Day 155 (Sat 09 Dec)
Sun, 12/10/2006 - 02:01 — endc011
I was in custody with Fred last night and all was well for most of it. He did wake again in the early hours and was sick a couple of times, though nothing monumental. He seemed happier when it was out of his tummy and was still smiling whilst we cleared up around him.

He became active at about 0500h onwards and this was rather wearying but at least he seemed happy. He was certainly more animated than twelve hours ago and this was nice to see.

His temperature drops quite low at times and Heidi rustled up a little woolly hat from one of the adjoining wards. A bit tight but it did the job and Fred soon got back to a sensible temperature.

It was the office Christmas thrash last night and I was kept informed during its progress, and I guess everyone had a good night there. I listened to the radio quietly whilst Fred fidgetted.

Today he seems more happier and relaxed and has been awake most of the day. He is still having antibiotics and chemotherapy and he is weeing constantly. He also gets anti-inflammatory drugs for his tum and also his bladder, and so this hopefully keeps him happy.
Nothing much happened today other than read the papers and watch Fred snuffling about under the sheets and towels.

Rach is with his tonight and I will now head back up to the house to have something to eat and some kip.

Day 154 (Fri 08 Dec)
Sat, 12/09/2006 - 05:01 — endc011
Fred had a grumbly night and that meant Rachel had a disrupted night too. He tends to mumble and moan, with increasing volume, usually when you have just collapsed back on to the bed. He is obviously unhappy and unwell as he usually does not cry unless for a proper reason.
I have a good nights sleep and break a couple of glasses in the morning due to the shelf falling off the wall. A bit of sweeping and it was all done.

When I get in Rachel is looking shattered and Fred not much better either. Most of today he was very subdued and did not want to look around him. That was strange for him as he will usually take a peep. He just lay there quietly looking at his hands occasionally and then having a light nap.

During the day he seemed to perk up and by 1700h he was chirpy. In an hour or two he was wriggling and rolling over, grabbing his lines and tugging at tubes finding it highly amusing. His over-activity became a bit of a nuisance as he was doing all sorts whilst I tried to change him.
He is still having his urine monitored, and his chemotherapy is still on-going. He seems to be getting a bit better but we will see over the next few days how his infection carries on.

Rachel is back at the house, and I am here on my own with Fred. Tonight is our offices' Christmas night out, and I will miss that. Usually it is a very good night in Torquay with thick heads the following day. I have already been sent a photograph during the "warm up" from Hayley and Kim.....

Tonight I will be having braised beef with mashed potatoes, washed down with either some cold water or cola. The hospital staff are having their thrash too tonight which is a coincidence. At least I will be healthier for not going and probably £100.00 richer.

Day 153 (Thu 07 Dec)Fri, 12/08/2006 - 01:43 — endc011
Fred slept fairly well during the night and had his nappy changed regularly. At the moment he is having a fairly high volume of fluids, so needs to pass them out. His urine is checked regularly through the night. Luckily he dozes once disturbed. It was still dark when I stood by the bed bare foot, and wondered what I had stepped in.

It was wet and cold and when I peered at it in the gloom I could see one of the cotton wool balls must have dropped out of a nappy when it was being changed. Not on the side of the cot I change Fred, so I guess on of the nurses must have lost it in the darkness. They do have a tendency to roll away if you are not careful. It made me chuckle and I told Fred what had happened, to which he smiled too. Best wear my slippers next time?

Around 0630h Fred started to cry quite a lot and was in some discomfort. This continued for a few hours, where he would try and sleep, but he would awaken, still in pain. He was not shouting, but a loud uneasy mumbling. We checked his temperature and it had climbed to 37.5c and then a bit later it was 38.7c which is too hot.

He was given paracetamol which slowly helped him. They took his bloods and later confirmed he has an infection. This is not the time for him to have one of these as he has enough on his little plate at the moment. He gets a variety of antibiotics which will hopefully sit on it, and stop it developing. We really need him to be as strong as possible from now on.

He dozes in and out during the day and picks up a bit.

At around 1700h he becomes uncomfortable again, and cannot settle. He is with his clothes off to keep him cooler, but is still like a loaf of fresh bread out of the oven when you pick him up.

