It’s been just over a year since our daughter’s diagnosis. What a year it has been. Both the worst and the best year of our lives. She is in remission. Next month will mark the one-year anniversary of her bone marrow transplant. That’s a banner date in so many ways. Most importantly she made it here. It also means that she may contact her stem cell donor. I am hoping he will respond. How I would like to thank him.
Our daughter is 24. She was diagnosed with an extremely rare and aggressive form of cancer. So rare in fact, that there is not a standard treatment protocol. I remember when we were told…it was the chemo I was most afraid of for her. Losing her beloved ponytail. I had no idea. Now I realize the dreaded chemo is liquid gold. It saved her. As did the stem cells of a complete stranger. So many miracles.
My husband and I responded to our daughter’s illness in completely different ways. He adhered to the “no googling” rule; I, on the other hand read everything I could. I didn’t understand the science, but the statistics terrified me. We reached out for help. We needed a professional to help us cope, keep our strength and dumb down the science. A psychiatrist became our lifeline. She suggested (and took it upon herself to find) a professional researcher that could find out which doctors were doing which treatments around the world. We would take our daughter anywhere that could heal her. We reached out to all our friends, who reached out to all their friends. The answers came in and we soon realized we were at the right place with the right doctors for her disease. Thank God. We could live knowing we searched far and wide to find what would give her the best chance. Emotionally, that was an enormous plus. That aside, we could focus on something we could “control”, her new hospital “routine”. Trying to keep her motivated, yet distracted from the treatment, and, most importantly, never allowing her to feel alone. That became the family mantra.
Before her month in isolation, we decorated her hospital room with things from home. We snuck our dog in for hugs in the lobby (we did get permission), friends visited, we brought meals from home. Our family of five came together for dinner at the hospital whenever we could. We became her roommates, cheerleaders and advocates. If one thing is sure, our family became closer than it had ever been. For that, I am forever grateful.
Throughout this journey we learned so much. We learned of our daughter’s incredibly resilient and a brave soul. We learned that her sisters are solid, kind and caring people. We learned that science is astounding. Cancer is so prevalent. Doctors are rock stars. Prayers can be answered. They say when you save the life of one, you save the world. I’d like to thank our daughter’s donor and doctors for saving our world.
PS. And on a financial note, hire a professional medical advocate to go through your bills and negotiate with your insurance provider. Dr. Corey Booker of OnPulse, Inc. did that for us and saved us tens of thousands of dollars.
Author: Stacy Scheinberg: Mother of AYA Cancer Patient and Survivor