Familiar Anguish


“Prepare for the worst, hope for the best.”

What words to hear, process, digest and incorporate as foundational building blocks for our new transient life with 4 naïve dependents. And exactly how to follow this instruction when it's your child's life in the balance? We’ve been here before, but in a different country... It’s a dark abyss that we’ve been intermittently toeing the edge of, but now that very edge is starting to perilously crumble, and every single infinitesimal part of my soul is clinging on, protesting vehemently, willing the earth to stop shaking so we can climb back onto solid ground. The solid ground where we have 4 healthy children, and we’re living the reality of normal, busy family life, school and work. Oh how we desperately long to wake out of this nightmare. And 'nightmare' is a fair description… for no imagined fictitious chronicle could possibly conjure such extremes of emotions in rapid succession. And today, the 25th July, marks 4 years of this cancer battle and its harrowing impact. 

The stress of packing up our Seattle house, farewelling our new dear friends, traveling 32 hours (with a vomiting, croupy baby), and landing squarely back in the 'temporary' medical-home city, to new accommodation (and immense generosity, might I gratefully add), and starting with a hospital admission was arduous and exhausting… although it would have been a lot worse had it not been for our seat upgrade on the 16-hour LAX-Melbourne flight and my parents’ packing assistance and accompaniment in travel.

Thankfully, Ned's immediate testing on arrival revealed that his CNS had not relapsed (ie. his spinal fluid was still clear of leukaemia); on a more sobering note, however, it also uncovered another massive disease proliferation in his bone marrow (from 0.12% to 15%) - even despite evidence of circulating active CAR T cells targeting his prolific CD22-marked disease. The reason for their total ineffectiveness and lack of longevity in Ned’s body is a medical mystery defying even the world's CAR T experts. It also means that the likelihood of success from the CD22-targeted immunotherapy that was planned is very low – given that not only have the CAR Ts not killed it, but more importantly, that the disease has proliferated so aggressively in a short time.

So yet again, this ominous chasm stretches before us, and in no way can we mentally prepare ourselves for what’s ahead… whatever that may be. No loveliness can erase our background despondency. Ned seems well in himself still, and went ahead with starting the immunotherapy course (weekly infusions) last Friday, and will have another dose at the end of this week; followed by another bone marrow test next Wednesday. This will be a crucial determinant of where we focus our management from then on, whether with a curative intent (towards bone marrow transplant), or palliative.

Such uncertainty and unknown ahead; the feelings of impotence and grief are so palpable... but yet though the word 'frailty' was on the tip of my tongue, it is not so. We cling to our ever-present, steadfast Lord, who, knowing this same pain, still goes before us and holds us through whatever brokenness, sadness and despair we feel, infusing us daily with the peace and strength we need to parent each of our four beautiful children through this hell. 

  “It is God who arms me with strength and keeps my way secure...”