Day 164 Mon 18 Dec)
Tue, 12/19/2006 - 03:00 — endc011
I have quite a few jobs to do this morning that I have been unable to do and get them done.
I wash Rachel's car as it is covered in bird poo and pop around to mum and dads quickly before I head back. I deliver the last of my cards at Wayne and Claire's and pop into see Dawn who has some money for me which they raised at their wedding anniversary. The money shall go to CLIC.

I see my neighbours who have bought little gifts for Fred which is nice and I head back to Bristol. On the way I meet up with Frances at Taunton and I manage to buy Fred another "animal print" sleepsuit. This time it is a zebra as the moo suits are no longer stocked. I collect another gift on the way and arrive in Bristol a bit later than planned.

Rachel takes the car and heads home for a day or so.

Fred and I keep each other entertained in the cubicle and he nods off whilst i do same. It is cold on the ward today so I get into bed fully clothed and doze.

At the time of typing I can hear carol singers in the corridor which is nice. Fred is fast asleep and I hope they do not wake him.

Fred will have a blood transfusion shortly and this will perk him up a bit. he has another infection rumbling in the background and his marks seem to have settled down. Hopefully no more will appear.

I have only eaten a sausage sandwhich today so far, other than some yoghurt covered raisins which I Daisy and Samuel kindly shared with me. I cannot face a kebab, so it might have to be a Pot Noodle. I have not really prepared for eating today and it was too cold to go into town anyway, and I did not want to leave Fred on his own.

Day 163 (Sun 17 Dec)
Mon, 12/18/2006 - 04:31 — endc011
I awoke this morning having had a good nights sleep. I thought I was in Bristol at first so was confused. I rang Rachel first thing but I woke Fred up with the telephone ringing.

He seemed to be his normal self and Rachel says that there are not any new "bites" on him. They have shrunk a bit but got more concentrated.

I did not do a great deal today but it was my mums birthday today. I did not think I would be able to make it, but Rachel and I planned our movements and so was able to come back unannounced which was good.

We decided that simplicity was the key, so had some fish and chips at mum and dads, all together with my brother Dunc. I ate too many chips though but they were nice.

I am reluctant to ring Rachel again at this time of the evening as I might wake Fred. I think I will try and turn the volume of the phone down.

Today I visited Emma who helped at the Anthony Nolan Trust event this week. She gave me some monies collected by the office and by selling the remainder of the scarves and Christmas cards left over from the coffee morning. Rachel and her mum organised a coffee morning in Chagford a few weeks ago. It was on for just over two hours and they managed to raise in the region of £1700.00 which I thought was really good. My office and colleagues have raised a few hundred and 3B Wines in Goodrington has raised a tidy sum too.

We have sent the money to CLIC and hopefully the amount will be equally split between CLIC Bristol and Ward 34 of the children's hospital, which is a CLIC ward.

Once I have all the remaining money I will do a "Hall of Fame" and break it down and post it on the 'blog.

Day 162 (Sat 16 Dec)
Mon, 12/18/2006 - 04:30 — endc011
Apologies for the late posting of this 'blog. I typed it up last night and went to "create" it and my screen froze, thus losing all my ramblings. I did not have the energy to do another at the time.

Here is yesterdays news:
Fred had been active in the early hours and was chirpy when I arrived. We had some breakfast in the canteen and Fred was busy watching the other diners chewing his fingers.
Fred spends the day playing and watching, then having a few minutes napping times.
The doctors come in and have a look at him. He still has some of these "insect bites" on him, and cannot really be bites this time of year. We ask what they could be and Jo the doctor hesitates. Sometimes these bites can be a result of a viral or bacterial infection which I guess is straightforward. They also can be related to leukaemic cells which would be her real worry. There is not much that can be done over the weekend, and she explains that when Fred's bone marrow is tested on Wednesday, they will do a biopsy on one of them. This in effect means they will cut a wee bit out to test. That is another complication we can do without at the moment.
We should have the test results by Thursday we are told so that will be an awful waiting game.
We headed in to town and Fred was curious about all the lights and sounds. He listened to the Salvation Army band with his eyes wide open.

We headed back to the hospital in the dark and the illuminations of Broadmead caught his eye. He was safely wrapped in his poppa-blanket once again.

I head back to Torbay in the afternoon and visit some friends for some tea.
Fred settles well and is sleeping when I call.

Day 161 (Fri 15 Dec)
Sat, 12/16/2006 - 01:12 — endc011
Fred slept as soundly as ever last night. I managed to change him, put him in his poppa-blanket, take it off again and put him in his gro-bag and he still did not wake up, which was a good sign for me.

He woke at about 0400h and so I fed him and he nodded off more lightly this time. He did wake at 0500h and then kept awake until 0700h when he really became active. Suddenly he was fast asleep again and so I did same.

i woke to Rachel moving around the room at 0915h so I had overslept.

