Day 185 (Thu 04 Jan)
Fri, 01/05/2007 - 02:49 — endc011
I got up early today and had a cold shower as the hot water seems to have failed. At least it woke me up I suppose.

I shuffled back down the hill with all my carrier bags with Fred's stuff in and found Fred awake and chirpy in his bed. He had been fed by pump overnight and this seemed to have worked in most part, but he had been sick again in the early hours.

He was also sick a bit later on a few times, which is not what we wanted to happen. He has dropped to 8.14kg today, a loss of about 400g which is quite alot. They speak with the dietitian who suggests he gets more anti-sickness and we continue with the overnight feed again, though maybe a little less.

Rachel goes into town whilst I keep an eye on Fred. He has very rosy cheeks today for some reason, and other than the sickness seems very well indeed.

Not a great deal happens today, but once rachel has gone back to the house I pop into town for a quick wander and get something to eat. He is fast asleep when I come back, with his bottom lip wibbling about in his slumber.

It chilli noodles tonight, though I bought some peri-peri sauce to liven it up a bit. I shall also finish off some of the alcohol that is in the room. Tonight Fred and I are having a night in....

Day 184 (Wed 03 Jan)
Thu, 01/04/2007 - 21:07 — endc011
I spent last night with friends an hour or so away, Shaun and Victoria. Had some good grub and visited the pub opposite which made a nice change. I think it is the first time I have been "out" other than going home.

Fred has been sick quite a few times and is not holding his feed, which is a big worry. This has been going on for some time now, and he needs to keep on gaining weight. He still gets his feeds by his NG tube but it is difficult to determine whether he wants a feed or not.

He seems to be very cheerful and entertains Rachel and June during the day.

I come back from Shaun and Victoria's, only to be diverted following an accident on the A37. Along the diversion route there is another accident where a HGV has left the road spreading the hedge all over the place.

On getting back I find Fred a bit sicky still, but happy. We are still confined to the room to some extent, and Fred is certainly not allowed out.

We discuss the feed problem with his nurse. The dietitian has reviewed Fred and he is now on 850ml+ of Infatrini milk, which has 10% more calories, so that means he can have about 10% in volume. He was on 1050ml over a 24h period. It is now at a ratio of 100ml per 1 kilo of weight.

We come up with the idea that we could try and feed Fred on the pump overnight. This would mean that it would go down his tube whilst he is asleep at a rate of say 35ml/h and he would end up having 400ml without knowing much about it. The pump is set up and will dribble it in to his stomach over the next 12 hours or so.

The weather is pretty bad and I have a few bags of washing to do. Rachel will stay again, so I catch a cab to the house. The drivers windscreen is the greasiest and dirtiest I have ever seen, and he does not use the de-mister. It is dark and raining heavily as he carefully feels his way along the road. He sagely says to be "this rain makes visibility makes non-existent..."

Once in I fire up the large Dyson machine and then dry them off in the big tumbler.
I nod off listening to the radio, curious as to whether the milk pump is working on Fred.

Day 183 (Tue 02 Jan)
Tue, 01/02/2007 - 23:33 — endc011
Another excellent sleep and Fred did same all the way through to 0700h. I was awoken much earlier by one of the nurses telling me that Fred was nil by mouth today, which came as a surprise to Fred, myself and ultimately her. Wrong person....

I nodded back and fed Fred. He is on fine form today and very very lively, which is good. he looks all pink and chubby, but we must try and get his feeds going again.

The doctors come in and have a look at him. He seems OK, but I see one of the dietitians later and we change tack. he will have a higher calory milk today, plus more creamy/cheesy foods to fatten him. Today he weighed 8.44kg which is not bad but we want him 10kg plus in the next 12 weeks or so.

Rachel and June arrive and I bring her up to date with all the latest.

Fred is pleased to see familiar faces and goes all noisy and wriggly for a bit.

We decide lunch is required and Fred sleeps himself into happiness. He is due more chemotherapy later too, and this will be Day 5 of that I think. I have not seen the results of his latest blood tests today, or indeed yesterdays.

We have our lunch in the town and I come back ready to go over to some friends house to stay overnight.

Fred is currently having chocolate spread and hi-cal milk for his lunch. He was last seen looking very very messy.

Rach will stay here tonight.

The last few days the PC has been out of action here hence no 'blogs. Back now of course.
Hopefully everyone had a good new years celebrations......

Day 182 (Mon 01 Jan 2007)
Tue, 01/02/2007 - 23:27 — endc011
I had a good nights sleep as did Fred. He did not stir until 0500h when his nappy started to overflow. I had forgotten to change his nappy at midnight in all the excitement, and he was soaked through to the bed. he had not complained by one of the nurses noticed this when she moved him up the bed.

