Day 29 Childhood Cancer Awareness Month. Emma’s story; Rhabdomyosarcoma.

As this is the last story I’m sharing for CCAM 2018 there was only one it could be. If you know ANYONE who has been through treatment for cancer in the last few years, regardless of their age, the chances are they had a unified goal. That goal is to ring the end of treatment bell.

I have always admired the Payton’s and we sponsored Bell Number 50 a couple of years ago in memory of my Grandad Terry.

Here is the incredible story of how they used their experience as childhood cancers parents to start one of the best known cancer-related charities in the country today.

Tracey Payton shares today’s story;

“Hearing the words, “Your child has cancer” is unimaginable for any parent. To then be told that they face months, or even years, of agonising treatment is beyond belief. In September 2013, we were told that our beautiful, happy 8-year-old daughter had a rare form of cancer called Rhabdomyosarcoma, which had wrapped itself around her cheekbone. Following this, she endured months of chemo, an 8-hour operation and NHS funded Proton Beam Therapy at ProCure in Oklahoma. At the time of diagnosis, the end of her treatment seemed like a pipe-dream.

Flying to Oklahoma and being so far away from our support network of friends, family and Ward 84 at Royal Manchester Children’s Hospital was a daunting prospect, but we decided to make the most of our time there and started to look on the internet at ‘things to do’ while we were there. It was while we were online that we came across the ProCure ‘End of Treatment Bell’. It was a brass bell which had been placed by a family who were treated there, and everybody got to ring it at the end of their treatment. We couldn’t wait. This was our target; this was our hope; this was our goal.

Emma had 23 rounds of PBT and rang the bell on March 5th, 2014.

When we returned to RMCH for Emma’s penultimate chemotherapy session, we showed Emma’s video to Helen Jackson, the ward manager. She loved the symbolism of the bell and agreed to use it if we had one made. Emma was the first ringer of the bell on April 9th, 2014 when her last chemo ended. We had another made for the Day Case Unit so that children who weren’t having treatment as an in-patient could also celebrate the end of their treatment.

Two months later, we attended a fundraiser and met Diane, who runs the Beads of Courage programme in the UK. We introduced ourselves and told her how much we loved Emma’s beads and how grateful we were for them. Afterwards, we showed her the video of Emma ringing the bell and she offered to help us to place them into children’s hospitals via The Maria Watt Foundation.

In September 2014, we were ready to send out our first bell. Initially, we offered the bells to children’s oncology units, but it soon became apparent that adults wanted to ring them too and so we extended our offer to all cancer wards.

Four years on, we have sent out 175 bells to wards all over the UK, Australia, New Zealand, USA and Dubai. We have raised around £40,000 which has been used to fund further bells. We receive thousands of photos and videos to share on our Facebook page, with such wonderful messages about how the bell gave families something to aim for. We are thrilled that our little idea gives hope to families every day and that it gives them something to aim for. We are forever grateful for the support we received and continue to receive.

Thank you

Published by

diaryofanoncologymum

I'm a 34 year old Mum of two from Liverpool. My son Jack was diagnosed & successfully treated for a rare blood cancer called Langerhans Cell Histiocytosis in 2014. He has recently relapsed so I have decided to share the journey. My reason for being so open this time round is three fold; I want to raise awareness of childhood cancer, I want to reach those parents & families who are just getting a diagnosis & (selfishly) I find writing therapeutic and feel that sharing the story will help me get my own head around things.

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