Day 38 (Mon 14 Aug)
Tue, 08/15/2006 - 02:01 — endc011
Fred had another good night and was wide awake when I came in. Rachel had stayed the night, so he had been settled again.

The team reviewed Fred as normal and they were pleased with his progress to date. They would be reviewing all of his drugs today and will try and reduce any that are no longer deemed necessary, or at least plan for the next few days. His body chemistry is sorting itself, and his legs look less puffy. They had stopped the diuretics yesterday and he had done a good job himself in processing the fluid out.

The Renal Team explained that his kidneys seemed to be perking up and were more efficient today. He had another blood transfusion last night so today looked much pinker and the blood helped flush out fluids.

He may get some milk by mouth today, but it will only be 5mls every three hours. Not enough to satisfy his empty belly but a treat in any case. The drugs he is given orally must taste good as he loves them when they are dripped in. The crushed tablets may even taste good as they disappear too. A little while later he has a chalky mouth and dribble that is difficult to wipe off when dried.

His bum looks almost healed now and there is not any broken skin.
They have said that he can have a bit of a "rest" from some treatments over the next few days, though he will go to theatre on Thursday for his chemo intrathecally - (in the spine) - as well as a lumbar puncture and bone marrow aspirate. This is to check for the current levels of leukaemia in the spinal and brain fluid, as well as the bone marrow itself. I am told that next week he will start the next lot of "full blown chemo" whatever that is. I shall have to ask.
We did not get the results of the CT and MRI scans. I was about to ask the doctors as they appeared in the afternoon, but one of Fred's neighbours suddenly had a problem that needed all hands on deck, so it was difficult to ask. I guess if there is a problem they would have come to us. Will have to ask tomorrow.

Fred went to x ray for yet another check on his NG tube.

Otherwise Fred has had a good day again today. He much more alert as well. We had a cuddle for 30 mins or so and he spent half of it studying me, whilst I studied him and then he drifted off, only to be wakened by the doctors for a check up. Joanna was pleased with him in general and his bum in particular and gave him his third gold star. He got a bit of a cheer from the others. He had some more platelets today too which will help him flush out.

When I saw him a little while ago he was in the pram (where he has been all day) sucking on his dummy in anticipation of this long promised 5mls of milk, which won't even touch the sides.

Day 37 (Sun 13 Aug)
Sun, 08/13/2006 - 23:50 — endc011
Before we left yesterday Fred's breathing rate increased to double its normal rate, to around 85 a minute. His temperature also spiked up to 38.5c quite rapidly which was unusual as he had been settled. In the hour before he had become very quiet, and not making any noise or whimpers. He was given paracetamol which seemed to work in a few minutes and withing 30 minutes his temperature his dropped back to 36c, and his breathing slowed. As he seemed happier we left for the evening.

Fred had a good night by all accounts. Today (so far to 1700h) has been one of the best days yet for him. His temperature has gone up and down a little but the doctor was not too concerned at this, but would continue to monitor it. Also his body chemistry had leveled out and the one we wanted to reduce had done so, and this meant that they could gradually stop some of the medication today. Some of them were quite high yesterday and this was what was concerning them. However, they wanted to see how much Fred could do on his own so they would keep an eye on him.

His breathing had gone back to normal, although it will increase when he has a temperature anyway. His weight had dropped which was good and his fluid were being shifted from the right places too. Again they would continue to monitor the tests to see if they need to intervene or whether Fred can have a go himself.

Since Day One - until three weeks ago - we had been regularly looking carefully at his WBC (white blood cell count) as an indicator to his progress. This went from 948 (healthy person will have 10 - 15) down to zero because of the chemotherapy killing them off purposely. White blood cells comprise of three parts, one being neutrophils. These are the strongest "good" cells that fight infection and without any white blood cells he obviously did not have any neutrophils, so he was "neutropenic" and therefore prone to infections, which could be very serious. We have started to monitor the WBC again now because he has not had any chemo for a bit, plus they have been giving him the GCSF which stimulates healthy white blood cells to start being manufactured again. So in the last few days his WBC has gone from 0 to over 7 which is good. Of the 7, he has a neutrophil count of over 4 which again is promising. These are being made in the bone marrow. None of the staff are jumping for joy, but it is what was expected (or at least supposed to happen) to we seem to be moving in the right direction. In theory there should not be any leukaemic cells left but there usually are at this stage I think.

