Rachel's story
Rachel is six years old and has leukaemia. For the last two and a half years she has been through extremely hard treatments and on 24 August 2007 her treatment finished. Her parents, Paul and Alison, believe without Leukaemia Research, Rachel would not be here today.
Message from Rachel's mother
Rachel Smith was diagnosed with acute lymphoblastic leukaemia on 11 February 2005, six days before her fourth birthday. Up until diagnosis her symptoms had been non-specific. Her mother Alison says: “She just wasn’t quite herself, she complained her feet were sore and didn’t want to walk; she had no energy and was very pale and she had three tiny blue bruises on her body, which over a three-week period hadn’t changed or faded.”
Her parents became more and more worried and when Alison finally took Rachel to her GP they were sent straight to Leicester Royal Infirmary. Following diagnosis, Rachel endured two and a half years of treatment, which ended on 24 August 2007. But while Rachel is now doing well, it is only after five years of relapse-free survival, which in Rachel’s case is April 2010, that her parents Alison and Paul will be able to start to believe she might be cured.
Alison says: “The staff at the Leicester Royal Infirmary were fantastic but 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 truly you can't if you haven't been through something like this.
“It is a really hard to watch your child being tortured by medication: to watch her in such pain; to watch her become obese in six weeks then vomit it all away again; to sit astride her as she goes into septic shock, vomiting 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.”
Unfortunately, Rachel’s prognosis was not as her parents 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 patients and those close to them.
The MRD test has been developed by Leukaemia Research over 20 years. Following early lab-based ideas and then feasibility studies, this test is now undergoing clinical trials across the UK. The MRD test detects leukaemic cells, which cannot be detected under conventional microscopes – the traditional method for diagnosing leukaemia.
Alison says: “Rachel had intensified treatment and happily she is doing extremely well. Each MRD test costs £600, funded by Leukaemia Research. The trial will finish in 2009 and Leukaemia Research is 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. Friends and family have helped fundraise and last November we organised a ball which raised £70,000 for Leukaemia Research – our way of saying thank you to a charity which is very dear to our hearts.”
Alison Smith.
www.caringbridge.org/europe/rachel
www.rachelsmith.co.uk
