have a nurse today, which either hopefully means they will kick him out promptly, or that we will languish all day waiting for an opportunity for someone to deal with him. It is bright and sunny today and one of the last chances to take him out when he is not being affected by his chemotherapy.


I am doing this much earlier than normal - 1115h - in the vain hope that we will be going again soon.


The house is two thirds full again, with some of the old faces coming back for further treatment. They tend to be simple cases or older children that can be treated locally to them. Hopefully little Fred will one day be able to "move out."


I need to get some more potatoes and swede, as tonight I am cooking haggis. Another relic from the 'fridge at home. I have some snails in there, not many, but i think they are due a visit to Bristol. These snails are dead and in garlic butter, so are not an infestation - like the psochids I had to deal with the other day.


It will be a visit to the shops today in this weather I hope, unless they are all closed by the time we come out of here.


If we have to come back for any reason, no doubt I will update the 'blog again.

Day 91 (Fri 06 Oct)

Fri, 10/06/2006 - 22:22 — endc011
Another good night and without a temperature means that Fred is allowed out today. He came back in last Saturday and so stayed in for nearly a week.


The doctors review his blood results and say he can be away for the weekend but he needs to come in each morning for his bloods, so no long journeys for us. They had suggested a week ago that we might be able to go home for the weekend this weekend, but sadly not to be.


His neutrophils are up (good) and his infection marker is down (also good) so he can have the time off. On Monday at 0600h he will start his 24 hour high dose chemotherapy intra-venously. There is some preparation beforehand, so he will stay in on Sunday night. Then on Tuesday he will have his LP, BMA and IT chemotherapy in the afternoon. Again it will be in theatre and so far he has not had problems with those procedures.


We went out today to the library to return my Enid Blyton books, and then had some lunch in town. Spot of shopping in Boots for some throw away nappies, plus some wipes. He will be back in his power pants soon - the cotton reusables which are his favourite.


We load up with milk and stuff, plus some bottled solid food for him, which the hospital provide. Today he had cheesy vegetables which he liked. He chomps on it a bit more now and it disappears quickly. He has a pot of chocolate pudding which should be interesting for him, as well as us.


It is 1530h so we are ready to head back in the rain. Hopefully Fred will not get another infection this weekend.


We have missed the Juice Run here today, but it has been quiet. Might head to Weston over the weekend or at least do some proper shopping somewhere.


I checked the statistics for the 'blog and there have been 21,550 "page views" so far since I started it. Have a good weekend.

Day 90 (Thu 05 Oct)

Fri, 10/06/2006 - 02:52 — endc011
When I was printing off the last weeks 'blog I noticed that I had repeated a day, so we have gone from Day 88 to 90 so as to correct it.


Fred was well behaved overnight and his temperature has remained at around the 36/37c area which is normal for him.


It is raining quite hard in Bristol and so Fred is a bit housebound in any case today. He is still receiving antibiotics and so he cannot go back to the flat just yet. Otherwise he seems fine to everyone and is as entertaining as ever.


Last night I met up with Wayne and had a chat which was good. Paul appeared and we caught up on more gossip.


Today I nearly did all I wanted to. That was until I encountered the psochids in the bin. There was thousands of the little buggers sitting on the kitchen bin lid. I tried to kill them off with a spray, but took it outside in the end and poured boiling water of them. I think I threw a half used pack of flour out last time as well as some rolled oats. These things are the same as booklice, and like the taste of flour and glue. I checked all our cupboards and jars but there was not anything hiding amongst them. Hopefully they will have all gone by the time I next check.


The drive was uneventful but rather wet. No accidents this time, and I did not take me long.
Fred's counts are improving and he is clearing up the remains of his infection. His neutrophils are increasing by themselves and all seems OK.


As he cannot stay with us overnight, we take him back to the flat whilst we get something to eat. Before we his temperature has increased to 37.8c which is not a good sign. However, it looked like he was over-dressed and over heated a bit. Once we got him home he was 36.1c and has remained at that since we returned.


