Music to our ears..........to + 58
I'm writing this entry from our local hospital as Saff has a blood "top-up". Everything continues to go really well.
We were at GOSH yesterday and saw Paul Veys - he's the "grand fromage" of the BMT unit and was really delighted with Saff's progress to date. He confirmed his belief that Saff's falling Hb levels are caused by immature marrow saying the red blood cells are typically the last to stabilise post transplant. He did however test another couple of possibilities to exclude them. The first is caused by the ciclosporin attacking the cells, they're left looking like they've had a huge bite taken from them. Treatment is simply to withdraw the ciclosporin. The second could be Saffy's original B cells attacking the donor's AB cells - this can occur because B blood cells contain A antibodies. If this is occuring they simply wait until all Saffy's residual B cells disappear and she takes on the donor's AB blood group.
Today's transfusion is to boost her levels closer to normal and then watch to see how long it takes to fall. Paul Veys says even if this process (i.e. transfusion followed by falling Hb) continues for a number of months he will remain unconcerned.
We left GOSH and travelled to the local hospital for the transfusion (obviously!). As Saffy had had blood taken 7 times in the last 10 days it stands to reason more would need to be taken to establish what blood should be ordered!! We arrived at 2.30pm, had blood taken at 3pm, and were told at 6.45pm that although the blood had arrived it was the wrong type. Words failed me - well actually they didn't but I think the nurse who had to tell me this wished they had.
So here we are this morning - I'm considerably calmer now the process is almost over. We're going home so Saffy and her nursery teacher Natalie can have fun. Tuesday's "lesson" involved a fantastic shaving foam fight. It's a pleasure to hear them at work!
More soon
Sonja
P.S. All blood results for the tests above were negative - brilliant
We were at GOSH yesterday and saw Paul Veys - he's the "grand fromage" of the BMT unit and was really delighted with Saff's progress to date. He confirmed his belief that Saff's falling Hb levels are caused by immature marrow saying the red blood cells are typically the last to stabilise post transplant. He did however test another couple of possibilities to exclude them. The first is caused by the ciclosporin attacking the cells, they're left looking like they've had a huge bite taken from them. Treatment is simply to withdraw the ciclosporin. The second could be Saffy's original B cells attacking the donor's AB cells - this can occur because B blood cells contain A antibodies. If this is occuring they simply wait until all Saffy's residual B cells disappear and she takes on the donor's AB blood group.
Today's transfusion is to boost her levels closer to normal and then watch to see how long it takes to fall. Paul Veys says even if this process (i.e. transfusion followed by falling Hb) continues for a number of months he will remain unconcerned.
We left GOSH and travelled to the local hospital for the transfusion (obviously!). As Saffy had had blood taken 7 times in the last 10 days it stands to reason more would need to be taken to establish what blood should be ordered!! We arrived at 2.30pm, had blood taken at 3pm, and were told at 6.45pm that although the blood had arrived it was the wrong type. Words failed me - well actually they didn't but I think the nurse who had to tell me this wished they had.
So here we are this morning - I'm considerably calmer now the process is almost over. We're going home so Saffy and her nursery teacher Natalie can have fun. Tuesday's "lesson" involved a fantastic shaving foam fight. It's a pleasure to hear them at work!
More soon
Sonja
P.S. All blood results for the tests above were negative - brilliant

6 Comments:
At 11:17 AM,
Bristol bunch said…
Glad to hear the continued good news - we keep a regular eye on the Blog. Have wonderful image of Sonja losing her world famous patience with some poor unfortunate nurse....you need to let off steam and better them than Mart!
Keep smiling
H, H, & E
At 4:29 AM,
Anonymous said…
Hello Saffy,
So pleased things are still good. Tell your dad the England team did really well at the Rugby Sevens in Wellington last weekend, beating those great rugby nations Niue, Canada and Samoa, but going down to Fiji and SCOTLAND. Poor dears. Tim and I were there having a great time. Tell Martin, in case he missed the news, that WALES also dealt to the England rugby team on the weekend. What is all that about World Champions? Must mean "used-to-be". Martin might need some cheering up, so make him laugh. Best wishes,
John
Petone, N.Z.
At 1:32 PM,
Anonymous said…
Hi Martin, Sonja,
Glad to hear things are going well overall. Pam and I have been thinking of you all, and keeping our fingers crossed.
All the best,
Sumant
At 11:02 PM,
Anonymous said…
Hello Woolley Family,
Very glad to know all is going well. Have tried to contact Erika and Bill for a personal update without success. Away now for three weeks. Will keep rooting for you,
Mary and John Samuel
At 4:28 PM,
Anonymous said…
Dear Saffy, I was really chuffed to read your news , especially the bit about how much of your treatment is now either at home or closer to home. We are looking forward to seeing you soon, but as there hasn't been a frost to get rid of all the winter lurgies, we've had a few hangers-on testing us all over the past week. My biggest challenge was trying to persuade Maya and LB to use pull-ups. I failed. Roll on Easter, better weather and all the joys of spring. Love Is, Andy, Maya and LB Cooper
At 10:07 PM,
Blog World said…
A dying man needs to die, as a sleepy man needs to sleep, and there comes a time when it is wrong, as well as useless, to resist.
Stewart Alsop- Posters.
Post a Comment
<< Home