The morning was unremarkable and I went into town to get some bits but only Big Issue sellers and pigeons were there. All other shops closed so I came back.

Fred has sicked on most of his suits, due to the chemotherapy or the mixture of other things he is having. He does not look poorly but he is not retaining much food at the moment. He has only had half of his necessary amount which is of concern.

When he is sick, he is in some discomfort for a while. He gets anti-sickness drugs but they do not always help him.

He continues to bob along.

Tea tonight is provided and this is good. Makes a change.

Again, it is Fred and I and not much happens today.

Day 181 (Sun 31 Dec)
Tue, 01/02/2007 - 23:19 — endc011
I head back and meet with Rachel in the foyer. Weather is not too bad and it was a clear run up.
She heads off and i settle in with Fred. He is a little sick now and then, and we are being "barrier nursed" again as they think he might have an infection. Not quite the same restrictions as before, but still some.

I have some beer in the room so this will be tapped tonight I think. I will watch television and head off to bed early than normal.

I treat myself to a kebab and few tins of lager. Not the most exciting New Years Eve but is still one with Fred. When I went out there was not anyone about and it was heavy rain and wind. The greek restaurant where I buy my kebab from was full, and I wanted to sit down and have a meal, though Fred would suspect something.

At 2359h I was safely tucked into bed with a tin of lager and a full belly, watching BBC cover London. Lights out and curtains drawn I was ready to nod off. Through the door the curtains rustled and the three nurses came in. As I was the only one with the TV on at that time they wanted to see Big Ben strike, which we did. Afterwards they toddled off back on to the ward whilst I finished my can.

Happy New Year everyone.

Day 180 (Sat 30 Dec)
Sun, 12/31/2006 - 08:13 — endc011
I was listening with on ear open in the early hours when the World Service announced that Saddam Hussein had been hung. I opened both ears for a bit and nodded off only to wake a bit later to the howling winds again.

I peered put into the gloom and saw the fence panels still standing but at an angle greater than yesterday.

I awoke earlier than normal and had a hot bath and then headed over to get a paper. I have a little list of things to do today and want to try and get them done before heading back. I see in the Herald Express little Freddie is mentioned again in relation to a New Years "Disco-a-thon" at EJs Wine Bar in Torquay. Money is being raised by the pub for the Anthony Nolan Trust after them reading about Fred and the need for bone marrow donors. I was pleased to read that and had to go in and get a couple of other copies for the archives.

Breakfast at mum and dads and then I went into town with my brother. It was raining again and I managed to get over to Torquay. The streets are still crowded with those fevered to spend more money.

I try and fix the fence by propping it up but I am not sure whether this will work. It is heavy heavy rain and I am decked out in my outdoor work gear trying to sort it. I do my best and head back in to the house to potter around.

I end up back at Wayne and Claire's this evening, and meet up with Sean and Elena, and this was a good night.

Back early again as I want to try and get going tomorrow if I can, back to see Fred and let Rachel out of the hospital. I speak to her and she says he is jolly once again and she has been released from custody now.

As I type I hear the wind increasing once again.

Day 179 (Fri 29 Dec)
Sat, 12/30/2006 - 16:26 — endc011
After my sleep marathon I am restless until 0300h in the morning. It is either too hot or cold in the room, but Fred sleeps on oblivious to the world. His temperature today has been static and it has not dropped overnight, which is normally the case. I put his hat on for him, but it slips off.
In the morning I hear that his sodium levels have dropped which is unusual. However, he has missed some of his recent sodium bicarbonate meds through either vomiting them up just after having them, or possible missing them through being NBM, or just coming out of theatre.
He gets a bag that will go in IV.

Rachel comes in with a parcel of hot food. We munch this and it is good. We discuss our confinement and barrier nursing situation with the nurses and we have been free of symptoms for over 48 hours. Fred has been fine, though has been sick in the last 12 hours or so. For this reason one of the doctors decides we need to be contained for another 36 hours. This is a bitter disappointment as Fred is regularly sick anyway, and had been to theatre that day with a GA.

He always feels yucky after his op, but we have no choice.

To be confined for another 36 hours is maddening. When you have been here against your will for six months, being restricted further is immensely soul destroying. We are not aware that he an infection as of yet.

Rachel reckons it would be a good idea for me to head home until Sunday, and when I come back she will return. This seems like a good idea, so I collect my things and head west.

Fred is in a good condition and will hopefully remain so. He is due his first batch of chemotherapy tomorrow, and this will last for five days.

The weather is misty and wet on the way back and I get back in normal time.

