Day 127 (Sat 11 Nov)
Sat, 11/11/2006 - 22:52 — endc011
Last night was a peaceful one and we all awoke a bit later than we should have.
We need to pop in to the hospital this morning where they will take his bloods. As his counts are dropping there is a risk that his platelet level will be below 10. If that is the case he will need a transfusion today.

We have a quick chat with Jo his doc and then head out into town for some shopping. It is much colder today and there is a breeze. Fred is wrapped in his cosy-toe and gloves and sleeps on and off during the jaunt. Rachel is sorting some shopping so I wander around outside as the shops are getting more crowded, not only with people but more displays which we cannot fit through with the pram.

We get back and his platelets are at 20 which is good. We can head up the road now and so that will be better than one of us staying with Fred.

Two of the nurses are making a list of who you would like to take on a desert island. I managed three before we had to leave. Margaret Thatcher, Ronnie Corbett and Melinda Messenger....

Tonight we are having a mutton stew. Got all the bits and can clear out some of the vegetables in the fridge. Also making some dumplings as i have been deprived of these for some months.
Hopefully Fred will enjoy looking at a dumpling.

Day 126 (Fri 10 Nov)
Sat, 11/11/2006 - 00:10 — endc011
We had Fred with us last night and he behaved impeccably. He slept solidly through the night, but awoke earlier than normal.

We headed down to the hospital after breakfast and he needed his bloods taken. They did this and we were free to go.

Went and had some lunch and then did some shopping. He was very pensive in his little cart and watched everyone going by.

Today he is in his yellow and black striped tank top, with matching hat which June knitted him. He looks like a little bee. Sort of.

We come back and hear the bloods were fine and we can go back to the flat. His counts are falling now which is expected but hopefully they should increase in the next week.
He is due another MRI on Monday morning, and so I will take him down to that. They always said he would need another one sometime into his treatment.

I am not sure what is planned for him after that. We will be having a meeting to learn a bit more about the bone marrow process. The staff tend to tell you about things when you start to need to know, rather than all in one go. We know as much as we can about chemotherapy at the moment, and so learning about a new topic such as bone marrow transplants will be a new one to us.

We keep meaning to go and have a look around the Bone Marrow Transplant ward on the floor above. Fred has met some of the nurses from there in any case, but I understand that it is much much different up there.

Hopefully Fred will not have a temperature tonight as it is nice to have him watching the television with us in the evening before he goes off to bed.

Day 125 (Thu 09 Nov)
Fri, 11/10/2006 - 01:47 — endc011
Fred is doing well at the moment and has not any chemotherapy for a bit.
The doctors have agreed that he can pop out overnight whilst his blood count is on the up. However, with his last lot of chemo, they should drop again soon.

I get back mid afternoon and find Fred in bed,looking very pleased with himself. he has a new toy - a beanie bear, or Dalmatian actually - that has been named "Dotty" and matches his moo suit. There was a Dalmatian in the hospital today called Henrietta that visits regularly. Fred stayed in the safety of his cot though.

My mum and dad got Fred a cloth book to look at. Recently his fascination has been paper towels, which are OK but no match for a colourful book. As I type he is by me turning the pages and chewing the corners. He seems happy with it. He is reading labels now, the ones on his toys.

We will be walking up to the flat shortly as Rachel has gone down to the station with her mum.
Hopefully we will have a quiet night with him, and that his temperature will not rise.

Day 124 (Wed 08 Nov)
Thu, 11/09/2006 - 07:53 — endc011
I hear Fred had yet another restful night as did Rachel. He would have had his chemotherapy last night over three hours, and some more at 0900h this morning.

He was his normal self today, all chuckly and jolly. When I rang Rachel he was trying to grab and hold on to his feet and knees and trying to roll.

That was until he had his intra-muscular Asparaginase chemo injection in the thigh today. He did not like that one bit and shouted the hospital down when it happened and got very upset indeed. Luckily mum was on hand and comforted him. Being a brave little lad he sucked on his dummy solidly afterwards for a few minutes and then fell asleep.

Today I heard that my employer, Torbay Council, had liaised with the Anthony Nolan Trust about a staff and public "bone marrow donor session" at Torquay Town Hall. They will be holding the session on the 13th December 2006 at Torquay Town Hall all day and I will give further details again. Rachel and I were pleased to hear that 23 of my colleagues had put themselves forward to be screened and put on the register, all within a few hours of the "All Staff" email being sent to Council employees. Fred is mightily impressed at this level of commitment.

