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The results of the bone-marrow biopsy are on the table in front of the oncologist. ‘Charlotte was born with a rare but extremely dangerous form of leukaemia.Sadly her prospects are not good.’His voice sounds flat, rehearsed. He knows I will remember this conversation for the rest of my life.I have been making a game of it by trying to catch her toes. With adults, if after five years the leukaemia has not returned, we consider them cured. ‘There were times when I thought she could not handle it, that the disease would take a wrong turn.It’s harder to say with babies.’He has never used words like remission or certainty. I do not know if I should be happy, or rather how much happiness I should allow myself to feel. I start to shake so strongly that I hold on to a chair. I’m so proud of her, she really did it her way.’I put Charlotte beside me in the car seat and drive away. I cannot believe that she has healed, that all is well and that one day she will walk on those delicate feet of hers. A year ago, on a hot day like this, I gave birth to a daughter.I watch him as he studies her skin as if he is trying to decipher a mysterious hieroglyphic.‘I must tell you something important,’ I stumble over my words. His name is Sammy.’The doctor glances up then bends over Charlotte. At least he survived until he was eight…there is a blog but we can’t find it again, it’s lost in cyberspace. I am scared that death will be too rough for my butterfly girl. To be left with her still body, which will no longer cling to mine. I count the beads of sweat on the forehead of my child. She reminds us that the people we love can leave us just like that. A child is supposed to hold the promise of a future, making up for the fact that we do not live for ever.We need to find out more about him.’The doctor smiles while examining Charlotte’s delicate feet. It unsettles us that there is still no change in her health. Sometimes she seems worse, when the blue tumours on her body multiply and I find them in new places. But mostly I’m afraid of what comes after that, my empty arms. Now my world has shrivelled to a cocoon in which I hide with her. I know by heart the number of T-cells in her blood. One morning in the hospital, at the end of Charlotte’s checkup, the oncologist puts his hand on my arm and says, ‘I would like to take a new biopsy, from her foot.’ I’m not surprised he wants to know more about the stubborn large nodules on her feet.I duck into the first shop to find shelter and notice I’ve landed in a bookshop. We go to the children’s department where we step over a stuffed toy giraffe. It’s a picture book about a rabbit, a duck and a badger who find their friend, a blackbird, dead in the woods. There is still time.* * * * *In my half sleep I hear Robbert scurrying through the house.
Together we stare at the ceiling until her eyes fall shut. Parents always want to do everything for their child, the doctor had said. What all that poison would do to her delicate body? The next morning when I am taking Charlotte for a walk, the sky darkens.
Over the next few days the spots on Charlotte’s pale skin do not disappear; they multiply around her body.
Our doctor does not know what to make of them so he refers us to the hospital for further examination.
She points to a bump on the baby’s back, a soft rosy hill.
She presses it and when she lifts her index finger, the spot turns blue.