The rollercoaster ride continues...
Ned’s bone marrow results this week weren’t as we were hoping. His marrow disease multiplied by a log-fold in 10 days - to 0.12%. Nasty, insidious creature that leukaemia is. This is despite the remaining cells expressing the right protein! Yet again, Ned has stumped the team.
Fortunately his CNS is still negative (ie. his spinal fluid is clear of leukaemia cells) - a significant detail because resultantly, there’s one more immunotherapy agent he can possibly have in Melbourne to achieve full marrow remission (so he can have a hopefully-curative 2nd transplant). If his CNS relapses, however, this agent will not work, and we thus shall be doing another 180 in what we are envisaging ahead.
So it’s a race against time between his marrow disease proliferating so much that it spreads back to his CNS, and arriving back in Melbourne on the 18th (after leaving Seattle on the 16th) to start this immunotherapy quickly before that happens... with quite a few more details and complications in between, which I'm having an ongoing discussion about with Ned's various specialists.
I know it must seem like we keep ‘pulling rabbits out of the hat’. Sometimes it seems that way for us as well. To grasp at yet more proffered hope, then have that withdrawn repetitively is just exhausting and emotionally all-consuming. Once again, for the umpteenth time, we find ourselves in the distasteful position of an uncertain future - even just one week ahead - and thus what we need to prepare ourselves or our children for. To cling to the possibility of another “last” treatment working, or to just let go; with nothing but Ned's best interests at the forefront of our priorities. Ned’s results seem to just keep confounding us and our team, and swinging us around in all extreme directions. From being extremely sick (with seemingly very little time left), to a miraculous response, to now another downhill - when this time, the expectation was that the positive response would continue. His body is a mystery - as, I suppose, it should be. Just God reminding us that we don’t know it all, I guess. And I write this after another night of a hospital admission for cause unknown.
We count it as a blessing, however, that we've been able to enjoy some sunshine and hospital-free days in Seattle with my parents since they arrived...
But for now, there is no answer and SO many clouds. Like I've told my weary self time and time again, only God knows. This, however, is certain: the next week is critical - desperately hoping and praying for no CNS relapse before we arrive back in Melbourne next week - directly to Royal Children's Hospital, after 26+ hours of travel.