He gets put into his gro-bag and looks rather comfortable. He gets his feed, plus I give him his meds.


Time for me to head back, as the night staff come on. Fred is pleased with his new toy that James gave him - it has been named "cobweb."


We hope that the infection markers in Fred's blood will allow him back with us, as he starts his chemotherapy next week apparently.

Day 88 (Wed 04 Oct)

Thu, 10/05/2006 - 00:48 — endc011
Fred has had a good night I am told and his temperature has remained normal for nearly 48 hours. This tends to be the target period of time before they assess whether he is fit to go out again into the germ ridden world.


I gather his neutrophils are increasing and so does his ability to fight infections. There are numerous sources of infection which previously was probably his nappy rash. That is liberally covered with cream and has not been a recent problem. Fred's current habit is to stuff both hands in his mouth plus anything else he can get his hands on.


Other sources of infection are his Hickman line site, which I suppose is an infection waiting to happen. Whilst it is dressed, it is a tube from outside going inside. The clear plastic dressing allows close monitoring of it, but sometimes when he is neutropenic, there would be any outward signs of infection, because pus and inflammation come from the white blood cells - which he does not have of course.....


We constantly spiri-gel our hands but with dummies dropping out and getting jumbled up with old ones, plus sneezes and coughs from passers by, an infection is inevitable.


He has been happy today and rather active I hear. It is time for warmer clothes too, both for Rach and Fred. I will still just wear a t-shirt though. I am bringing down a few jumpers, plus the gro-bag for Fred. Hats will be brought out too. Fred's collection of hats is becoming legendary in the hospital.


I took my car for an MOT today and it failed. I think it was the same point last year that was raised as an "advisory" but I get it fixed in the end. I am lent a courtesy car which enables me to visit one of Fred's little friends - James. He bought him a spider that vibrates, and which can be clipped to things. He loves all his toys at the moment, with his bed full of clutter sometimes. James is about six weeks younger than Fred, but is now doing the things Fred should be doing. He has succeeded in rolling over, unlike Fred who needs to just get a bit more momentum to complete the manoeuvre. Trouble is Fred has recently been in the bed trying to roll, plus he has his lines getting in the way.


Whilst collecting my car I popped across to the fire station to see Dave who was working. Nice to have a chat and a cup of tea plus catch up on all the gossip too.


I collect my car and the MOT certificate and head back. I have taken the car off the road now which should save a few pounds on fuel and excise license. Gave it a wash and vacuum though this morning.


Hopefully Fred's temperature will remain constant, which to me might mean that he can come back to the flat tomorrow night. However, I won't expect it will be for a day or two in any case, knowing how things work.

Day 87 (Tue 03 Oct)
Wed, 10/04/2006 - 08:10 — endc011
Last night I stayed with Fred at the hospital, which was the first time. Normally Rachel stays whilst I am away, but as Fred was stuck in the hospital I bedded down next to him.

At around 2100h the lights on the ward go down and it tends to quieten down. The pull-down bed is quite comfortable, but the room is quite cold. There are as many blankets as you want but they are flimsy and do not offer much warmth.

I shut the door to the ward and all goes quiet. I can listen to Radio 4 then the World Service in peace. Fred wriggles around a lot but does not start singing as I expected him to. My bed is alongside his but is much lower.

I look up towards his railings around the bed and see the occasional leg fly upwards. It is a bit strange as I almost feel like I am a guest of Freds. He has all his belongings around him and this is where he has been living for nearly 87 days or so. He seems totally relaxed with it all, whereas all the noises are strange to me. The nurses pop in, rummaging around in the darkness to do his obs occasionally which wakes me. I have no alternative but to chat with the nurse in the early hours. Difficult to sleep but Fred snores loudly most of the time.

I wake him at 0200h for his feed and he snaffles that quickly, and off to sleep again.

