Editor’s Note: This post was originally written in 2016. Hannah is a vibrant nine year old. She is cancer free.
September always arrives with a bang. We can deny its existence throughout the summer, but the slide back into the school year is always a bit jarring, right? This year we’ve managed to finish zero summer projects, done a smattering of school shopping, and mostly just tried to enjoy our time as a family. The reasoning behind our lazy summer was simple – it was my daughter’s first summer out of cancer treatment. Now we see September in a whole new light: it’s time to pound the ground and advocate for Childhood Cancer Awareness.
Hannah has an aggressive form of childhood cancer called neuroblastoma.
When she was diagnosed at age 2, she was already Stage 4. That means that her cancer had already left her primary tumor in her abdomen and settled in her lymph nodes and infiltrated her bone marrow. We were shocked. Neuroblastoma is sometimes called the Great Masquerader of Childhood Cancer. It’s symptoms show up like a common cold or virus, or an injury to a limb from a fall. It took months to pinpoint the cause of Hannah’s fevers, anemia and constipation. She even had a lymph node removed from her neck before the doctors were able to biopsy and find the dead neuroblastoma cells within it. And so the trauma began.
We launched into aggressive chemotherapy for six months. Hannah still had her beautiful long blond hair when we gave her the first round of chemotherapy. I can still remember the last time we washed it. Our wonderful nurse set up Hannah’s bed so we could wash her hair. As I scrubbed her hair with the baby shampoo, the strands would fall out and wrap themselves around my fingers. My tears fell as I looked at her content face, my beautiful toddler. I’m sure it felt wonderful to her, as she was covered head to toe with an itchy rash from a medication aversion. She had no idea that a few days later we would shave her head, and she would be a bald beauty for the next 15 months.
The next step was an eight hour surgery attempting to remove as much as the tumor as possible. Then we went into a stem cell transplant. I watched my daughter cling to life, wondering if she would survive the treatment that was meant to save her. She did, climbing out of the darkness to combat the complications that kept her bed bound for 4 weeks. We soldiered on to Radiation treatment, once again grateful that we live in the shadow of Mayo Clinic. Hannah started proton beam treatment to pinpoint her cancer, and perhaps save her tiny organs from the damage of radiation therapy. I don’t feel bad about letting her stand near the microwave anymore. She’s had 40 sessions of radiation beamed into her body, Star Trek style. We still had another surgery and six months of immunotherapy after that.
We had been in survival mode for what seemed like forever.
Hannah had occasional scans to check on the outcome of all these treatments. We would get mixed results: not great, but not awful. The doctors kept reminding me that Hannah had significant disease. After one particularly rough appointment, I asked our oncology nurse if she thought Hannah had a chance. I had reached my breaking point, and not for the first or last time. She turned to me and held my hands and told me she absolutely had hope. It was still there. And that I had to have hope too. And so I did.
I think that’s the hardest part for a cancer mom. We are built to protect our children.
How do we survive as parents when we have to surrender these basic instincts? We survive because of people like our nurse. They are my safety net. Not just our nurses. My mom picked up the slack for me in more ways than I can count. She was Super Grandma, taking over with my son Jacob when we were with Hannah on her darkest days. The rest of my family made Hannah their priority, especially Uncle Brian and Grandpa. Grandpa was her chemo buddy, as he was battling his own cancer. My friends and neighbors stepped up to the plate. They became a refuge for us, filling our home with food and gifts. The rare days we were home, they gave us the simple joys of enjoying life. Their kids treated Hannah like a normal kid. They forgave me when I cried at everything. Or they cried with me.
We met other families in the community who have traveled this road. It was comforting to know that we aren’t the first or only family to experience this, nor will we be the last. Through Brighter Tomorrows, we found peace and friendship by connecting with other families who have experienced childhood cancer. We can fill a room with 20 different variations of childhood cancer, not one child’s journey the same. And yet we all share the common experience of leading our children through cancer treatment.
So yes, September is all about school. And football. But it’s also about Childhood Cancer in our house.
We will make as much noise as possible, underscoring the need for research dollars to help these kids fight cancer. We talk about More Than 4, the 4% of the NIH budget allocated for childhood cancer. Some people may argue that 4% is enough, because there are only 16,000 children a year diagnosed. I believe that giving a child a chance to be an adult deserves more funding. I’m biased, right? I always will be. I’m part of the club now. We are getting closer. Had Hannah been diagnosed with neuroblastoma in the 1980s, her survival rate would have only been 10%. With new recent breakthroughs in immunotherapy, it’s pushed closer to 60%. But that is still a D, right, teachers?
September will fly by, as it does every year. Our family is spending a lot of time healing. We are in a good place, for now. We will watch football and go to soccer games for Jacob. But we will also advocate for our child, and all other children. Those who are surviving with lifelong complications, or those who have succumbed to their disease. Their lives need to matter.
So, before our favorite football players put on pink for breast cancer in October, let’s Go Gold for our littlest fighters. And let’s honor the memories of those who have passed away from this aggressive disease.
Each child deserves a chance.
Ways you can help Go Gold locally for Childhood Cancer:
These organizations give back directly to families affected by cancer in our local communities.
Brighter Tomorrows: An organization that provides emotional, spiritual, and educational support by listening to, understanding, and supporting families touched by childhood cancer.
Alex’s Lemonade Stand is a childhood cancer foundation dedicated to raising funds for research into new treatments and cures for all children battling cancer.
Pinky Swear Foundation eases the financial and emotional impacts experienced by families during a very challenging time.
Love your Melon Love Your Melon is an apparel brand dedicated to giving a hat to every child battling cancer in America as well as supporting nonprofit organizations who lead the fight against pediatric cancer.
Ronald McDonald House of Rochester, Minnesota The Ronald McDonald House of Rochester, Minnesota is a home-away-from-home for hundreds of families each year. This is a link to a list of what they need to stock their pantry for families who stay there.
Children’s Cancer Research Fund invests in lifesaving, leading-edge research in the prevention, diagnosis, treatment, and cure of childhood cancers and blood-related disorders.
St. Baldrick’s Foundation‘s mission is to find cures for childhood cancers and to give survivors long and healthy lives through funding childhood cancer research.
Resources for education and awareness about childhood cancer:
thetruth365.org : Our mission is to shine a light on the state of childhood cancer research funding by uniting the childhood cancer community, members of Congress, top pediatric oncologists and several of the country’s most influential celebrities.
http://curechildhoodcancer.org/: CURE focuses entirely on children’s cancer efforts and funds the work of some of the best and brightest scientists in the field of pediatric cancer. As research efforts continue, we also address the critical and urgent needs of patients and families.