Day 273 (Mon 02 Apr)(Day Plus 48)Tue, 04/03/2007 - 02:40 — endc011
We had a good nights sleep followed by a decent breakfast and got down just after 0900h to find that he had been a bit grumpy in the night at times, but was generally settled.

He did not look too pleased to see us though, and after a few cuddles he was chirpy again. He has retained some fluid overnight as his face is a bit puffy and yesterday he weighed about 9.96.

He gets a splosh of Frusemide which will shift some of the fluid and by 1900h he weighs 9.62 which is an improvement. His mouth is a bit sorer today as his tooth is developing and he has an ulcer on his gum too.

As his nose remains a bit blocked, he is blowing through his mouth a bit so this dries it out and leaves him a bit crusty orally.

He spends quite a while asleep which is good if he is grumbly and now predominantly lies on his side holding onto the bars. He accepts the dummy tentatively though.

My mum and dad visit just after Rachel heads back. They stay for a while and Fred is awake but remains unsettled for them. A couple of weak smiles and he seems to be happy they have visited him.

His CRP has risen again to 41 which is annoying. He has not really been having much milk as they have tested for an intolerance to lactose and we shall find out those results soon. In the meantime he gets his SMA Gold in 10mls, via his NG tube over 30 minutes. This is mixed with Gaviscon to neutralise some of the acid in the stomach I think.

Up to the time of posting the ‘blog Fred has kept it down so far. We really do need him to get feeding properly to be able to move forward a bit more.

One of the medical students comes in to have a look at Fred and we discuss him for a bit. She was born in Torbay Hospital and is currently in her fourth year here. Fred remained asleep through most of it though.

I am settling to watch Coronation Street in a moment.

Day 272 (Sun 01 Apr)(Day Plus 47)Mon, 04/02/2007 - 05:48 — endc011
I awoke this morning with the theme tune of Howard’s Way still ringing in my ears, and so headed across to my mum and dads for some late breakfast and a cup of tea.

I stayed there for a bit and then drove back in nice weather.

When I got in Fred was having some “mouth care” with Rachel and Charlotte, his nurse. He is a bit uncomfortable as his tooth may be playing up, but also he has got some of this rubbery gunge stuck on the top of his mouth again, which is joined to his tongue. It looks like a big sultana and needs to be got at, but he is not having any of it, so he gets a mouth wash with anaesthetic, some water and a bit of Nystatin.

He will suck on a dummy when he wants, though it must be sore as he has rejected a few dummies overnight.

He looks fairly pleased to see me when I come in, and he settles for a bit.

He spends quite a while asleep today and once awake seems alert. Rachel heads up to the house to get the washing going as she is staying again tonight in the hospital. Once she has gone one of the nurses suggest that Fred is OK to get into his pram and have a 5 minute tour of Reception and the bit outside the hospital. He has not seen daylight since the end of November I think, and gets wrapped up good and proper. He has his bumble bee outfit put on him, plus he has mittens for socks.

I cannot get hold of Rachel because she has left her bag and mobile ‘phone in the room and so I seize the opportunity to get going for a few minutes. Charlotte comes down with us and then returns to the ward.

I take a few photographs of him outside the hospital and he is intrigued by the outside world. The “lollipops” outside the hospital are of great interest as is the traffic whizzing by. There is a strong breeze and his eyes water quite a lot. Once he has got used to it he is smiling quite happily.

For some reason Rachel comes in via the main entrance today, as we normally come through A and E on Level 3. I do not see her as I have my back to her talking to Fred. She is mightily surprised that Fred is out of his room, and so that was good.

Once back he gets a hot bath and is rubbed down with towels which he loves. Then is he is liberally dusted with talc and for an extra treat slips into a warmed sleep suit. He is asleep within five minutes.

His weight today is 9.96kg which is good, as he should not be having too much fluid going into him now. Quite a few of the drugs have been stopped and now there are more gaps in his line time. His CRP is now down to 27 when it was 53 the other day and his temperature has remained stable too. He did restart his I.V. Septrin which deals with the possible pneumonia (PCP) problems he had a few weeks ago after coming back from theatre. They never found out what it was as the tests came back negative, but they do think it was, or is, a lung infection of some sorts. Hence the I.V. Septrin re-commencing and this seems to be working anyway.

It is good to see him sleeping so soundly as it must do him good.