This means that it will help Fred against bugs and infections. They have a way of checking his level of infection, and it is currently coming down gradually which again is good news.
His WBC will drop again once his next lot of chemo starts, though I am not sure when this will be yet.

Fred's bum is looking alot better now too. Maybe with the increased neutrophils it has helped him, but the skin is not broken and it is not as red as it was. It seems to be healing now, and we are taking extra care over the preparation and cleaning of his bum. He seems happier with it and does not shout when handled in that region.

So, with all that he seems to be chirpier himself, and he deserves a little bit of rest for a bit. We almost got a smile today, but he is holding on to that for the minute. All in all a good day for Fred. However....tomorrow will be the day when they compare the CT scan of a few weeks ago with the more recent MRI scan, both of his brain following the seizures he had. They will also look at the EEG results and let us know what has happened inside his head. We have not discussed this problem at all so we have no idea what the outcome will be, and how it affects Fred. They do not think any problems would affect his treatment, but that is of little consolation. Fingers crossed we have some more good news but from experience his progress can swing from good to bad quite rapidly.

I think Rachel will head home tomorrow morning as planned for a day and return on Tuesday. I am not sure of my movements this week yet.

Day 36 (Sat 12 Aug)
Sun, 08/13/2006 - 00:22 — endc011
Fred is awake when we get in and he seems active. We discuss his progress with the doctors who are on over the weekend.

He has lost quite a bit of fluid overnight, and this is evident by his legs looking much thinner.
His body chemistry remains to be up and down during the day and there is constant debate over how much fluid to give him (all the medicines are in a fluid) and over what period of time. Some of his drugs are in the syringe drivers (the auto pumps) so can be tinkered with as to amount and time.

His NG tube still is not right and he may have to go to x ray once again to check its location. A bit of pulling an dd tugging in the afternoon apparently rights it - for today.
He is a bit grumpy in the afternoon and does not really want to sleep. He is alert and follows you with his eyes and blinks if you move too near to his face.
He lies in various positions more so now, so that fluid does not collect in one area. He also does not want pressure sores!

His bum seems to be much better now and we can wash it without him shouting the place down. We tried to have the nappy off to give him an airing but he has a leaky bum today. Plus he is on the frusemide again to make him wee, so we abandoned that.
He gets more platelets and albumen toward the end of the afternoon which should see him through to late PM.

Rachel and I went to the Ward 34 fete in Castle park, and parted with some money. The weather was good today so the numbers were up. We bought a courgette loaf which had been made by one of Fred's regular nurses - Alyson - and she had made loads of cakes. Could only manage the one, as we have another at home which June brought with her on Wednesday.
So at 1730h, Fred's progress had not been really great. I am not sure what the implications are of Fred holding on to fluids for such a time. It seems we get the fluid out OK, but it returns again a short time later, so it does not cure the problem. I understand that it is all to do with the kidneys playing up a bit, which upsets the balance of everything else.We hope that tomorrow will be better in that Fred sheds his excess overnight.

Day 35 (Fri 11 Aug)
Sat, 08/12/2006 - 01:23 — endc011
The weather is much cooler now so is better for Fred as well as us.
The doctors do their rounds today and are concerned at a number of things. Nothing new, but they have been problems that have been hanging around for quite a while, coming and going, and not really doing Fred any favours.

He is quite puffy from the waist down once again, and his legs and ankles are really chubby with fluid. They have been trying to give him diuretics in the past which has worked rapidly, but it has not solved the problem. They will discuss new ways of shifting the fluid at their ward meeting.

The Renal Team are also concerned that his kidneys are not doing what they should be doing efficiently, and this is having an effect on his body chemistry, which causes him other problems. Again this will be discussed at the meeting.

Generally Fred seems to quite content and his temperature is normal. This seems to enable to rest properly, and with his blood transfusions and platelets in the last 24 hours, he seems very pink and almost Fred-like. His circulation seems to be better again, though that might change once again.

