Adam's blood counts have always been something of a mystery to me. The number of times we've waited for his Neutrophils to climb back up above 1 before being able to continue treatment. The 'magic' numbers are platelets above 100 and Neutrophils above 1. MIBG therapy supposedly has most impact on platelets and yet these recovered whilst the Neuts were still on the decline, down to 0.4 as of last Wednesday. This low count was responsible for Adam missing his planned slot for priming chemotherapy last weekend.
One could speculate that he has no immune system. His white blood cell count is just dormant. We had a complete blood work-up done on Adam in October (not on the NHS) before starting MIBG therapy. As part of this the lab performed 88 different food intolerance tests, each scored from 0 (no intolerance) to 4 (extreme intolerance). The tests are conducted by detection of an immune response to the introduction of each different food stuff. Adam scored zeros right across the board, 88 of them. Such results are extraordinarily rare. Our practitioner even asked the lab to double-check them. So maybe this lends weight to the hypothesis that Adam has no immune system. But then wouldn't we expect him to get ill more often? We don't live in a sterile bubble by any means, and yet Adam has only had one short-lived line infection since he was diagnosed last July. Bit of a sniffle now and again and a sickness bug that he caught off his sister, but only one proper infection.
So basically I just don't get it. I do know around 0.8 or 0.9 is Adam's ambient level post his induction chemotherapy. On more than one occasion I've found myself asking why 1 is good enough to have treatment, but 0.8 or 0.9 isn't, because I had little expectation that if Adam missed treatment because of such that the situation would be any different a week later. Of course, the doctors couldn't give me an answer because none of them knew. You get to realise when it's just one of those things that are documented in the protocol. An indicator that's been assigned a number by somebody somewhere, not a scientific rule. In the end I'd get the head of the unit to agree to proceed at .8 or .9. It's one of those times when knowing your child, and being able to advocate for them, makes a tangible difference. A shot of GCSF (growth factor that stimulates the bone marrow) and they'd immediately shoot up into the teens; like they were just waiting to be flushed out.
Like I said - a mystery to me.
One could speculate that he has no immune system. His white blood cell count is just dormant. We had a complete blood work-up done on Adam in October (not on the NHS) before starting MIBG therapy. As part of this the lab performed 88 different food intolerance tests, each scored from 0 (no intolerance) to 4 (extreme intolerance). The tests are conducted by detection of an immune response to the introduction of each different food stuff. Adam scored zeros right across the board, 88 of them. Such results are extraordinarily rare. Our practitioner even asked the lab to double-check them. So maybe this lends weight to the hypothesis that Adam has no immune system. But then wouldn't we expect him to get ill more often? We don't live in a sterile bubble by any means, and yet Adam has only had one short-lived line infection since he was diagnosed last July. Bit of a sniffle now and again and a sickness bug that he caught off his sister, but only one proper infection.
So basically I just don't get it. I do know around 0.8 or 0.9 is Adam's ambient level post his induction chemotherapy. On more than one occasion I've found myself asking why 1 is good enough to have treatment, but 0.8 or 0.9 isn't, because I had little expectation that if Adam missed treatment because of such that the situation would be any different a week later. Of course, the doctors couldn't give me an answer because none of them knew. You get to realise when it's just one of those things that are documented in the protocol. An indicator that's been assigned a number by somebody somewhere, not a scientific rule. In the end I'd get the head of the unit to agree to proceed at .8 or .9. It's one of those times when knowing your child, and being able to advocate for them, makes a tangible difference. A shot of GCSF (growth factor that stimulates the bone marrow) and they'd immediately shoot up into the teens; like they were just waiting to be flushed out.
Like I said - a mystery to me.
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