By 0700h he is wide awake and think fun should begin. I cannot get him to sleep and give him 0700h meds. By now he is full of beans and wanting to play. If you leave him unattended he is wriggling around calling out, settling only when I wearily give him a tickle and chat.
This goes on until I have to get up, and the nurses pop into see how is doing. He is on form at that time of the day.

Rachel arrives at around 1015h so we change over and I head back.

Fred's temperature stayed down overnight and needs a few more layers really and we discuss gro-bags. Basically they are sleeping bags that he can be popped in one in a suit, and no need for blankets which he can dislodge.

When I get back to mum and dads, Ange has sent a blue gro-bag, perfect for him which is a coincidence. Hopefully that will keep him warm over the next few weeks.

He does well over the day and is dozing when I next make contact with Rach.

He has been alert all day and hopefully he will sleep a bit more now.

Yesterday he was trying his hardest to roll over and nearly does it. He gets in quite a rage as his pipes prevent him from succeeding. He bends backwards like a banana getting in a stew again. Hopefully we can encourage him to do better once we tape his lines to his side.

I meet up in the evening with some colleagues which is nice. Caught up on the gossip.

No other news tonight really. The doctors continue to be pleased with his progress, and his recent infection s hopefully going away. They have suggested that he may start his next batch of chemotherapy this week if his counts recover. His neutrophils have increased to 0.55, but these may drop again due to the last lot of chemo taking effect.

Hopefully Fred will be able to come out again before that treatment starts, as the summer has now passed and autumn draws in.

Day 86 (Mon 02 Oct)
Tue, 10/03/2006 - 03:57 — endc011
Rachel stayed with Fred overnight and headed back early. He had been relatively quiet in the night, waking for feed.

I got in at 0900h and he was waiting in his chair for me. His temperature today bobbed up and down from 36c to 39c, with the occasional paracetamol. This works quite quickly but he then spikes again.

Mum and dad visited as well which was nice for Fred and I. He is quite smiley but not the normal Fred. You would not think he was feeling a bit grotty though. He feeds quite well today but sicks up on my new trousers. He is splashed with all his milk so I have to clean him up.
He has a bit of a cold I think, and they suck out a mucous sample from his nose which angers him. He sorts himself out after a few seconds and has a feed.

The weather today is sunny, then rain, then sunny again, so it would not have been much fun for Fred outside.

Mum and dad head off and I go back to the flat to get some clothes as I will stay at the hospital tonight. I bring in my snacks and prepare the fold down bed. Fred is not settling, and despite being awake nearly all day, he is up for laughs and is becoming unusually active. With the lights dimmed I hope he will take it as his cue to sleep.

I will have to give him his 2200h meds, and then probably a feed later.
Hopefully it will be a quiet night for him, as well as me.

Day 85 (Sun 01 Oct)
Mon, 10/02/2006 - 01:56 — endc011
Last night I cooked the goat leg which was really nice. I did it just like lamb, as we do not have much in the way of ingredients here. Spiked a few holes in it and inserted some slivers of garlic, and seared the joint in the frying pan to brown it. Stuffed some sprigs of rosemary in it, which I had nicked from the bush up the road. Roasted it and then ate it. Very nice. A bit like a slightly bland lamb, but no where near a fatty. Only about a tablespoon of fat from the whole thing in all.

Again it is just me in the house.

The weather is really bad this morning as I prepare to head down to the ward. Good job I have the car on the drive as it is a 15-20 minutes walk otherwise. It is thunder and lightning so I choose the most plastic brolley I can find on the hall stand.

Fred has been quite good over night and still has a temperature that fluctuates. One minute he will be 36c then 39.5c again. Today his heart rate was up in the 200 region again as he tried to cool himself. He gets some medicines which bring it down. He also has high blood pressure but this drops by its own accord.

Not sure what his blood count is today but the results of the bloods taken yesterday won't be known until tomorrow.

