Tuesday, 29 May 2012

A brief update ...

Sorry that it's been a while since I updated, the truth is I simply haven't felt inclined. I have no good news to impart. Since returning from America we have discovered that Adam has significant bone marrow disease, to the extent that the vaccine trial we had targeted in the US is not a viable option at present.

Adam finished a round of Temozolomide and Irinotecan combination chemotherapy on Saturday. We must now make a decision about what to do when his blood counts have recovered, a process that should take two to three weeks. This chemotherapy might reduce his disease, but there is no guarantee that it will even halt the progression. We could do a second round with the intention of rescanning afterwards, or elect to move to a potentially more potent combination straight away. The downside of this, of course, being the impact on Adam's quality of life and the potentially catastrophic impact on his blood counts that could leave us with very few options even if the chemotherapy itself proved effective. We have to remember that Adam has already been massively pre-treated, having been on continuous therapy for nearly three years.

Thankfully Adam remains pain-free and appears fairly well in himself. He was a bit battered after the bone marrow extraction and surgery to fit a new central line, but tolerated chemotherapy well apart from sporadic nausea during it, and some diarrhea once it had finished.


  1. Hi Nick,

    Not great news, but hoping for better soon for you all, you so deserve it.

    Thanks for updating us, must be tough at times.

    Take care
    Antonia xx

  2. Often reading your blog I want to swear a great deal. I am not normally much of a swearer. I am not one for prayers either but Adam is in mine. I hope for better things ahead for you all. x

  3. I have nothing useful to add but had to post to let you know that I'm thinking of you guys loads. If I can do anything useful, please let me know.

    Em x

  4. Hi,

    I don't know you or Adam but today I send him a small present after seeing his lovely smiling face on postpals. It's nothing big but I hope that this brings him kind of happiness and it arrives soon. Best Wishes, Anna xxxxxx