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Friend’s Photo Tip Leads to ETMR Diagnosis as Toddler Starts Intensive Chemotherapy

Additional surgery cleared the way for chemotherapy following an initial misdiagnosis.

Overview

  • A friend flagged a persistent head tilt in photos, prompting renewed medical checks beyond an initial viral or ear infection assessment.
  • A CT scan at Bedford Hospital revealed an extensive brain tumour, with pathology on November 22 confirming the rare ETMR diagnosis.
  • Surgeons at Addenbrooke’s removed about 80% of the mass in a 12-hour operation, and doctors warned time was limited without further resection.
  • Following sepsis and ICU care, Alder Hey surgeons used intra-operative MRI to remove more tumour, enabling chemotherapy, with a stem cell harvest and shunt completed afterward.
  • Capri began the first of six intensive chemotherapy cycles on December 20 and remains in hospital as her parents fundraise, with £34,000 raised toward a £50,000 goal.