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'Wilms Tumour Research Fund
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Emily's Story

Emily is a Wilms survivor. Prior to diagnosis Emily’s symptoms included numerous temperatures of more than 38.0 degrees over a period of around a year. She also frequently had diarrhoea and was failing to thrive. She was anaemic and had very raised platelets, but her gastroenterologist put this down to allergies. She was diagnosed in A&E in March 2008.

She had woken up with a temperature, but was complaining of pins & needles in her legs, in A&E the abdominal mass was felt. An ultrasound scan in the morning revealed a huge tumour in the place of her right kidney. She was immediately referred to Birmingham Children’s Hospital and within a week had undergone a biopsy, had a Hickman line inserted and had started chemotherapy. Her parent’s world fell apart, but Emily continued to be brave.

She had four weeks of pre-surgery chemotherapy and then a right nephrectomy and lymph node dissection. The histology revealed a stage III high risk, unfavourable histology Wilms tumour.
Emily then commenced a 34 week combination of 4 chemotherapies - etoposide, carboplatin, cyclophosphamide and doxorubicin. She also received 21 days of radiotherapy to the abdomen.
Emily had lots of delays in chemotherapy due to low blood counts, over 30 units of blood and was NG fed. Her treatment took almost a year. Emily was frequently admitted with febrile neutropenia - but still continued to smile. For Emily the worst and most distressing part of all her treatment was having NG tubes passed.

Cancer robbed her family of many things, however it taught them to not take life for granted, and inspired them to arrange many fundraising days and a very successful blood donor day.

Emily's follow up is ongoing and consists of a chest X-ray, ultrasound scan, physical examination, BP check and urinalysis. It initially started off three monthly for 2 years, then 4 monthly for 2 years and now 6 monthly. Although Emily is still much smaller than her peers, she is a happy, confident little girl. She is injected every night with a growth hormone, this will continue till she is 18 years old. They are not sure if her growth hormone deficiency is connected to her previous treatments.  She has been left with right foot neuropathy since surgery (she had a right drop foot initially immediately post surgery) and this plagues her intermittently to different degrees. Her scar across her lower abdomen is very neat; however she does not like peers seeing it. Emily is now aged 10.

Registered Charity No 286669
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