His bum looks to be clearing up at last. We changed him a few times and the broken skin is still there, but it does not cause him the same amount of pain when changed. We continue to apply the gel dressings, as Fred settles almost immediately afterwards now. He is pooing regularly which i think is a good sign, though he has not had any food for two or three days. No wonder he is tetchy.

We asked about some of the tests, and they confirmed that the bone marrow aspirate (sample) taken two weeks ago, showed that there were not any leukaemic cells in his marrow which was expected. This does not literally mean "zero" I think, as it is very difficult to get rid of them quickly, and rogue cells tend to lurk in hidey-holes and wait a few years if necessary. However, it showed that the induction phase had done its job.

They are not going to artificially increase his neutrophils (good white cells) and they hope he should be able to do this naturally from now on. Apparently the benefits to start fighting infection become apparent fairly rapidly, so this might help his bum out a bit, and keep new bugs at bay. Once he starts the next course of chemotherapy, they will drop again, but should at least maintain a few. He will get his aspariginaise in the second cycle as previously mentioned and this will not compromise his treatment.

He also had an EEG (electroencephalogram) which records the brains electrical activity. This test is about one or two weeks late, and was requested following Freds seizures the day before he came out of Intensive Care. i do not know what the result was as it was all spikey graphs on a laptop. He had about 10 stick on probes to his bonce, and wore a net hat to keep them on. We had a difficult time getting rid of the glue out of his hair afterwards. His hair is slowly disappearing and there a little strands on the sheets or where ever he has been. We have saved some for him just in case he needs a moustache later.

The MRI and CT scans to his brain which were done previously will be reviewed on Monday, as will the EEG data.

He had another x ray today as the NG tube in his nose may still not be in the right position. Fred will be cross if it has got to be moved again. I think this is the third time in a week they have tampered with it.

Hannah the physio has been in and shown me how to bend his arms a bit. He is tending to lie still with them above his head and she feels he needs to keep them moving so he does not stiffen up, and it gives him something different to do. His neck movement is now better, and she can crank his head almost 180 degrees again. Two weeks ago his head swivel was 50% of that, so that is good.

The staff are readying themselves for the weekend and the new lot have familiarised themselves with Fred's problems. Hopefully he will have a quiet weekend. Tomorrow is Ward 34 fete in Castle Park. We will go along, as it is to raise funds for the wards baby massage service which is not funded by the NHS. Fred has had a bit of that and it seemed to settle him down and he was happy. It is also good for colic, as Fred had that when he was new born, and a spot of massage helped him bring the wind out.

So far Freds week has allowed him to rest a bit more. Tomorrow is the beginning of our sixth week here. Have a good weekend.

Day 34 (Thu 10 Aug)
Fri, 08/11/2006 - 01:10 — endc011
I caught the train up with my mum and dad and met up with Rachel and her mum. My stomach was a little full after last evenings meal at the Embassy Tavern in Paignton. Really good food and company made it a great break too.

It had been another good night for Fred, and Rach had spoken with the doctors. His bum looks a little better and they will continue with the gel dressings for the time being. He is continuing to get antibiotics for a bit but his temperature is down again now, and he was swaddled up proper when I saw him. He got a bit chilly in the night so looked happy enough amongst his blankets.

He has retained more fluid again and his ankles have puffed up again. Someone had put socks on him overnight but they ended up being a bit tight, and were difficult to get off in the morning. Bigger socks I think, or ones that are more stretchy. Some of the fluid is lurking in places where it is more difficult to escape so he is getting some human albumen, which I guess is like a protein which pushes it out of the tissue. Possibly.

His salts and other chemicals seem OK at the moment and they have stopped supplementing him with a few. He is having a clear liquid feed for the next few days, and this will slow his bowels down a bit. They have also tried to stoop a few other treatments as they feel needs a "break" from all these treatments for a day or two. With this, Fred has actually had the best sleep in a long while - at least two weeks. He had some blood again today (I don't think they did it last evening) so that will make him feel better in himself.

They are going to continue with the last two doses of aspariginaise (one of the four types of chemo) although this will be given in the next stage early on. We did not want him to miss out on this, and neither did the doctors as it is very important the protocol is followed. They are not going to give him donated white blood cells but will let him have another treatment which will help him increase the good white cells more rapidly. That should then be able to help him with infection, and rid him of the nappy rash. They are going to give him something to encourage an increase in the number of these cells which we hope will work. It is GCSF or "granulocyte colony stimulating factor" and I have no idea what it does or how quickly it all happens.
Fred is a wee bit bald on one side now, but it is thinning gradually. It was wearing away in places in any case.

