God knows

It is with great pain and sorrow that I write this update. Over the last 6 days, Seth and I have been confronted with the turmoil of having to make an excruciatingly distressing decision. Not only did symptoms and a comprehensive scan early last week divulge that Ned’s cancer has progressed exponentially (now with increasing bone marrow disease, non-responsive central nervous system disease, and solid organ infiltrates, causing some bony erosion); but shockingly, his bone marrow test revealed that his leukaemic cells have mutated and are no longer expressing the right target for the incoming new T cells (with many finer details in between). A catastrophic blow. Our last option, with now only minimal chance of curing his rapidly-advancing cancer.

Knowing the requirement to stay grounded at Seattle Children’s Hospital for at least 2 weeks post-infusion because of its significant side effects, accepting the T cells brings the great risk that Ned will never return to his beloved Tasmanian home and friends, who he so desperately misses. On the other hand, declining these T cells (along with their tiny chance of bringing remission) means we leave Seattle now so that we can get Ned home for his remaining few weeks-months. We will struggle to forgive ourselves for the unwanted outcome either way - wanting the best for Ned, but all too aware that this 6yo can’t comprehend the severity of his disease, nor the implications of either decision. Choosing “the lesser of 2 evils” has never been such an apt description, and at such a pivotal moment desperately needing mental clarity, we have never been so exhausted and deplete.

6 days of crying out to God for mercy and guidance.

6 days of tearful, resigned deliberations with the members of his medical team.

6 days of watching Ned compliantly accepting his abnormal routine of endless medications, daily hospital appointments, procedures, constant nausea and pain; the atrocious physical toll; weighing up his quality of life at the moment.

6 days of sleepless moaning shrouded by the private hood of nighttime.

6 days of wretched helplessness, watching our children playfully interact as though nothing is wrong; watching Ned striking the fine balance between normal energetic, imaginative, playful, and terminally ill.

6 days of trying to distract our minds from the colossal ramifications of either decision we make.  

6 days of wrestling with the sudden stark, blunt reality of mortality, and the vast hole it will leave in our family. 

6 days of grappling with finding the right words to gently explain this nightmare to our children.

6 days of trying to soak in every moment, every touch, kiss and hug, and entrench them deep into our souls’ memories.

6 days of knowing the end is nigh; the intricacies of which are only known by God.

Short of a miracle, there is nothing more we can do for our darling Ned, and my heart aches and aches and groans and pleads for another lifeline. Just a little bit more hope.

After much anguish and turmoil, Seth and I have decided to leave everything in God’s hands; so this morning, Ned is having his T cells re-infused. We don’t have unrealistic expectations of a medical miracle, and acknowledge that there’s every chance they will do nothing, and Ned’s disease will progress so quickly in the next few weeks that he won’t make it home. But we came here for the cells, so given he’s clinically stable, we’ve decided he will get the cells, come what may.

Though there is so much unknown right now, this we do know: God is sovereign over Ned’s cancer. The battle is His, and we are helpless in this. This horrid situation doesn’t disprove His existence and love, and though we waver, doubt and rail against Him oh so often, our souls feel more stillness and peace knowing how treasured Ned is to our Father. And He knows intimately the pain of watching a child suffer. God knows.

“Though I walk through the valley of the shadow of death, I will fear no evil; for You are with me...”