By agreeing to donate bone marrow at some time in the future you will give someone a chance that they will not have had if you had not stepped forward. The chances of being called are quite slim I think, but you never know. You cannot donate just for a particular person and have to agree that it your bone marrow, if required, can be used by anyone, anywhere. There is further information about bone marrow donation on the links I have created on the Home Page of this 'blog - i.e. The National Blood Service and the Anthony Nolan Trust.

As a result of the publicity for the public sessions I was contacted by our local newspaper who will try and raise public awareness about the sessions.

You cannot manufacture healthy bone marrow in a laboratory, so the only source is fellow humans, hence the need for volunteers.

His other day to day business is as normal and he was seen by the doctors who are pleased with his general well being.

Fred's weight is still 7.9kg and we need to get him over the 8kg threshold really. He is feeding well and tonight his evening meal was to be some pureed broccoli. Hopefully he will like this feast.

Hopefully Fred might be able to stay with us over the next night or two if he does not have any complications. However this latest bit of chemotherapy may result in him suffering the ulcers once again.

Fingers crossed for our little boy please.

Day 123 (Tue 07 Nov)
Wed, 11/08/2006 - 07:41 — endc011
Another good night with Fred. After his meds and chemotherapy hookup, he slept well.
In the early hours he made a few noises, so I scooped him up and cuddled him on the chair. He was very sleepy but managed to stay awake for a hug and a smile. After a bit he got a bit bored and wanted his bed again. Placed back he was fast asleep within seconds, all wrapped in his gro-bag.

I had a good nap again until 0630h when he stirred and was hungry. I changed his bum and fed him. His knack of sleep-drinking has not changed so cleared nearly two bottles in almost complete slumber.

Once back in he did not stir until 0830h, when he became very animated.

I sorted him and met Rachel at 1015h and then headed back to Paignton. It was foggy on the M5 but was clear of traffic. I spoke to my brother who was also on the M5 and saw him travelling in the opposite direction near Taunton.

Fred has had another good day and is currently having another flush of chemotherapy. He will have another one tomorrow. Then the problem of mouth ulcers will return though he will have some drugs to combat this hopefully.

Nothing much to report tonight, other than Rachel and Fred are in hospital. Fred will have his chemo this evening and then be prepared for the next lot twelve hours later. He has four in total in this batch. Tomorrow will be the rather painful intra-muscular Asparaginase chemotherapy drug. I think it feels like a "dead leg" on the thigh, but there is no anaesthetic avaliable.

Day 122 (Mon 06 Nov)
Tue, 11/07/2006 - 05:40 — endc011
Fred rose early for a feed and then went back to his slumber. Another quiet night for both of us, and once I had sorted various things I nodded off at 0700h until 0845H.

By that time the ward outside is buzzing with activity and people peer in, not wanting to disturb you, as they assume you are getting ready. Sadly, I am still trying to catch 40 winks, so I give up. They cannot see through the curtain in front of the door, but I can see large, looming silhouettes there which is off-putting.

Fred by now is picking up speed, so I have a quick wash with one ear open on him on the other side of the door.

Once the doors are open it is "all in" as the doc and nursing staff take over for the day. A student doc looks at him today too. I carry on tidying up and hide a dirty plate from last nights food, which I leave in the shower room, on Fred's pram.

My mum and dad are coming today and so Fred gets a wipe and a wash. He is due chemotherapy later this evening and so that is being organised by the staff.
Mum and dad arrive and as it is cold and misty, we stay in. Fred's infection marker - CRP - is now about 20 so it has come down, indicating the infection is subsiding. His temperature has stayed around the 37c mark which is normal for him.

Mum, Dad and I have lunch in the hospital canteen. Fred behaves in our absence and is very active with kicking his legs and trying to twist over, or grab things above him in the bed. He sits in his large rubber ring for a while and enjoys some time sitting on my lap, looking about. His neck muscles are still a bit feeble but he is starting to hold his head.

We are trying each day to make him hold his head weight by himself, although 5 minutes can be enough for him at a time. He tells us when it is uncomfortable.

Mum and Dad go, and I pop into town with them. When I get back Fred has been a pest by shouting and crying until someone comes in to see him. When they leave, he starts again. They decide to plop him in his pram, and sit him on the ward where he watches everyone going by. He is happy then. With the pram coming out of the shower room the dirty plate is exposed to everyone, and is a plate I had forgotten about. It is hastily washed in the kitchen.

