Day 216 (Sun 04 Feb)Mon, 02/05/2007 - 04:17 — endc011
You can see that I have been a bit busy recently, and that is the reason why the ‘blog has been delayed since Thursday 1 February. I have gone back to Day 213. You will also note that the titles are formatted slightly differently for each day. Claire, who does the ‘blogs for me when I am unable to post them, prefers a different format including the year. Thanks Claire for all your help. I do not know what computer arrangements there are in the BMT Unit though so there might be a bit of ‘blog disruption over the next few days.

I also seem to have been eating a lot the last few days which makes a change from the intermittent feeding we get used to in the hospital.

Today I going to a christening locally, where I am to be godparent of little James David. He is 6 weeks younger than Fred and you will have seen some of his comments on the ‘blog over the duration. James and Fred went out in the week before he was diagnosed (when I was on a weeks leave) down to Goodrington beach on a nice hot day.

Again the weather is very good this morning and the sky is blue, with the bay looking a real picture. I am collected by Amanda and Mark, together with James who is very smartly dressed indeed, strapped into the back of the car. I have not seen him for a few weeks, but he is growing quickly.

Once at the church we are given a brief run down of what will happen, as I was not able to attend the rehearsal. All went well, and even the children did not make any noise, which was good. James managed to hook my handkerchief out of my breast pocket and suck on it though.

Over to the golf club for a carvery and drink afterwards was another great change. I have been eating a lot the last few days, and I noticed that the waist band on one of my suits had tightened just a little. On my return to home I had a little nap, and have to pack all my stuff back up to take back to Bristol.

Rachel assures me that Fred is very active and moving around the bed too. They have moved from Ward 34 to the BMT Unit as planned. I have not heard much more than that really, and I suspect the accommodation is of similar size to our cubicle on Level 5.

The ratio of staff his higher, at 1 nurse for every two patients. On Ward 34 it varied but was around 1:3 or 4 patients. There is also an adult on the ward too and I think they can take older people. It is different in that you can press the buzzer and they will come and cook your food for you as they have Hotel Services staff permanently available on the ward. Apparently nothing is too much trouble so we will have to see. I have purchased a lot of spicy noodle packs from our local Thai mini-market.




Day 214 (Fri 02 Feb)Mon, 02/05/2007 - 04:16 — endc011
I am awoken early by the bedroom door opening, and Samuel (who is nearly 4) telling me it is time to wake up. This is at about 0730h and I thought I might be able to wallow a little longer, but obviously not, as he repeatedly came in. He also wanted some of his toys in there too. Eventually I get up, and we have some breakfast.

That morning we head up to the field to pick all the poo up of Frances’ three horses which is actually such a change to our normal routine and as it is a fine cold morning, being out on the levels of Somerset is great.

I head back after all that and hear from Rachel they are getting ready to move the stuff from CLIC House across to Sam’s House which is closer to the hospital. It is still owned and operated by CLIC Sargent, but is mainly for people with children staying at the hospital before, during, or after a BMT.

I have not been there at all before and I am not sure where it is. However we are told that is “better” than where we are at the moment and is newer. There is a much more higher level of cleanliness at the house for obvious reasons, and there are some different house rules to reduce the risk of infection.

When I get back I decide to pop over to Torquay in the evening as one of the girls from work is leaving. I have not seen most of my colleagues since June 30 2006, when I took a weeks leave and then Fred was diagnosed. They are bowling and going to a Mexican restaurant nearby. It is good to see them all again and catch up on the latest in the office and hearing the usual reports.

After another big meal I head back home (not too late) planning to do a lot more on Saturday.

Day 213 (Thu 02 Feb)Mon, 02/05/2007 - 04:14 — endc011
Fred behaved overnight although on a couple of occasions he was sick. Nothing like what we encountered before, but it is decided that the NG tube should come out and be replaced. It has been in three weeks now and the stopper on the end has broken so that is no bad thing.

One of the surgical team come down to look at the incision on the neck, where the recently inserted the Hickman line. It is covered with the temporary strips, steri-strips but when Fred is craning his neck, you can see the wound clearly and the tube inside. Obviously Fred will become susceptible to infection and we point this out.

They re-strip the incision and Fred is held down, though he does not make any fuss. He is just very curious about those around him.

Today is very active again and is turning on his stomach and trying to swim but does not get anywhere. He still gets upset and being stranded sometimes but he is more happier at this new look on life around him..

