Day 28
Sat, 08/05/2006 - 01:10
When we came in this morning Fred was having a cuddle and some milk from the bottle and seemed quite happy. Rachel took over from Sarah the nurse. He only decided to have a bit, but the bottle seemed to comfort him.

The Renal Team came along again to have a closer look and wandered off again. Did not have a chance to hear what they had to say but will chase them up on Monday. The usual ward round happened and they were fairly happy with Fred. Joanna gave him a gold star yesterday as he been a good boy.

We kept an eye on his bum which is still very painful looking. There are about six different areas of broken skin, that are more visible now. The general redness is reducing though, which hopefully lead to him being more comfortable.

They have reduced his morphine again a little bit, but he can have extra if necessary. This has normally been when we move him about significantly, or change his nappy.

He gets a bath again, which goes quite well. He also has a visit downstairs for a chest x ray as his NG tube in the nose was pulled out a bit by him yesterday. The pictures show it in the right position, so it gets taped down again much to Freds anger. He soon nods off once we have changed his nappy and applied the cool gel dressing.

He is due a transfusion of blood this evening as well as some more potassium. His chemistry is slowly balancing out but there is always something to worry about. He is going for his MRI scan to the brain on Monday and we will be able to see in more detail if there are any problems in that area. Hopefully not, but they have a habit of appearing just when you do not want any more difficulties for him. Haven't a clue what that would entail. The kidney scare is enough for us at the moment.

We get some instruction on how to maintain his Hickman Line (the line into his chest). These are prone to infection or movement, and we are given a pack to deal with minor and major accidents to it. Nothing much in it really other than some clamps and tubes and dressings.
We also have a chat about when Fred can have treatment nearer to home. No date is known yet but they run through it all the same. It will be some considerable time though because of his age. The sooner we know something the better so that we can try and plan a few things. We will have been here for one month tomorrow. It has certainly flown by and I feel we have been here for months. It makes coming home for a few hours nice, though I have always wanted to head back here to make sure Freds OK and not on his own. There would always be one of us here in any case.

He has his feed by tube later in the afternoon and is not interested in the bottle.
The staff are limbering up for the weekend here again. It seems that Fridays must be the Juice Run as I hear orders being placed by phone for various cocktails, and they arrive 30 minutes later by courier. I have seen this behaviour before.

I tinkered with the background settings today of this Blog and thought it looked cheerful.

Probably will cahnge it again in a few days.

In general seems to be fairly settled but unhappy. Hopefully he will have a quiet weekend without incident.

Day 27
Fri, 08/04/2006 - 01:44 — endc011
Fred was asleep when we went in, though stirred shortly afterwards.

He had another big poo that looks more normal now and he was more relaxed after that. They came in and reduced the amount of morphine he was having, and he was asleep the majority of the time.

The Renal Team visited him again and explained to us the damage that had been caused to his kidneys, though they suspected the reason for the excess acid in his blood was something quite simple to deal with. Hopefully it will be that, and any damage to the kidneys are recoverable.

There was some suggestion that this may have happened in the chaotic first few days when he was in ICU. We will have to see whats going to happen there, but again they did suggest it was too bad.

We had our blood taken today for tissue matching, though I do not know how long that all takes to get a result. It has been explained that we are not likely to be able to give bone marrow to Fred because we will only be half-matches.

He was a bit gripey this afternoon and has been sick a few times. His blood pressure has gone up a little bit, though he seems to have calmed down a bit now. He sounded a bit husky today. Don't know whether the reduced morphiine means he has more pain or not.

His bum is looking better to me, though it is still sore looking. Hopefully he will have a quiet few days to clear his backside.

Day 26
Thu, 08/03/2006 - 00:59 — endc011
Woke this morning at the normal time - 0630h. Forgotten my shaver and deodorant so had to pop over to Sainsburys for a quick shop.