He is fine in himself and most of the time you would not know he was feverish, other than to touch his head. His arms and legs get cold so if he is just in his nappy, we will put his Emily socks on, as they come up to his knees. Scratch mits for his hands as he is trying to dislodge his NG tube and Hickman line.

We pop into town whilst he is sleeping and visit the Slow Food Market. Have a quick chat to the Fishleigh traders whom we have spoken with before. I buy some of our favourite sausages, and head back to get some trousers as mine are all grubby and wet today.

Not much happens in the day. We try to get our television working in the room but the remote has been missing for weeks and so it does not work. One of the nurses reliably informs me that all of the remotes were stolen one day, and so there are none.

Fred's weight is 6.91kg so he is gaining slightly.

Rachel will stay again with him tonight and I will head back again in the rain.

We popped up to the flat at 1700h and when we came back Fred was sitting on Hannah (student nurse) helping her at the desk. I did not recognise him at first but thought he looked familiar. He was earnestly looking at the files in front of him, but looked very relaxed. I had to take a photograph of him and her as it looked so sweet.

Day 84 (Sat 30 Sep)
Sun, 10/01/2006 - 01:16 — endc011
Last night Fred was unsettled and was running a slight temperature of about 37.5c and a little higher. He is approaching being neutropenic again and the risk of infection is high. Generally if he is at 38c for more than 30 minutes, or over 38.5 at any time he should be taken to hospital.
We kept and eye on his temperature during the night and it bobbed up and down, and went down to 36c for a bit. All the time Fred was chirpy, but not settling as he should.

At around 0600h Fred's temperature went up to 38 and he became very unsettled, and felt really really hot. This was sustained for a while and then was 38.5c. We called the ward and they said to take him to A and E immediately and they would bleep the oncology registrar Jo who was working.

We took him in and they were expecting us. At that time of the day 0650h the department was clearing the decks for the rest of the day. He was seen immediately and they did various tests on him. In triage he had risen to 39.5c which is hotter by 0.4c than he has ever been here.
They gave him anti-biotic and paracetamol, and he was taken across the corridor to have a chest x-ray. Loads of bloods taken for testing and he then waited in a room until 1030h, where he was transferred back to Ward 34, into his owl little bed.

Jo thought the weekend was doomed yesterday as she saw Fred late in the afternoon having to come back in to collect his medicines, and then heard he had popped back even later for an NG tube insertion. She knew he was determined to come back to his ward....

He spent most of the day resting though is not wanting to feed by bottle. This has become more noticeable over the last day or two, and we assume that it is because he is not feeling right.
His weight remains at 6.9kg and his neutrophil count is 0.3, whereas yesterday was 0.35 so they are dropping slightly.

At the moment he is quite chirpy with his temperature bouncing up and down. Rachel and I went back to the flat to get a couple of hours sleep this afternoon and he was sick again. His temperature had risen to 39c, but now (1815h) he is 36.4c.

Rachel will stay tonight and sleep on the drop down bed by his bed. It is not the best of places to kip but Fred might get lonely in the night if we are gone. He has got used to us being near him again over the last few weeks.

I will go back to the big house. Again it is empty other than me tonight. I hope I do not encounter another male collapse either - I found one just up the road from A and E this afternoon coming back to see Rachel and Fred. He was just lying there holding his stomach and trying to get up. I stopped the car and went to see if he was OK, and noted a fellow countryman near him. He got up, fell over and got up again staggering about. Neither wanted my help so they wobbled off unsteadily around the corner where there happened to be a dozen or so ambulance stacked up waiting outside A and E. I waved them on their way and they went off. Dodgy kebab I think.

Hopefully this is a blip for Fred. He has had a good run so far and these episodes are worrying as you get to used to not having surprises sprung on you.