Fred spends the rest of the day full of beans and is very very active and noisy. At around 1930h his batteries suddenly fail and he is fast asleep. I manage to do his eye drops so easily and change his nappy whilst he sleeps. He even gets put into his gro-bag without complaint.

It is a bit more difficult tonight getting him in the bag because he is plumbed up to the chemotherapy pump for the next few hours. I manage to get him sorted though.

As I am typing (2150h) Fred should be asleep still, and has finished his first bit chemo. He is having the lines flushed at the moment, although they will re-start chemo. tomorrow morning about 0645h, when I will be probably be just dozing.

Otherwise hopefully Fred will have a quiet night. Rachel is back tomorrow with her mum and I should head back down.

Day 121 (Sun 05 Nov)
Mon, 11/06/2006 - 18:18 — endc011
Rachel stayed with Fred overnight and he behaved well.
When I came in the morning we hoped to be able to head out into town for a bit and hopefully let him stay with us overnight. This would all depend on how his infection is being dealt with.
Not much to do really in the morning other than give him his meds, eye drops, feeds, then change him, before starting again.

The docs come in and say that Fred can go out today as he appears to be getting a bit better. We can also head back up to the flat tonight, but have to keep a close eye on his temp. If it goes above 37.5c then he should come back. They have stopped his antibiotics but he may need some more.

That device changes before we go out. His CRP (infection marker) is still at around a high 55, so he should stay in hospital tonight.

We head into town and get some stuff, and have some breakfast. The farmers market is on, and we were going to buy some sausages, but they had sold out. Next time.
When we get back we pop back to the flat. It is decided that Rachel might as well go back tonight as I will be in the hospital and it is supposed to be foggy on Monday morning.
She heads back in the late afternoon and I settle down with Fred. He is very good but stays awake later than normal.

He sleeps well during the night, as do I from 0400h onwards.

Day 120 (Sat 04 Nov)
Sun, 11/05/2006 - 00:19 — endc011
Fred settled for a while but continued to be restless and shout alot. He would quieten for a bit and then he would break out in to a roar. Most of the time he would be pleased with himself, but then he would start to get a bit upset and not settle.

This went on for a bit but he gradually settled down. Normally his batteries will run out at around 1900h or 2000h after a bit of resistance.

One of the other parents ideas has taken off, and an order for eight or nine curries has been placed and were due just before 2100h. I strolled into the dimmed ward and found a small group gathering, with a makeshift buffet table laden with Bombay mix, crackers and wine. It was rather dark in there with the only light coming from a battery powered pumpkin lantern on the table. There was another family in the cubicles who was not participating, so we moved into the play room.

This has lots of chairs and tables but they are only a foot of the ground.

By now Fred is getting more and more upset and tired so in between mouthfuls I keep an eye on Fred. All the other parents are doing the same. Fred at the time was having a blood transfusion so it would not have been practical to have him in with us.

The food was very good, and we tucked in naans, pickles and poppadoms, and slurped a little wine.

As Fred was getting angrier I headed back to his room at around 2130h. He continued to be restless and getting more and more upset. I fed him but he was still uncomfortable.
One of the nurses came in at around 2300h and said she would look after him on the nurses station as he clearly was getting hyperactive with his new blood. He disappeared out of view so I put my head down. At 0030h I heard him wail and went out to see what was up. He had nodded off for a little while, but had now woken up again, even angrier. I scooped him up and put him back in his bed.

After changing him I went down to the sluice room to leave his nappy when I passed the play room. There were still a couple of parents in there with empty wine bottles around them chatting away happily. There was not much wine that night between us all anyway.
Once Fred was given some Calpol he went to sleep instantly funnily enough. He got his eye drops and slept until about 0600h. I managed to sleep OK, but was a bit tired when I got up.
Fred has some more visitors today - Colin and Gaye, plus June who stayed another night rather than head home on the bus with a migraine.

They arrive and I head back to the flat for a quick kip. When they head into town with Rachel for lunch I decide to stay behind and read the paper and just watch the television.
Freds temperature is a little higher than normal at the moment but hanging around the 37.5c mark. Anything over 38c is of concern but he obviously has an infection.

Whilst he is happy and alert, when his blood results come back there is a way of seeing if he has an infection as it might not be obvious. Amongst all the other date is the CRP marker (or c-reactive protein I think) which if it less than 10 is OK. Fred's had climbed to 12 yesterday which was a slight indication, but today is 144. At least we know he an infection brewing and they are giving him anti-biotics to start to deal with it.

I assume that once it starts to come down then the infection is being dealt with.