Amanda kindly offered to drive me back to Bristol this morning so I had time to visit mum and dad briefly. After a white knuckle ride (she kindly switched my airbag on) from Paignton we got here just before lunch. It took 45m to get from Paignton to Newton Abbot and 1 hour to get from Newton Abbot to Bristol........

Fred was asleep when we got here and had a relatively peaceful morning. He had been a bit noisy earlier but his bum is still hurting. They think the broken areas of skin are slightly worse and this seems to be confirmed by Fred.

He is went down to x ray to have his kidneys scanned for damage as he has excess acid in his blood at the moment. This is raising his blood pressure which makes him breathe harder. The results come back that there are not any clots but it appears there is some damage. This should repair itself and likely occurred when he was in his initial treatment in ICU. Some of the chemotherapy drugs have side effects which cause damage to kidneys. As I think kidneys are regenerative (?) I hope this is a small problem. The doc does not seem to concerned and they were looking for other things which were not there.

We give him a bath which cause him some temporary upset and tend to his sorely bum. The nurse puts a cool gel covered gauze dressing on the areas that are broken, and it looks like a burns dressing. That keeps him a bit more cheerful.

He is also on morphine at the moment which can be altered on demand if he is particularly annoyed. On the few occasions it is used he seems to calm down quickly and allows him to kip.
He is resting at the moment and we will be heading back up the hill shortly.

Thanks for the messages guys. They are good to read, and give me something to look forward to. Good to see Tony is clambering aboard Rhythmic Beat. Hope you fixed all those mechanical and electrical faults this year. Make sure K does not use the toilet on board either, and bottoms up when you have the vin diesel.

Day 25
Wed, 08/02/2006 - 08:23 — endc011
I popped in to see Fred early this morning, just before I caught the 0808h train from Bristol to Paignton. I found him lying on his front, fast asleep with his bum exposed to the air. The nurse Hayley had rigged up an air hose to blow over his bum to help it heal. He seemed happy and did not wake up despite me talking to him. Thankfully he was connected to a monitor to check his breathing.

She said that Fred had had a really good night and was tolerating his feeds well. Whilst he had been a little sick, he seemed relaxed. With that in mind I headed off toward rain clouds.

We are now starting our fourth week here and it seems like a lot longer. We have spent a grand total of £8.00 on parking charges. I spent that amount after a few hours parked at Torbay when little Fred was born! Fred is more “himself” at the moment, but that has a habit of rapidly changing overnight, which makes things a lot more difficult. The worst bit is going in first thing in the morning to see how he has been.

At five months old he has been through more than I ever have, and had more injections than I ever hope to have. So far nearly a fifth of his life has been stuck in hospitals.
I think back on what we have all had to experience and to date, during his “remission induction” of three weeks and three days, he has:

Been subjected to numerous tests and procedures which are continuing on a daily basis

Almost started chemotherapy on a regular basis, which results in his body chemistry going totally out of sync. with everything else for the first two weeks plus. The side effects of chemotherapy sometimes do not make pleasant reading either

Been to theatre three times under general anaesthetic to have his lumbar punctures, chemo. administered into his spinal fluid and a sample of bone marrow taken

Severe oedema which gave him an additional weight of around 2kg

The rapid drop of white blood cells, resulting in tumourlysis, for a few days. This is treated with a variety of drugs and was to be expected. The haemofiltration filter helped clear some of the stuff plus the excess fluid

A couple of mild seizures, which may have been the result of a blood clot, or mini stroke. He will have some further tests in time

A serious infection when he was quite vulnerable anyway, which resolved itself after a few days

X rays to check for pneumonia and bowel problems which again seem to have cleared now

Numerous other scares about marks, blotches and bumps that seem to be insignificant

Generally being very poorly, and when he has improved, the doctors telling you how poorly he actually been

Looking back on that I wondered what progress we have actually made. Long term, we do not know. Short term and Fred has improved remarkably from when he was first admitted and seems to have stabilised himself. He looks more like our little son and his habits are creeping back. Smiles are the best treats though. He seems to have tolerated all of the procedures without any noticeable adverse reactions. We have also accepted all of these procedures as “normal” and whilst it is worrying, we accept it is all for the best.