I will go back and do something with the goats leg I was going to cook for tea. Did not have time to think what I could do with it, other than roast it like lamb. Perhaps Fred will like some tomorrow along with the pureed cauliflower and broccoli I will do. Had fish and chips the other day, must watch my figure as unhealthy eating is very easy here.

Day 83 (Fri 29 Sep)
Sat, 09/30/2006 - 00:11 — endc011
Today we went down later than usual as we did not want to hang around longer than necessary. We get in at 1100h and Fred has his bloods taken pretty quickly.

It will be the weekend handover so the doctors are locked away in the meeting room. They come in to say that Fred can go out for not only the day, but the weekend! That was good news, and we get ready to pack his stuff up. We still need to get some new meds for him as they are either expiring or have run out. They suggest we come back at 1530h to pick them up.

There is also a discussion that Fred could have gone back to Paignton today, but he has only 0.3 neutrophils, so it would not be wise to be away. His platelet count went from 53 to 27, back to 64 yesterday. Today it is a whopping 500+. There is a possibility that if all goes well he could come back to Paignton next weekend. We will have to see.

Today we wandered around the streets and got some stuff. We also visited our third home - Wetherspoons - and had some lunch.

We go back and pick up his meds and go back to the flat. Fred settles down happily for a bit and I have a long hot bath. I do not usually use the bath on the first floor - in fact it is the first time - but I listen to my radio on my MP3 and nod off for a bit.

I get back downstairs and Fred is getting gripey for food. He tucks into stewed apple again but is unsettled. Whilst we are not looking he hoiks his NG tube out again in one movement. Great - now we need to go back to the hospital to have a new one inserted.

Rachel goes down with Fred whilst I cook the evening meal. She comes back and Fred is happy again, so we top him up with milk and meds. A bit later he sicks up all his milk and meds, so we have to unwrap him and change him, plus clean his little bed. Fred is non-plussed at all this, and his NG plasters - now all wet - start to come away. There are a few specks of mucousy blood in his vomit so which probably come from the NG tube going down earlier. I ring the ward and they reckon that is what it is, given the circumstances.

Fred is now fast asleep in the big cot, and appears happy. His temperature is OK at 36.5c. Fred seems to be OK so we will keep an eye on him overnight. His weight is now 6.9kg or 15lb 2oz. That was his weight on the 4 July 2006, when he coincidentally was 15lb 2oz when he was 15 weeks 2 days old. Three months have gone by and he has gone up to 8.5kg, down to 5.9kg and now where is.

I am doing this on the Teenagers Rooms PC, which is slightly different, so apologies for the grammatical errors and spelling mistakes.

Fred might go to the Dunster Wood Fair if he is lucky tomorrow - we cannot risk taking him to the Great British Cheese Festival in Cheltenham this year. We have been there the last two years running. maybe next year?
Have a good weekend.

Day 83 (Thursday 28th September 2006)
Fri, 09/29/2006 - 04:45 — endc011
Last night Fred had the chemotherapy drug and another which follows on after it. Rachel stayed with him, and he behaved overnight, being fed twice. I think it was the best nights sleep she had had at the hospital as the staff might not be checking him quite so often at the moment.
I was all alone in the house last night as everyone has gone home. Obviously R and F are at the hospital but this twelve bed house is a bit creepy at night with me rattling about in it. Lots of weird noises and things and even if there were anyone wandering about I would not necessarily know who they were. All they would need to do is say "hello"and I would trot back into my room.

He gets his blood transfusion which takes 4 hours, and finishes at 1100h. We are able to go out after that, and all is arranged for us to escape early.

When this finishes we are told to hang on for a bit, as the doctors might want him to return later in the day for some reason. Another doctor has to be consulted, so we wait expecting it to be a short wait.

Lunchtime comes and goes and we are still waiting at 1500h. We can go out but all we are waiting for is whether we have to come back. At just after 1500h the doctor comes in and says we can go home and come back tomorrowmorning. Another precious day is wasted.

