Desmoplastic
Small Round Cell
Tumor Charity
Cole was an incredible, active 5 year old when his mum first discovered a lump on the side of his stomach. A few days later, when it didn’t disappear his mum took him to see a paediatrician. What followed was a same day ultrasound and CT scan (something that definitely doesn’t reflect the standard experience, which Cole’s mum was very grateful for) the results of which led to an admission to the paediatric oncology unit at St Louis’ Children’s Hospital.
Cole was diagnosed with Ectomesenchymoma and began intensive inpatient chemotherapy to attempt to shrink the tumours. After 4 months of treatment, the local surgical team told them that his tumours were inoperable but a recommendation by another family led to Cole’s mum seeking a second opinion at Memorial Sloan-Kettering. It was there in 2007 that Cole had a complete resection and got the updated diagnosis from the tumour pathology of Desmoplastic Small Round Cell Tumour. After surgery Cole underwent whole abdominal radiation at the recommendation of the New York team.
Following surgery Cole was cancer free for three incredible years. Despite undergoing such intensive treatment, he was healthy and had no lasting side effects. He went on to skip a grade, win spelling bees, excel in sports and theatre, as well as participate in gifted programmes.
In September 2010 routine scans revealed two small spots of DSRCT recurrence, and guided by their team in New York, Cole and his mum headed to MD Anderson in Houston to develop a plan of attack. Cole remained under their care until 2013, where he was treated by Dr Pete Anderson. He had HIPEC surgery, removing all new disease and washing the abdomen with heated chemotherapy to attempt to kill any microscopic disease. Cole had a tumour in his liver that was considered inoperable due to portal vein involvement. This was treated with embolization and targeted radiation. Cole also participated in a T cell study for over a year, where he experienced no side effects and stable disease. Throughout this Cole continued both to attend school and to play sports.
In 2013 Cole’s team attempted surgery to remove part of his liver (and with it the inoperable tumour within) in order to get him cancer free for a second time. It was a surgery that was successful, but within a few weeks Cole was re hospitalised and transported by air ambulance back to Charlotte due to post-surgical complications. Cole remained in hospital until June 2013 when a repair surgery was attempted. Unfortunately, irreparable complications arose and Cole then spent several months in critical condition in ICU.
Despite, these complications and everyone’s expectations Cole continued to defy expectations and survived until 2015, becoming well enough once again to travel, to make memories and to return home. Cole died at home in his mum’s arms in August of that year, nearly nine years after his initial diagnosis.