Rachel was four years old when in April 2019 she was diagnosed with Philadelphia positive acute lymphoblastic leukaemia (Ph+ALL), a rare form of leukaemia.
Rachel's mum shares her story…
For several weeks Rachel had become increasingly unwell. We took her to the GP multiple times but were assured she was suffering from a series of viruses and ear infections. She was pale, losing weight, had dark circles under her eyes, was vomiting and generally not herself.
I took her to Bedford Hospital after noticing a small rash on her chest and feeling that something just wasn’t right. There she was seen by an out of hours GP and admitted to the children’s ward with suspected meningitis.
Blood tests showed that her blood count was alarming and we were told it was highly possible that Rachel had leukaemia. She was then blue-lighted to Addenbrooke’s Hospital where leukaemia was confirmed in the early hours of Easter Sunday.
Rachel’s blood showed 90% leukaemia cells and the following day we were told that without treatment she would have just a few weeks left to live. Chemotherapy started immediately.
Life for our family changed forever. Nothing in the world can prepare parents for hearing their child has cancer or for what is to come.
Five days later we suffered another blow when further genetic testing found that she had a very rare form of leukaemia seen in only 5% of children with ALL. The prognosis for this type is poorer and the relapse rate considerably higher. This meant that the treatment regime was going to be much more intense with lengthy inpatient stays for high-dose chemotherapy.
Rachel has received numerous doses of 14 different types of chemotherapy, administered intravenously, by injection and orally. Due to serious, life-threatening side effects she has spent most of the last 10 months as an inpatient. These have included severe mucositis, typhlitis, kidney damage, severe vomiting and diarrhoea, numerous infections and much, much more.
She has also experienced proximal myopathy where she lost the ability to walk as well as severe emotional and behavioural side effects from steroids. This is all in addition to countless transfusions, general anaesthetics, nasogastric tube placements, scans and x-rays.
The list could go on and on but Rachel has displayed immense bravery and courage throughout despite everything she has had to face.
At times she has been unable to walk, run, play, swim or do many of the things that a healthy child is able to. She has lost a large part of a “normal” childhood but has taken everything in her stride. She never complains or questions anything and faces it all with a smile. She is such a caring little girl and at times she has comforted me when she has seen me upset.
It is a miracle her little body has been able to survive this brutal treatment. We have all been utterly shocked at the toxicity of treatment for all children suffering from cancer and at the chronic lack of funding for childhood cancer.
There are only a few types of chemotherapy drug that have been specifically developed for childhood cancer and many of those used regularly were first used over 40 years ago. During our journey, our family have also met families of children suffering with cancer for which there is no cure.
This all has to change and is why we have set up Rachel’s Rainbow Dashers. The money we raise through Rachel’s fund will go towards research into better, kinder treatments for childhood cancer and to help find cures for all types of children’s cancer. We hope that in the future children will not have to suffer as Rachel has.
OUR 12-IN-12 CHALLENGE
We are Rachel’s Rainbow Dashers and we’ve set ourselves the slightly crazy challenge of completing 12 marathon challenges in 12 months.
Why 12-in-12?
In the UK 12 children and young people are diagnosed with cancer every day. Research specifically into childhood cancer is very underfunded because it's seen as rare in comparison to adult cancers. It isn’t rare, and the new, kinder treatments for children’s bodies need to be developed.
It is a miracle Rachel’s little body has been able to survive this brutal treatment. Her parents have been utterly shocked at the toxicity of treatment for all children suffering various forms of cancer and also at the chronic lack of funding for childhood cancer. There are only 4 types of chemotherapy drug that have specifically been developed for childhood cancer and many of those used regularly were first used 50 years ago. During this journey, Rachel’s family have also met families of children suffering with cancer for which there is no cure. This has got to change.
The money we raise through Rachel’s fund is to go towards research into better treatment for children with cancer and to help find cures for ALL types of children’s cancer with the hope that in the future, children will not have to suffer as Rachel has.
- It’s the biggest killer of any childhood disease
- Only 4 new drugs specifically developed for childhood cancers have been approved since 1980 compared to hundreds for adult cancers
- Over 95% of childhood cancer survivors will have a significant health issue by the time they are 45
WHO WE ARE. WHO IT’S FOR.
We’re doing all this for Rachel and all the other child superheroes battling cancer. Rachel means so much to all of us. For some of us she is family, for others she's our child's best buddy, and for all of us she's our biggest inspiration.
We are mums, dads, grandparents, children, friends, and anyone touched by Rachel’s story and our cause. The group is growing and growing, and each event offers different levels of participation so everyone can take part (not just the crazy people doing all the full marathons!)
Seeing Rachel battle a rare form of leukaemia since April 2019 has been heart-breaking and awe-inspiring. She's a warrior and we want to do something in her honour. Big, ongoing challenges that will push us physically and mentally. No matter how tough we find the challenges month after month, it's not a fraction of the challenge Rachel and other children with cancer are facing.
WHY MARATHONS?
It's a marathon, not a sprint. This is a phrase Rachel's family hears often from the consultants.
From 26 mile walks and water marathons, to 24 hour dance-a-thons - each challenge in itself will be a marathon not a sprint. Literally!
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You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Rachel's Rainbow Dashers so that your donation is allocated to the correct fund.
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