“Do you want to sit down, Mrs. Weiss?” asked one of the eight white coated people crowding our ER cubical. I sat. We had been in the ER with our 10 month old for 22 hours. Sitting sounded good.
“ Your daughter has a large tumor in her abdomen. It is making her extremely uncomfortable, and it is affecting other organ functions. From looking at the MRI, we believe your daughter has a very rare form of cancer called neuroblastoma. The name can be misleading. The tumor we see is in her adrenal gland, not her brain. Do yourself a favor and stay away from google. You are going to be bombarded with information from doctors and with questions from friends and family. Spend the next few days setting up a support network of people who are actually willing to help you. Let them help. Tell everyone that Sawyer needs to undergo a biopsy before we can offer a proper diagnosis.” said the oncologist at 3pm on Good Friday.
“ Considering the holiday weekend, we won’t be able to do much till Monday. For now, you should know that there is nothing you could have done to prevent this. We don’t know what causes childhood cancer, but we are confident it isn’t due to a mother putting splenda in her coffee or flying on airplanes while pregnant or even drinking tap water. The truth is that we have come a long way in treating childhood cancers, but we still have a long way to go. I’ve heard from many families that these first few days of not-knowing are the worst of it.” He was right. We were in purgatory.
There are no words to describe the pain and horror I experienced in that moment. My closest friend had Leukemia when we were teenagers. I knew what childhood cancer looks like. He struggled with disease and treatments and side effects for years before he passed away. And then there I was again, blindsided. This time I had to be the adult, brought to my knees, contemplating my perfect 10 month old baby dealing with cancer. I always assumed I would just die if something happened to one of my children. When it was upon me, the words, your daughter has a large tumor in her abdomen, I understood clearly my child’s illness would not kill me, even if I wanted it to.
The drs cleared the room. I passed Sawyer to my husband, Jonathan. I had five minutes of clarity, in which I called our pediatric ENT, who I knew would be the right person to guide us towards the best medical care. I asked him: what would you do if this were your child? He gave me the name and number of a surgeon, and he told me to take Sawyer to Sloan Kettering.
We took Sawyer to Sloan on Monday. We met with an oncologist who specializes in neuroblastoma as well as the surgeon who planned to remove the tumor, if possible. “Regardless of what the biopsy shows, Sawyer is so lucky that this isn’t 20 or even 10 years ago. Thanks to all the research we’ve been able to do, today, even difficult cases of neuroblastoma are treatable, curable.” Jon and I held onto those words like they were the only true words ever spoken.
By Wednesday, we knew that Sawyer had stage 4 neuroblastoma. The disease was spread through 85% of her body. Despite this unimaginable diagnosis for our baby, who had never even had a cold before this, we were not scared. We held onto the mantra: treatable, curable. As long as the science was there to support treatments, we were determined to do anything else that we could to get our daughter through it.
Over the next 9 months, Sawyer went through: 8 rounds of chemotherapy, 11 blood transfusions, a 9 hour surgery, and a stem cell collection. I will fast forward through the details of our daily lives and what we went through in order to maintain a semblance of normalcy for our other two young daughters. I did my best to put my nervous energy to good use; I educated myself on all things related to childhood cancer by talking to families, nurses, doctors, administrators- anyone who would humor me, really. I learned that nearly 16,000 children and teens are diagnosed with cancer each year in the United States. MSK has the largest pediatric oncology program in the country- and treats more than any other hospital nationwide. Childhood cancers are all considered “rare” and research depends largely on fundraising efforts such as Cycle for Survival and other donations. Treatments that are developed for children can be adjusted by dose and regimen to treat adults, but the reverse is complicated. Much more testing is required before a treatment designed for adults can be used on smaller, still-developing bodies. The list goes on.
On a personal level, I was moved by what families were willing to do for a chance that they will see brighter days. I am humbled by the people who have baked cookies and have thrown galas and did everything in their power to fund the trials that have given childhood cancer an 80% cure rate. I am overwhelmed with gratitude for the doctors who have dedicated their genius to creating better, less-toxic therapies that minimize long-term effects of cancer treatments for children. They continue to push because 4 out of 5 children surviving cancer is not nearly enough.
October 29th at 6:17 PM, we got a phone call from our doctor letting us know that Sawyer’s scans were all clear- no evidence of disease. I buried my face in the nook of my husband’s arm, and I ugly cried. I was filled with as much joy as the first time I held her. Then, my heart sank. My second thought was about the families who have yet to receive this type of call. I kept thinking about the kids we met, living chemo to chemo, praying for a medical breakthrough that will save their lives.
When I told our seven year old about our good news, her first response was: that’s terrific mom, but we’re still going to help the other children, right? (As if that day could get any better.) We hope that Sawyer is on the other side of cancer. Regardless, our family is all in this fight. Thinking of those families of valor, brave in the face of danger, I am resolved. Cancer, this means war.
My family endured a real life nightmare. I choose to focus on the silver lining because any alternative feels like a disservice to my warrior princess daughter.
Cancer gave us the gift of perspective. Now, we appreciate each night we all get to sleep under one roof. We don’t sweat when plans change. We put our phones down. We listen to our bodies. We hold hands and snuggle longer. We always kiss goodnight. We think about breathing. We celebrate whenever possible. We welcome prayer and positive thinking from anyone offering it. Our young children feel compassion for others. They wholeheartedly value health and togetherness. I experience faith, gratitude and love on a deeper level. I like to think this is us standing taller on our pain.
Please stand with us, ride with us. Battle childhood cancer with us. Let’s offer hope to the families who are still waiting for that best-news-ever phone call. Be part of the silver lining in Sawyer’s gold ribbon journey.