One of the good things from his recent MRI scan (last week) is that all appears to be in order and that the various shadows have gone, or at least not deemed to be important. That is a good thing for Fred, but has been over shadowed greatly by his recent relapse.

He continues to have his new chemotherapy and we will see what happens from now on.

Day 152 (Wed 06 Dec)
Thu, 12/07/2006 - 02:11 — endc011
Today I woke up and managed to watch the sun rise over Bristol city centre on a cold crisp day. I had a good nights sleep and hopefully Rachel had same last night in the hospital.

I get in and Fred had been good over night and is lying happily chewing the corner of a blanket, smiling cheerily.

To clarify one thing, Fred achieved "remission" recently at the end of the chemotherapy course which means all the leukaemic cells should have disappeared. He has in the last few days "relapsed" in that the disease has come back again, this time far sooner than expected.

Michelle the Haematology consultant comes in and sits down to explain in a little more where we are at the moment, and the options open to us. We know what to expect but hearing it still very difficult.

Fred has been exposed to numerous chemotherapy drugs by now, all in a particular pattern, and in a range of doses. This "package" is known as a protocol and has been followed as closely as possible over the last five months. It is reviewed on a regular basis and he has been on the latest one. It is supposedly the best option available given the circumstances and is nearly always the first choice.

For whatever reason, Fred has been been doing really well all the way through and I suppose achieved the expected result of remission on completion of the course, which we were all pleased about. Unfortunately for reasons we will never know the disease decided to rapidly increase in the marrow again despite being wiped out by the chemotherapy drug, and that is what was not expected. Because of its sudden, defiant return it demonstrates the aggressiveness and strength of Fred's particular leukaemia and how difficult is probably always was to treat.
With all of the first choice options now used up, we need to look at a way to get him back into remission where the leukaemia has gone once again, and hopefully for him to be able to have a bone marrow transplant. There is not any point of proceeding with a marrow transplant with the knowledge that leukaemia is present. There are enough huge complications during a straight forward marrow transplant, without having to administer chemotherapy to him.
Michelle has been in contact with the co-ordinator for the infant A.L.L. protocol (Interfant 2006) as well as the co-ordinator for the Relapse protocol, both professors in their field plus others who are the main people in such matters. They have come up with the best (only?) solution in that he will have a further block of chemotherapy comprising a drug he has already had (in a much stronger dose) and another he has not been exposed to. That has commenced in the last 45 minutes (1745h) and will continue for a few days. There will then be some tests to see how the leukaemia is reacting. If it is decreasing they will continue, but if it is increasing then the treatment is not taking effect.

We will have to see, but if it does not work then Fred is in serious trouble. There is another possible treatment after that, which is only at this stage a possibility and we have not really discussed it. It involves a drug which is part of a clinical trial which has been tested in limited cases and we might be able to use this, but we do not know.

Therefore we hope that Fred will respond to the treatment as he has done and hope the counts will indicate some success. A current tell-tale is that his white blood cell count (WBC) which we used to refer to in the first month has started to climb again, suggesting the leukaemia is spilling out from the marrow into the blood stream like it did before he came here.

At least Fred is fairly fit and strong at the moment which has meant he has been offered this chance. If he were sickly then there would not be much point is subjecting him to the chemotherapy treatment.

We have to rely on the doctors wisdom here, and place all of our trust in them.

Day 151 (Tue 05 Dec)
Wed, 12/06/2006 - 02:34 — endc011
Today we received the news we had dreaded hearing.

The purpose of the chemotherapy over the last five months has been to eradicate the leukaemic cells to hopefully zero, and as an extra insurance give Fred a bone marrow transplant which would give him a head start on recovery. The transplant process is risky enough, but was a hope for us all.

Unfortunately the marrow they took on Friday, when tested, showed a significant amount of leukaemia cells which should not have been there. All his other tests of the marrow had come back clear and there was not any expectation on our part that it would be present. I judge by the staffs response it was not theirs either.

This means that at the moment there is no chance of the bone marrow transplant going ahead, until the leukaemia has gone once again. This is easier said than done and has its own complications. The way it has come demonstrates the type of cancer it is in this instance.
The trouble with leukaemia is that once exposed to certain drugs the second time they are used they can have little or no effect.

