In the middle of May 2012, my son Sam started having pains in his arms and legs. Up until then, he was a pretty healthy and active kid. The pains were intermittent, and we thought they were growing pains—an idea that was supported by our doctors when bloodwork and X-rays showed normal readings. His pain became quite severe, even as blood tests continued to be normal. Eventually, our doctor referred us to a rheumatologist, but before we were able to make that appointment, we took Sam to the ER when his pain was so severe that he wasn’t able to sleep or eat.
The ER doctors wanted to do an MRI and sent us to the Children’s Hospital of Wisconsin. We never imagined that they were looking for cancer or even anything severe at all. We kept thinking that he was fine. It wasn’t until after the MRI, when the ER resident took my husband and me into the hallway, that we considered something more serious. “We spoke to the oncologist on call,” she said. I couldn’t even understand why an oncologist was involved, and I barely heard any of the other words that she said. That was a Saturday, and Sam was diagnosed with leukemia by Tuesday afternoon.
Our entire family felt like the whole world had collapsed on us. I remember a buzzing in my ears and a sense of terrible doom. My husband and I held hands and cried together. Our son was in pain and unhappy, angry that we had him in the hospital at all. He was only 6 years old, and although we explained cancer to him, he was just plain furious that he couldn’t go home, he couldn’t go swimming and he couldn’t be with his family all the time. I don’t think he understood the cancer until much later. I also remember, after the initial feelings of helplessness and hopelessness, a sense of steeling ourselves, of “calling in the troops” and getting ourselves ready for what we knew would be a long road. As I said then and I continue to say, Sammy was brave because we told him that he was. None of us had a choice; we had to do what was in front of us.
I personally knew very little about leukemia and childhood cancer. We learned so much—in particular how little funding childhood cancer research gets from the federal government and from major cancer charities. We also learned how much we can handle (a lot!) and how many things become totally irrelevant when your child’s life is on the line. We learned how communities, both real and virtual, can come together in support of our family, and we learned how many families don’t have those amazing supportive resources. We learned which cancers were the “good ones” and which ones made us all shudder. And we learned that there really are no “good ones” and that childhood cancer rips through families and leaves them all utterly devastated, no matter the outcome. We learned that the treatments are, in many cases, even worse than the cancer, and we learned that there are so few alternatives. We learned to read lab results and give IV medicines; we learned which rooms on the oncology unit are the “good rooms;” and we learned how to muster the hospital’s resources in creative ways to keep a relatively active 6-7-8-year-old engaged and happy.
In November 2012, after four rounds of chemotherapy, Sam was declared “in remission,” and we felt a sense of relief. It was short lived, though, because at the end of March 2013 he relapsed and was forced to begin a new series of chemo treatments, followed by a bone marrow transplant in August. Acute lymphoblastic leukemia (ALL) is the more common and curable kind of leukemia that has a 90 percent cure rate. On the other hand, acute myeloid leukemia (AML)—the type that Sam was diagnosed with—has a 50 percent relapse rate following the first course of treatment.
Our doctors were always very open and realistic with us. We knew that remission was something that could be fragile. When Sam relapsed the first time, I was devastated, but yet, somehow, I knew it. Returning for a second round of treatment was horrible, yet we knew what to expect and that made it a little bit easier at first. We knew that a bone marrow transplant was the culmination of the second course of treatment.
Unfortunately, I did think about the possibility of Sammy’s death from time to time. I remember many sleepless nights in the hospital, wondering what it would be like and imagining how I would even get up in the morning. There are very few guarantees in treatment for AML, and I had the terrible knowledge gained from making friends with other parents in the hospital. We mourned for so many other children that it was impossible NOT to think about Sam’s death.
Sam talked about how he could die a few times. We tried not to talk about it with him while he was going through treatment, but he spent far too much time in the hospital and around adults to fully shield him. When he relapsed the final time, 77 days after the bone marrow transplant, we had to tell him. He cried. No, he wailed. He was totally devastated and furious that he was going to die. He couldn’t believe that he wasn’t going to grow up, that he wouldn’t do all the things we had talked about in his future. Was he prepared? Is anyone ever prepared for their own death, especially an 8-year-old? But he bought a birthday present in advance for his little brother and bequeathed his iPad to his big brother.
We discovered that Sam had his final relapse on November 12, 2013, and he died on December 14. In between those two dates, we took him to Israel to stand at the Western Wall in Jerusalem and put his feet into the Mediterranean Sea. We took him to Orlando, where he swam with the dolphins, and drove in a race car and visited all the Disney parks. We had a fireworks show and saw as many of his friends and family as we could. His final week he was sleepy but completely lucid, and just a few days before he died, he had a private magic show at home. The day before he died was the only day that he was completely unresponsive to us.
Unfortunately, childhood cancer has very little rhyme or reason; there’s really nothing that we can do to prevent it in most cases. We all have the responsibility to find new treatments and raise awareness because it could be your child just as it was mine. I believe that the most important thing we can do is raise money for research, and the organizations that are the best at fundraising for broad-based childhood cancer research are St. Baldrick’s Foundation, Alex’s Lemonade Stand and CureSearch.
Many cancer charities put children at the forefront of their marketing and advertising campaigns but then give far less to childhood cancer research than others. Unfortunately, childhood cancer research is terribly underfunded—less than 4 percent of the federal funding for all cancer research goes to childhood cancer research. Our family has made a point of supporting the organizations listed above, which are dedicated to research on children’s cancers.
I wish I could say that I have to be an advocate because no one else will, but the truth is that we all need to advocate for childhood cancer because we have no idea where it will strike next. If telling Sam’s story helps to raise just a little bit more money and a little bit more awareness, then that’s what I’m going to do.
To learn more about the foundations mentioned and to make a donation, click on the links.