Ellie and Jamie Thompson faced a heart-wrenching situation when their four-year-old son Billy was diagnosed with an inoperable and terminal brain tumor. Initially, the changes in Billy’s behavior, such as falling over and leg pain, were attributed to stress and food intolerances like lactose intolerance. However, a visit to the A&E on November 7 revealed a brain mass, confirming their worst fears.
Billy was immediately taken to St George’s Hospital, where an MRI confirmed he had a diffuse intrinsic pontine glioma (DIPG), a high-grade tumor affecting the brain stem. The diagnosis was particularly devastating for the family, as the doctor, empathetically relating to their pain, informed them of the dismal prognosis.
DIPG is a rare condition, affecting 20 to 30 children each year, characterized by its high grade and difficulty in surgical removal due to its undefined borders. Billy has been given only a few months to live, a reality that has been difficult for him and his family to comprehend, reported Daily Record.
Despite his confusion over the sudden changes in his life, including frequent hospital visits, Billy has shown an awareness of his condition, asking poignant questions about his health and even about heaven. The family is exploring clinical trial options following a successful biopsy, which could provide a match for limited trials in the UK. Despite the grim outlook, the family is holding onto hope for more time with Billy, reported Surrey Live.
Ellie and Jamie, who had both children through IVF, shared their journey in The Jellie Diary to support others in similar situations. After Billy’s diagnosis, their friends set up a JustGiving page to help the family with expenses, as Ellie and Jamie plan to take time off work to care for their children during this challenging period. The funds raised will support hospital stays, treatments, and making memories in Billy’s final months, with any remaining funds donated to charity.
Diffuse midline gliomas, previously known as DIPGs, are a type of primary high-grade brain tumor common in children. They grow in the brain’s midline and cause symptoms like coordination issues, facial expression difficulties, speech problems, and more. Treatment options are limited, typically involving radiation, steroids, and sometimes chemotherapy.
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