I managed to bring a girl back to the house to stay overnight, and we had a nice quiet meal together. Her name is Rachel and I married her a few years ago……. The nurses suggested today that we should let Fred stay with them in hospital tonight as they are relatively quiet on the ward and they are well-staffed, and we should head back to the house and the two of us just be “normal” for a few hours. At first we were reluctant but in reality, if there is a problem there is nothing really we can do. If he is upset no amount of consoling from us helps, and he knows the nurses well anyway.

So we decide to leave him there fast asleep, although he does wake as we are going out of the door. He watches us with one eye open and drifts off again. We are only a five minute dash away and they can contact us if necessary. Most nights recently have seen him sleep well, and with a carefully planned set of drugs overnight he can sleep happily. Hopefully Fred will be able to dwell on his new found independence and think about the big world he looked at this afternoon.

We get back and I have a poke about in the cupboards. We do not have much in and as it is Sunday, the shops are all shut. However I rustle up some pasta with tomatoes, broccoli and peas, with garlic and chilli. Its taste is improved somewhat with lots of cheddar, and this make a nice quick meal. Rachel washes it down with some cider and I drink the last remains of my Admirals Ale which Wayne and Claire bought for me when they visited last in late February.

She gets the washing machines fired up and disappears as I am doing the ‘blog. She returns a while later with a pile of ironing all done.

A bit of television is watched and then my eye lids are as droopy as ever. Whilst Rachel is ironing I ring and speak with one of the nurses who says Fred is fast asleep and has been for a few hours. I forget to tell Rachel and a short while later she speaks to one of the doctors who says Fred is making a protest at the moment as his nappy is being changed, although he has discovered Fred is partial to a head massage.

Rachel has agreed to let me have the radio on tonight in the background.

Day 271 (Sat 31 Mar)(Day Plus 46)Sun, 04/01/2007 - 06:01 — endc011
I rang Rachel a few times during the day and Fred had been sleeping most of the time, but had been a bit grumbly.

He has been dozing in his pram a bit more now but is not tolerating hs feeds as he was.

We await some tests as to whether he has developed a lactose intolerance, which can happen after a bout of chemotherapy, and an extended time without feed conventionally. I do not know how long that takes, but his recent dislike of feed is certainly another setback for the moment.

Tonight I had a chinese with Mark and Amanda, following a visit during the day to see my godson James. He was very active and was extra dribbly, plus covered in crumbs from the box of broken biscuits we shared. James has stopped doing his “Prince Charles” impression, which is sad.

I have not had a chinese for months and months and I had chilli prawns Kung Po which was very good. A few beers and wines accompanied the meal and we watched a few episodes of Howard’s Way. I have not seen this since 1985 but vividly remembered the plot and characters with fondness. I think purchasing a boxed DVD set is in order now.

The last time I watched it properly was in Newcastle 1984 – 1987 when it was first shown on television and when I was a student living with Shaun (blogger married to Victoria and with Devon and Violet.) I was particularly keen to watch some episodes where Jan Howard had a liaison with Claude Dupointe, a fashion designer who wore a funky shirt, the same that I used to wear. It was a limited edition shirt made by Mono given to me by my brother. Happy days!

Day 270 (Fri 30 Mar)(Day Plus 45)Sat, 03/31/2007 - 19:52 — endc011
Fred woke me this morning with a wail, and carried on for an hour with what appeared to be lots of pain in his stomach. He had been settled all night and I woke every two hours to see what he was up to and change his nappy if necessary.

He had painkillers at 0700h and by 0800h he had settled into a deep sleep again. To see him throw himself about his cot in pain is very difficult given he seems to have had a run of happiness recently. He is not happy to be held and gets very angry at intervention, but is soon fast asleep.

I fall asleep until 0930h when I am awoken by Rachel peering round the curtain, saying “helloooo.” Fred remains curled up on his side snoring loudly, and wakes with a start. He takes about a minute to adjust and then starts shouting again. Comforted by mum, he starts to play.

He has not had any fluids by mouth for a day or two and we are worried about his fluid intake. His TPN last night provided him with a top up, and his NG meds were followed by water flushes so he is getting fluids, but not in the way we hoped.

Later in the morning he accepts water by the spoon reluctantly and we still think his tooth may be causing him discomfort. He does drink this little bit of fluid as he used splutter in the early days.

By mid-morning he is “full with beans” and enjoying our company. His alertness is great in that any noise or movement will see him turn toward it and decide whether it is worth continuing to look at. If it is someone coming in through the door he will watch them and wave in his usual manner. If they wave back the whole thing can go indefinitely.

