Ebony was diagnosed with alveolar rhabdomyosarcoma at the age of 9, in August 2016. She was treated using a combination of chemotherapy and radiotherapy, led by Sheffield Children’s Hospital. However, after several relapses, she sadly passed away in January 2020. Ebony had run out of treatment options.
Ebony first noticed a swelling in her left arm in July 2016. The swelling didn’t go down and so went to the GP, who referred Ebony for a CT scan, two weeks later at Scunthorpe General Hospital. Following the CT she was instantly taken for an MRI scan. A few days later the GP called with news that he had referred her to Sheffield Childrens Hospital. The nightmare then started.
She had a biopsy and was diagnosed with Alveolar Rhabdomyosarcoma. She started chemotherapy just days before her 10th birthday. Further scans followed which showed a change in one of her ribs. Losing her hair for the first time was so difficult for Ebony, it was getting matted and unmanageable and, after lengthy chats, she braved the shave courageously. Radiotherapy to both her arm and rib comprised part of the treatment. Her arm got side effects like a burn which were very painful. After six months of chemotherapy she went on to maintenance chemo where it was taken orally at home. After a year of maintenance, she went into remission and even rang the bell declaring end of treatment.
In May 2018 whilst enjoying no treatment she became the most beautiful bridesmaid for her mum and step-dad, the wedding had previously been postponed because of her illness. These days were bliss, she went back to school, her hair grew back and a sense of normality returned. Then much to our horror in December 2018 the cancer came back, but this time in her abdomen lining. Her body reacted by creating fluid around the growth, this made her belly swell so much that she looked pregnant. A drain was fitted and five litres of fluid was initially drained off. Chemotherapy was started again but available options were starting to dwindle and hope for a cure seemed less. Whilst treatment seemed to help we were still told that there’s a high chance of the cancer returning.
In the Easter holidays, Ebony had her wish of a holiday in Florida including Disney and Universal Studios. It was a fantastic experience, she even had a dry suit donated so she could still swim and not get her drains wet. A few days after turning 13 in September 2019 she had her drains removed as there was no more fluid and everything was stable, but less than two weeks later the swelling was back. This time we had to prepare for the worst, she was terminal. Ebony decided to stop all chemotherapy and spend more time at home. She slowly declined becoming a shadow of her former self which she found so very hard, yet her caring nature remained. On 24th January 2020 she peacefully passed away surrounded by family. We will never get over the loss of our Ebony.
It was a whirlwind to start with. Ebony was diagnosed fairly quick from noticing the lump in her arm in July and starting chemo at the beginning of September. It’s extremely difficult to watch your child go through gruelling treatment and suffer so much as a result of the treatment. It was like a nightmare, a blur, with breaks in between of normality and it would all start again. We now live in a constant new nightmare now that she’s gone.
More treatment options are desperately needed for children and young people in the UK, particularly at the point of relapse. Chemotherapy is so horrible for our children so we need more research to find new treatments.
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A children’s cancer charity dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma.
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