We head across to Ikea and Fishponds, as it is only a short distance away and is a change to the usual scenery. We take a short cut and end up in a tight back street in St Pauls, and meet other cars coming down the hill -neither queue can move. The people behind me just keep hooting, and the girl at the head in the opposite queue is getting in more and more of a stew as she tries to reverse in what is a tight spot. She tries a three point turn too in a space that a bicycle would have difficulty in turning and it goes from bad to worse. The female driver behind me is now trying to push me along, but there is a car in front of me, so I ain't going anywhere. She gets out to move the car for the other driver with lots of cussing. The hooting behind gets more frenzied. Fred is looking concernedat the situation and sinks back into his chair. Doors locked. It all gets a bit comical with everyone getting angry. I was going to pipe up with some wise-cracks but did not want to start a riot.

We did want to go to the Zoo if possible, but no time now. That was quite good and we wandered around looking the things. Fred liked it and we had a coffee in the restaurant. No Swedish meatballs today, or Herrings even.

We get back at 1800h and get Fred all sorted. Its a chilli con carne night tonight so whilst that is being done i am using the Teenagers Room at the house. No one in but the three of us at the moment. We have lockedourselves in good and proper at the moment.

Tomorrow we have to go in again for something or other. There was some talk about the possibility of Fred being allowed back to Paignton for a day or two between treatment, if he us up to it. Now that would be scarey aswe would be two hours from here if there is a problem. Obviously there are hospitals nearby home, though as Fred is so small, and the treatment so specialised, I would be a bit nervous about being to far away.

Some of the other parents have told me about staff at other hospitals reading instructions before giving chemo, or being guided by Bristol Childrens Hospital via a mobile phone and text messages.

Anyway, that's a long way off I think in reality.

Must fly as the bottom of the pan will be catching by now me thinks. Must do me rice quick.

Day 82 (Wed 27 Sep)
Thu, 09/28/2006 - 01:02 — endc011
I manage to get the things I want to do today, and have some lunch at mum and dads.
I then go into town as I want to register my car as off the road (SORN) at the Post Office. I go in there and there is a huge queue as usual so pop into the Halifax to pay some money into Fred's account. The queue is just as long so I head home to collect my things before coming back here.

I pop into 3B's wine store to see Lyn who had been sending the postcards from America, as well the Universal Studios top. We have a chat about the local gossip and Fred's activities.
I am delayed on the M5 as there was an accident just ahead so we are stopped for 30 minutes whilst the collision is dealt with. People are wandering around the cars shaking their heads in disbelief which I found peculiar. Anyway we get going again and I arrive in time to see June off at the station. Some trampey looking people are trying to get on the bus, and are squabbling on the mobile phones. Most of them go off to the pub but one returns just as the coach is to go. He is told that he is unfit to travel because he is "in drink" and so is sent off with a flea or two in his ear.

We get back and my little boy is in his pram, by the nurses station helping them. he smiles broadly and wriggles about when I speak to him.

His platelets have increased to 64 today. Again they took some bloods this morning to check, and then lost them again! So they take another set of bloods from his tiddly body. There must be a cupboard somewhere full of blood specimens that nobody wants.
This means he can have his chemotherapy, and so he is all tubed up when I see him. Once that is done he will get a second flush of a drug that will go in over a few hours. Therefore he will be in overnight so Rachel will stay here tonight should he try and get up to go home.
His hair is getting longer and is really downey today. Much longer than yesterdays which is strange. His cheeks have filled out too.

He will also be due a blood transfusion tomorrow (I wonder why...?) and so that is planned for first thing hopefully. The nurse reckons he could then go out for a bit.
Hopefully all will be well over night and Fred takes to his chemo OK. I think this is the last bit of the second phase.

His weight has increased to 6.84kg I think which is also encouraging and his feed has been increased by a little more. I see the remnants of solids in his bowl so he must be trying some new stuff.

