Thursday 30 April 2009

Day -7

Yesterday and today Oliver had 8 hour infusions of Campath through his Hickman line. This is to deplete his T and B cells I think to stop any autoimmune response to his new cells.
We have had a couple of tantrums which I suppose are understandable in the circumstances but none the less very upsetting for all of us.
Medically he is doing fine - he had a rash in reaction to the Campath today which we are told is not unusual but apart from that he is OK.
He starts the 'hard' chemo drugs tomorrow, Treosulphan and Flurabadine so we begin another chapter and a new worry that he will be ill with the drugs, all we can do is wait and see.
Met some other families who are all in the same boat but for different illnesses and it never ceases to amaze me how brave these kids are, it makes you feel extremely humble and ashamed for 'sweating the small stuff'.
I have started putting his medication down his NG tube and Ive got to say its a doddle compared to trying to take horrible tasting medication by mouth. To say I was scared of the NG tube this is a revelation for me.
Dave is holding up brilliantly, Ive shed some tears but not in front of Oliver so hopefully I can continue to have that level of self control although the hormones are all over the place with our new little one!
Will update again when I can
Thanks for following and caring

Tuesday 28 April 2009

Day -9 and counting!

We are now on our 2nd day at Great Ormond Street. Oliver was admitted yesterday and we have settled in as much as we can.
He had a canula put in his arm yesterday much to his dismay in readiness for his platelet transfusion this morning and for some blood tests. He had his platelets at 7am and went down to theatre to have his Central or Hickman line put in to enable bloods to be taken easily and for drugs to be administered without the need for any more canulas or needles. He has also had an NG (Naso-gastric) tube put in to help us ensure he gets the correct nutrition should he stop eating and also to ensure he gets enough fluid. This is because the chemotherapy drugs he will be receiving over the next week will put a strain on his kidneys so the more fluid he receives the better. The NG tube will also assist in giving him the oral medication which does not taste very good as it will bypass his tastebuds and go into his stomach.
All went well in theatre, although I cried my eyes out when he went to sleep - when he came round all was as it should be and both tubes were in successfully.
He is off his food, which I think I would be and he doesn't particularly like the NG tube but Im sure we can overcome this.
He never ceases to make me proud of how well he tolerates all he has to go through. We are trying to keep strong and positive although the next few weeks are going to be tough all we can do is help him through it as much as we can with our support and love. I know that friends and familys thoughts are with us and we thank you for all your messages of love and best wishes.
I will try to keep this blog as updated as I can

Tuesday 21 April 2009

5 days and counting


We are definately going into GOSH next Monday - 27th April.

Will try to keep this blog as updated as I can, depending on how things go, obviously.

Bye for now

Friday 10 April 2009

Good news from GOSH


Just got back from spending 2 days at Great Ormond Street Hospital and going through a round of pre-BMT tests. All is good and Oliver is fit and well apart from the symptoms of his WAS. We are still aiming to be admitted on the 27th April and his conditioning (Chemo) will start 2 days later. All still very scary but we had a look around the unit and the cubicles are a lot nicer than I imagined.
We were told that we could not wish for a better donor (apart from a sibling) we have a young, 21 year old male who is CMV negative which is compatible with Oliver.
Oliver will be on a slightly reduced intensity chemotherapy regimen but even so we are under no illusion that it will probably make him ill.
My pregnancy is still going well and we had a 20 week scan which confirmed all is well with the anatomy of the baby so now we know he has not got WAS, no chromosonal defects and low risk for spina bifida - this is great news.
Obviously we are now keen to get Oliver transplanted and home although we are aware that its not an exact science we are hoping he is mr average and we will be home in around 8 weeks.
Will keep you posted
Signing off for now