And Fred still manages to squeeze out a little grin every now and then when he feels it is warranted, but it does get tiring just watching him be unhappy. It is good that we can give him a cuddle and he does like that most of the time. Also he has been having the occasional bath, which he enjoys greatly. He always has, with the exception of his first few when I suspect the water was actually too cold. He has been riding his imaginary bicycle in the bath too which was nice to see.

Whilst the hospital strollers are a bit battered, he is not too proud to happily sit in one and drops off immediately once he is on the move.

The nurses and doctors we have experienced are so dedicated in what they do, and this can take a lot of worry away as it is reassuring. Fred (or The Fredster as Sister calls him) also does not seem to have any complaints about the nurses regularly manhandling him. He is wary when the rubber gloves can be heard being put on though.

I rang Rachel this afternoon to see what he has been doing today and heard him in the background protesting loudly about something. They have stopped giving him his “maintenance fluid” which I assume are a sign he is stabilising chemically. I would hope then that he can have a bit of peace internally, other than the chemotherapy which comes in various phases.

I am off out this evening to meet up with friends, which will make a change.

The next bit of text will be after a couple of pints so may be factually incorrect, offensive or poorly typed.

I spoke to Rachel again and he seems to have another good day.

I had a few pints at the pub, plus some grub, with Hayley R and Wayne. Tomorrow I get a lift back to Bristol with Amanda, which is gratefully received. Hopefully his bum will have improved a bit so that he can settle more.

Day 24
Tue, 08/01/2006 - 02:10 — endc011
Rachel stayed overnight, in Freds room. There is only one fold down bed so I headed off home. Fred was sick before I headed back so it meant that Raceh was even more worried about him choking in the night. he was failry fractious by all accounts and R had about an hours kip she reckoned.

I spoke to her as she was heading along the embankment to join the M5 on her way home to her mum and dads.

I got here a short while afterwards and Fred had been disruptive. He did not want a bottle and basically cried all day, stopping for power naps in his buggy. His bum is getting better in that the redness is reducing, but he has a few areas of broken skin that when they come into contact with poo or wee, must sting like crazy. He howls at the top of his voice, and when he is doing this constatntly whilst you hold him, its very distressing. Then suddenly he will quieten down and have a long nap. Then, as his nappy refills, he shouts again. We are changing him as best we can, and he gets regular creams but there is not much else to do.

He takes about 70mls happily which is good. No sickness yet and the longer its inside the better.

At times he is normal Fred. Eyes wobbling about, occasional swallowing, then pinching his face up. nearly had a smile I think.

As I say, most of the day he is unsettled, but I take him to the play room and chat to one of the other mums. her son has been here for four years plus, but they live a few miles away. Fred is still the youngest in here, but he is favourite with the nurses. When he is on form he can really charm them. Shame about his backside though.

He has his deluge of drugs through the day. He is alot less puffier than before although he has a slight temperature that bobs up and down. I hope it is not another infection. That's all we need.
I stay until about 1900h and Fred goes back to his bed and I give his tummy a massage. Its reducing in size and his hands are alot better now. His feet are a bit like satsumas, but they are improving.

It tipping down with rain at the moment and I do not have a coat yet. I have carrier bags and I have access to unlimited numbers of plastic aprons, but no coat. Will have to get one tomorrow if I come home.

Spoke to Paul in the office today. he had been speaking with the Anthony Nolan Trust about doing a "corporate" blood letting exercise at the Council. Rachel and I thought it was a brilliant idea, and if it does not directly assist Fred, then someone else will definately benefit. "It Could Be You" as they say......

Anyway, I hope that things work out for Freds bone marrow. We do not know much at moment about the topic, but I guess thats around the corner soonish.