The doctors have a look at him and he continues as the day before.

I head home and check up regularly on his progress.

I do some more batch cooking again and tonight comprises sausages in onion gravy, with cheesy mashed potato; a beef pie with a detachable puff pastry lid; and cottage pies. They all go into the takeaway style foil containers and I then freeze them for use in Bristol. I managed to clear out my mums fridge of vegetables in the process too. One of the potatoes I had here had sprouted a foot long shoot which had made its way through the dresser door into the light.

Day 269 (Thu 29 Mar)(Day Plus 44)Thu, 03/29/2007 - 23:01 — endc011
I get in a bit later than normal this morning as I nodded off in my Dettol bath this morning. I was a bit dozy as I left the television on all night in the room though did not notice it.

Fred had a restful night and only woke a couple of times for a drink. He is still a bit difficult with feeding and drinking and the last day or two has seen him not wanting much. A few days ago he was managing a staggering 350mls of water, milk and cereal, but today has had only about 100mls reluctantly.

This is a worry for us as one of the key things to get you out of here, is him being able to eat for himself, and not rely on the NG tube or TPN. However it is a step in the right direction.

We speak with the doctors who are weaning him off various drugs; the most recent was Defibrotide which prevents VOD. This a nasty thing that involves the liver and the blocking of the small veins in them, and which can be life threatening in a few cases. By him coming off it, it is hopefully another indication that he is heading in the right direction.

We are also told that there is an international shortage of the drug, it occupies about 8 hours of his line time and obviously has a resource impact on the nurses who have to hook him to it. So everyone appears to be a winner.

Fred has also been a bit grumpy recently, although he is not having regular pain relief as he was a few weeks ago. It is clear he is in discomfort and one of his cheeks has been looking a bit flushed of late, as well as slightly swollen.

His nurse decides to take a couple of mouth swabs for analysis and during the battle to keep his arms down and his head still I catch glimpse of a little white peak on his bottom right hand gum. We get the sample but hold him down again to see what it is. It looked like the head of a spot or abscess to me, but it was in view for only a second if that.

His rage and strength is quite spectacular at times, and he certainly knows when it is time to fight his corner. The “spot” is swabbed for analysis and we debate what it could be. Rachel washes her hands thoroughly and pokes a finger into his mouth. He has got two nibblers already on the bottom central and they are quite sharp so one has to be vigilant.

She removes her finger and proudly announces that it is rock hard and bony, so must be another tooth coming along. This would explain (we hope) his grumpiness and lack of interest in food orally, and so the three of us give him a loud cheer, hurrah! He likes this very much and wobbles his head frantically and laughs, slapping the bed with the palm of his hand. Rachel said it was a suspected tooth all along and none of us believed here……

I am getting a taste for the “facts and figures” (or ‘factoids’ as they say on Radio 2) of his treatment as I learn one of the drugs he has everyday - Ambisome - costs £105.00 per dose and he has been having that each day for ages I think.

We celebrated with a drink from the Juice Bar up the road which sadly closes tomorrow. It has been open a year and so we have been customers for the last nine months. The nurses normally order a few for themselves and once we have eight orders we get a 10% discount. Normally the smoothies go down well and give us a small vitamin boost. I shall have to get my juicer up here and run a small outlet from the doorway.

Most of the day he has been sleeping which is good as he is still simmering an infection somewhere. His CRP was 55 yesterday and today it is 53 so no change. His temperature ranges between 37c and 37.8c regularly. It may well have something to do with the pneumonia scare we had the other week, which seemed to have been initially dealt with by one of the antibiotics they stopped. That one has been re-started and hopefully it will help him get rid of it.

Once he has lost his infection then we may be able to head out in the pram for the first time since December. We would head for Clifton Village as the air is cleaner up there.

Day 268 (Wed 28 Mar)(Day Plus 43)Thu, 03/29/2007 - 02:55 — endc011
Both of us arose at about 0500h this morning as we had had a good nights sleep and he wanted to play. In the gloom I can see him ferreting about for things. At that hour and if I am quiet he will ignore me and entertain himself happily. If I sniff, or cough, his head will turn and he will start to get fractious wanting my attention.

By then I am up and potter about, and he will go back to sleep for a bit of a lie-in.

I have a shower and a wash and was going to get some breakfast, but never got around to it.

