Day 18
Tue, 07/25/2006 - 19:11
Overcast today, but warming up.

Fred has not had a good night and has been sick. He is off his feeds too, and his temperature has been climbing. There are also some marks on his feet which are an indicator of something though they do not know what. Fred is certainly not right and this causes some activity and delays his normal chemotherapy regime.

He settles down and we pop out for a bit. June and Sandra are here today. Dawn and Emily also arrive which is good. We have some lunch and come back. Fred is not in his room, but is in the play room with Sam the Play Therapist, or "play girl" as I call her. Fred is lying on a mat, watching Mr Men on TV. He seems happy and Sam has given him a cuddle. Fred has also smiled at her which is nice.

The physio is also taking a look at Fred as he has a habit of lying in one favoured position. She suggests some different positions which he seems happy with and falls asleep quickly.
Later he takes a turn for the worst as his temp. is now 39.5. The doctors are concerned at his current condition and the infection is taking hold. Fred heart beat wavers around 170 but goes up to over 190 regularly. He is also having circulation problems, with his arms and legs being cold. This is another thing we can do without.

Day 17
Mon, 07/24/2006 - 19:03
Once again a scorcher as we walk down to the hospital. Today we get swipe cards to get into the ward which is much more convenient.

Fred has a good night but is nil by mouth so is very hungry and grumpier by the hour. He is sucking clumsily on his dummy as he has forgotten how to use it, as well as forgetton how to use a bottle. The Speech Therapist is due to visit him one of these days once he is settled to see what they can do.

His WBC is now around 0.33 and will continue to drop slowly. He does not have any nuetrophylles which means he has no immunity. His bum is worse then ever now despite our efforts.

FRED SMILES FOR THE FIRST TIME IN A FEW WEEKS!

Sadly this is short lived as his slot has come up in theatre and he will be having his Hickman line put in. Rachel goes with him down to the anaesthetic room. While he is in there we go into town for some lunch.

We get a call from the nurse to say he is back and has done well. Unfortunately only one line was taken out from his leg but the Hickman is in. This means the other line will be removed manually on the ward without anaesthetic. When we arrive he is in a pushchair all swaddled up and crying loudly.

He nods off for a while and seems settled.

We head home earlier tonight as he needs his kip.

Day 16
Sun, 07/23/2006 - 18:51
It rained overnight so it was much cooler in the morning.

The Herald Express has started to arrive - as arranged by Wayne and Claire - and we read the antics of Torbay. One of the doctors here was at Torbay for a few years and had been reading all about the parking attendants and the palm trees. We correct her on the latter.
There is some broken skin on his bum but we continue to apply various creams. He is weeing well and is off pain relief for the moment. He gets a quick wash too.

There is talk that he will have his Hickman Line put in the next day or two. This will be a permanent port for taking out and putting in fluids. It is inserted in theatre through the neck and down to the heart. It is then looped and tunnelled under the skin where it appears as a tube on his right hand chest. This will mean the other two lines to each leg will go, thus reducing infection sites.

I sign another set of consent forms. We are building up a folder of these miserable documents. They expalin the procedure and the reasons why. They also cover all the likely side effects which with any complex medical procedure can be rather frightening.

We manage to clip his nails today for the first time in three weeks.

Fred is OK in himself and seems to be holding his own. Again he looks absolutely worn out and a bit sad today.

Day 15
Sat, 07/22/2006 - 18:47
Weather is getting cooler now I hope.

Fred is quite grumpy today. They will be weaning him off his diuretics today by 50% today and he should be off them totally tomorrow. His nappy rash has become really serious now and we apply various creams and potions. This will become a risk of infection soon.

Fred actually starts to catch up on his sleep which is good for him and us. He keeps quiet for most of the day and we head home earlier than normal.

We have got back into the habit of cooking our own food now in the evenings which is nice.

Cannot keep eating pasties or sandwhiches and the cost is too much.

Day 14
Fri, 07/21/2006 - 18:39
Today is my brothers birthday so I give him a ring. Nothing much happening in Paignton.
We go in to find out that Fred had another seizure after we had gone but all seemed settled now. There are a number of reasons for the seizures, including too many electrolytes, sludge in the brain, reaction to drugs. They contact Great Ormond Street Hospital with some of his previous results and again they suggest some further tests.

He will have his CT scane later. However, he is felt to be well enough at the moment to go up to Ward 34 Oncology. He should have gone last week but he was too unwell with his complications.
He has not slept for over 24 hours now being distressed. His bum is getting really sore now and this is causing him some trouble.

He has his CT scan. The next bit of news throws us once again. There are a couple of small abnormal shadows on his brain which suggest some time in the past a minor stroke or similar. This could have been a long time ago, or recently given the sludgey nature of his blood. It could also be like a clot. However, he is not displaying any tell-tale signs yet but they will look at this later on in more detail.

