As I write this, it horrifies me that Ned's disease is rapidly proliferating, though he still looks so well. It has been for a while now, and this was confirmed by his bone marrow result delivered with tears on Tuesday evening. We partially expected it, knowing already that his bone marrow transplant from Eleanor had failed, but having any small amount of hopefulness entirely extinguished is oh so bleak and heartbreaking.
Thus now, after much careful thought and prayer, Seth and I can confirm the much-unwanted direction of our next steps in Ned's treatment: we have to relocate to the Seattle Children's Hospital in the United States promptly (early May) for Ned to be treated on their CAR T-cell clinical trial over the course of 3 months. These CAR T trials use various methods to remove a patient's T cells, genetically engineer them so they are programmed to attack leukaemia-affected B cells, and re-infuse them into the patient. This is now the best remaining option for a patient like Ned, whose specific cancer seems to be resistant to chemotherapy, because at this stage, the risks of a 2nd bone marrow transplant (this time from an unrelated donor) would outweigh the potential benefits. This particular Seattle trial has been running for several years, putting 80% of patients like Ned into remission, evidenced by their data. This treatment wouldn't necessarily preclude a 2nd bone marrow transplant in future, however given Ned's current disease progression, his treatment history, genetic makeup and type of leukaemia, this is what our RCH medical team is strongly recommending we pursue given there's no viable similar trial here in Australia that is currently entirely open and suitable for Ned (although there are several pending).
It does unfortunately come at enormous, prohibitive cost, and for this, we must humbly ask for some support along the way because we are ever so grateful for how much our village have uplifted us and carried us to this point. We know we are Ned's parents, and he is our responsibility, and we will continue to do our utmost to save Ned's life and raise all our children with love. But though we are exploring every possible avenue for us to finance the upfront cost of Ned's treatment as much as possible, we've sadly found ourselves in the desolate position of falling short and needing to plead for help because we just simply cannot do this alone.
We’ve now very kindly had an offer from Rare Cancers Australia to host a tax-deductible crowdfunding site (but if amount ever exceeds our needs on this site, we won’t be able to reimburse any; rather, we will donate it to cancer research at the Royal Children’s Hospital, Melbourne).