Day 176 (Tue 26 Dec)
Wed, 12/27/2006 - 00:10 — endc011
I get back into the hospital and Rachel is feeling unwell. She has been sick a couple of times and does not look to good either. Fred is still quietly poorly and so Rach heads up to the house to do some things and get some sleep.

Fred does not seem to have a temperature which might be a good sign but he is clearly unwell. He gets through quite a few sleepsuits and sheets, and this means they end up giving him some fluids via his line, as he will get crispy again.

I have to remain in the room hence the 'blog not being done. It is difficult to get water or something to eat without just popping out, but I can understand why from an infection control point of view.

I start to feel unwell in the evening too and by the early hours I feel awful. I have to keep an eye on Fred's feeding as he is NBM after 0500h, because he is due a bone marrow aspirate in theatre. He is scheduled for an AM slot on the emergency list. Hopefully he will not get pushed out, but we do not know whether it is AM or PM. Either way Fred will be hungry.

Day 175 (Mon 25 Dec)
Tue, 12/26/2006 - 02:54 — endc011
We had our dinner last night with Fred by the big Christmas tree in the sitting room. It was quiet in the house and Fred seemed to be rather thoughtful and watching the twinkly lights change colour.

He went off to bed early with Rachel and I stayed and chatted to a couple of the other parents, and ended up going to bed later than planned.

Fred started being rather grumbly at 0300h this morning and progressively got noisier. He was sick a few times and by 0500h he was not happy at all, so we decided to take him back in to the hospital.

Once in he settled down and ill a couple more times but fells asleep. We did too and soon it was getting on into the day.

Wayne, Claire, Adam and Tim visited and we had a good time. Father Christmas met with Fred and he got a present. There was also a filled stocking at the bed which was a nice touch too.
They headed back to Devon and then my mum, dad, and brother appeared. Mum had cooked up some turkey and trimmings so we heated them up and sat down and fed well. Not the same as other Christmas's', but it was never going to be.

They then headed back and I managed to get some more much needed sleep. Soon it was getting dark and the buffet appeared in the bays next door. We had a feed and a chat with others and returned to start opening some presents. Today has been all over the place really, and so we wanted Fred to watch the presents being opened. Fred has received many many presents so we are opening them slowly. We will continue tomorrow as he fallen asleep, and whilst I carried on, the noise from unwrapping kept disturbing him.

More excitement tomorrow morning though with the second opening session.

I think Fred has an infection brewing as he is not quite his normal self. They have re-started him on antibiotics so hopefully he can shake it off once and for all.

I am heading back now to operate the washing machine. Rach has given me instructions as to how to get it going, but I am clueless as to how it all works. I think it is straightforward but I do not know.

Hopefully you all had a good day too.

Day 174 (Sun 24 Dec)
Mon, 12/25/2006 - 00:53 — endc011
An early rising for Fred as he thinks it is Christmas Day. He has never experienced one so he is forgiven. I manage to place the dummy back in his mouth and he drifts off again after some milk. It is 0530h and is all dark inside and out.

Rachel wakes me at 0930h and so we have some breakfast. Fred joins us and so we plan our day. He needs a blood transfusion and that is due at 1400h or just afterwards, so we need to be back sharpish. It takes about three hours for the transfusion and so we would like to be back at the house by early evening at the latest.

We do some last minute bits and bobs in the town and pass the good old Wetherspoons as we head back. We decide to have a pint and a coffee in there and I order a garlic bread for me as a snack, having eaten a little later than normal. After 30 minutes ( it is very quiet) I am told that "it's on its way..." and so have another pint. After an hour of waiting we have to go so I ask for my money back behind the bar. I do not have time to deal with idiots todays, and the manager gives me my money back without any real questioning or concern. Great customer care!

I go away a penny richer but much hungrier. I shall deal with the company in the New Year......
We tidy the room as my mum and dad should be coming tomorrow, with my brother, for some lunch in the hospital. We will do it ourselves and make the best of a bad job. Could actually be good and "different" to other years. We shall stay in the hospital during the day as it will have a better atmosphere.

The other evening one of the local PCSOs visited (police community support officers) who delivered over 75 presents for the children at CLIC House. The property was burgled a few months ago and they decided at Brideswell police station to donate some presents for Christmas, and a few other stations joined in too. A lovely thought at this time of year. Tonight I will send Fred rustling amongst the boxes to see whats there.

We are heading back in a while once his blood stops, and he is cleared to go.

I hope to continue the 'blog tomorrow but may not if it all gets out of hand here. In any case, best wishes and christmas greeting to everyone that follows Fred's progress.
Happy Christmas from Rachel, Fred and I.

