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?
Monday 18 December 2006
Saturday 16 December 2006
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.
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.
Saturday 9 December 2006
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.
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.
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