Diagnosis: Alveolar Rhabdomyosarcoma
Story shared by her mom in 2008.
Deep down, I understand why God wanted Ali back. I know that I want her back every single day, because the world is a lot less bright without her. Ali was infectious, not in a loud, raucous way—but in a kind, funny, happy-go-lucky, quirky way. You just wanted to be around her. We were living in a happy bubble, when our world came crashing down.
Ali had just turned 15, and a lump on her arm, previously thought by everyone including our doctor to be nothing, had grown quite large. Even after the MRI, we were sure it was nothing… but when they mentioned biopsy, my heart began to sink. Our worst fears were confirmed six days before Christmas 2002. Cancer. Alveolar Rhabdomyosarcoma to be exact.
Two days later, we were on a plane to Mayo Clinic, where there were bone scans, MRIs, CT scans, PET scans, blood work…and on and on. Then the meeting with the doctors where we learned her hair would fall out, she probably would never have children and oh yes, there was one girl who made it all the way through college… one girl. That is how she phrased it. Ali and I just looked at one another and didn't say anything.
The next two years were filled with highs and lows; optimism and utter devastation. It's hard to understand unless you've been through it, but they were also filled with inexplicable joy, spontaneity and an acute understanding of the meaning of life. Two years later, almost to the day, of when our journey first began, Ali started to develop numbness in her jaw and her bones were very achy.
For the first time, she cried from the pain, and I knew she must be really hurting. We returned to Chicago for the last round of tests before a stem cell transplant, but the news was not good. The cancer had spread through her bone marrow and this time, we truly had no hope for a cure. Two months later, her brave battle ended and my biggest battle—living without her, began. I could have written a book on her attributes, but on her headstone, I chose these four words: beauty, strength, humor, grace. That was and will always be, our precious Ali.
Thirteen thousand children will be diagnosed with cancer this year. Thirteen thousand new families will have their lives turned upside down and their greatest fears realized. I don't want people to feel guilty-- I want them to feel grateful. Grateful, aware and generous, so that we can stop this thing.