This last fortnight has seen such contrasting extreme emotions – the rejoicing high of brilliant 30-day bone marrow results juxtaposed so starkly with the despairing low of Ned’s current suffering. Let me explain in more detail about what’s been going on and what’s ahead…

What is this result you’re talking about?

Ned showed signs of engraftment at Day +18 (18 days since his transplant on 20th August) but all transplant patients need bone marrow aspirates sent for testing on Day +30, Day +60 and Day +100 to see if any leukaemia cells are making a resurgence at these critical points during this period of high vulnerability to relapse or transplant failure.

What does this result mean for Ned?

Previous MRD tests have always shown (tiny) varying degrees of remaining leukaemia, so this is our best result (down to the lowest recordable amount at molecular level: 0.00000%). It shows that his bone marrow is regenerating purely from the donated healthy stem cells, and at this stage, it seems like the leukaemia has been ablated… finally. However, though this reduces future relapse risk, it does not preclude it altogether. That is an ever-present, life-long risk and concern for Ned. The next test (MRD) will be at Day +60.

Was the CAR-T treatment in Seattle necessary?

Yes! CAR-T, though not successful independently long-term, actually contributed to this result because it reduced his marrow disease significantly (from 58% —> 0.01%) and eliminated his CNS disease… thus allowing him to be eligible for inotuzamab – the miracle drug that finally (and miraculously!) put him into remission in order to have a hopefully-curative 2nd transplant. It was that or palliative care.

Now what?

Now, we attempt to support his body in through the regeneration and healing process, since the collateral damage from a successful transplant can be vast, especially after the cumulative damage on Ned’s little, developing body from years of heavy chemo, radiation, a previous transplant and CAR-T treatment. GvHD (Graft-vs-Host Disease), where the body attacks the foreign cells, is a main contributor to post-transplant morbidity - depending on severity of organ damage, it can range from simple and manageable to severe with fatal consequences, and is treated with immunosuppressants.

Over the last 40ish days, Ned has been suffering from serious GvHD of the skin and gastrointestinal tract, which has only had a minimal response to the treatment with multiple immunosuppressants. Uncertainty prevails, symptoms aren’t controllable, and investigations continue (he is currently have scopes and intestinal biopsies). Because one main immunosuppressant has caused renal toxicity, the steroid immunosuppressant has had to be escalated, and if you are at all familiar with steroid treatment, you’ll be aware that they can cause severe neuropsychiatric effects (irritation, anger, ravenous hunger, misery, emotional lability; adults have reported wanting to die on high-dose steroids). His rage, hunger and personality changes from weeks of high-dose steroids, have been distressing at best, and since his symptoms continue, the prescription now is complete “gut rest” - in other words, we have had to deny this voraciously steroid-hungry, sick 6yo boy’s pleas for food; fasting him with no definitive end point, because sometimes acute GvHD can turn chronic, requiring ongoing treatment. This has been the straw that has broken the metaphorical camel’s back… for him and us. Whilst so many sophisticated measures are instituted to address the suffering from pain and nausea in paediatric patients, it floors me that there is no alternative to the treatment of gut GvHD: hunger-inducing steroids + nil oral intake. Torture, 24/7; the horror of which is behind closed doors and rarely witnessed by any healthcare staff, and only mildly placated by cuddles.

And today... in fact the whole past sobering week... it has all just seemed too hard; many tears have been shed. After wailing heartbreakingly for “just a little bit of porridge?”, he curls up in a foetal position in bed, silently whimpering and refusing to look at us… over and over again. Today, we are not the parents who are feeling victorious and triumphantly battling on; we are broken and are relying on God’s strength alone. Today’s moments have been full of fragility, anguish and raw weakness. Because despite what you may assume of the resilience of a child who has endured more than 4 years of discomfort and pain (not just the collateral damage from disease itself, but additionally, the ramifications of human error – multiple failed IV attempts, accidental medication miscalculations or omissions, theatre delays, burns from leaking chemo, misplaced nasogastric tubes); what you may assume of the parents who have repetitively born the brunt of his anger, misery and despair, who have guiltily had to enforce restrictions or physically restrain with silent tears streaming, it never EVER gets easier. The only thing worse than a defiant child raging against you is witnessing that same spirited child shriveling in defeat, resigned and broken from the numerous lost battles and protests simply to yield a sense of any independence or control. Being socially isolated, constrained to a hospital room with a closed door (and only the same 4 support adults ever allowed in - me, Seth and my parents), separated from beloved siblings, living in a fishbowl of healthcare staff, enduring excruciating pain, nausea, headaches and so many other discomforts, lacking any choice or independence (even going to the toilet) due to muscle atrophy and an attached heavy pole, living at the mercy of visiting healthcare teams or alarms, having medications and procedures enforced, and now, being denied food... it’s just no life for a little boy.

“When You don’t move the mountains I’m needing You to move;

When You don’t part the waters I wish I could walk through;

When You don’t give the answers as I cry out to You;

I will trust, I will trust, I will trust in You.”

Edward Isham