I started to finish of my Cash Cow today and detailed the nose which I am still not happy with. I wanted more detail on the whole thing and it looks good, but I have never really worked with acrylic paints. Watercolour, gouache, and oils are OK, but acrylic is a bit heavy on a very porous surface. Plus the brushes are £1.99 ones I bought and shed hairs annoyingly.

Anyway, I have nearly finished it and will photograph it when it is ready.

Rachel returned at lunchtime and Fred had a bath. A good splosh about for him and he was dusted down with talc and looked as good as new. He seemed to have enjoyed the event and nodded off again.

The ward is back open again with five beds running and I guess this will fill up over the next day or two.

I popped into town and bought some things but never got around to lunch. I had to look for some false eye lashes for the Cash Cow and nervously asked in Boots. I obviously mumbled as I had to repeat myself, going red in the process and was directed to “Beauty”. I suspected that she suspected…….

I head back to the house and go via Somerfield for some bargains, but do not find any. I get my things and head back.

The house now has wireless broadband which is really good. There are a few people here that use the laptop and wireless and the hospital has one or two laptops for loaning to families. It does enable you to contact the outside world. As we remain barrier nursed we cannot use the Ward 34 resource room where I normally used to do the ‘blog and have no real need now provided I can connect to a stray insecure wireless, or if all else fails use my mobile phone as a modem which is OK.

When I left, Charlie was hanging up his transfusion of platelets and taking down his old bag of blood which went up at 1600h or so. I learnt that the blood transfusion he had today was his 101st unit of blood. That equates to around 13 litres of blood as he does not always take the whole bag. I was once told a unit of blood (however much that actually is in quantity…?) costs the department about £100.00.

Day 267 (Tue 27 Mar)(Day Plus 42)Wed, 03/28/2007 - 01:16 — endc011
His thirst, or hunger continues unabated, which means that once satisfied he nods off into a sleep slumber. This is great for both of us and I hope suggests he is more settled now feeding normally.

We both sleep well and I wake to the sun streaming in the window onto a sleeping Fred.

He has not been able to have any milk from about 2300h last night as his sodium and potassium have been increasing. This means that the feeds he is getting are dropped in favour of water, the “re-hydrate” him as he is a bit dry. The diuretics have ceased too, which means hi weight of 9.3kg may be an accurate one.

He seems happy with just water and some weak juice. I have tried to get him interested in a blue twin handled beaker. He will play with it but will not accept the teat. I will not force him though and I am sure he will find out what is inside if he perseveres.

His day consists mainly of sleeping and drinking which I suppose is actually quite nice for him for a change.

We have some fun with music and some singing, plus I give him a pen and paper. The pen is of no interest whatsoever, but the paper is. He spends the rest of the day searching for it when it has fallen out of the bed and he really does like to study it closely.

He is a sweatshirt and bottoms today and looks very casually attired. He is normally in his sleepsuits so today he looks like he is ready to go out. Which he is not of course.

There is a high level of infection in here at the moment, all with the same normal stuff but those that are not ailing are sent home. Of the 10 beds on the ward, the five cubicles are in use with the remainder empty.

There will be an influx tomorrow of new people as the ward is declared “clear” in the afternoon, so that was all a bit peculiar. This is the first time that we have seen the occupancy down to five. Normally it runs at a maximum of eight beds, maybe nine I recall.

Anyway, Fred seems to be happy with his water and reads his new books. He likes to stare at the pages with mirrors on them, and I can wave at him from behind which perplexes him somewhat. He will peer into the book and grin back at me, and then look over his shoulder so he must grasp the theory about reflections.

He has lost a couple of meds which go via his Hickman line again today which is promising.

I use the time to sort out some monies heading for CLIC Sargent and Ward 34. I cannot remember what the amount to date is as it has been in dribs and drabs. I shall have to work it out but it a good sum.

Tonight I shall have fish and chips I think. Tomorrow I will be at the house as Rachel will be back by then, and I shall cook something from scratch. Not sure what yet.

Rachel visited Tavistock today which is not far from home. He went into Creber’s which is a rather nice old delicatessen where she stocked up on Gentleman’s Relish and more unusually Poachers Relish. The latter was one I bought recently but the seal was broken when I opened it. She also stocked up on Dorset Knobs and some other marvellous biscuits for the mini Tuck Shop we keep in the hospital. Just for own use really.

Day 266 (Mon 26 Mar)(Day Plus 41)Tue, 03/27/2007 - 01:55 — endc011
Last night was the best night sleep Fred had had for quite a while and I managed to keep him dozing until 0400h when he was hungry. Another nap afterwards and he ad some feed at 0600h and more dozing followed.

