A Cruel Bargain for My Child’s Life
By Amy Shields
In March 2014 after a few months of doctor visits for pain and fevers, our almost 5-year-old son Sullivan, Sully for short, was diagnosed with stage IV neuroblastoma. Luckily, we live close to Children’s National Medical Center where Sully was able to immediately start a clinical trial run by the Children’s Oncology Group (COG).
Five rounds of chemotherapy, surgery to resect his remaining primary tumor, targeted internal radiation where radioactive isotopes were injected into his body in the hopes that they would bind to and destroy the cancer cells, a stem cell transplant, photon radiation, and immunotherapy seemed to do its job and Sully was declared no evidence of disease in September 2015.
We celebrated. He rang the bell and we started to put cancer behind us. Three short months later, he relapsed. More chemo, two more rounds of internal radiation, and proton radiation to his skull followed. During an eight week break from treatment that we took to grow his t-cells for a trial, his disease progressed again. This time we were able to use a combination of chemotherapy and immunotherapy to clear the remaining disease. In October 2018 we heard those magic words again — no evidence of disease.
Slowly our family got back to living. We celebrated all the little milestones. Went on vacation. Our oldest son started high school. Things took on a “normal” rhythm. Throughout all this normal, cancer was always still there, lingering around our lives like an unwanted guest.
We cultivated a team of doctors and other specialists to guide Sully’s care. Audiology for the high frequency hearing loss caused by one of his chemotherapy drugs. Endocrinology for his thyroid which was damaged by treatment. ENT for his lungs (radiation left scar tissue on his lung sacs, making it hard for him to take a deep breath and nearly impossible for him to run more than a short distance without gasping for air). His pediatrician who put him on an accelerated vaccination schedule to make up for all the vaccines that were wiped out of his body during his stem cell transplant. An orthopedic surgeon who specializes in leg length was planning to perform surgery next summer to lengthen his right leg, which is four centimeters shorter than his left leg, a result of the radiation he had to his leg. Cardiology to make sure the chemotherapy did not damage his heart. And, of course, his oncologist who saw us at first every three months, then every six, and finally, just once a year for scans. And even with all this, we considered ourselves lucky.
He is alive! He beat stage IV cancer!
Sure, Sully would get annoyed because he loves sports and could no longer run but he was able to play goalie which satisfied his competitive spirit and let him be part of a team. Even when we were told we would need to take his entire summer break to lengthen his leg and that would be a long and painful process, we were grateful. He is alive! He beat stage IV cancer! These were annoyances, nothing more.
During this time, Sully also spent a lot of time advocating for other kids with cancer. When he was seven and in treatment, he would share his experience with other families going through the same diagnosis with their children. He volunteered with many nonprofits, spoke at benefit events, and advocated at the state and federal levels to secure more funding for childhood cancer research. Sully’s advocacy even helped pass a bill to establish the Maryland Pediatric Cancer Research Fund. In most of these spaces, Sully was by far the youngest person in the room; he was usually also the most impactful. Many people remarked about how his treatment was over so he could have just walked away if he wanted to. That’s not who Sully is. As long as there were others in the fight, he was going to fight for them.
In April, Sully left lacrosse practice complaining of pain in his shoulder. Whenever Sully has something medically unusual, I have to talk myself down from overreacting. Watching your child go through cancer treatment can do that to a parent. I took a deep breath and brought him to Urgent Care, chastising myself for overreacting. The doctors felt it must be a strain in his muscle from practice so we went home. The next morning the pain was worse and Sully started complaining of intense stomach pain. I brought him to the local ER, again telling myself I was overreacting, after all it had been over four years since he had any active disease. He had routine scans in December that still showed no evidence of disease. My internal monologue told me I needed to let this go and to stop overreacting, but he was in pain and we needed to figure out what was causing it.
After a CT of his abdomen, our ER doctor came into the room. She was clearly uncomfortable as she reported that there was something that looked like “cancer or prior cancer or something” and that we should follow up immediately with his oncologist. Then I was handed discharge paperwork that said the words “metastasis to liver”.
After a week of testing for what we thought was likely a relapse of his neuroblastoma, Sully collapsed at home. We were transported by ambulance to our local ER and then by helicopter to Children’s National Medical Center. After more testing, we discovered that Sully actually had a 12 cm mass in his liver and that mass was bleeding, causing Sully’s blood pressure and oxygen levels to plummet.
Surgery was performed to stop the bleeding and a biopsy was taken. The diagnosis was one that no one expected — angiosarcoma. A cancer so rare that some statistics say it only happens to two in a million people.
Two in a million. The worst part? The angiosarcoma is likely a result of all the radiation he had to kill the neuroblastoma.
His cancer treatment caused him to develop a new, more aggressive cancer. We knew it was a risk. Every time we signed a consent form for treatment, they went through the possible side effects and one was always secondary cancer. But what choice did we have? There was no other, safer treatment for his neuroblastoma. We said yes to save his life.
What a cruel bargain.
Sully recently completed his first round of chemotherapy for his new diagnosis, his 30th round of chemotherapy over his lifetime. As for what comes next? We will continue to fight every step of the way and advocate for less toxic treatments to cure childhood cancers, because our kids deserve better.
Sully’s family is helping to raise funds for St. Baldrick’s Cancer-Free Isn’t Free Campaign. Help fund better and safer treatments.