It has not been finalised yet, but as Fred is in good health himself at the moment, they reckon it is worth pursuing a course of chemotherapy to try and rescue the situation. This may or may not work. Hopefully it will pull Fred back to a point where a bone marrow transplant would be possible.

If it does not work, and the chemotherapy does not have the desired effect then it is all very serious indeed.

Fred today is totally normal, though we are not, and is chuckling and feeding on cheesy vegetables happily.

We would have stayed until tomorrow morning in Devon, but came up yesterday evening and had a meeting with the doctors who explained things to us.

He has been put on some fluids and some other drugs in preparation as to what the exact plan is. They have been speaking with Great Ormond Street and other hospital co-ordinators of this thing, as well as looking at the few recent similar cases and what treatment those patients received.

Rachel and I did not really sleep last night, and both of us kipped in the room with Fred. Both of us are naturally very weary at the moment.

Tonight Rachel will stay with Fred in the hospital and I will head back to CLIC House. We are no longer in our old room, and we are in a much bigger one on the top floor. It is much nicer but we have lost our little "flat" and it would have been nice to be back in there. However, the current room is lovely and about the size of a very large hotel room.

We will know more tomorrow I think and when we can think a little clearer. We have spent most of the time in hospital today though popped out for a bit to get some fresh air, and me some socks.

Day 150 (Mon 04 Dec)
Tue, 12/05/2006 - 06:20 — endc011
Today we received a telephone call from the hospital regarding the results of some tests he had a few days ago. In view of that we were asked to return to Bristol this afternoon, and Fred was admitted back onto Ward 34.

We shall be having a meeting with Fred's consultant tomorrow morning where we will know more.

Day 149 (Sun 03 Dec)
Mon, 12/04/2006 - 07:00 — endc011
The weather last night was atrocious and with the rain on the windows Fred was awoken a couple of times. At around 0300h to 0400h Fred was unsettled and mumbled loudly before drifting off to sleep. He was not unhappy, but unsettled, but meant that each time our heads hit the pillow, he would call out again for attention. If you ignored him for a few minutes his protestations would grow louder.

His temperature drops to a 35c and below at night so the headgear comes on, plus another blanket and soon he is back to 36c +.

In the morning he wakes earlier than normal, though both of us are shattered. We lie until 0930h when Rachel gets up to do various things. I hang on until 1030h listening the The Archers before I have to get up.

Breakfast comprises some boiled eggs and hot buttered toast and tea, which is most welcome. Plus some OJ.

Fred takes a nap at this time before coming down for his breakfast. Or brunch really. Today it is baby rice and he whacks a load in happily wshed down with warmed milk.

We were going to go into town for a wander, but driving through it is quiet so we scoot over to Torquay, and park up on Daddyhole Plain. This is a large flat headland where you can view the whole Bay. Due to the weather there are nine ships sheltering from te weather today. When I was a child the most I saw moored in the Bay was about 30 - 36, all varying between little coasters, naval vessels up to supertankers. At night it looked like a new town all lit up.

We headed over to mum and dads for some lunch and Fred fed again. He spent most of the day either on someones lap or on his Eeaww (?) play mat. In the past he has fallen asleep but today he entertained mum and dad with his antics. He is becoming more alert in the last day or two away from hospital, and is aware of all sorts going on around him. he is now reaching and grabbing at things much more than normal.

We head back and Fred has a warm bath, where we remove his little plasters from his bone marrow harvest and IT the other day. He normally likes a bath but today is wriggling and is not settled. Once out, with his hair all washed and fluffed he loves the hot towels around him on the bathroom floor, where he has been nappy changed and dried all the time before he was ill.
Friends Wayne, Claire and Adam and Tim come around tonight for a feed, and a few beers. Fred had retired by then, but was still worthy of a bed visit - fast asleep all talcum dusted, and chewing on an imaginary dummy whilst in deep asleep.

The dishwasher is rattling away as I type and the television on in the front room. Rachel has gone to bed, and I will too soon.

It is nice to be away from the hospital for a while though it does not feel like I have been away. I wonder whether anyone has been given Fred's room at the hospital by now?

