You know, on previous occasions, I’ve found myself wishing for foresight, for a glimpse of which seemingly-crucial decision will land me where…
But now, I feel fortunate that we can’t see the height of the mountains before we’re climbing them. If I had, I feel like I would’ve just collapsed from overwhelm. Even just this last week, with Eleanor requiring adenotonsillectomy and grommets in a different hospital, was quite the logistical challenge. We’re very thankful that we had superb, prompt medical care available, and are praying for a swift, uneventful recovery, with perhaps improved behaviour and sleep!
Ned has had a vicious and complicated recovery from this second bone marrow transplant. We had assumed it would be more difficult, but it has defied even these expectations… so many needles, transfusions, swabs, side effects, general anaesthetics, trips to theatre, nighttime awakenings; multitudes of medications, considerable pain and nausea, excruciating itch; throngs of new faces, treating teams and an ICU stay (albeit short), myriads of scans, bone marrow aspirates, lumbar punctures and other procedures … so much fear and uncertainty, so little control, and so many deep scars from our time in room 208.
Ned is now finally starting the road to recovery. His gut symptoms were diagnosed as GvHD (graft-vs-host disease), then that was negated, then back to GvHD, then controversy... And after a couple of months of seeming steroid inefficacy for his severe gut symptoms, necessitating IV nutrition and frequent electrolyte corrections, a new drug (at clinical trial phase) was introduced, steroid-weaning was commenced, and thankfully it seems to have elicited a great response in Ned. He’s now enjoying certain foods again (although we do have to actively restrict him to only mealtimes), and returning more and more to his old happier self.
The central line-borne sepsis that landed him in ICU has cleared after 2 weeks of IV antibiotics (and a lot of stress), without removing his indispensable lines, and his kidney function is starting to improve. We’re finally seeing light at the end of the tunnel, thank God. His days, outside of medical routines and requirements, now consist of school lessons, physio (relearning to walk and balance), music / art / play therapy, Lego, card games, puzzles, painting masks, writing letters, reading, listening to music, sometimes napping... oh and once in a while, meeting a famous comedian / author:
Today is Day +70. Add in the 7 inpatient days pre-Day 0 (transplant day), and that makes 77 days that we’ve been separated, tag-teaming; that Ned’s been missing the outside world and his sisters. And nearly 18 months of feeling like we’ve lost ourselves, being away from home and friends, out of our jobs, our old lives and community.
Given all of this, we are so very, very elated and relieved to let you know that Ned’s Day +60 MRD (bone marrow test) has come back completely and entirely clear. No leukaemia, great chimerism. This shows that this 2nd transplant (and all its preceding treatments) has indeed, at this moment, achieved its purpose – praise the Lord!
And now, onwards to Day +100, then hopefully… home.
“The Lord’s compassions... are new every morning; great is Your faithfulness”
- Lamentations 3:22-23