The fist half of the day involved us both sleeping, once Rachel and June had gone. He was off his line for an hour or so, but he did not settle much whilst on the floor. Back in bed he fell asleep so I did same.

Today the weather is fairly bright and not as cold as I thought it would be. I went into town twice and left Fred to his own devices.

I speak with Michelle, who explains the possible plan over the next few weeks. What she tells me surprises me no end, and I have to realise this is only an estimate and knowing Fred there will be some setbacks along the way. However, we need to sort out Fred’s feeding issues as at the moment he is partly dependant on the TPN, although hopefully the last few days have seen an improvement in his eating habits. We have to make him keep it down though and that is the next problem. He has also a grumbling infection somewhere, as his CRP has been below 10 for quite a while although now is going up again.

Once he is off antibiotic treatment and they feel he is stabilised, then he could be able to stay up at the house with us, and visit the hospital via “Day Beds.” This could be as soon as in two weeks time, given the right circumstances.

We then went onto what happens after that, as we are having difficulty in knowing how much longer we need to be here for. Again, anything can happen in the meantime but Michelle thought that he may need to spend around two weeks visiting Day Beds.

She inferred that after that Fred could return with us to home, and he visit Bristol three times a week, presumably going home each time with us. This suggests a month before he is likely to be in a position to head home but I suspect it will be longer than that in any event. That is all up in the air at the moment and I doubt whether we will achieve such a target in a short space of time, ‘though it does give us a glimmer of hope to squint for.

I am not sure what specialist experience Exeter or Plymouth hospitals have but hopefully at some stage they will be able to become involved in the “shared care” package which was discussed with us some months ago.

Again, I shall only be happy when we are actually there as Fred is very very early from a bone marrow transplant and we have such a long way to go. No jumping for joy at the moment as my superstitious side has increased tenfold and we do not want to tempt any fate.

Today saw Fred receive a jiffy bag all the way from Milton Keynes and he helped me open it up. Another very kind gesture and he wobbled his head in appreciation, sporting a milky tongue for all to see at the time.

He has started limbering up to do his “thank you” letters for his birthday, and is planning to set aside some time each day to deal with correspondence.

He seems very alert today and rather cheery in the afternoon. He was looking at me laughing when the en suite toilet door creaked shut, suddenly startling him. His face was a picture as he watched it close by itself and then he looked back at me quite surprised at what had just happened.

Day 265 (Sun 25 Mar)(Day Plus 40)Mon, 03/26/2007 - 03:48 — endc011
Nobody told me that the clocks went forward this morning and so I was confused to say the least. I missed the Archers unfortunately.

Once I had all my bits together I popped over to my mum and dads and then headed back to Bristol.

Fred had some Codeine during the night which seemed to settle him and so both had a reasonable nights sleep by all accounts.

When I get in Fred is active but a bit grumbly. June and Rachel head back to the house and Fred falls fast asleep for a couple of hours allowing me to do so too.

The evenings are obviously lighter now and I look down onto Colston Street which is deserted. There aren’t any pigeons today for some reason.

It would appear that Fred will not have a BMA tomorrow as first thought. He will have a chimerism test during his 0600h bloods. Fred was making a great din at the time Michelle was talking and so we may well have misunderstood.

Day 264 (Sat 24 Mar)(Day Plus 39)Sun, 03/25/2007 - 07:33 — endc011
Being away from Fred means the ‘blog is a bit light of information and today is no exception.

He has been his normal self today and has been occasionally yucky but was percussing loudly when I rang

Rachel’s mum, her dad and Gaye visited and all enjoyed his company as usual, with him kipping and being active for the duration.

No other news today really. I visited Claire for tea, and was given a “Ready Steady Cook” challenge - with chicken breasts, potatoes, mushrooms, tomatoes, onions and garlic being in the bag.

With 30 minutes to cook we rustled up chicken breasts in olive oil stuffed with mature cheddar, sauté potatoes with onions and garlic in olive oil (with a stock cube or two crumbled and mixed over them), mushrooms filled with a butter and tomato mash (….), and basted baby sweet corn all seasoned accordingly.

A very pleasant evening.

I shall return to Bristol tomorrow.

Fred is due another BMA test on Monday in theatre, which will require another GA, plus another Chimerism test. Again, we shall have to worry ourselves silly for a day or two and wait for the test results, as the former looks to see whether leukaemia has returned or not.