At the age of eleven weeks, he was diagnosed with Juvenile Myelomonocytic Leukaemia: JMML.
Statistics for this childhood cancer are grim. As near as makes no never mind to 0% without treatment. 50-60% with bone marrow transplant. And that doesn’t take you into the post transplant journey (which doctors do not talk about at the point of diagnosis).
We were so, so lucky. Nine years on, it still takes my breath away that we saw the doctors we did, when we did. That Tom’s Noonan syndrome was diagnosed by the haematologists at Great Ormond Street months before the geneticists agreed. That their experience in this world of incredibly rare disease had led them to take risks: to wait rather than rush to transplant. And then to apply that experience to make a judgement call on another patient. they told us that they wanted to wait. They thought that Little Man might be one of the very few children to stabilise.
Without the oral chemotherapy and the initial treatment he wouldn’t have survived.
With a bone marrow transplant, he may well have died (it’s a very very risky procedure).
He got the chemotherapy, we waited… and waited…
Little Man Tom has a lot of other medical issues to deal with – he sees many specialist doctors at one of the world’s top children’s hospitals.
But he is nine years old, and still very much alive. The leukaemia stabilised.
Nine years ago, today we were enjoying a supposedly happy healthy baby boy. And yet, my maternal sixth sense was on high alert. I had been nervous, anxious, on edge throughout my pregnancy, and this continued despite post natal checks. I had nothing concrete to base this anxiety on, but something felt wrong. I still berate myself for not acting sooner though I know full well that nothing would have been picked up before it was.
Little Man was taken into hospital on Halloween 2003, for observation due to failure to thrive. Late that night we were called in, and told that the most likely diagnosis was leukaemia with an unrelated congenital heart defect. Time has not dulled the emotional impact of that evening and I suspect it never will.
It is very difficult, after such an experience, to dismiss that maternal sixth sense when it buzzes. I could list a considerable number of events when I have felt it again, put my concerns to the right professionals only to be “reassured” and sent on my way. In each and every case, time has shown that my instinct was right.
So, I may be a little paranoid, I may be wrong.
But I am buzzing again. And I hate it because after nine years of the buzzes being far from insignificant, they now spell worry quite quickly.
Little Man Tom is unwell. He is smiley, and there is nothing especially noticeable about his behaviour. My mother’s eye feels that he looks ill and rather gaunt. Argh… I want to say scrawny, and that is exactly the word that was in my head two days before that JMML diagnosis. With the word scrawny comes a level of fear that is hard to ignore or bury.
Common sense says that this is most likely autumn and winter combined with difficulties getting enough of the right nourishment into him.
Sixth sense wants to check his spleen and liver and get a blood test to check his white cells, monocytes and platelets… I will be having a little feel of his belly this evening because that’s easy, non-invasive and may just give me a little peace of mind.
Sense has already sent an email to the feeding therapist which will hopefully get an answer tomorrow or at the least on Tuesday.
Asking the nurse to come and do a blood test seems over the top.. but maybe I simply need to phone her and talk to her about what’s going on.
My experience of childhood cancer is mild, almost innocent and almost fraudulent.
And yet here I am, nine years after diagnosis, about six or seven years since seeing a haematologist, and the fear of JMML is as raw when it re-emerges as it was back then. Childhood cancer wounds, and it simply does not scar well.
I haven’t written about it this month of awareness, and I’ve experienced a little guilt about that. But if anything, this post may be effective in a different way. When we hear of a family affected by childhood cancer we can be forgiven for thinking that this will mean a dreadful, painful odyssey for the family, but that with luck they will get through.
We don’t get through. We learn to live in a different world, on a different path. However “easy” the journey, however “successful” the outcome, we are wounded, and few of us will ever scar. We just carry that wound with us and hopefully find a way to use it for some good.