Cautious Hope

They worked! Those blessed T cells bloody worked!! Mostly...


So it’s with some cautious optimism that we are letting you, our cherished support network know that Ned’s bone marrow disease has dropped from 58% to 0.01% in the 12 days since his T cell infusion - astonishing even the doctors. That 0.01% is not ideal, but it is much, MUCH better than anyone’s wildest dreams for the T cell outcome. Best of all, the much more hardy, tenacious CNS disease (the leukaemia in his spinal fluid) – the part of the disease that would strangle any likelihood of remission and 2nd transplant – has completely cleared! That the T cells have somehow been able to target and kill the majority of his ‘foreign’-looking leukaemia is unprecedented, and we are SO grateful to God for this glimmer of hope at the eleventh hour… though it be still tentative.

Last week, Ned was admitted to hospital with his body’s post-T cell inflammatory response, and the unknowns were horrendously overwhelming. And during the sleepless haze of that awful week, whilst he was in significant pain from the T cells attacking his leukaemia, I was all too aware that it could be a steep descent to a tremendously sad, heartbreaking end. We were thankful to have Seth’s Dad visiting, and now, my parents have flown over (after leaving Congo) to help. Ned was fortunately discharged on Saturday, Seth’s birthday, but it’s been an anxious wait to know if we’d be returning immediately to Tasmania for Ned’s final numbered days, or if we could timidly allow ourselves some hope. 

I can’t begin to explain how the undulating waves of hope, with more crashes than crests, have worn us thin and sunk us into a pessimistic quagmire, which is why our caution precedes us. But as it stands right now, Ned’s disease is radically diminished thanks to those precious T cells, and we’re hopeful that next week’s bone marrow results will continue in this positive trend and show full remission. If this eventuates, we’ll be returning to Melbourne in mid-July and start preparing him for another bone marrow transplant. NEVER would we have thought that this would become the better option. We sit in a puzzled state of apprehension, yet constantly anchored by God’s steadfastness and its transcending peace – torn between grief of putting Ned through a 2nd transplant, and now, the joy that we don’t yet have to face the dire alternative. And we humbly thank God for carrying us through such a dark time, and continuing to walk beside us as we face what lies ahead. 


  “Peace I leave with you; my peace I give you... Do not let your hearts be troubled and do not be afraid.”