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
D
xx