Day 173 (Sat 23 Dec)
Sun, 12/24/2006 - 02:05 — endc011
Still foggy and cold today, but I am up early as I need to drive across to Clifton Village to get a couple of things. When I get there is really quiet and easy to park, which was strange given the masses elsewhere.

I got what I needed and headed back to the house and collected some more cards from the postie. It seems better getting cards this year as they nearly all have a good luck message in them which is good to read.

When I get in Rachels parents are already here and we have a chat. Fred is in his Santa's Helper suit though his slippers are too big and fall off. He seems well today and is enjoying all of the attention.

Mike and Susan arrive too, and we haven't seen them for ages so another nice change. They bring all the necessary things for a cooked breakfast and so this will be good for us. As all our stomachs are rumbling we head over to the Commercial Rooms for lunch, which is filling as usual. Fred gets his cuddles. I will have to struggle down with all of his presents in the next day I think.

Not much happens to him today although he is due some more antibiotics. He will need a blood transfusion either today or tomorrow as he is looking a bit washed out at times, though full of energy still.

One of his doctors - Jo - is off today, so she will not see him after today. She was one of the first to treat him back in July and has been involved with him since.

I shall walk Rachel back in a moment and come back to the hopsital. June and Colin brought a hamper for us and I have already extracted some cheeses to put in the 'fridge. There are some tins of beer too, so we will not go short.

Day 172 (Fri 22 Dec)
Sat, 12/23/2006 - 01:53 — endc011
This morning we should hear the news of the test results though we are not sure when. It will be a time just to wait and worry.

Fred awoke at 0500h again and was active until 0800h, so I kipped in until 0930h when the ward started to get busy again for the day. I lay in as long as I could but it got too busy in the room, and I had to get up anyway.

Friday is when they have the meeting prior to the weekend, and this time prior to the Christmas break. It goes on for quite a while and so Rachel and I just sit in the room waiting. And fretting as to what news we will get.

The staff who have been in the meeting gradually stream back in and all seem fairly up-beat, but it is coming near to holiday time for most of them. I watch and listen and know who will come in to tell us the news. I can hear them moving around discussing various things, and I continue to doze with one ear open.

You wonder will they just come in and deliver the bad news, or will they build up to it? Do they carry out the ward round as normal and leave you until the halfway point (being in cubicle 5 of 10 beds). If there is not a problem, why don't they just come in and give you the news they know we are hoping for, or dreading.

It seems to go on for ages but they appear suddenly in the room, a total of five I think. This reminds me of when Fred was first diagnosed, though everyone looks cheery and relaxed. The door remains open too, as a door that is purposely closed has to me, a more sinister reason.
Michelle explains that the results of the skin biopsy do not show anything really, and no sign of leukaemic cells or other nasties. This is a good sign for us as it was an added worry which we could have done without. She also went on to explain that what little marrow they could extract did not show signs of leukaemia, which was good again. Not conclusive but did not show anything. Again this was good to hear. I suppose it was the best news we could have wished for at this stage.

She went on to explain that another bone marrow harvest will be done next Wednesday to see how Freds own marrow is regenerating and then they will see whether it is "healthy" marrow or leukaemic. Not out of the woods yet but gives us a time to be grateful and try and make something of Christmas for our little boy.

If there is significant leukaemia in the marrow then we are running out of road really, but there is a chance of a clinical trial drug.

Hopefully it will be clear and Fred will have another block of chemotherapy, comprising provisionally three drugs, and will bring him a step closer to a bone marrow transplant. That is providing all the situations are right.

We hope that Fred will continue to be well in himself for many reasons but we do not want any unecessary delays now.

With that news, it seemed pointless to fret so we headed up toward Clifton to do the last of my shopping. I had given up buying presents in the last few weeks, but felt better about it today and so will finish it.

It was very cold and Fred enjoyed the activity around him. We went back to Broadmead where Fred was enchanted by the illuminations and lights in the shop windows plus the man playing the glockenspiel. We headed back where he was stripped and re-nappied, and put in his fluffy sleepsuit back in the warm. He had a bath earlier today too, so he smelling like a little daisy now.

I am off back to the house, as we have visitors tomorrow. I will pop out first thing in the car.
Rachels mum and dad, Colin and June are coming, plus Gaye. Also attending are Higgy and his family I think so it will be a busy time for Fred.

My mum and dad and brother are coming up sometime too, and our friends Wayne and Claire hopefully. I do not want to put anyone out over the festive season but we welcome visitors
We shall have our christmas lunch on the ward. I shall stock up on alcohol and plan to get some grub ready to snack on over the next few days.

Day 171 (Thu 21 Dec)
Fri, 12/22/2006 - 03:42 — endc011
Another cold and foggy night and so I rise early again. I plod down the street which is now all slippery with wet rotting leaves, and the abandoned settee has been removed. When we first came here it was always hot and I wore shorts, and the bushes were growing over the walls blocking the pavements.

