Through icy waters at first, then turbulent, glacial waters infested with sharks, then sticky mud, then impenetrable clay... this upstream swim is becoming more strenuous as it progresses merely by virtue of time passing. The medical side of me often stands aghast in sheer disbelief that this seemingly-fabricated drama continues to defy reason and evidence-based expectations; but being Ned's parents and at the coalface, we've almost come to expect that each unfolding development will reveal unanticipated, maddening twists and turns in our path... and yet, by faith, we must kick our feet & lift another arm to stroke and propel ourselves through these murky, tumultuous waters - simply because we have no alternative.
This past abysmal week has involved discussions with the palliative care team; unwillingly gearing ourselves up for poor bone marrow results and the consequent sombre meetings with Ned's oncology team, likely followed by returning to our home in Tasmania for Ned's final days.
WHAT a shock, then, when we received an early phone call to relay astounding preliminary bone marrow results showing ZERO disease remaining (still awaiting more detailed flow results from Sydney) after 2 weeks of this CD22-targeted immunotherapy! Down from 15%! Another 180-degree turnaround - once again, confounding the treating medical teams and defying the odds. We praise God for this astonishing outcome that has exceeded all expectations, and though we cannot fathom why God would allow any prolonged senseless suffering (in Ned, as well as throughout the world), and this particularly torturous maze to navigate, we thank Him for His mercy in this moment, showing us grace at the 'final hour'. God owes us nought; He is not our debtor, and each blessed day more with Ned is a treasured gift.
Harking thus back to my initial analogy, these results are somewhat akin to finally reaching a small island with a finite water supply and mediocre food, after an epic swim through treacherous waters. Yes, we are on land, a modest refuge and miraculous step forward when the alternative was so dire, but this island is merely a transient stepping stone on the looming path towards a daunting marathon ahead; for a 2nd bone marrow transplant (this time, an unrelated donor) is often more harrowing and complicated, with greater risks and long-term impairments.
From as soon as these preliminary results were known, over the last few days, we and our team have had to immediately begin the numerous pre-transplant tests and preparations, as well as activating the matched cord blood that has been found on the International Registry. Ned will be going into transplant within the next fortnight to start conditioning, thus beginning the time of family separation, isolation, strict infection control, nasogastric feeding and transplant diet once again. It is a heightened time of stress and much trepidation, with many imminent appointments and procedures, including a general anaesthetic for Gilbert to have his right eye's tear duct probed (unblocked) prior to Ned's immunosuppression. Though we acknowledge possible 'compassion fatigue' and our story maybe becoming tiresome, we thank you sincerely for all manner of encouragement and support to date, and we humbly beg for your continued thoughts and prayers - for wisdom in how to explain all of this to our children, for family cohesion, for success of the transplant, for peace in our troubled hearts, saddened by what Ned has to endure once again and the normal boyhood he misses out on.
"Lifting up my heavy heart, held in grace-scarred hands; I am carried in the arms of grace and love divine"