Like most mothers, I do not think that any words will do my son justice. So, here is my attempt at capturing the essence that is my son, Luke Ignatius Fochtman. I have always been in awe of my son. Always. He arrived on the due date, was a great eater and sleeper. He is cognitively and verbally advanced for his age, especially for a boy. He knew all of his colors, letters, and shapes before he was two. He would beat my husband and I at puzzles and Memory. Prior to diagnosis, Luke was on the quiet side, shy even. He would not miss out on things, but he wasn't the first to volunteer either. Yet, at the same time, he was observant, patient, deliberate, and tough. He is sensitive and perceptive, but stands up for himself and his friends. It turns out that all of these characteristics served him well during his treatment.
One day I found a lump in Luke's groin and two days later we had a cancer diagnosis. Luke was diagnosed with Stage 4 Embryonal Rhabdomyosarcoma (ERMS), just five days after his third birthday. Within the pediatric cancer world, "rhabdo" is aggressive. The five year survival rate for kids with stage three or four diagnoses is very low, too low to even mention; this is because Rhabdo has a high relapse rate. Luke endured a 54 week treatment protocol that included multiple rounds of chemotherapy, six weeks of daily radiation that required sedation each time, and many, many, many, central line infections. His treatment actually lasted almost 70 weeks due to delays caused by bacterial infections and low counts. The amazing part of all of this is that Luke never said no to us. Not once, not ever. Not even to the nightly injections of neupogen that Daddy stabbed into his scrawny thighs. He never fought us on any part of his treatment. He only fought the cancer. He was so strong, that to be in his presence made me feel unworthy. That I was not capable of being the mother of someone so strong, so proud, so brave, and so pure.
During his treatment, Luke would not let me shave my head. I asked him many times if he wanted me to and he always said no. He is so smart. He knew that chemo caused his hair to fall out and he got chemo because he had cancer. He didn't want me to have it, too. He gave me permission to shave my head for St. Baldrick's because I told him that the money we raise would go to help other kids who had cancer like him. I am shaving my head as a visible sign of what my son, and other kids, endured. To show the world that kids get cancer, too, and that is must end. NOW.
Today, Luke is a smart, funny, loving, sensitive, determined, artistic, six-year-old boy. He is thriving in school. Now, he is outgoing, confident, generous, sensitive to others, a good friend and kind brother. He is a joy to be around. We have been doing everything we could not do while he was in treatment and someday hope to give to others what was given to us these last two years.
On December 12, 2008, the world as I knew it and my role in it were irrevocably changed. Hearing that our son had cancer changed everything. We were blessed to have access to an amazing cancer facility, a team of wonderful doctors and nurses, and many family and friends who lifted us up during Luke's treatment. For the last two years I felt compelled to get more actively involved in the pediatric cancer community, I just hadn't found a cause or organization to rally around. Now that we are beyond treatment (and my degree is finished) I am READY to take action and be more vocal and visible for our kids. I am shaving my head to help raise awareness for pediatric cancer, to give back to the community that helped us, to keep fighting, and to raise money for a CURE.
We ARE 46 Mommas on a mission to raise awareness, raise funds for research and inspire others to help fund a cure for childhood cancer.
Each year a new class of 46 Mommas is inducted into the cause to empower and engage mothers of children with cancer. The number 46 is significant. On average, each weekday, 46 families receive the news that their child has cancer. Through increasing awareness of childhood cancer and raising funds for childhood cancer research by shaving our heads, we hope to one day be a group that no longer needs to exist.