No shorts today, just jeans and a thick coat plus a couple of carrier bags. They seem to be our trade mark now, carrier bags. Normally carrying Fred's grubby clothes to the house, or a bag of new clean ones. Plus the other bag normally contains my overnight stuff as I do not have a small overnight bag.

I get in and I am warned by Jamie that Fred has been up all night singing and that Rachel is tired. She is in the shower when I get in and Fred is wide awake ready for the day.
We sit and wait for the results but do not know when and if we get them today. People come and go and we are sent down to Radiology on Level 3 as he is due a heart echocardiogram today at 0945h.

We get in and he is far more wriggly than ever. Once the cold gel goes on him he is more animated and is difficult to hold down. We watch the screen and see his heart and heartbeat race whizz by, plus hear his heart pounding as he is not too happy. Cannot make out very much at all, and so just watch the shapes and sounds of Fred's insides. She writes her report and we have some breakfast, before going back to the ward.

Jo, one of the doctors comes in and says that basically not all the results are in at the moment and we should know tomorrow. One of the initial tests looks OK, but that is not a good indicator as to the extent of the possible problem. The more in-depth tests will let us know. The results of the skin biopsy will also be known soon, hopefully before Christmas.

I have not thought about Christmas yet really and have not bought all my presents. I did start and planned to do more, but events overtook my planning.

I spoke with Emily today, a regular 'blogger who has, as part of her course - National Diploma in Health Studies - been at Torbay Hospital and also arranged for some CLIC collection tins to be delivers. She and two others spent a couple of hours raising the profile of CLIC and managed to raise nearly £175.00 which was really good.

Fred at the moment is fast asleep and has just been fed. I will have something to eat in a minute and hopefully get a better nights sleep than Rachel did..... She should have a good night anyway as she is back at the house tonight.

Day 170 (Wed 20 Dec)
Thu, 12/21/2006 - 20:22 — endc011
This morning I tidies up the room as it had become alittle cluttered, but did not take long. Rachel will be coming back later and also Hayley and Kim should be visiting.

Today is the Christmas breakfast which is ticket only and I did not bother buying any. Julianna knew this and made me some slices of hot buttered toast, jam and marmalade, followed by a mug of tea which was really welcome and very much appreciated. I fed as Fred fed.

We went into the Play Centre mid-morning where Fred took up position by the aquarium and played with some new toys on a bean bag.

Hayley and Kim came in to see us and we had a good time. It gave me a chance to hear the latest from the office and made a change. I sugned Fred's consent forms and we headed back to his room as he was having a platelet transfusion at 1230h.

Rachel came back and gave Fred a big hug, and we headed down the corridor for a spot of lunch. Tummies full we went back to see what Fred was upto. he was getting ready for theatre and so I saw the girls off.

We took Fred this time up a floor and not to Theatres, Day Beds. Here they took a sample of bone marrow and were possibly going to use a trephine, which I think is is hollow needle/saw to take a sample plug of his bone if necessary.

They also were to take a skin biopsy at the same time.

45 minutes later we went up to see him and he looked fine if a little hungry.

We might know the results later today though we are not sure.

This afternoon and evening were the worst so far I think. Similar to when we came in, but now we know more and Fred has used a number of his options open to him already and previously everything was going as expected. Not knowing is the worst and we just have to wait. The longer you wait you wonder whether they are delaying telling you something for some reason, or they do not know. They might be awaiting more results etc etc.

I head up to the house and have something to eat. I do not sleep well and wake regularly from 0200h onwards. It is very foggy outside and cold and all looks very gloomy indeed.

Day 169 (Tue 19 Dec)
Wed, 12/20/2006 - 01:57 — endc011
I had a lie-in this morning as did Fred. He was settled once again and I have been keeping an eye on his temperature. It has bobbed up and down a little though nothing like previous episodes. If he has been sitting in his pushchair for a bit he tends to cook a little.

He had a blood transfusion in the early hours, starting at around 0300h. That lasted three hours I think (as I was asleep) and by 0700h he had started to shuffle around a bit. The last day has seen him sitting quietly not really taking part, but still managing to raise a grin.
Obviously the raised Hb (haemoglobin) in giving him some extra energy.

The dermatologists come in to have a look at him and they agree he should have a biopsy when they do the aspirate on Wednesday. They also request the clinical photographer to take some photographs which I have to consent to if I am happy. Cannot see any reason not to, as Fred will not be identifiable and it might help the situation somehow.

Fred and I decide to go into town at the end of the day to get something to eat, plus some more nappies. I also pop into Carphone warehouse to continue my saga of trying to transfer my broadband account to them. I started on the 25 August 2006 and I have yet to get a connection. I seem to deal with a succession of buffoons all who pass me to someone else.

