On March 30, 2012, Caden (my firstborn) was diagnosed with cancer at three years old. Pediatric oncologists explained that he had an aggressive form of childhood cancer: stage IV, high-risk neuroblastoma, with a five-year survival rate of less than 50%. Neuroblasts are embryonic cells that develop into nerves, and in my baby boy, it may have been a single cell that didn’t develop properly and instead became cancerous. Risk factors and causes of neuroblastoma are unknown. In Caden, the tumors started in his adrenal gland and spread throughout his entire skeleton, and one tumor pushed on his brain.
For the first few weeks after diagnosis, I silently begged to wake up from the nightmare. Endless questions of why and how swirled in my mind and prayers, and always ended with me thinking that Caden–my treasured little boy that I had fed high-quality foods, sheltered from violent TV, gave plenty of time to sleep, protected from hazardous things, and spent a lot of time playing outdoors–could not possibly have cancer. I struggled to accept our new reality. I walked by pictures hanging on the wall of Caden before he got sick. The photo taken of him swinging in the park, barefoot and carefree, just after his second birthday with nothing but pure blue sky in the background would always catch me.
No way. Look at that happy, healthy child. Was cancer growing in his body then? I just can’t believe this has happened to him. What would our lives be like if cancer never entered it?
Most of the time now, I no longer think these thoughts. It doesn’t seem possible to wake up from this nightmare anymore. I have given up on wondering why or how. I know I’ll never know the answers to either of those questions this side of heaven. I accept that my first born was full of cancer at the tender age of three.
However, I do not accept that childhood cancer treatment feels harsh, barbaric, and cruel, using chemotherapies and radiation created for adult cancers generations ago. I will not accept that some childhood cancers have very grim prognoses. I refuse to accept that children are getting far less than adults in terms of cancer research funding, with only 4% of the National Cancer Institute’s budget and 1% of the American Cancer Society’s, and very few pharmaceutical companies developing drugs for pediatric cancers. All of these things are completely unacceptable. Cancer is the leading cause of death by disease in children in the United States of America. I will never be okay with what Caden has gone through. What I have accepted is that this is a part of his life, our lives. I never want it to define who he is and I’m tired of it consuming my every thought. I accept what we have been handed, but I don’t like it. Acceptance feels much better than denial.
During the first few months following his diagnosis, I focused on getting through the ridiculously long and intense treatment, hearing the words that my son no longer had cancer, and continuing on with our lives. Marked by the experience, but victorious, grateful, driven, and optimistic. I’m sure it wouldn’t have been that simple, even if Caden had sailed through treatment and had a terrific response, but that’s not how it went.
Caden had insane amounts of treatment; children can tolerate much higher levels of therapy than adults can. Yet despite these treatments, his disease was reluctant to leave. Even as recently as one month ago, neuroblastoma cells can still be found in Caden’s bone marrow. I must accept and co-exist with the anxiety this creates. I have to swallow this figurative pill I never wanted to take, just has my son has physically had to do so very many times.
Yet, not a day goes by that I don’t think about hope. When I was a kid, childhood leukemia was basically a death sentence. Today, that is no longer the case. Each day, new discoveries are being made. Unfortunately, even today, some pediatric cancers are terminal upon diagnosis, and not every kid diagnosed with leukemia is cured either, way too far from it, but somewhere along the line, incremental advances have been made. Gradually, more kids are surviving. It hasn’t been a light-bulb, instantaneous discovery. I have hope for Caden that maybe the tide is shifting and he can be swept up as one of the lucky ones, but I have to accept the reality of his prognosis in one hand and the hope that lies in the other. I accept I have very little power to change the outcome. I must walk forward with faith in miracles. In some ways, the fact that he is here with us now is one. Ten years ago, that might not have been the case.
I accept that our future is full of uncertainty. I accept that when someone talks about graduations, Christmas, birthdays, weddings, I will always wonder if he will be there. I accept that his life is not, and will not be easy. He faces challenges other kids don’t have to, but he is remarkable. He doesn’t have to stand out like an Olympian or Nobel Prize winner to be exceptional. I accept that I will probably never be comfortable with the word “survivor”. I accept that a part of his childhood was stolen away, but he has had infinite love and attention poured over him. I accept the lessons I have learned along the way. I accept our lives as they are – good and bad, highs and lows, and everything in between.
In honor of Childhood Cancer Awareness Month, we would like to highlight the following organizations that Pam Shrauger supports:
**Donating blood is another non-financial way to help children fighting cancer.
Pam Shrauger is a wife and mom of two in Bozeman, Montana. Though her college degree is in meteorology, she manages a construction business with her husband and tries to check the weather when she can. She also loves the outdoors and volunteers as a Bible Study Fellowship group leader. Her young son’s battle with cancer has created a lifelong passion for supporting childhood cancer research.