The Lottery
The Lottery jackpot is at a record high and many are hoping to have the winning ticket. In the cancer world it is very different. You do not want to win the cancer lottery. The last thing you want to hear is your child is only a handful of kids in North America who is diagnosed with this specific cancer each year. Penn’s case is being referred to the Children’s Oncology Group, a network of nearly 200 hospitals all over North America, Australia and New Zealand to advise us on best practice and treatment options. It’s disheartening and difficult to remain hopeful after reviewing Penn’s pathology results.
When the doctor confirms your kid has high-grade glioma. When the doctor says high-grade glioma is typically referred to as Glioblastoma multiforme. When the doctor doesn’t give you a prognosis because there isn’t one. When you Google Glioblastoma and it’s considered the deadliest human cancer. When you realize there is no cure. When your doctor says it’s a win if treatment and maintenance therapy doubles the lifespan of your child. For Penn, that would be to the age of six. When you’re advised you have to start treatment as soon as possible, which includes both chemotherapy and radiation every day (minus weekends).
When you Google Glioblastoma and it’s considered the deadliest human cancer.
When you wonder if her tiny body can handle treatment. When oncology starts listing the lengthy side effects of radiation. When the medical team rambles on about the side effects of chemotherapy. When they continue listing side effects for both treatments being administered simultaneously. When they denote the difference between temozolomide and veliparib. When you learn about molecular markers, genetic mutations and the difference between on and off study. When you are so overwhelmed with the information you feel like you’re having an out of body experience, observing someone else’s life. When you realize the doctor is speaking to you when they repeat themselves, “do you have any questions?”
Things do not look good. You really can’t get any worse than, non-curable. The average lifespan of for someone with glioblastoma is 6- 18 months. At the same time, Penn has been recovering well. This is where I have to follow my intuition and believe everything will be OK. Despite what the pathology report dictates, and what medical professionals have to say, I cannot let my mom gut be silenced by those around me. I have to cling onto hope no matter what.