Well, the rain is still out there and I will trudge up the hill, past the friendly chip shop man. Must remember to get the key from the room otherwise I will have to climb in the window.

Day 23
Mon, 07/31/2006 - 03:16 — endc011
Freds day today has been similar to yesterdays in that he has been very settled and quite quiet. He has slept alot too, so hopefully has gained from his rest.
When we came in first thing today, he been sick earlier. This sometimes happens when he has been feeding, and with all of the drugs he is on at the moment it is no wonder he feels so grotty. His legs are still pretty puffy though when we weigh him he has lost around 0.5kg (or 0.5 litre) of fluid since the last time. he should be heading back to his pre-hospital weight of about 7.3kg. He weighed 15lb 2oz when he was 15 weeks and 2 days old. He seems to hold the water and gain weight rapidly, but loses it a little more slowly.

The room is alot cooler now so he seems less clammy. We change his nappy regularly because of his weeing. No poo yet but this will hopefully come in time.
We pop out to the coffee shop in the BRI, and get the paper. Nothing much happening in the world except the usual troubles.

On the way back I talk to a friend who I have not spoken with for quite a while, and that is Kenzie. She was not aware of Freds illness and we have a long chat about things. It is nice to catch up some old news, and I give her Freds Blog address. Seems to be a useful medium, although I am not sure what other uses it has.

We head home slightly earlier than normal and have something to eat. Rachel is going to stay with Fred tonight in the bed in the room. If he wakes in the night (which is normal) he will wake her too. At least he can get a longer cuddle than he may get off the nurses..... He gets his food three hourly at the moment through this tube, so there will be some activity around R's bed. Tomorrow she is heading home for an overnight stay, returning on Wednesday. She will be staying up at her ma and pa's place. I will head down on Tuesday for a bit. There are so many things I need to do that I have been putting off for. Need to cancel some direct debits, pay some bills, do some correspondence. I do not know whether I will have time for all of the things I have planned to do, but have made a list so that I can strike them off. Need a haircut too. Mum and dad have all our post at the moment, so I can collect that.

I also need a haircut.

I have been trying to add some pictures to this Blog thing but it does not let me. I will try it as home if I have time. Must cancel the broadband as well I suppose.
On our return Freds nappy is changed again. He settles and I head off up the hill back to CLIC House. The evenings are drawing in now, with the summer nearly being over.

Day 22
Sun, 07/30/2006 - 01:11 — endc011
Weather has turned today and rain is forecast. I had a text from Dawn who said that it was raining in Hayle at the time.

Fred has a good night, and was fairly calm when we arrived. He was just livening up and Charly was just about to give him some feed. She said he had been good, which is a postive sign for the day.

As it is the weekend, the two doctors discuss Fred and whats going to happen with him over the weekend. He is getting heavy with fluid again and is about 1 kg more than yesterday. This causes problems with swelling of the legs and hands, which is mainly uncomfortable. He is given more Frusemide - a diuretic - (or froozy juice) to make him wee more. He is going to get some more calcium and protein, as well some more blood as well which should perk him up a bit.
Fred does not do a great deal today, and has mainly been relaxed and sleeping alot. He is catching up on his lost kip.

One of Rachels friends, Kay, visits which is really nice. We sit with Fred and chat about all sorts of things. Fred is well behaved at the moment and does not fly off into a tantrum. He has also had 60ml of liquid by bottle and seems to be retaining that happily.
He has yet another large runny poo which is a good sign that stuff is moving through. He has not really had much in the last week or two, so things will slow down. Better out than in, I say. We clean up his bum which is not as sore now. Cannot see any broken skin but he seems more comfortable "down below." That was the prime suspect for his illness earlier on in the week.
We see Kay off late afternoon, which coincides with Freds next feed. We discuss how much to give him, and we will try 50mls tonight. Given gently he should be able to cope with it. Otherwise its will be "NG" - naso-gastric tube which is probably a lot less satisfying for him, as well as us.