We caught up with his meds and he seemed happy. He had a bath today and really enjoyed that. No shouts of anger, and his hair was washed too. We changed his Hickman dressing too, and later his NG tube dressing so he is "all new" for the weekend.

We did notice three marks that looked like insect bites which obviously they weren't, and mentioned it to the doctors and it needs watching. Apparently infections can be indicated by this - hopefully not another infection.

Fred, Rachel and I went into town today which was good. It was getting quite dark when we came back but Fred enjoyed the lights, and the people bustling past him. I went to the market and bought some stuff.

It is getting cold now so Fred was wrapped well. We also watched the tail end of the hospital Nativity play in reception which looked good. Unfortunately Fred delayed us on the way down.

Day 160 (Thu 14 Dec)
Fri, 12/15/2006 - 03:11 — endc011
I had a good nights sleep back at the house after a plateful of liver and onions. I think I stank the house out with the onions but not many people were about.

When I get in Fred is quite happy and has been well behaved. Most of his day is spent with him being awake and being very lively and vocal. He is very alert today and wants to grab anything within his grasp, and beyond.

We take Fred into town as we need a few things and he wore his new poppa-blanket for the first time. My mum and dad got it for him - it is basically a blanket that can folded into a gro-bag and is made of fleecey material. It is cold today so he appreciated it. His eyes watered alot and then he fell asleep happily as we jostled with the shoppers.

There is a large ferris wheel in Castle Park for the next few weeks and I decided I wanted to go on it. It is cold and windy today but and I two others have a gondala each and we head up into the clouds.

I can see Rachel and Freddie far below in the park, with Rach waving. I try to take some photos but it is wobbly up there. I take a photograph of the childrens hospital too.
When we get back Fred meets Henrietta the dalmation that visits the ward. Both are not interested in each other but at least Fred has made the effort.

After some lunch we are visited by the National Blood Services mascot - Billy Blood Drop. Basically this is a large furry rotund object with someone in it sweating profusely. I know the feeling well. Fred has his picture taken with Billy and receives a goody bag with a miniature Billy plus a teddy and some stickers. The purpose of the visit is to remind people to donate blood in the run up to the Christmas break as there is an anticipated shortage.
Rachel heads back to the house and I will stay with Fred. When we leave we put him in his pram by the nurses station and he is quite happy.

When I get back he is mighty angry and is having his bum changed. He soon calms down once he sees me, and within a few minutes is fast asleep.

Hopefully he will sleep well tonight as he has been awake all day.

He has also fed well too. He has taken back to the bottle, something he has not done voluntarily for several weeks now. He is also enjoying his baby rice and other solids so his taste buds must be coming back. Some of the chemotherapy alters the taste buds so that might have been a reason. he has not lost the habit of dummy sucking though.

Tomorrow there is a nativity play in the reception area so we will go and see that of we can.
The donor session in Torquay yesterday went well. 75 people were added to the Anthony Nolan list which is a good turn out. I originally thought only a few people would go along. Most did not know Fred but had heard of the story and the reason why it is important. There were articles in todays Herald Express and Western Morning News.
www.thisissouthdevon.co.uk/displayNode.jsp?nodeId=135239&command=displayContent&sourceNode=135077&contentPK=16184519&folderPk=79060&pNodeId=134831

Day 159 (Wed 13 Dec)
Thu, 12/14/2006 - 03:20 — endc011
Today is the day Antony Nolan Trust is holding the bone marrow session at Torquay. Hopefully a good few will come along to the event and register. I spoke with the Trust yesterday evening and there had been quite a bit of interest.

Unfortunately I was not able to attend today to see how things went, but my brother Duncan did. He seemed to think it looked good and he managed to speak with the organisers as well as Emma, my colleague who has been doing a great effort in keeping things moving. She has been arranging the appointment times and distributing posters enthusiastically. Other colleagues have ensured that posters are up in as many of the places as possible.

I am not sure at the time of posting the 'blog what happened in the end. I spoke with Emma a couple of times and it seemed to be going well, though I have no idea as to the number of donors. I spoke to another colleague who went but was unable because of some recent medication, so not all who who volunteered managed to donate. Great that they tried though.
My mum and dad accompanied me back to Bristol today and we had lunch in the canteen with June Rachel and Fred. Fred nodded off during the lunch though awoke a bit later.

He also had his first proper baby massage by one of the trained staff, and he loved that. When I tried to pick him up he was as slippery as a greased piglet. Smelt better though.

He has started making a new noise today - a rasping sound with his throat. I am not sure whether it is the new NG tube that went in yesterday or not. It travels a long way in the ward and staff do tend to pop their head around the door just to see he is OK.
He some spring vegetables and chicken today reluctantly and might have enjoyed it come the end.
I am off back up to the house now, with Rachel staying in. We do not know what will happen with his tests which are critical but I think the marrow will be tested on Wednesday afternoon. Prayers, fingers and everything crossed please....