Rachel comes in and is soon joined by Colin, June and Gaye. As we are still being barrier-nursed they have come armed with flasks of hot water to make some tea as we are not able to use the parents kitchen still. I think we have been isolated in this way almost continuously since Christmas, but with a short break.

Fred is due to have the “echo” on his chest which is routine before a bone marrow transplant. As he is allegedly “buggy” with C – Diff. and the norovirus they come to Fred with a mobile unit. Lights down, gel on his stomach, he behaves himself impeccably once again.

His NG tube is whipped out and is replaced later on in the day. He looks great without that damn tube hanging there.

After that we are given a tour of the BMT unit on level 7. It is similar in look to the current ward but bit seems much quieter. We did not see many staff about but they tend to spend longer in the cubicles rather than rushing around as they do on Ward 34.

The Unit is in two parts. The first side that we will be staying in is the non-isolation side. Very similar to where we were before, and we probably will not notice too much difference. On the 13 February (Day Zero) Fred will be transferred to have the infusion of marrow, probably late afternoon. To enter the isolation ward you change into the blue scrub suits that they wear in theatre and store your belongings in the lockers. You need to bring a pair of shoes in for the duration that are new and have not seen the outside world. Once all changed you enter the ward and once in the room you do not come out unless you are going off the ward.

It is geared up to look after the patient and parent so they will get you anything you need. However there is not any food allowed in the rooms so you need to go to the parents kitchen – which is currently closed due to Norwalk….

The room is cleaned twice a day or more so clutter is not allowed and when you want to pass grubby items out of the room, you place it in a cupboard that is accessible by the staff on the other side. The whole key to success is to remove all threats of infection hence the isolation.

Fred will only be allowed four nominated visitors, including Rachel and I, so that leaves only two to come and see him. Once we find out what actually happens we will know more.

We head back down to see Fred who is happily playing with his toys unaware of all this preparation.

Michelle, the oncology consultant who has been co-ordinating his treatment comes in for the consent forms to be signed. She re-caps on one of her earlier meetings with us, when she warned us what to expect after the bone marrow transplant. Fred is almost certainly going have a very very difficult time over the next few weeks with the most likely being stomach problems. There are a lot of other complications too, though we hope that he can work his way through them again as he has before.

She reminded us of the statistics of success which really brought the whole thing home, and to see him lying on the bed near us, rolling and chuckling made it all the more difficult to comprehend.

After lunch we had a good time with Fred and he enjoyed all the company.

I am off for a few days, as Fred will be heading to the bone marrow transplant unit on Sunday.

I am visiting some friends in South Petherton which is an hour or so away, and stay the night with Frances and Paul. I am fed with great food that evening which is a trial run for a dinner party they are having in a few weeks time.

Wednesday 31st January 2007 (Day 212)Thu, 02/01/2007 - 03:38 — endc011
The doctors confirmed the good news to us this morning and that we would be transferred from Ward 34 to the BMT Ward on Level 7 on Sunday 4th.
He will continue to have antibiotics and also will start a short block of chemotherapy today. This is really a 'maintenance' treatment to keep the leukaemia at bay whilst awaiting the transplant day.
On Monday 5 February he will start his 'conditioning' and this shall last for eight days. It is a treatment to kill as much of his own marrow as possible before the transplant occurs. The first day of the treatment is known as 'Day Minus 8' with the transplant date of the 13th being 'Day Zero.'
After that each day is known as 'Day Plus 1' and so on.
It is likely that little Fred will become profoundly ill over the course of the treatment and we have been briefed as to the likely problems. These problems could start occurring around Day Plus 5 I believe. Some problems he may have experienced before, and others will be new to him but it is common to have serious situations arising and we have to be prepared for that somehow.
As this is his only option for survival it is great we have the opportunity. Many many people do not and that is why it is so important for people to join a bone marrow register. However, now the day is actually approaching I worry for Fred. To not have the transplant could have been a route for us but we saw from his rapid relapse in December that it would not have been a successful tactic.
The BMT is not a guaranteed fix but is the best we have.
He has enjoyed today with a few more visitors and has also had another session with the physio. Hannah brought him in an adjustable soft chair which he seems to like very much indeed. It can be moved to suit a number of positions from up right to reclined.
Lots of laughter and smiles from Fred has meant a good day for all.
The weight of him at 9.2kg is likely to be a real weight, which is promising too. Hopefully the heavier he is, the better position he will be in health-wise for his BMT.
I am also given a pack of Polish food from one of the other children's parents, who is Polish. She was eating them at the house a few weeks ago and I asked what they were. They looked like a huge plate of dumplings but are made of potato I think. About the size of golf balls you have them with either onions and olive oil, or just butter.
I should have spent the last seven months learning new languages as my Polish is not good, although I am a proud monoglot, I am not sure how to cook them. If anyone has any ideas then please post them on the blog here.

