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.