Day 158 (Tue 12 Dec)
Wed, 12/13/2006 - 06:40 — endc011
Fred and I had a good night last night with him waking for a feed at around 0400h. He was a bit gripey and rather animated for a while but settled in the end.

I awoke to some commotion but did not take much notice as he quietened down quickly. In the last few days he has been shuffling around 360 degrees in his bed so his legs stick out of the side of the bars and he tends to get stuck. He is then out of reach from his belongings and then gets annoyed.

As I get wearily out of the bed I see he has whipped his tube out, so it lies like an aerial attached to his cheek. I despair at this as he is due a feed and meds, and the night staff are positioning themselves to go home. No real hurry, so I will wait until the next lot come on.

I take the opportunity to take a few photographs of Fred tubeless and these are on the 'blog tonight with a few others. He is very very pleased with himself but does not realise that things are afoot to replace it in the next few minutes.

I have never been a fan of the NG tube being inserted back down his nose, so I vacate as the door shuts behind me. I make my way to the computer room to see what is on the news today. I faintly he some shouts from his room, but soon Fiona comes in to say the deed is done.
I get back in to see a red faced but happy Fred with a few tears in his eyes. I wipe them and feed him plus give him his meds. A new nappy makes him ready for the day.

I have a chat with Jo his doctor for the day before I go and meet Rachel in the car outside. All seems well for the moment so I head back to Paignton for the night.

Fred is cheery for the rest of the time I hear and I pop over to Wayne and Claires for a meal. There are quite a few others there which is nice.

I learn that Fred will have another bone marrow aspirate next Tuesday all being well, and where we will be able to see what this part of chemotherapy has achieved.

Day 157 (Mon 11 Dec)
Tue, 12/12/2006 - 04:59 — endc011
My day with Fred was spoilt by reading the articles in the Daily Mail and the Daily Express. I also understand that a similar story has been run in the Western Daily Press, none of which I think helps recruit more people to the session on Wednesday. I also understand that a reporter has pestered neighbours looking for information when it was not needed.

Fred today has been very well behaved, though his bum is a bit sore again. This is due to the fluids going in having to come out, so after a great discussion on creams and preparation, the prof. decides that "air" is best. We are a fan of that and so Fred can wee to his hearts content onto the absorbent blanket, which he does.

The rest of day is taken up with sorting the first paragraph and so not much news today really. Hopefully Fred will continue to be stable and entertain the staff here.

Day 156 (Sun 10 Dec)
Mon, 12/11/2006 - 05:18 — endc011
I woke early with the intentions of getting up, but nodded off again so had to trot down to the hospital sharpish. Fred was wide awake when I got in and Fred had behaved in the night.

He has spent the day playing and looking about and has had his cuddles. He spent sometime in his buggy watching the world from the desk and later his doorway.

There are only a few in today, so it seems quiet. The numbers increase back to normal though later in the day.

We continue to change his nappies every hours or two as they fill quickly because of all the fluids he is passing. Changing them disrupts his power-naps though, and makes him a bit fractious at times but he soon mellows.

One of the nurses popped in with a little stacking toy she had got from her daughters Christmas Fair, and gave it to him. Fred is pleased as it is chewable and is brightly coloured. That was a lovely gesture and Fred appreciated it. Tomorrow we will have one of our regular "toy audits" as he his bed tends to get full of things to distract him. New toys, or recycled ones from the other week,, keep his little mind active.

Rachel has headed back today and will be back on Tuesday, and I might head home if all is well with Fred.

It was quiet today with not much happening. Yesterday David Gate (see his website on the home page) came in again to see Fred and we had a long chat about all sorts. Fred behaved impeccably throughout and managed many smiles.

Fred is generally well and his infection (CRP) marker is down from 142ish to 22 I think. His temperatures have stabilised now so hopefully that will be then end of the bugs for a bit.

I understand that two tabloid newspapers have been asking after us this evening, and wanting a quotation about our Fred and the bone marrow session on Wednesday. The hospital press office has been approached though we have not really been available as Fred needs our constant attention. I think the papers found their way through the 'phone system on to Fred's ward, but did not get much further than Nicky, one of the nurses. I think they will have plenty of material on Fred from the earlier articles in the Western Morning News and the Herald Express.

The donor session is on Wednesday at Torquay Town Hall so pop along and register if you can. Check out the Anthony Nolan Trust website and look at the forthcoming registration clinics - its should be listed by now. It is worth joining if you can as 7000 people like Fred are waiting for a match.

I am off to have my curry in a minute and will have to look out for a shady hack with a notebook in hand, wearing a mac and with a pencil behind his ear. I suppose he might also have one of those magnesium (?) flash bulbs on a camera too - the old ones that go off in a puff of smoke?