Day +63
Hi everyone. It's great to be spending so much time with Jesse. Once again he was on great form today, so accomodating and polite with the medical staff - every request is answered with "yeah, sure you can" and he is so chatty when engaged with something that interests him.
I took him over to the Brunswick again today, it was a lovely sunny day so we had to put sunblock on him. It was so busy that we didn't stay long and it was getting close to meal time anyway (the highlight of the day).
Once settled back in the room, Jesse started to watch the clock for 4.00pm (pasta time). After a couple of checks in the kitchen and no sign of it, Jesse decided that we should go spying for it. We set out along the vast corridors lisening for tell-tale sounds from the lift shafts. We had a few false alarms and then decided to check whether they'd sneaked it into the ward without us noticing! No such luck. We were about to embark on another mission when the trolley appeared! A very apologetic lady explained the difficult circumstances to Jesse but he still pointed out that she was extremely late! (4.45). Jesse savours every tiny morsel of food that he can have. He is always looking forward to his next cornflake snack.
We did lots more jigsaw tonight. The tank one could be completed over the next day or two (picture will follow).
Tim came over tonight to bring easter treasure from Sue (thank you, he will love the olden day coins and badges). It was nice to have catch up with Tim and he brought some lovely Carlucio treats.
Must get some sleep now.
Love
Derek
posted by Jesse Richards @ 00:07
6 Comments
6 Comments:
Happy Easter to you both and I hope some choccy is allowed. I am off to Sussex today taking Ivan the Terrible. I hope he will be OK travelling in his basket. He was already much better last time and enjoyed the country!
love, Sue
Bernie woke at 6.15 in a very good mood but hungry for his morning banana! I had a very fruitful day yesterday, sorted out Jesse's birthday presents (13th April), did some shopping, had my hair cut, met the builder, did some hallway painting (photo soon), met the floor sanders, delivered some books to the shop and did some sorting out there too. Albie is doing an amazing job of eradicating old lady wallpaper, he got a whitewash on nearly all of the hallway (three floors) in one afternoon!
I thought I should do a medical update for Jesse. I did ward round yesterday on the phone. They are happy with him at the moment, his poo levels are down but they are yoyoing a bit. They want to keep to the same diet (cornflakes, rice kripies, wheat free pasta and water) for the moment. Next week they may consider elemental feeding, a comletely pre-digested formula that can go into his stomach via the PEG.. He is still very reliant on TPN (total parentaral nutrition). This is two bags of protein, lipids and electrolytes dripped directly into his veins for 16 hours a day. We have no hope of coming home until he is off this. But because his gut is so damaged and sensitive we have to be really careful of triggering the voluminous diarrhea again.
On Wednesday, while Derek and I were doing hand over, Jesse had another ultrasound as the doctors had spotted that his spleen was enlarged. It proved that it was (14cm), and this is because the EBV (Epstein Barr virus) is now reactivated. It attaches itself to B cells and deposits itself in the lymph glands, from there it can trigger lyphomas (lymph cancer). The spleen is full of lymph glands, hence it is enlarged. Kanchen wasn't worried about this. His EBV load has come right down (45,000 copies to 15,000). This is because last Friday he had a monoclonal antibody, Ritiximab and he had another dose last night. This takes out all the B cells and so the EBV too. As with the adenovirus, the only long term solution is to wait for Jesse's new T cells to start working. Talking of adenovirus, the load in his blood has gone right down (from 48,000 copies last week to only 233 this week!). They are very happy with this and are considering dropping his next dose of Cidofovir due next Friday. This only means that the adeno is going from his blood, not his gut or his bladder (his wee is very cloudy still at times and blood is still detectable but the clots have gone). At the recent ultrasound they could see no trace of the hemorrhagic cystitis they found last week.
The final element that is slowing everything down is that the GVHD on his hands is still there. Unlike all the skin GVHD he has had for the past eight weeks that goes and comes, on his hands, it stays. We are treating it with a strong steroid cream three times a day. This happened last week, when they reduced by a quarter the immunosupressant he has twice a day, cyclosporin. It means the T cells are active but that they think Jesse is the enemy. Paul Veys says it is good for the graft, as it means the new marrow is likely to stay (as he had reduced intensity conditoning they worry about the transplant working long term), but it also means that they can't reduce the immunosupressants any more...which in turn means that the viruses can have a field day. You can see that they are going round in circles to a certain extent. Paul described the treatment like driving on ice. You have to apply the brake in short bursts or you skid out of control, so they are trying to control the GVHD and the viruses by going stop, start with the immunosupressants.
I hope this makes a bit of sense, I know it is very complicated but some of you may be interested in the details. It goes some way to explaining why it will take a long time for Jesse to be better, we are certainly looking at several weeks and it could be a few months. Very frustrating, especially as we keep seeing kids and babies going home who were transplanted after Jesse, but it will be worth it in the end and I am still glad we chose the gentler chemo as the long term effects will be significantly reduced too.
love
Claudia
PS I love you Jesse and am missing you loads
love
Mum
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
hello and happy bunny-and-daffodil-and-egg-and-all-that time!
so glad to hear of good news in the Battle of The Bum,
lots of love
Robb
happy easter jesse and derek! All our brummy bunny love to you both!
Here is a funny picture of stanley when he came to stay with me for a few days last half term! He's trying to play my cello but we think he looks like a giant playing a double bass!
[IMG]http://i170.photobucket.com/albums/u258/domdomdomdomdomdom/IMG_1831.jpg[/IMG]
lots of love,
Dom
xx
woops, the phto i left didnt appear to work! once i've figured out how to do it i shall post it again!
xx
Dom
Hi Dom
I really want to see this photo! All you have to do is sign in as "other" using your name and then put in the web address where it says web page. Then when the comment is published anyone can click on your name and it will connect to the page. I have done a link to purple-heart.com, fingers crossed that it works! Hope you are recovered from your op and that you have a lovely Easter and get loads of chocolate! All our love to you, your mum and dad and sisters, Claudia et al xxxxxxxxxx
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