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Jun 7, 2016 Latest post:
Dec 16, 2018
Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.
Timeline: Tuesday, May 31, 2016 - Noticed an issue with Emma's eye Wednesday, June 1 - Saw the pediatrician Thursday, June 2 - Saw the pediatric ophthalmologist, transferred to Lurie's, quick MRI showed a large mass Friday, June 3 - Successful surgical removal of a tennis ball sized tumor Tuesday, June 7 - Received pathology results, CNS PNET Thursday, July 7 - First day of chemo Tuesday, August 23 - Learned that it's a peripheral PNET instead of a CNS PNET, info learned only because we agreed to have Emma's tumor placed in a research repository
Diagnosis: Peripheral PNET, also known as Ewing's Sarcoma, a cancer that normally begins in bone or soft tissue and almost never in the brain, making Emma's case one of only a handful over the last few decades (previous diagnosis: Supratentorial PNET (Primitive Neuroectodermal Tumor) - a rare and malignant brain tumor most often found in young children)
Treatment Plan: 14 total rounds of chemo with targeted radiation (proton therapy) for 5-6 weeks (25 sessions) partway through chemo treatments (previous treatment plan: 5 rounds of chemo, followed by one round of high dose chemo and an autologous stem cell transplant; we had completed two rounds on this plan plus the stem cell harvest)
5 year survival rate: Unknown because there are so few cases in the brain but it's estimated that the survival rate is higher than with the previous diagnosis (survival rate for previous diagnosis CNS PNET: 50-55%)
Disclaimer: Please note that donating to this website, CaringBridge, doesn't donate to cancer research - all proceeds go to the website, not to Emma or treatment of her medical condition.