Dear Empire State Building,
Two and a half years ago, this was my daughter. It is hard to look at these pictures; to go back there. She received a stem cell transplant for a very high risk form of Leukemia. To prepare her body for her transplanted immune system she was given high dose chemotherapy and four days of total body irradiation. All of this, just as she was turning two years old. We were told that the treatment itself could kill her and the list of immediate and late side effects was almost endless. We went ahead with the treatment though,signed those terrifying consent forms because, we had no other choice. There was no plan B. This, as her doctors told us, was her only hope for life. Three years post diagnosis, she is still here with us which, I am eternally grateful for but, the cost to her has been high. She has graft verses host disease in her skin, cataracts in both eyes, and her thyroid has been damaged. We have been told that she will not go into puberty without the aid of synthetic medication, and perhaps most crushing, she will be sterile; unable to have children of her own. She is also at high risk of developing secondary cancers and heart disease due to the extremely toxic nature of her treatment.
I have shaved my head twice in an effort to raise awareness and research funds, signed petitions to light the White House gold, kept a blog documenting our journey through the hell that is the pediatric cancer world, and I’ve often felt as though I’m just screaming into the void.
We, as a community, feel so alone and isolated. Evidently the Empire State Building doesn’t take lighting requests from individuals but, we are a community of parents, grandparents, siblings, extended family, and friends that is hundreds of thousands strong. We have hardworking researchers, hospital networks, and non-profit organizations desperate to change the options and outcomes for our CHILDREN. Childhood cancers need their own recognition. A light to shine into the dark places, where cures have yet to be found and young, developing bodies are not poisoned to death or near to it in order to have any sort of hope at life.
It is the right thing to do. Helping our children, the most innocent and undeserving members of our society, could never be wrong. Please help us. Please help kids like Olivia. Please help the desperate moms and dads out there who just want to give our children a voice in a world that largely ignores them. Please imagine walking a mile in our shoes. Please shine the light gold.
Mom to Olivia