Five days is a long time

Wow. Five days is a long time.

Saturday night was an incredible evening. Adam’s Appeal Ball at Epsom College was a fantastic event and both Alison and I thoroughly enjoyed ourselves. I deliberately held back the news about Adam’s bone marrow for a few days because I wanted to announce it on the night. It went down well.

That was last week. We’ve moved on. We are on the verge of a (not totally unexpected) failed stem cell harvest. We’ve been discussing with the doctors what happens next; chemotherapy, another stem cell harvest attempt, surgery, MIBG therapy.  

I’m not sure that I’ve previously managed to convey just how critical every procedure is from now on. Perhaps the easiest way is to tell you about the exchange we had today with one of the doctors. Adam’s treatment plan is now off-protocol. It is no longer standard-of-care. So I asked what was the standard for a child in Adam’s position. The answer? Palliative care. It has served to focus my mind. It’s not like chemo where they keep going, change the mix. If Adam’s stem cell harvest fails again the likelihood is we are done as far as the UK is concerned. Major tumour surgery obviously carries with it certain inherent risks. If MIBG therapy fails to clear the bone disease, again we’re probably done as far as the UK is concerned. There will be no high-dose chemotherapy and no stem cell rescue (transplant) for Adam.

For those of you reading this that have seen Adam over the past few months; take a moment to reflect on how he has appeared to you, and then reconcile that with how best-practice medicine would deal with him. It’s almost impossible to believe. Yet that is the reality of the situation. 

Of course we can’t, and won’t, give up. We retain a positive attitude towards the challenges ahead. We are going to get the stem cells we need. The chemotherapy is going to keep the disease at bay. Surgery will be a complete success. MIBG therapy will clear enough bone disease to get Adam to minimal residual disease and allow him to progress to high-dose and transplant. In 6 months or so we’ll be ready to take Adam for immunotherapy.

However if things don’t go to plan; if the UK has no options left for us; we will spend every penny we have raised and everything else we have besides to try to beat this thing. That my beautiful little boy, Adam B, is a promise.