|  | | |  | Message from Rachel's mother |
 Our daughter, Rachel, was diagnosed with Acute Lymphoblastic Leukaemia on February 11th, 2005, 6 days before her 4th birthday. She has endured two and a half years of tortuous treatment, which is due to end on August 24th 2007. Then we wait until 2011, and if it hasn’t come back by then, we can start to believe that she is cured.
When I say her treatment has been tortuous, I mean it wholeheartedly. People say to us all the time, "I can't imagine what you have gone through" and I think that is quite right, truly you can't if you haven't been through something like this. It is a really hard thing to do, to watch your child being tortured by medication: to watch her in such pain; to watch her become obese in 6 weeks then vomit it all away again; to sit astride her as she goes into septic shock, vomitting into her oxygen mask, as you hear yourself shouting "stay with us, Rachel, stay with us;” to watch her lose her hair - twice; to watch her cry when she catches sight of herself in a mirror; to carry her into hospital after she has passed out from a brain seizure, not knowing if she'll be coming back home; to know that the medicine you are giving her might give her all sorts of side effects that would be horrific in themselves. And to know that Rachel just might have to go through it all again.
Fifty years ago, children who were diagnosed with leukaemia faced an almost certain death. Now, thanks to better treatment, only 20% will suffer that consequence. “Only?”
Rachel is unfortunately one of the children whose prognosis is not as we would have hoped. She was diagnosed as being ‘high risk’ after the first crucial 28 days of her treatment. This high risk diagnosis is derived from the test for Minimal Residual Disease (MRD), which is proving to be an very accurate predictor of future relapse. Relapse, of course, is the fear of all cancer sufferers. The MRD test was initiated by Leukaemia Research 20 years ago, and thanks to Leukaemia Research, after early lab-based ideas and then feasibility studies, this test is now in clinical trial across the UK. The test detects leukaemic cells which would not have been detected under the microscope, which is traditionally how leukaemia is diagnosed and treated. As a result of her high MRD status, Rachel’s treatment was increased to the maximum treatment protocol available, and I cannot express how thankful we are that this test was available, and her treatment subsequently increased. I feel sure that our daughter now at least has a chance of being cured, which may not have been the case without this test. Since the trial began in 2003, 0% of children diagnosed as low MRD have relapsed. In otherwords, 100% of the children who have relapsed, have been high MRD. This shows how crucially important this work is.
Each MRD test costs £600, funded totally by Leukaemia Research. The trial will finish in 2009 and Leukaemia Research are trying to get the MRD test adopted as standard treatment for all children with leukaemia. Meanwhile, Leukaemia Research is already researching ways of performing the MRD tests more cheaply, and looking to see if it will be possible to extend its use to adults affected by leukaemia.
So, you can see why we want to somehow try to repay this charity, for saving our daughter’s life. We hope. We are organising Rachel’s Great Banana Ball, in aid of Leukaemia Research on November 24th 2007 at Rushton Hall.
Alison Smith.
www.caringbridge.org/europe/rachel
www.rachelsmith.co.uk |
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