In conclusion I think he looks better to me, and the doctors visits have reduced a little bit. We have not had the results of the MRI or bone marrow yet.

Mum and dad headed off in a taxi to get to Temple Meads, and we later escorted June back to the coach station. Whilst we there we saw Al Nedjari the actor. Rachel saw him first and he was waiting for the 040 National Express to London. You will all know Al from his excellent role as Samir Rachid in Coronation Street in 1994 - 1995. He played the Moroccan waiter who married Deidre. Her daughter Tracey had a kidney problem and he ended up donating his after being attacked on the tow path of the canal in Weatherfield. His untimely death was May 1995 I think. I managed to sneak a picture of him sitting in the concourse just before he boarded the coach. Deidre went on to be convicted of perverting the course of justice and fraud when she got involved with Jon Lindsay, the bogus airline pilot.

So Fred's day seems to be quite good. He can cry if he really wants to, which is a bit reassuring in a way. The nurses are all used to him being a bit unsettled during the night, so it is a novelty for them to have a compliant Fred.

Day 33 (Wed 09 Aug)
Thu, 08/10/2006 - 06:44 — endc011
I am heading home today, so I go in to see Fred at 0700h. I am told by the nurses that he has had a very good night, and has been really settled. Fred is asleep when I go in but stirs when I speak to him. He tries to cry but not much comes out other than a dry croak. He looks comfortable though and goes back to sleep after a couple of minutes of grumbling.

I catch the train home and bump into my mum outside the railway station. I also see Hal from the office who is heading for the station lavatory before a meeting, and we have a quick chat about things.

I have loads to sort today so head back to home on the bus. I do not get it all done, but may be back next week or the week after. It is very difficult to be away from home with all our day to day stuff here.

I speak to Rachel later on. Fred has had a good day as well, and seems as happy as he can be. She has spoken with the doctors and their main concern is the infection risk with his sore bum. Apparently it is worse now, which is a shame. It is a hard area to treat because of where it is (and all the bugs that live in that environment), and when he is moved about it clearly hurts him so much. We have tried many different creams and applications but it seems just to stay. I think they want to persevere with Sarahs (nurse) idea of applying the cooled gel dressings a bit more.

Because it is now a serious infection site they have decided that something needs to be done urgently. The suggestion is to get his white blood cell count back up as quickly as possible, so as to deal with infection. The antibiotics seem to working as his temperature has dropped to normal once again (36.6c). He once went up to 39c+. Our initial concern is that they will not do the last two or three doses of chemotherapy of this initial stage, so that the white cells can start to increase sooner. We were told from the outset that it was very important that he completes as much chemo as possible, but some of it was delayed because of various infections he had, which set him back from the fixed programme. I guess its a toss up between allowing the white cells to increase by not giving chemo (and therefore deal with his infected bum sooner and naturally) or to carry on with the chemo but deal with his bum on a day to day basis hoping the antibiotics can hold off any serious problems. I do not know which would be quicker or better. The doctors are to discuss with others elsewhere (who create the "protocol" of treatment) as to what will be best. We can only leave it in their hands as to the way forward.

There is a train of thought that they can give him white blood cells extracted from donated blood to help him on his way. Apparently we might not be the best candidates in this scenario for a number of reasons, so it would presumably come from the Blood Bank. We will find out more tomorrow I hope.

His kidneys seem to be shaping up OK. He had to go down for yet another x ray as his NG tube was still causing problems and it was repositioned again a bit higher up.

I visited Amanda today and saw little James who was born a few weeks after Fred, on the 6 May. He is growing rapidly and was sitting in his spongy armchair when I went around. He seemed happy and dribbly and is doing well and has changed alot since I last saw him. I also pop in to see Dawn, Emily and Charlotte and catch up on the local gossip, which was a nice break.

I went out in the evening with Wayne and Claire, plus the twins Adam and Tim, for a bite to eat. Rachel rang again to tell me the latest though there was not any new news, other than he had had a good day again. He is due to be transfused with more blood tonight which will help him along a bit.