Fred is really heavy to hold at the moment and it is difficult to bounce him into a comfortable position. Not just because of the tubes and lines, but he is a bit weaker now and we do not want to wobble his little head unecessarily. He has been giving people his big blue eyes treatment today. Hopefully the puffiness won't spread beack to his face, as it causes his little peepers to close up.

We are off to Asda in a while to get some provisions. It had just started to rain when we popped out. I realise that I do not have a coat or anything here at the moment.

We need also to renew our car park permit. Normally without a permit it is £15.00 plus a day, we get a permit from the hospital for £2.00 a week which is good for us.

Anyway, we hope Fred will have a quiet weekend. We may even be able to scoot home next week, as there as so many little jobs that need to be done that have been put to one side.

Day 21
Sat, 07/29/2006 - 00:56 — endc011
Yesterday evening, I left before Rachel. When she got back she explained that Fred had done a particularly large poo, which was a sign that things were starting to move again. Most pleasing.
Today (Friday) we come in and find Fred has been grumpy for a while and unsettled. He is 'nil by mouth' again and has been since 0730h, so is also very hungry. He is due to go to theatre again today for another set of procedures. Two of them have been done before, and a third is being done for the first time.

Under general anaesthetic, he has a lumbar puncture to test the spinal and cerebral fluid for leukaemia cells. His last one was more or less clear, but they then inject a chemotherapy drug back in to do its job, just in case. The third procedure is a bone marrow aspirate, which involves a needle drawing off some marrow from the hip bone, for testing.
We are due to tested soon to see if we match. It is unlikely as we will probably be half-matches, but they test anyway regardless.

I end up in A and E myself (in the Bristol Royal Infirmary) next door this morning too. Not quite on the same scale as young Fred, but its still painful to me. I have a blister on my foot which has burst and gone a bit funny. Its embarassing going into the NHS Walk In Centre for something so trivial. Anyway, they agree it could become infected and treat it all within 15 minutes of arriving.

Freds ready to go to theatre when I come back. He is still unsettled, but promptly falls asleep as we wheel him down. Rachel takes him through with the nurse, and he is fast asleep as they put him to sleep. We get a call an hour later saying he is ready for collection.....

He is fine but even hungrier now! Well gripey. He will get a feed soon.

The doctors are generally pleased with him at the moment, except for a few mild problems. Joanna gave him a gold star yesterday as he was doing so well. Hopefully this will continue gradually.

He has a feed, though only 30mls via a tube but its better than nothing. If he tolerates that he will get more this evening.

My foot still hurts. I am complaining about being a bit sore, and Fred has not complained once about all he is having.

I have had some lovely email and messages today, which makes home seem alot closer. I am sent a message from my colleague Emma, and I see that Elizabeth Raikes (Chief Exec Torbay Council) has mentioned Freds plight in her weekly letter. It refers to other colleagues wishing to get involved in things like going on the blood and bone marrow register, as well as other practical things to help. Its really nice and cheers up Rachel as well as me no end.
Rachel and I registered as blood/marrow donors a couple of days ago. I was always nervous of it before and it did not seem relevant. I can reassure you that whatever you do, or don't do, you do not know when you will need it. Bad luck can tiptoe up on anyone, no matter who they are.
Anyway, it is Friday at the hospital, and like the Council, everything almost shuts down. There will be a few doctors around and hopefully Fred will have a good weekend.

Day 20
Fri, 07/28/2006 - 00:55 — endc011
We come in tentatively, not knowing how the night went. He had had a good night and his temp. was down to 37.7, although wavering. His heart beat was at 110bpm so this had settled too. He generally seemed to be OK, and the doctors were pleased that he seemed to have sorted himself out.

They agree that this is an opportunity to do his chemo. and other treatments that have been put off, so move rapidly with getting it sorted.

We give him a proper bath and wash his bum. He likes that and is wrapped up in a fluffy towel. He soon is off to sleep, quite relaxed. His hair is all fluffy and waves about in the breeze of the fan. He seems to be more settled now which must be good for him.