I suspect whoever might be in there will find a stray black sock somewhere amongst the fold down bed, as I am deficient of one or two recently. All pants accounted for though thankfully.

Day 148 (Sat 02 Dec)
Sun, 12/03/2006 - 06:59 — endc011
Today was a mixed bag really.
I woke normal time and finished off the packing from last evening, collecting all of our bits and pieces together. Rachel had done the majority the night before, leaving the last few bits of my stuff to pack. I rang Rachel early and Fred had been good overnight without any unexpected surprises. Apparently he woke at around 0300h for a mumble and moan, and then went to sleep again.

As I walked onto the ward, one of the doctors Hannah, asked if I was "ready for the off...?" and as I did not know, I hoped we were. She said that "Fred was ready" and she was ready which was a good sign. Fred was in his cot chuckling away though Rachel was not there. She returned a few minutes later after having returned some of Fred's hospital toys back to the play room.

Hannah checked little Fred over and he was given the all-clear to head home, once we had been given all his up-to-date meds. A few bags of bottles, and paperwork, plus a box of syringes and a few gallon or two of milk. All the other bits arrived in time and we changed his Hickman dressing and had a look at the dressing at the bottom of his back where the harvest took place yesterday. That looked all clear, and no bruises (yet.)

I went back to the flat to pack the car up and headed back to the hospital foyer to collect Rachel and the infant, where they were waiting. We had borrowed a porter's trolley to transport our things from the ward and loaded them into the car.

It was a sad time clearing his room (cubicle 5) today. He has been in there since the last week of July. Many other patients regularly come and go from their beds to other places on the ward, but Fred has defiantly remained in-situ all along which seemed a record. I took down all his photos and cards from his pin board and put the cot back into its original position. We changed the bed position so he could see things a bit better on about the second day of being on Ward 34.
Today, Ken, Rachel and Charlie were working, and they said farewell to Fred as he left their custody. Fred has made lots and lots of friends on this ward and he was sad to go, as were we. Today he seemed a lot more excitable than previously, and was rather vocal at times and bounced his legs around. I do not know whether he detected something good was up, but he certainly gave that impression which was cheering to us all.

We joined the M5 South at J19 in brilliant sunshine (similar in fact to the weather conditions we came up in on the July 8) and had a problem free journey home. James (a tiny blogger) presented him on Thursday with a round toy that giggles when jiggled. Sadly the off button does not seem to work, and so the 110 mile was blighted by a muffled giggle all the way every time we went over the slightest bump. It went on incessantly and was remotely amusing for the first few miles. Once packed it was well hidden for the journey.

Back home it took a while to unpack and sort things back to normal. Firstly, Fred had a big cuddle on our bed, and as the house was cold he was like a little hot water bottle. His own cot had been temporarily filled with his toys and belongings and these were gradually given a home to make space for him.

I headed over to the butchers to buy some excellent local pies - one lamb and one beef - for later consumption.

When I got back the house was all back in order and Fred was ready to roll. We headed over to my mum and dads, via the off license where Lyn has been raising money for CLIC with the cash pot. Unfortunately she was away for a day or two, but we saw the Bone Marrow Donor Session appeal posters in the window, inspired by Fred.

At mum and dads, Fred was in fine form and has today learnt how to pull at the Mr Cobwebs (another James gift) dangly toy that vibrates when pulled. In the car he constantly pulled at it causing him much glee.

Fred enjoyed his stay and was again animated saying all sorts of things whilst keeping all under observation. The best place was on the floor, on his blanket, as he was too strong for my dad, trying to wriggle out of his grasp to look at everyone else.

We then visited Sainsburys and bumped into a friend Lorraine and had a chat about Fred progress. On the way out we passed another poster with Fred, Rachel and I advertising the Bone Marrow Session in Torquay.

We had a quiet night tonight watching television and doing very little. He nearly finished a pot of strawberry fromage frais before being topped up with his milk before bed.

A while ago he went to his cot where he played with his toys for 30 minutes or so and then fell asleep in his gro-bag listening and watching his musical light show.

A long day that I thought might be scuppered by bad luck yesterday. Hopefully, Fred will behave himself and he can visit a few friends in the next day or two. Ward 34 contacted Torbay Hospital once again before our departure to advise them he was in their area, and provided us with all our bits of paper should we need to visit them.