I am back on the train tomorrow morning early, along with my mum and dad who are going to visit Fred for the day.

I have looked at the statistics for this 'blog which make interesting reading. Since I created the weblog (24 July) there have been 4041 "page views" with Day 20 being the most popular at 120 viewings. If you are interested you can subscribe to receive an email each time a new update is posted. If you leave a comment, it is interesting reading for Rachel and I, as well as Fred I hope sometime in the future. Don't forget that all can see your posting too!

We have not heard anymore about the results of his MRI scan, or his testing of bone marrow. He was due for a lumbar puncture again today but that was postponed, along with his chemo, due to him being not so good.

Day 32 (Tue 08 Aug)
Wed, 08/09/2006 - 01:33 — endc011
Rachel is away today early, heading home, but she rang me at 0800h.

Fred had another good night really, although he had a mild temperature. He had fed during ther night but was settled.

When I got in Fred was asleep and comfortable. When he awoke I thought how ill and tired he looked. His eyes did not sparkle like normal and he looked thoroughly sickly. Which he is of course. He skin looks a bit drier and wrinkly but is a better colour than before. He is starting to lose his hair now and his trademark eye lashes have started to drop out. I think thats what changes his appearance subtley, but I have not seen him for a few days.

The doctors did the rounds and they noted that Freds temperature had gone up again and his stomach was more distended. He has another infection now although again it is difficult to place where is relating to. After much stomach poking Joanna suggests he goes down to radiology for a chest and abdominal x ray. No one really explained why as they had gone before I could ask.
We head down and he gets his two "flashes" and he is well behaved. He seems to like the flat pram he is in, and ends up staying in there most of the day anyway. No point in dragging him around. He heads back up to the ward and I go for some lunch.

When I get back I give him a feed, though he only wants 15mls from the bottle. He also has more ulcers in his mouth, one quite large. His bum looks OK, but not that much better to me. The blisters are open now, and hopefully when dressed will heal.

I am told that he needs to go back down to radiology for an ultrasound of his stomach. Again, none of the doctors are around to tell me why so we head off to the 3rd floor. More worry. I end up going in with Fred and do not want to watch the screen if I can help it. I did see some of his "workings" and it looked like a lava lamp to me - all this stuff glooping around. I was shown his spine and bladder, and saw some stationary poo. I am told that there is not anything unusual there. The good thing is no blisters or ulcers to the liver or spleen, and no blockages in the guts.
Back on ward I speak to the doctors. They explain that Fred has an infection and they were wanting to check out his stomach. That looked all clear. Also the chest x rays are clear today so no infection there.

I asked about his MRI scan. The doctor explained the results of the MRA scan, (that's Angiogram) where they looked at the circulation of the brain and that was OK which was good. Did not know that there was such a thing, and nor did the nurse either.... The equipment to compare the MRI and the CT would not work, so they would look at that tomorrow.
The results of the tests to his spinal fluid (done two Fridays ago) must be OK as we have not heard anything and if there was a problem they would have needed to aletr the treatment.
So, his guts have slowed right down again, but are clear. He may be getting an infection form these bugs or his bum, or his Hickman line. They will give antibiotics this afternoon. He will not be fed his normal milk, so his guts can rest. He will get his nutrients via a clear fluid over the next few hours.

He will also get some pain relief and some more platelets this evening. As I am typing these were started 25 minutes ago.

He has not been sick recently and whilst he seems to be holding onto fluids again, he is not as bad as I feared during the day, what with all these tests.
This is whats actually tires you out. Just sitting and worrying about things really makes you want to kip at night.

I will come in early to see Freddie tomorrow.

Claire said she could not see the link to make comments on this 'Blog anymore. Nor can I. I don't know where it has gone but if anyone finds it can they let me know?

Day 31 (Mon 07 Aug)
Tue, 08/08/2006 - 03:31 — endc011
Today was dry but dull. The weather has turned a lot cooler now which is much more comfortable.

My cold hangs on, so it is another day that I cannot see little Fred. Rachel goes in as normal.
I want to register at the library so go there. Forgot I need some i. d. so that was a wasted journey.