Tuesday 30th January 2007 (Day 211)Wed, 01/31/2007 - 03:57 — endc011
Another quiet night for Fred and he also took about 80mls of milk plus water.
He was NBM from 0500h and but had a quick feed half an hour earlier. I awoke at 0600h and listened to the radio as he stirred slowly and had a shower.
He was going to theatre early, but is put to the back of the list due to his bugs and also that the chemotherapy will not appear until late morning.
However he is unexpectedly brought forward to 1015h and heads down to theatre. Today he weighs 9.2kg which is an improvement on his previous weights and the heaviest he has been so far for a long time. He is slowly heading for his average weight though this is only a guide weight.
They give him anaesthetic and drifts off in 10 seconds or so. I put him on the trolley and leave him to the staff.
He is down there until 1200h and we collect him from theatre. He looks battered and bloodied this time with bruising. He is not very happy either and we learn they did not give him his IT nor do the trephine either. The chemotherapy was not ready in time.
We took him back to his room and washed him down. He was quite grubby with a few extra holds in him.
The Hickman line is now back in and ready for use. It is back on the same side as the one removed on Saturday night and that may be how the bruising is more prominent.
His femural line was removed very neatly too though he is a bit sore all over. He has little plasters on his back where they took the bone marrow sample.
Fred remained jovial during the day amazingly and had a little further milk.
We will get the results as soon as they are available and this will decide whether he has the transplant on the 13th or not. This is the worst bit as Fred looks so well at the moment and has had a rough two weeks really. If the leukaemia has come back rapidly we will have a difficult time ahead for all of us.
He has been sick a couple of times this afternoon hopefully due to the anaesthetic. He seems "comfortable" as they say.
Update at 2010hrs;The oncology consultant rang through to the nurses desk on ward 34 with the results of the bone marrow aspirate. She asked Anna the nurse to go in and tell Rachel that the tests showed the marrow as "clear" and that Freddie would be as we understand it proceeding with his transplant on the 13th February as planned.
This is great news and I will find out more information tomorrow.

Monday 29th january 2007 (Day 210)Tue, 01/30/2007 - 03:46 — endc011
Whilst I gave Fred his meds last night he awoke in considerable pain and tried to be sick again. This continued for a while before he drifted off again. I have him a little milk by his NG tube and he awoke again in serious pain.
This seems to happen alot and Fred is not keen on it either. We discuss the matter in the early hours and decide no more tube feeding until when it is light.
With that Fred and I have a very restful night.
The following day I chat with the dietitian who explains the bottom of his NG tube is lower than it should be on the x ray, and is passing through his stomach in toward the jejunum area. Apparently you can have NJ tubes in this area but currently this may be the source of irritation and so they will pull it back 3 inches and see how he copes.
My mum dad and brother visit today and witness his NG being pulled back but Fred stays very still when needed and is all sorted now.
He is very active again today and 'enjoys' a constant stream of people coming to see him, mainly about tomorrows procedure. He will have a bone marrow aspirate and possibly a trephine (with the latter being a hollow drill to take a bone sample, I think.)
They will also do a lumbar puncture and possibly give him some chemo in the spinal fluid. He will be done in the morning I think, though that can be variable of course.
Mum and dad go back after Fred has entertained them for the day and he remains alert for some time.
I read 'Practical Caravan' and todays 'papers, whilst Fred sings and shouts before finally flaking out after 30mls of milk and water.