There had been a really bad smell in the Parents Kitchen, which I noticed when we first came in. It seemed to coming from the locker above ours. It got to a point where I did not really want to go into the room as it was so bad. I spoke with the administrator and she arranged for Estates to break open the locker to see what was in there. he turned up sometime later and forced the lock. There was a mouldy loaf of bread in there that was causing the smell. There was some grumbling that it was not his job to do such things, and that they should have contacted another department.

Fred continued withg his next bit of chemo. as planned although a few days behind schedule. He is still a bit puffy but he has been worse.

Rach tries to give him some milk from a bottle and he happily slurps 30ml of the stuff. Thats a first too. He has not been interested in a bottle, hence the Speech Therapist wanting to come in a re-educate him on such matter. Cannot give too much as he will sick it back up. He has not had much food for several days and his stomach might not like it. He seems content with the stuff anyway and drops off back to sleep.

I wander off to take the car up to the shops to get some food. Our accomodation is really good. We have a bedroom with wardrobe, tables and bedside cabinet. Lamp and clock radio and a window which overlooks the garden as well. Just down the hall is a nice sized shower room with power shower and wc and basin, plus hanging space. The front room is a nice size as well, with a dining table and two small settees. There is a patio door to the garden and pations with tables and chairs outside. The garden also has a barbecue area which looks well used. The TV, DVD and video are all new looking and this accomodation is just for us and another girl. She comes from the south west as well but does not stay all the time like us. She is due back this evening I think she said. This means the fridge space will become slightly less, so we tend to buy fresh food daily or every other day. There are bigger communal freezers in another part of the house which I need to investigate. Trouble is they are all full. Someone has seen fit to fill up some of the shelves with bags of ice cubes. I will grumble that some people are shopping and storing weeks or months worth of food in the freezers, which is not really the idea.
I also saw fit to complain to "my" local councillor about the bushes, branches and brambles that are over hanging the footpath on the route in. I get a response back that she has referred it to an officer. I will await contact.

Day 19
Wed, 07/26/2006 - 19:18 — endc011
We get down to the hospital a bit later than normal. We are greeted by Peter, who normally works in the bone marrow treatment ward (BMT.) Fred has not been too good last night and has been sick again. His temp. is remaining high and he is not right again. Whilst his breathing is efficient, it is a bit laboured. His stomach is quite distended now and this could be for a number of reasons. They decide to take him down for a chest and abdomen x-ray. There is a possiblity that the cause of his fever is pnuemonia, and they want to see if there are problems in his bowel and gut as things have slowed down to zero in that area. Fred looks quite uncomfortable. We get down there OK, but on the way back up the lifts have all packed up. We debate carting him up by pushchair but this is not ideal. He is happy where he is at the moment. Apparently the heat is causing the lifts to shut down if the motor room gets too hot. They cool down and come back on again.

His bum is also a problem, plus it is hot in the room despite his fan on him. All 'round, Fred is causing the doctors concern. Given his poorly condition, they are getting behind with his chemo. plans and he really needs to lose the fever in the next 24 hours. His temp. goes up and his heart rate is around 195.

The x-rays come back. Thankfully his chest is clear and it appears there is a swelling in his gut. Soemthing is stuck and it will be referred to a radiographer for a second opinioin. His view is that it might even be a hernia causing the problems.

We have had so many obstacles it seems each time there is a problem it is a major one. Fred is already really ill with his leukaemia, and it seems so unfair he is getting a further battering through all of this. Thankfully the hernia theory does not appear to be correct but I suppose there is still a possibility.

His fever continues and he really is poorly again today. He stays the same but they hope that tomorrow he will be better. If not they will re-think some of his plans, or at least have to continue with some of the treatment regardless of his current illness.

Before we go home Joanna says his kidneys have really picked up, (and not packed up) and his other results seems promising. She gives him a silver star for today......