Fred went off to theatre for a general anaesthetic at about 1030h. This was done in the BRI next door to the childrens hospital. He needed to be totally still when he went through the scanner. No one has told us when the results will be known, so we have to wonder for a few hours/days longer. Rachel said that the doctors were happy with him today.
His heart rate, temperature, blood pressure and salts were all OK. He has got some colour back now, with him having rosy cheeks yesterday. The pinkness tends to fade after a few days, when he is given blood again. I am not sure how much blood he has been given to date, but he has also had plasma and platelets too.

There are only five families in the house at the moment though we rarely see them as they are in a different part of the house. It makes the house really quiet for the time being. They are on the two floors above. The communal freezers in CLIC House have been auditted by the Manager. A load of stuff has been discarded which is either out of date, or is un-named. There is a load of stuff which is in date but the owners are not known, and these have been put in the "help yourself" tray which has yet to be made public. I have spied a few things which will make there way down to our bag.

Rachel rings to tell me that Fred is running out of nappies, so I have to trek up to Somerfield. There are emergency supplies at the hospital but parents are expected to bring their own. When I get there, the only ones are the type that I think gives him nappy rash and that he can do without. I will go to Boots tomorrow to get some of theirs from there. Rachel is travelling back to Devon tomorrow so hopefully I can go in to see Freddie. She should be back on Wednesday soemtime. We might get the results of his MRI then.

Day 30 (Sun 06 Aug)
Mon, 08/07/2006 - 04:26 — endc011
I decided to stay away again today, as I have developed a cold with a runny nose. My sore throat has more or less gone, but I still feel a bit rough. I think I should stay away tomorrow again, unless I feel 100% tomorrow.

Rachel calls me to say that Fred was unsettled last night and had been sick again. They have decided slow down the rate of feed he is getting, and spread it over three hours. I assume this is to enable him to digest it gradually. They have also given him some medicine to keep the feed down, which hopefully will work. Some days he is good with his feed, others he goes back to square one. The dieticians have tried various fomulae over the last few weeks. He has had his standard SMA Gold, Kindergen, high calory milk, as well as a thicker gloopier mix that will hopefully stay down. For some reason he tolerates it some days, and does not others. I suppose with all his treatment he is bound to feel sick sometimes. Trouble is, it is difficult to tell why.

He had a slight temperature overnight which might have been why he was sick, but that dropped during the day. The doctor was fairly happy with Fred over the last 24 hours and his blood pressure has remained satisfactory. His other body chemicals have remained stable which means less interference. The more fluids given to him, the more the balance seems to get upset. A bit like carrying a full bowl of water really.

He was well enough to have a bath today although he did not enjoy it by all accounts. Afterwards he is usually swaddled in a towel and he nods off quite quickly.

He also had some more chemotherapy today which is on schedule. His neutrophils are at zero now which is good in one way but bad in another. This hopefully means they can start climbing again, so that he can start to fight infection sometime in the future. The staff confirmed Freds MRI slot as between 0900h and 1100h tomorrow - Monday. We really hope the news is good...... His bum is getting better. The general redness has reduced and the "blisters" seem to be drying out after bursting. He got another chilled dressing today from Sarah and this makes him a lot more comfortable. She has been looking after Fred over the last few days but is now off until Thursday.

The dreaded mouth ulcers seem to be increasing as Rachel spied another on his top gum. I have not asked what treatment he can have for them, but will do when we can. Whilst Rachel was at his bedside I had to entertain myself.

There was a "slow food" market on in the town and as I have little else to do, I go to see what?s there. It is in the usual market area and is really a regular farmers market. I see some traders we have met before and have a brief chat. I also manage to get some food half price for our lunch, which was good. Some of the stuff was over priced, but it all looked good. I wandered around for a while and started to get hungry. I head home early afternoon as I am worn out now - all this walking must be doing us good. Have only driven on two occasions in the last four weeks. As I have little to do this afternoon as well I make some pasties for our dinner, as well as stilton ones, for our lunch tomorrow.

Rachel left him fast asleep on his back, lying in his favourite position. He still sings (or mumbles) to himself in his sleep, but we do not know what he is trying to say.