Whilst typing this, Fred has woken for a second to shout and has gone back to sleep again.

Day 147 (Fri 01 Dec)
Sat, 12/02/2006 - 00:11 — endc011
Poor little Fred. The last 18 hours have not been the best for him for a while now.

He went off to sleep well late PM and seemed to be settled nicely, though in the early hours of morning (0200h ish) he woke with a start, and seemed to be in a lot of abdominal pain. He always used to suffer a bit from colic and wind, and he was drawing his legs up to his chest and arching his back. It was obviously very uncomfortable for him, though he did drift off for short periods of time.

The pain seemed to come in spasms, and each time seemed to get closer together and then fade away. He was given some meds that seemed to work but soon the pains returned.

He did vomit a few times, and this was a dark colour which was very worrying and not the "normal" milk colour he usually provides us with. We were thankful that this was in hospital and not back at home or the flat, without the assistance of the nursing staff. One of the doctors was bleeped and arrived a short time later.

They took a sample of the stuff and confirmed it was "old blood" and did not seem overly concerned. However, they gave Fred some anti-inflammatory drugs and some anti-sickness which seemed to work a treat. Once he had ejected this stuff from his tum he seemed a lot more settled and fell asleep quickly. I stayed awake until about 0330h and drifted off.

The nurses will come in during the night and they hooked up a bile bag to his NG tube. I suppose this is like a little chimney that stomach juices can travel up and out of. When checked in the light of the morning it looked clear of any blood to me, and the others I think.

Fred was really lively and perky this morning, though had not yet realised he was being starved as NBM from 0230h.

By mid-morning the 0830h slot had come and gone and he wanted his breakfast. Sadly the milk kitchen was not serving Fred this morning and so he got hungrier and hungrier, and with that more annoyed.

I signed the consent forms for the bone marrow harvest and his IT treatment. The anaesthetist came in and did the normal checks, and went away happy. He was finally wheeled down to theatre at around 1200h I think, and disappeared out of my view with Rachel and the nurse.
We came back up and waited. the doctor doing the procedure reckoned the harvest was a 15 minute job, if all went well. Plus there would be the IT matter afterwards.

After a lot of waiting around we went to collect Fred from theatre. He was very sore and upset. The 15 minute procedure had taken an hour longer than expected and the harvest was more difficult than planned. they could only manage 50% of what they wanted and he would not give any more. I am not sure what this means practically but Michelle explained that sometime babies can yield a lot of vital cells in the marrow which can make up for the lack of volume.
Fred had 25ml of milk and nodded off slowly, minding his own business very quietly. It is likely the procedures will make him very sore and achey and he will have a belting headache at some stage.

The theatre staff were also requested to change the dressing on his Hickman line whilst he was under GA. Ideally a large clear dressing would be placed over the line entry site so that you can monitor whether the wound becomes infected. Also a big dressing allows the tube coming out to be looped under the dressing a couple of times and makes it more difficult for Fred to pull out.
Once again, they sent him back with a titchy dressing and the tube prone to be easily tugged out of place, which was annoying. When Rachel and I change the dressing it is easy to do. They also did not lock the clamps in place on the two lumen (tubes) that are part of the Hickman line. On the ends of these tubes are the bungs, or ports, where syringes administer the drugs or take bloods. They won't leak without the clamps in place, but it allows the blood to flow back to the ends of the tubes. All a bit annoying as it is basic stuff really and is even included in the things for parents to watch out for when looking after a child away from hospital. Enough of my moan though.

Fred at the moment seems to be sorting himself very slowly today. I hope the problems do not come back again tonight.

We might be able to get back for a few days if all goes to plan, though I would say the likelihood has diminished in the last fews hours slightly. We shall see.

If we do go we shall take all our stuff from Ward 34 as we will effectively be discharged. Strange as it may seem, we will miss his room and all the staff on this Ward as we are getting to know them better by now. All of them are really good and Fred being a tiddler is popular. It is certainly for the good of Fred that the same staff can look after him over an extended period of time as they get to know when he is feeling OK and when he is off colour.

Anyway, I had better head back to see what Fred is up to. Hopefully a restful nights sleep and no bad episodes again.