Izzy, now aged 20, was diagnosed with orbital parameningeal rhabdomyosarcoma in 2004, a week before she turned 4. She is a survivor but suffers from extensive long-term effects as a result of her treatments.
Like any normal toddler, Isabella spent quite a lot of time scrabbling around on the floor and one day, whilst at her grandparents’ house, she bumped her head on the kitchen table. Isabella didn’t cry and the bump didn’t seem too serious so the family continued as normal. The following day however, a swelling started on the side of her head by her temple and over the course of a week, became much bigger. Naturally her parents became worried and sought medical help at their local doctors surgery, however, the GP was unsure what might have caused it and after checking Isabella over for signs of further damage, provided the family with a course of antibiotics. To be on the safe side, her parents took Isabella to the dentist and the optician for general check-ups and both were passed with nothing serious noted.
Throughout the course of treatment we felt safe at the Royal Marsden and contained in our chemotherapy world. Once treatment ended, we felt lost and alone. The anxiety about the threat of relapse was difficult to cope with. However, 15 years later and she is still here.
The transition in to adult care has been difficult and we would like to see changes in this area. There is no support and no one on the end of the phone. Multiple consultants are involved, rather than one, which is a nightmare. Unless you have a social worker you are responsible for getting them all talking about the long-term side effects and the necessary actions. For example, Izzy needed eye surgery and the eye hospital needed a letter from Great Ormond Street about pre-op and post-op management and we had to co-ordinate it.
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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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Charity Number : 1164253
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