Day 29 (Sat 5 Aug)
Sun, 08/06/2006 - 02:49 — endc011
On the way home last night we were walking up Robin Hood Steps and I saw a driverless car starting to creep down the hill, which is quite steep. There was a man standing by the car, and I shouted to him and pointed to it. He calmly looked around, looked at me and carried on fiddling with his phone. When I got to the car, it had just caught the kerb and rolled into another car, though did not cause any damage. The man on the 'phone explained he did not know what I was on about, but thought someone was in the car. He went onto explain that he had borrowed someones spectacles and could not see very well. He was also pie-eyed which was the real reason, so I propped the back wheels with some wood and left the licensee of the adjacent pub and matey with the borrowed glasses to deal with it.

I woke up this morning with a sore throat, and felt a bit achey. Sadly this means that it would be silly for me to go and see Fred as I would probably give him an infection. He is neutropenic (no neutrophils) at the moment which means he does not have resistance to infection. Me spluttering over him will not do him any favours.

Rachel headed off to the hospital leaving me at home. She had a chat with the nurses who said I had better stay away but she could still visit. If she felt unwell, then she should go home too.
She rang mid-morning and explained that Fred had been really good through the night and this morning had taken to the bottle again. He had tried 10mls at first and then he guzzled another 40mls later on. He is topped up to 100mls via his NG tube. One of the doctors reviewed yesterdays x-rays and felt that the NG tube was not positioned correctly so adjusted it once more. Again Fred did not appreciate the help that was being given. It is hoped that in this position Fred won't want to be sick after his feed.

The Renal Team came again and spoke to Rachel. They explained that only one kidney was damaged, and this was what was causing him to "leak" (salts or acids?) and this hopefully will sort itself. They seemed really pleased with his progress to date.

Rachel also spoke with the doctors working the weekend and they thought he was much more stable. I think his background morphine has been reduced to zero, with an amount being administered when it is really needed.

She also thought that his bum looked a little better, which I hope is the case.
Most of his tubes are disconnected today (at least for the moment) which means he is easier to handle. He weighed about 6.8kg a couple of days ago. This is less than his pre-admission weight, but I suppose that is to be expected. He did weigh somewhere about 8.5kg a few days earlier although that was fluids, which have now been expelled.

Without tubes he is more mobile so I reckon he will get more cuddles from Rachel today. I hope she gives him a big squeeze from me. I expect I won't be able to visit him for a day or two really.

So after exactly one month we have seen Fred go from totally "normal" to being in intensive care. I am not sure what he would have been like without treatment but spent the next three weekes on a roller coaster of progress with him being seriously ill a lot of the time. The last week has resulted in him levelling out and being more relaxed in him self. Obviously the leukaemia is still the main short and long term worry to us. I hope that this progress in some way prepares him for a good start in some form of remission. Good progress now does not reflect in the eventual outcome, but I hope that it shows Fred has strength and fitness to be able to tolerate all the forthcoming treatments.

Our other worries now are the results of the MRI scan next week. This will be an in depth investigation into the small shadows on his earlier brain scan. The doctors will then be able to explain what implications, if any, there will be, both in the short and long term.
Another is what the damage to his kidney means whilst he is recovering and whether this will affect him in the future. I think they will carry out more tests in the next few weeks.
He has also been having short bouts of high blood pressure which he can do without, as this has adverse effects on him in other areas, particularly at the moment.

We do not know what is good progress and what is not, but Fred does not appear to have deteriorated to us, and the doctors seem to be happy with him so far. Fingers crossed.
I have done todays Blog on my PDA sitting in the front room in front of the TV, shelling some peas I bought earlier. Most families have gone home for the weekend, and I think there is only two other families in at the moment.

I had a go at Spiderman on the Play Station but could not get the hang of it.
Rachel comes back. Fred was behaving well this afternoon. He fed a bit more from the bottle. He also produced some big poo, which seems to be returning to normal colour and volume....
She and Sarah the nurse were having a look into Freds mouth, and noticed he had an ulcer. This was to be expected as the treatment is likely to produce a number of these. Usually food by mouth is stopped as it becomes too painful. Poor little Fred. One ulcer can make you feel rotten, let alone a few more. The nurse also thought that a tooth was coming through, although this sounds a bit early? Can do without teething problem methinks.

I will see how I am tomorrow morning, but will probably stay away.