Friday, 23 February 2007

Day +22 & 100% engraftment day!

We had great news today, Jesse's bone marrow has engrafted 100%! This means that there is none of his old marrow left, there is only the new marrow. This should mean that the transplant has been a success, so long as the old marrow doesn't come back (unlikely now). Of course he still has to battle with GVHD and not succumb to any infections, but basically we have got what we came here to do.

Today has been so much better on so many levels. We had the great engraftment news. Bernie, Derek and my blood counts came back as super healthy (we still are waiting for the blood films but so far so good). And to top it all Jesse has been on significantly improved form (until just now...) He was happier when he woke, had very bad belly ache followed bye a short sleep, laughed and smiled at Basil Brush at lunchtime (something I haven't seen for a long time), and then at 2.30 this afternoon got off the bed. I, almost as a reflex, pulled a bedpan out. He said scornfully "No, not that. I want to get out of here!" I suggested the play room but he wasn't impressed, when I explained it was that or nothing (he was hooked up to 3 IV lines at the time) he shrugged his shoulders and went meekly. We played on the game cube for nearly 2 hours. To see him yesterday you wouldn't have thought that possible for a few weeks at least. He came back for a bath and by 5.30m he was tucked up safely in bed and fast asleep.

The consultant, Paul Veys, is going to double Jesse's steroids (although he was only on a half dose before) and is fairly confident that they will be able to get the GVHD under control. I really hope he can...

Derek and I managed a night out thanks to Maggie's kind offer to babysit. We had a very tasty, if expensive, Thai meal in Lambs Conduit Street. We got back to the house early (10.30pm) but as I was taking my coat off the phone rang. Fox Ward asking me to come back, Jesse had been sick but was telling all the nurses to leave the room with hand signals! I sorted him out but then he had very, very bad belly ache, it was very hard to watch, he was in a great deal of pain. He wasn't due any more IV anti spasmodic medicine for a couple of hours and it was the codeine that he'd thrown up, he didn't keep a second dose down either. So there wasn't much that could be done to help him.

It was a shame this happened, after been such a relatively good day. This is how Chloe put it in a email today (in response to the engraftment news)
"Derek has just told me the fantastic news And that Jesse is in the playroom today - almost unbelievable. Yesterday, while I was with him, he had his head in his hands! I could have wept for him. It seems so unfair but this good news makes it worthwhile."

Albie and Stan are coming to visit tomorrow. I can't wait, I haven't seen them for almost five weeks. And sadly Lily is going back to Glasgow. I will miss her, even though I only saw her once. She has been an enormous rock. I'm glad she is going back to her studies and I hope she continues to enjoy them. With some luck we will be back from here by the time she is home for Easter...

Must go, it is late and I am tired. Much love to you all,
Claudia
xxxxxxxxxxxxx

8 Comments:

At 24 February 2007 at 10:59 , Blogger Rosalind and Ken said...

Darling Jesse, You are amazing! Your body has been fighting so hard for you, and now it's winning! Keep it up! Claudia and Derek...it's what you have been waiting for! For Jesse's tummy ache, would a heat pad be useful, also are there any slow release pain reliefs that he can be given to give him total cover?. Do they use M.S.T. for children?
All our love, Ken and Rosalind

 
At 24 February 2007 at 11:31 , Anonymous Anonymous said...

Such happy, good news - hopefully a turning point for dear Jesse and yourselves of course. Do hope the poorly tummy improves., and Jesse can play and be happy again. Also wishing the weekend goes well and you can still manage everything. Keep up the good work y"all!!! Sending lots more LOVE, Jenny & Phil and all ours x

 
At 24 February 2007 at 12:50 , Anonymous Anonymous said...

Hurrah - 100%, am soooooo pleased!
As for hand signals, I hope that they were polite ones!!

A couple of riddles to exercise your brain:

Q: Why do hummingbirds hum ?

A: Because they forgot the words!

(obvious realy isn't it)

Q: What do you get if you cross a canary and a 50-foot long snake ?

A: A sing-a-long!
Say hello to Albie n Stanley for me, er please.

love n stuff
Gaby

 
At 24 February 2007 at 16:05 , Anonymous Anonymous said...

Jesse
you are amazing and this is great great news!
Love but no kisses Red Ruth

 
At 24 February 2007 at 17:25 , Anonymous Anonymous said...

Dear Jesse,
For some reason Annie found some Christmas crackers which she wanted to pull and found some jokes so here goes...

What are brown and sneak around the kitchen at Christmas?
Mince spies!

"Daddy, daddy, there's a man at the door with a bill"
"Don't be silly it must be a duck with a suit on!"

Why do cows have bells?
Because their horns don't work!

What did one wall say to the other wall?
I'll meet you at the corner!

I hope you had a lovely time with your brothers - we can't wait until we can all see you!
Lots of love Maggie, Rick, Freya, Jim and Annie xxxxx

 
At 24 February 2007 at 21:01 , Blogger Unknown said...

Dear Jesse

We're all very pleased to hear how well you're doing - we're so very proud. My dad and his wife Mo are up here (we've just been for a balti. You must come and have one, apparently they go very well with satsumas). My daddy knows your daddy and has just read your fabulous blog so he sends all his love to you and your family. Keep up all the good work.

Lots of love

Joolz, Chris and Charlie in Birmingham

 
At 24 February 2007 at 23:05 , Anonymous Anonymous said...

Hello Jesse Claudia and Derek -
Hooray for the 100%! Most of us never get 100% at anything!!
Woody says he's still very keen to meet you and he reckons he could teach your two puppies (or is it more now?) a thing or two about sticks and training humans how to throw and retrieve them.
Meanwhile, keep up the getting stronger,
Much love,
Charlie, Tom, Woody & Wilbur xxxx

 
At 26 February 2007 at 17:47 , Anonymous Anonymous said...

Hi Jesse,

opened a copy of Wave magazine and there was a picture of you - you're now famous, in Brighton anyway.

Great to hear how well you are doing - we think you're brill!
loads of love
Debs, Gary, Fred and Tom
(Stan's mate Fred)

 

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