Waiting. In the oncology world, it is never just empty, stagnant time like it is in so many other facets of life. But rather, a mind-numbingly vacuous, black hole filled with apprehension, dread and tension, muffling every other noise of life. Though we're overly familiar with both, the emotional toll of this ever-present oncology reality far exceeds the physical demands… waiting for the next appointment, waiting for the next test, waiting for the next results which have the potential to devastate your child's and your family’s life.
This dreaded unwanted result is where Seth and I found ourselves last week – the bone marrow test positive for residual leukaemia, that we had so been hoping and praying against. It has taken even Ned’s treating team by surprise because it has happened after a gold-standard sibling transplant, with some Graft-vs-Host Disease (GvHD has an anti-leukaemic effect). The ensuing week has been a tortuous road of complex decisions that no parent should ever have to make; all options fraught with potential dangers and an immunological complexity that I can’t do justice to or accurately convey; all of it shrouding several family celebrations - birthdays, anniversary and the start of Lucy's 4th grade school year.
This time last week, we were hurriedly seeking ethics approval and agonisingly consenting for Eleanor to go be readmitted, put back under GA again, and have a tube inserted into her groin to collect more lymphocytes, over the course of many hours, to infuse into Ned… with only a 10-30% success rate. Knowing Ned’s life was hanging in the balance, questions were asked of us requiring emotionless objectivity regarding our children, just as a family gastro outbreak took its physical toll, and we spent hours in weary, sleepless anguish, despairing that God has allowed this.
Today, we’ve just emerged from a teleconference with leading oncologists and cancer researchers in Seattle regarding possible treatment there as the next step, at prohibitive expense, as well as their opinions on alternative developing treatments depending on Ned’s disease course from here (based on his T cell markers, his genetic makeup, his level of immunosuppression and GvHD, and his results thus far). It seems rather dispassionate and cold-blooded to be constantly weighing up various incompatible treatments (one precluding eligibility for the other, etc), balancing risks, and even waiting till disease worsens enough to qualify for further treatments; but we are so thankful to God that there even is another possible option. And after today, Ned’s specialist, Seth and I all feel slightly more reassured about our plotted treatment plan and time course, with Ned’s best interests in mind, based on these experts’ advice. Though one option would be at exorbitant cost, and there are still many uncertainties (which prevents me from giving further details), this I do know for certain: we are currently witnessing an enormous upsurge in cancer treatment technologies developing internationally, not just in Seattle… meaning that in a matter of months, there will be clinical trials emerging and treatments available for select paediatric cancers that would most certainly have been palliated only a couple of years ago.
Ned will have a repeat bone marrow test on the 27th Feb, the results of which we will get the following week. This will be the determining factor on how we proceed, whether locally or overseas. If we have a similar result to what we just had last week, we’re hoping that returning to chemotherapy in a holding pattern may buy us some time before the ideal treatment is approved in Australia, God-willing. And this gives us a slim hope that we can continue to imagine our family continuing on with all 4 precious children.
So after we crumble for a few days, whilst trying to maintain a sense of stability for the other children, we pick ourselves back up and recalibrate to the new "normal", with yet another adjusted frame of reference and altered perspective. And the interminable waiting, while in isolation, begins yet again...