I manage to visit Abi for a haircut and she spies some redness on my scalp. Stress she reckons, but it could the soap I use for washing my hair at the hospital shower. I keep forgetting to take down my Head and Shoulders which normally keep my bonce in tip-top condition.

I meet up with Wayne and Claire again and have a good night. I settle down to the World Service and the high winds shake our fence panels to their limits.

Day 178 (Thu 28 Dec)
Fri, 12/29/2006 - 00:20 — endc011
I stay in bed as long as I can as I am absolutely exhausted. I have not done much for six months but I manage to get some good sleep. I wake up with a back pain from sleeping too much though.

Fred has been booked another slot in theatre today and this should all go to plan. They will take a sample of bone marrow to see if the leukaemia has returned. On the day we were recalled (01 Dec) there should not have been any leukaemic cells in the marrow. At that time there was something like 60% which was a major setback and ruined his chance of a bone marrow transplant.

They explained that for the disease to come back that quickly meant it was far more aggressive than thought, and our best "first choice" had been used up. If Fred had been unwell at that point, and not deemed fit enough for further treatment, they touched on the subject of balancing Fred's quality of life with the realistic chances of success, given the recent results. In other words he would be able to come back home with us, but not receive further chemotherapy treatment.

That was obviously the worst news we could have had then. However, they did feel that Fred was well and if we were in agreement, we could carry on with a different protocol.
He had five days of chemotherapy and just before Christmas the bone marrow aspirate showed that it was clear which was good news. However, they needed to do another one (today) to see if the leukaemic cells had come back and in what number. If it was a good result he would have a further block of chemotherapy and then they would decide what to do. If the result was not good, we could look at a clinical trial, though things would be getting desperate by then.
Today Fred had his aspirate and I learnt the results later on in the evening. They had come back remarkably clear, with only about 3% leukaemic cells, which was alot less than the consultant Michelle expected. She was pleased at this and explained that he would start his chemotherapy on Saturday 30 December, rather than after the New Year as time was of the essence. After the weeks block of chemotherapy, there would be a three week wait, or less, and then all being well he would have his bone marrow transplant.

They would not wait for the marrow to recover as normal, and they would not take a "harvest" as a back up. They have other means should problems occur but I think they know his current marrow would not be of any use in future.

This was good news, but we have been down this road before so we will have to wait to see what happens. Either way, it is the best news that we could have received given the circumstances.
They will start him off tomorrow with some GSCF (see glossary) and we will have to see how it affects little Fred.

He is dropping eyelashes again due to the previous chemotherapy taking effect, but I can see little hair spikes growing again. Sadly they will drop too soon.

I spend the night in our cell pleased at the news but worrying about the pitfalls of a bone marrow transplant holds.

Thursday 28th December 2006
Thu, 12/28/2006 - 20:56 — endc011
Hello Blog Readers

I have been asked by Tim to update the blog on his behalf as he is unable to do so himself.
Unfortunately the sickness bug that Freddie was suffering with in the early hours of Christmas Day, and necessitated their return to the hospital at such an early hour has been passed on to both Tim and Rachel. They have both been asked to stay away from the hospital and Freddie for the time being to prevent re-infection.

Both are now staying at the CLIC flat to recuperate and they do not have access to a computer to update the blog.

If you are reading this blog, please leave a comment with your well wishes for them. It must be heartbreaking for them to have to be away from precious Freddie at such a special time of year, and I know they very much enjoy reading your comments, knowing that others care.

The blog will return to normal service shortly. Watch this space!

Claire.

Day 177 (Wed 27 Dec)
Thu, 12/28/2006 - 00:13 — endc011
I end up being sick during the night and am woken by Fred at 0500h. I give him his last feed and try to sleep. Unfortunately Fred has other ideas and cries and calls until about 1130h. By then I am not feeling right, and I am waiting for the call to go to theatre.

I pull Fred's pram alongside the bed and let him play with my hand whilst I try and sleep. I can still hear him crying as I nod off, but I cannot do anything to help him. He is hungry and poorly. I have checked him nappy and tried to give him a hug, but he just gets more frustrated. I amazingly fall asleep amongst all this din.

I wake up to find Fred asleep and he has pulled my hand to his mouth and I find I have wet fingers. He has obviously been sucking on them but I guess they taste of Spirigel by now.
I am informed that Fred's name has dropped off the list and he can now be fed.....

I ask one of the nurses to do the deed and they reckon I should head back to the house, which I do.

I get in and Rachel is there looking poorly too. I manage to get some sleep.

Rachel decides to go back down later on and finds Fred alot perkier. She too is restricted to the room to some extent but is not told that she cannot flit in and out.