Day 81 (Tue 26 Sep)
Wed, 09/27/2006 - 06:27 — endc011
Fred behaved very well last night when it was just the two of us and had his feeds earlier on and settled very quickly.

I pottered about getting his meds sorted for the following day and by then it was gone midnight. He stirred at around that time so he had another feed.
Tonight he slept well and only grumbled at 0300h for some food. He squatted on my lap at that early hour and finished most of his feed before falling asleep. He is still beaming at that hour. I finished the last few drops via his NG tube. No singing tonight as he was awake all day watching the world from his pram, and so slept without stirring.
I awoke at 0600h to do his nappy and early morning meds, gave him some grub, and had an hours kip, as did he.

Once he was set up in his pram Rachel and June arrived at just after 0930h, so I handed him over and jumped in the car to head back. Two hours later I was back in the 'Bay.
Fred today had a test to check out his kidneys once more and this was done by being given an injection of a radioisotope that monitors his kidneys efficiency. I think it is tested by way of a Geiger counter. He has blood tests every 30 minutes and the results will be known tomorrow.
I meet up with two colleagues from work to discuss work-things. I then go into town to sort some stuff. I will take my car off the road now as i do not use it really. At least for the time being.

Later I meet up with Wayne to have something to eat at the Embassy - more fine grub again.
Rachel rings to say Fred is OK and has behaved well. No other news on his progress.
I met up with my friend from work Emma who has been raising some money for Fred. Everyone has been so kind during this time.

Not much more to say other than there are a few more recent pictures of Fred on the 'blog.
I am also sooo tired so will have to go to bed and sleep. Sorry.

Day 80 (Mon 25 Sep)
Tue, 09/26/2006 - 03:19 — endc011
Today is Day 80 – Had I intended to go around the world in as many days I would be back by now.

Rachel left early this morning and prepared everything for me and Fred.

When I get there his nurse for today was talking to someone on the telephone. It was Fred’s Health Visitor from home enquiring about his progress. I had a talk with her and told her progress to date.

Fred had his blood and obs done, and I had to await the results. The doctors came and had a look at him and he has put some more weight on. He is now 6.7kg and climbing. The results need to show his platelet count is over 50. The other day it was 27 and 33, today it came back as 30. Too low for chemotherapy today so I am advised to come back in on Wednesday for a further check.

He is almost neutropenic at the moment meaning he is coming close to risk of infection. He has a bit of the snuffles today and has been sneezing a lot. I raise it with the doctors but they do not seem too concerned having just had a look at him.

My mum and dad travel up on the train to see us, and I meet them in reception with Fred. We have a chat and then head out for some lunch. They bring with them a t-shirt that Lyn and Dave got in America. It is a natty little green Universal Studios shirt from Hollywood. It is a nice bright colour that will suit him. He has got three American postcards from them, and these are on his little notice board in the room. There are some from Cornwall and one from Burnham-on-Sea.

The weather is quite warm again today so Fred is not swathed in blankets, and enjoys his freedom. His arm and legs wiggle.

When they have gone I have a wander around the town. There are a lot of prams out today, and everyone looks happy with their little ones. Fred peers at them too as he goes by.

I get back and try and settle Fred. He is upset today, or very tired as he cannot rest. He becomes a bit difficult early on and must be missing his mum.

I get a call from the hospital to say that he needs to come in tomorrow for some tests. They want to monitor his kidney function again and so needs to be in. He can go again after the tests but they take a couple of hours.

He is now asleep, though is only sleeping lightly. He has not slept all day, other than a short nap. Hopefully it will carry on for a bit longer….

Day 79 (Sunday 24th September 2006)
Mon, 09/25/2006 - 02:43 — endc011
After posting the ‘blog yesterday we were eventually given the OK to take Fred back for the night, and we did not have to come in today - Sunday unless he showed any problems. This was good news for us, as well as himand so we headed back.

