In my wallet, I carry a photo of Henry and Huck. In fact I have several – like most parents. But there is one always at the top.
It’s been there since before Christmas in 2012 and it’ll stay there for a long time. I haven’t got a digital version of the photo (this one is scanned and grainy).
It was supposed to be a fun Polaroid – taken at the school’s winter festival.
Originally I kind of liked the boys’ disinterest in contrast to the surrounding glitz. I don’t mind that it’s fading and getting a little tattered. But now I like it for different reasons.
In the photo Henry looks small and tired. And that’s because he was. Catching the mood, Huck looks unimpressed. Henry’s half-smile speaks volumes about that time. He was putting a brave face on several weeks of winter bugs that he couldn’t shake off and he was dogged by a consuming fatigue so he struggled to walk the short distance to school each day.
About this time, he banged his leg at a pre-Christmas party and was in agony. We didn’t realise that his bones were filling with mutated white blood cells that, far from defending him, were killing him.
But now I like the photo because it reminds me of how far he’s come. Everyday Henry gets taller and faster and has ever more hair (his mother refuses to get it cut after its loss).
And this week Henry is exactly 18 months – that’s halfway – through his “maintenance treatment”. At 3 years (2 years for girls), this is the longest phase of the treatment.
The clinical trial that Henry’s part of seems to have been good to him. He doesn’t have monthly injections of the chemotherapy vincristine nor the horrible steroid dexamethasone. Everyday we hope that the treatment is doing enough to stop the return of the leukaemic cells, and we celebrate the relative normality of H’s life.
From time to time we get reminders not to be complacent. He still doesn’t spring out of bed in the mornings, which is sometimes scary, but he doesn’t want to lie down in the street either. Winter is not a good time to have severely reduced immunity. Early this month, H came into contact with someone with a suspected case of chicken pox which sent us scurrying to the oncologists. He was given two syringes loaded with chicken pox antibodies extracted from the blood plasma of donors. This is not something you want to do lightly. But risks and benefits have taken a different meaning for us. And he is well.
Everyday I look at the little, pale, tired boy, in the picture, think of the hair loss, the chemically red-tinged chemotherapy skin, the theft of his speed, the dripped-in and fought-over medicines and all the other complications he has borne.
And then I look at him now, halfway through maintenance with his hair and his cheeky grin, infectious laugh and his energy.
I like that tatty photo because it reminds me of distance travelled and gives me hope.