Sunday 28th January 2007 (Day 209)Mon, 01/29/2007 - 03:16 — endc011
Another quiet night for the two of them means some better sleep for both of them.
Rachel heads back this morning which leaves Frederick and myself to entertain each other.
He is on fine form again and we manage to have a wrestling competition as well as lots of cuddles.
For a time he is off the pumps and free to roll about the floor. He is on the mat for nearly an hour and eventually rolls off into the feet of the trolley a bit too quickly. This once again frightens him, so he goes back to his bed where he relaxes and falls asleep.
I pop into town for some food as well as some stuff for Fred. When I get back he is quite angry and the three nurses on today have been taking it in turn to try and placate him. Once I arrive he settles and watches TV whilst I read the papers and eat sushi.
Later he is put on my bed and is propped up with pillows to try and strengthen his neck muscles. He still has a way to go in this respect but soon he gets out of hand and is returned to his own bed.
His blood counts are gradually increasing and he continues to have GCSF to boost them. Hopefully they will not rise unexpectedly.
On top of his TPN feed he is having 20mls of Infratrini milk followed by 5mls of water. His weight today is 8.8kg 'though I do not know how much of that is actually excess fluid.
He is fast asleep now clutching his dummy and snoring loudly.

Saturday 27th January 2007(Day 208)Sun, 01/28/2007 - 03:04 — endc011
Last night I was looking forward to a "bangers and mash meal" only to be advised it was now out of date - I thought I had only bought it a day or two ago. My hopes for some ravioli were further dashed when it too had expired last week.
Being remanded in custody means we do not have access to the families kitchen, canteen or computer room and have to rely on us asking staff to get and make food and drinks. As there is not a formal system for treating us like in-patients, it is very much up to us to either eat out, or buy food to be prepared by staff whilst being barrier-nursed. You cannot even rustle up a cup of tea without asking, and technically hot drinks are not allowed on the wards.
The staff are of course busy and easily distracted to do more important tasks, which means sometimes a meal or two can be missed in here. I can nip out in the evening up the road for a kebab quite easily but it is not so practical for Rachel.
Fred is very active and whilst rolling onto his stomach is fun, it causes havoc with his tubes. He is normally having four tubes working at the moment, being morphine, antibiotic, TPN and paracetamol.
He is using the tubes now like climbing ropes together with the bars on the bed to make his way up and down the cot.
All of this activity means he needs constant watching, even in a secure 1m x 1.5m 'cage.'
Compared to a week ago he is much improved and more settled. I stayed for the first time in his new room and it was Ok. At least the shower is much better than before. The window too gives a clear view of late night revellers sporting traffic cones on their heads.
It seems a bit cooler in here at night, with the duvet being as thin as a cats ear.
We went into town at lunchtime whilst Fred slept soundly. Nothing much else happened today and so I head up to the house at about 1800h. I shall have a steak and kidney pie which has been defrosted - a supermarket bargain now out of date, but safely frozen on purchase.

Friday 26th January 2007 (Day 207)Sat, 01/27/2007 - 03:19 — endc011
Fred and Rachel had a good night with him settled.
He is having small feeds of about 20ml and seems to be tolerating so far. It is via his NG tube so is still cheating a bit but does the job. He is also getting his TPN again too without any apparent problems.
These little advances mean that he has gained weight to 8.8kg although an amount of that could be fluids.
For the first time in months he took to the bottle today and happily drank 35mls which is not a lot, but indicates that HE wants it at that time. The second time he holds the bottle himself for the first time ever and drinks carefully. He even can bring the bottle back up to his mouth when he wants. Another little milestone in that he has been so uncomfortable these last couple of months he did not have interest in much.
The doctors are pleased with him to date. He will be going back to theatre on Tuesday 30 January to have a LP, BMA and a new Hickman line put back in. We will have to wait again for a bit to see if the leukaemia is returning.

Thursday 26th January (Day 206)Fri, 01/26/2007 - 03:55 — endc011
Hello BloggersTim is back in isolation with Freddie and Rachel. He has sent the following update for you all:
I get back about lunchtime and trot off down to the hospital. When I get there I find his new room and peer in.
The room is dark and I can see a small shape in the cot. I can also see Rachel in the gloom too.
He is fast asleep looking very comfortable and the room looks fine. Slightly smaller but the window has a view and seems alot better. The en suite shower is much better than before and Rachel does not want to go back into cubicle 5. After a while I can feel why.
I also find out he has another gut bug, C-Dif. which is clostridium difficile. More barrier nursing.
Hayley and Graeme are in town and we meet up with them for some lunch. A couple of pints and a chat which was a nice change.
They came back to see Fred and he was fairly happy to see them. Again he looked very tired but managed to stay awake so that he did not miss anything.
I got back to the house and it was heaving with people. There was a time some months back that I was the only one in the house for some weeks. Good to see a few of the old faces though.