Fred is still being a bit disruptive in the early morning, and enjoys the attention he gets in the gloom. When he is not making a noise he is making a frantic and rapid sucking noise on his dummy.

Fred has been enjoying sweet potato puree as well as apple puree. The apple came from Simons and Helene’s garden in Ashburton, and he liked that. They were really tasty and sweet so were ideal for him. We are making smallbatches and freezing the rest. I have some other fruit and vegetables in the fridge which will be given to Fred whilst he is able to have such food.

We wake up this morning to a bit of rain and were at a loss as to what to do. This is the first time in 80 days or so that we have not had to be somewhere at a particular time. The first day that Fred will not have been at the hospital (touch wood.)

We have our breakfast and Fred gets his, just as leisurely. The sun starts to come out and it brightens up quite quickly. We do not want to waste our only day when Fred is all ours for the day, so we decide to go somewherethat is different to Bristol and in the open. We decide on Burnham-on-sea which just down the road in effect.

I used to live in Burnham until 1973 when our family moved to Paignton. Fred was due to visit Burnham before he was ill, and this seemed to be a good opportunity. We came over the Clifton bridge and joined the M5. Fredis once again in his “egg basket” or car seat, proudly looking around. I am driving and Rachel is in the back keeping an eye on Fred. She is in an ideal position to see what he is doing and take the appropriate action. He is dribbling a lot today so his chops need constant attention.

We park up near the sea front and take a walk along the High Street. Most of the shops are open, and it is quite busy. I have been looking for a SCART lead for my Freeview box I have brought back to the flat, and I buy one for £1.00 in the Poundshop. Terrestrial reception is pretty crumbyhere, but digital is good. I assume it will work.

We head up to the seawall and Fred gets his first blast of sea-air. It is a change from the city air he has become used to. The tide is out, so the expanse of mud is as spectacular as ever. We sit on the bench and Fred drinks his milk and apple puree. The local pigeons patrol around the base of our bench hoping for some crumbs, but they will get none from us today.

It is now quite sunny so the parasol comes out for the first time in months on his pram. He seems to enjoy the breeze and watches the pigeons, who are watching him. Some are rather moth-eaten looking but seem happy and worryfree.

We take him down the slipway on to the beach and push him about a bit. There are quite a few people on the beach today, some digging holes, and others making sandcastles. When I was little we used be go amongst the dunes and gorse and hopefully Fred will be able to so the same one day. It is much windier on the beach, and there is a bit of sand in the air. We retreat to the pub on the corner where we have lunch. Again it is a Wetherspoons and is smoke-free in most of it.
We walk along the promenade to the pier. At this point I remember that the Burnham website has a web cam trained on this point. I have always wanted to see ourselves on it, so ring my friend Mark. I ask him to log on andlook at the web cam. He squints at the image and sees me with Rachel and Fred, with me waving my arm. I have to keep waving for longer than I expected as the images is only refreshed every fifteen seconds and peoplekept getting in the way. He captures the image and emails it to me on my phone.

It is a bit blurred, but you can make us out. I hope to be able upload it on this ‘blog when I get back and am able to.

We then drift back to Bristol. We keep thinking that we should be somewhere, and it is a real change to be normal again for a few hours.

Next week Fred will have a bit of a rest. Depending on his count recovery, he will commence the third batch of chemotherapy soon. This will mean he will become quite sick again and we will not be able to take him out againfor a while, and that he will probably have to stay in hospital overnight a lot more.

He is getting his eye lashes back, as well as his eye brows. The browslook much darker than before though. He is also getting a fine “suede” head. It is barely detectable, but can be seen on close inspection. Shame really, as it will all soon disappear again. At least it has come back, which was one of the things I wondered about. We are told it could come back any colour or even be curly.

Fred gets back and shouts to himself whilst we potter about. He is much more alert than he has been before, and watches our every move. When he is crying in frustration or hunger, you can call out his name and starttalking to him, and he stop for several seconds, peer at you intently, and then carry on.