My son, Matthias, is a cancer survivor. He was diagnosed with bilateral retinoblastoma in 2008, and he lost both eyes to the disease in 2009. I shaved my head in his honor for St. Baldrick's twice, in 2012 and 2013. You can read more about his story here: http://www.stbaldricks.org/kids/mypage/4018
In 2008, my entire life changed. I had a baby, my second child. It was an easy labor and delivery, and I was blissfully happy with my family. My older son, Magnus, was just shy of 2 when Matthias was born, and I looked forward to raising two little boys. In December, our pediatrician observed Matthias' vision didn't appear to be developing normally, and he referred us to a pediatric opthalmologist for further testing. He was diagnosed with cancer on a Wednesday. By Friday he was in surgery to insert a central line. The following Monday he was receiving his first dose of chemo. He was 3 months old.
Our world was filled with uncertainty. We didn't know if our baby would survive. If he did survive, would he be visually impaired? How would we handle that? Would our marriage survive such an intense situation? How would our other son handle this, being so young and unable to understand? As parents, we were given impossible life and death choices nobody should ever need to make, and we were responsible for two little boys who had no concept of what was happening. As spouses we supported each other while processing our own emotions. It was an incredibly difficult year.
When Matthias was finally cancer free, we made peace with raising a blind child. He is smart and sweet and wonderful in every way. We are so thankful for everyone in our family every single day, but that uncertainty remains a part of our lives forever. We are aware that Matthias remains at risk for further cancers. Bilateral retinoblastoma is caused by a genetic mutation that is linked to numerous other malignancies. Every single day I am aware of the very real possibility that he will have cancer again. I try not to live in that dark place, but I can't deny it is a part of my life.
In 2012, we made two major changes as a family. We joined the fight against pediatric cancers by raising money for St. Baldrick's Foundation. We also committed to a healthier lifestyle, wanting to minimize the risk of disease for the entire family. We started eating much healthier, and we pledged to become more physically active. My husband and I started running. At first we couldn't run 1/4 mile, but eventually we were measuring our runs in miles. We successfully completed a half marathon in May 2013. I've always said there is no way I could ever complete a full marathon.
This year, I promised my older son I would not shave my head, but I still wanted to raise money for St. Baldrick's. I decided to register for the Chicago Marathon and run it to raise money for pediatric cancer research. I will run for the little fighters, for their parents who face heartache and uncertainty, for the siblings who feel neglected, for families and friends who don't know what to do to help, and for the doctors and nurses who do everything in their power to help.
I find myself, again, in uncertain territory. I don't know if I can finish the full 26.2 miles. I've never run that far. I do know, however, if you contribute to my fundraising efforts, your money will fund some of the most promising pediatric cancer research. Right now, the diagnostic process for pediatric cancers is inexact. Kids go undiagnosed until it is too late, or they are misdiagnosed causing delays in treatment. Treatments are also unreliable. Sometimes they don't work, and sometimes they cause other serious physical problems. Research will give physicians better diagnostic and treatment tools.
I will train my butt off. All I ask is that you help me out by making a contribution to St. Baldrick's Foundation. Let's give kids and their families a brighter future.