I also get a telephone call from the Editor of the Western Daily Press who ran an article on Fred recently and included inaccurate information. I had complained to them as well as the Daily Mail and Daily Express. The response I had from the Western was encouraging and he said they were trying to track down the freelance reporter from the news agency, but did acknowledge my complaint. I have yet to hear from the others, and the holiday will no doubt delay a conclusion.

A couple of familiar faces have returned to the ward though I am not sure of their circumstances.

Fred is wide awake now after I left him in his room fast asleep. He seems to know when Rachel or I have left him, and bawls until the nurses scoop him up and distract him. It was nice taking him into town gain though, as the lights do intrigue him.

Tomorrow he will be NBM prior to his appointment in theatre although I have not been told what time it is. Rachel will also be back tomorrow morning and we have Hayley and Kim coming too.

Day 169 (Tue 19 Dec)
Wed, 12/20/2006 - 01:57 — endc011
I had a lie-in this morning as did Fred. He was settled once again and I have been keeping an eye on his temperature. It has bobbed up and down a little though nothing like previous episodes. If he has been sitting in his pushchair for a bit he tends to cook a little.

He had a blood transfusion in the early hours, starting at around 0300h. That lasted three hours I think (as I was asleep) and by 0700h he had started to shuffle around a bit. The last day has seen him sitting quietly not really taking part, but still managing to raise a grin. Obviously the raised Hb (haemoglobin) in giving him some extra energy.

The dermatologists come in to have a look at him and they agree he should have a biopsy when they do the aspirate on Wednesday. They also request the clinical photographer to take some photographs which I have to consent to if I am happy. Cannot see any reason not to, as Fred will not be identifiable and it might help the situation somehow.

Fred and I decide to go into town at the end of the day to get something to eat, plus some more nappies. I also pop into Carphone warehouse to continue my saga of trying to transfer my broadband account to them. I started on the 25 August 2006 and I have yet to get a connection. I seem to deal with a succession of buffoons all who pass me to someone else.

I also get a telephone call from the Editor of the Western Daily Press who ran an article on Fred recently and included inaccurate information. I had complained to them as well as the Daily Mail and Daily Express. The response I had from the Western was encouraging and he said they were trying to track down the freelance reporter from the news agency, but did acknowledge my complaint. I have yet to hear from the others, and the holiday will no doubt delay a conclusion.

A couple of familiar faces have returned to the ward though I am not sure of their circumstances.

Fred is wide awake now after I left him in his room fast asleep. He seems to know when Rachel or I have left him, and bawls until the nurses scoop him up and distract him. It was nice taking him into town gain though, as the lights do intrigue him.

Tomorrow he will be NBM prior to his appointment in theatre although I have not been told what time it is. Rachel will also be back tomorrow morning and we have Hayley and Kim coming too.

Day 169 (Tue 19 Dec)
Wed, 12/20/2006 - 01:57 — endc011
I had a lie-in this morning as did Fred. He was settled once again and I have been keeping an eye on his temperature. It has bobbed up and down a little though nothing like previous episodes. If he has been sitting in his pushchair for a bit he tends to cook a little.

He had a blood transfusion in the early hours, starting at around 0300h. That lasted three hours I think (as I was asleep) and by 0700h he had started to shuffle around a bit. The last day has seen him sitting quietly not really taking part, but still managing to raise a grin.
Obviously the raised Hb (haemoglobin) in giving him some extra energy.

The dermatologists come in to have a look at him and they agree he should have a biopsy when they do the aspirate on Wednesday. They also request the clinical photographer to take some photographs which I have to consent to if I am happy. Cannot see any reason not to, as Fred will not be identifiable and it might help the situation somehow.

Fred and I decide to go into town at the end of the day to get something to eat, plus some more nappies. I also pop into Carphone warehouse to continue my saga of trying to transfer my broadband account to them. I started on the 25 August 2006 and I have yet to get a connection. I seem to deal with a succession of buffoons all who pass me to someone else.

I also get a telephone call from the Editor of the Western Daily Press who ran an article on Fred recently and included inaccurate information. I had complained to them as well as the Daily Mail and Daily Express. The response I had from the Western was encouraging and he said they were trying to track down the freelance reporter from the news agency, but did acknowledge my complaint. I have yet to hear from the others, and the holiday will no doubt delay a conclusion.

A couple of familiar faces have returned to the ward though I am not sure of their circumstances.

Fred is wide awake now after I left him in his room fast asleep. He seems to know when Rachel or I have left him, and bawls until the nurses scoop him up and distract him. It was nice taking him into town gain though, as the lights do intrigue him.

Tomorrow he will be NBM prior to his appointment in theatre although I have not been told what time it is. Rachel will also be back tomorrow morning and we have Hayley and Kim coming too.