He gets on to Ward 34 where the nuerologist looks at his scans and what actually happened. It may be that these were not proper fits, but something else and he keeps an open mind but does not seem too concerned at moment.

Day 13
Thu, 07/20/2006 - 18:34
Fred is a lot more alert when we come in and Fred has had another big poo. This means things are moving again down below.

June, Colin and Gaye travel up in the heat and thats a nice change for us all. Again we march over to the Commercial Rooms in Corn Street for some lunch. Its usually not crowded, non smoking and air conditioned in there, and the food is cheap. Real ale is £1.00 a pint at the moment.

Later in the day he is checked over by the cardiologist with an "echo" and this is all fine. His heart is normal as some of the drugs can enlarge the heart. Seconds after he has gone, Fred seems to have a couple of brief seizures which is distressing to say the least. The doctors have a look and all seems OK. They later suggest it could be due to a reaction to drugs or to his balance of chemistry. Either way he will have a CT scan tomorrow to check his brain. This is another thing to worry about.....

Day 12
Thu, 07/20/2006 - 01:56
Very hot in the morning as we walk down. See several of the doctors all trooping in.
Fred seems more alert now. Swelling has gone down and he has had his first poo in two weeks! Nice and clean now though.

Amanda and Heather appeared with gifts followed by Wayne and Claire again. We had some flowers from the office plus a lovely card signed by loads of people. The messages meant alot to me and Rachel. There was also an octopus that was musical which was appreciated too. We had other gifts given to us, plus a few of my noodles from my drawer at work. It was nice to have a crowd for Fred. We go off for lunch at Wetherspoons. On our return we are greeted by nurse Hayley who is proud to announce he is off the ventilator. This is a big moment really for him, as this is a source of possible infection.

Later in the day the haemofiltration is disconnected and Fred is getting ready to move to another more isolated cubicle. He still has a temperature though, but this bobs up and down.

Day 11
Wed, 07/19/2006 - 01:50
The weather is hot again.

Fred has had a good night according to Natalie. He is now a little "dry" - in negative fluid-wise - and is given some more fluids. His arms and legs are no longer as swollen as they were. His feet are still quite round though.

As everything seemed OK I caught the train home for the day to sort a number of mini crises. Did some work on the train with my PDA which is proving a real lifesaver away from home.
It was difficult walking down our road on the usual route I took Fred with his pram. On going in, the cat was not there anymore, and all Freds stuff was neatly placed in his room. His cot and moses basket sat there as we left them on the 8 July. Thats seems a long time ago. Opening the airing cupboard all of his clothes are neatly stacked, ironed for wearing.

Saw mum and dad and popped into see Claire as I usually do. Had a quick chat and dad gave me a lift to the railway station in the afternoon.

On getting back Fred had had a good day by all accounts and June and Jean had visited. He may be off the haemofilter tomorrow with any luck and could be heading for Ward 34 - Oncology.

Day 10
Tue, 07/18/2006 - 01:43
Mum and dad visit on the train and enjoy sitting looking at Fred. It is difficult for any visitor as Fred does not entertain very much. At times he looks really unhappy and sad which makes it hard for us. We are used to all of these devices attached to him, but it must be strange for visitors to see him totally different to what he looked like when they saw a couple of weeks ago.
Frances also visits in the afternoon, and she thinks Freds appearance has improved since then. She brings along a few bits and bobs for us which is nice.

His WBC is now 11.2. The haemofilter is working happily and Fred is urinating well through his catheter with a diuretic. He is basically having 200ml put in, and 260ml taken out over a period of time.

Today has been another unusual one in that nothing much seems to happening, but his stats. are going a little backwards. His daily onslaught of chemo. and medicines continue unabated, and Fred seems to be getting quieter.

Day 9
Mon, 07/17/2006 - 00:38
Frdd looks a bit better today, and his WBC is 55. I hope that it is not dropping too fast now.
The Professor is pushing for Fred to go on the haemofilter now as soon as possible. He is determined that it starts by 1300h if possible. The sense of urgency is a bit worrying but at least he gets things moving. Another problem appears in that they cannot get the right blood for him. There is a delay of 4 or 5 hours whilst they track it down. It eventually arrives.
Freds stomach is starting to swell a bit and this is causing some concern as well. He is not as responsive as before and his chemistry is all over the place. There seems to be some concern about the tumourlysis, although I thought with the low WBC this had passed. Obviously not. He is not feeding either, so they have started doing other things to keep him going.

They decide to give a drug that will paralyse him. This means literally he cannot move. Also he will not be able to breathe for himself and the ventilator will do that for him. It does mean that Fred can rest and let the machinery do it for him.

Fred has some more blood and plasma during this time plus a concoction of other drugs.
We will have to wait and see....