Rachel will stay tonight with Fred. Hopefully he will behave himself a bit more tonight, or at least be less hyper. I would have thought he would be quite tired today as well.

Fred has had a few other visitors today in the form of some of the other parents and children. The toddlers on the ward tend to gravitate toward Fred so he is happy to meet and greet in his bed. One of the nurses from Intensive Care who cared for Fred is regularly here and pops in to see Fred, which she did this afternoon, and marvelled at his really chubby thighs and chops.
Rachel was walking in another part of the hospital when she bumped into one of the student nurses from Intensive Care - Faye. She looked after Fred with a colleague she was shadowing for a number of shifts. We have not seen her for a few months, but she remembered Rachel as well as Fred's name. She asked on his progress, and said she would try and visit sometime tomorrow. She visited once before about a fortnight after Fred had been transferred to Ward 34.

It is cold and bright and I am doing this before heading back up the hill with Rachel.

Day 119 (Fri 03 Nov)
Sat, 11/04/2006 - 04:09 — endc011
Fred stayed in at the hospital and was not feeling too good overnight. I think he was restless as Rachel did not sleep well in the hospital.

He was also sick this morning after he had some Calpol, but has slowly improved during the day. His temperature bobs up and down and there is not any real indication as to the source of the infection.

I travel back and get here around 1600h. Fred is looking rosy-cheeked and very smiley. He is kicking his legs out alot and grabbing his feet. He has also started scratching his nails on the bed clothes, which is the noise I kept hearing the other night.

June is due to go back on the coach this afternoon, but does not feel to good either. It makes sense for her to stay another night with Rachel, as I will stay here with Fred. They set off in the gloom with the pram full of bags and belongings. Easier than carrying them up the hill.
I potter around and feed Fred, giving him his eye drops as well. One of the families in the main ward is from Newton Abbot, and has come up with the idea of a curry night here, as it Friday. Seems like a good idea to me and I have not planned what to eat. She 'phones it through and it should be here sometime soon.

I am not sure how many of us are eating curries but no doubt it will stink the ward out. I also here there are some bottles of wine floating about. Sounds like an old school disco as I guess its an alcohol free zone on the wards.

Fred has been quietly watching the television in the dark and I must get him off to sleep.
He is having a blood transfusion at the moment, so will be even pinker in the morning. Hopefully he will cool down again.

The heating has come back on in the last day or two as it was getting a bit silly at night. I just overheard one of the nurses saying that they had rung Estates again about the ward being cold, to which the response was "well it is cold outside." It is actually a bit warm in his room now.
Sounds like my office?

Hopefully he will have a good night without too many incidents. He does need his sleep to help him grow, and if he is feeling poorly it is better he is asleep than awake.

Update of... (Day 118 (Thu 02 Nov)
Fri, 11/03/2006 - 07:42 — endc011
Shortly after I posted the 'blog this evening I had a 'phone call from Rachels mum to say that Fred had been taken into hospital as he became unwell, and that his temperature rose rapidly over 39c. He had become upset and fractious.

Once he was down there they gave him some paracetamol and some other drugs and his temperature started to fall. When Jamie gave an antibiotic via his Hickman line, he was a bit sick too, which apparently is an indication that he might have in infection in the line.

His temperature could also indicate teething but there is not any indication that teeth are coming through. The other evening I saw him biting rapidly, rather than chewing, on his dummy which might be another indication teeth are coming.

They have given him some high strength antibiotics within the last few minutes so hopefully that will address any infection. The difficulty is knowing what the infection relates, which in turn dictates the type of antibiotic.

Hannah the doctor was not too concerned at this as it is expected sometimes and Fred has very been lucky so far. The hope is that he will sort himself out so that it does not compromise the next session of chemotherapy on Monday, as it is important to stick to the protocol as closely as possible.

Rachel has just said (2345h) that his temperature has now gone from over 39c down to 37.9c so hopefully the trend will continue. He is now asleep covered with a light cotton blanket.

This is one of the things that keeps you on your toes, as these complications can multiply rapidly into things more serious. Such an occurance was another reason why we were hesitant last weekend about coming back, but then he was in a better condition blood-wise as he had the neutrofils to combat infection. The last set of chemotherapy would have deliberatly killed those off in the last day or two, and they will continue to diminish whilst he is having this batch of chemotherapy.

Rachel was getting ready to bed down in the hospital whilst he was asleep so i do not know much more.

I hope they will both have a quiet night and that the antibiotics will do their job overnight.