On the morning of April 16, 2015, I thought that the worst day of my life was behind me. I couldn’t imagine anything worse than finding out 6 months before that Cub, my 5-year-old son and only child, had cancer. But I was wrong.
That evening, during dinner, he began having seizures and fell unconscious. I called 911 and in the few minutes that filled the space before the paramedics arrived, my heart sank with new fears. Cub had never had seizures before, and my mother’s heart knew that the evils of childhood cancer had even darker depths than we had yet experienced.
Once in the ER, the medical staff quickly accessed Cub’s port, drew labs, and hooked him up to fluids. He had seized 3 more times and there was evidence of internal bleeding. They sedated him for an emergency CAT scan, and the results showed bleeding on the brain. My precious little boy, now 6-years-old, had had a stroke.
Further testing, including an MRI in the middle of the night, would reveal that there was also a clot in the Superior Sagittal Sinus of his brain. After lengthy consultations between his expert Oncology team at a renowned children’s hospital and the Vascular and Neurology teams at our local hospital, it was determined that Cub had experienced an extremely rare reaction to one of his chemotherapy medications called L-Asparaginase. It was known to cause, on rare occasions, bleeding or clotting. But in his case, it had become a “perfect storm” of sorts, and caused both.
Cub was sedated, placed on a ventilator, and hooked up to an EEG. He had around-the-clock care and observation with a nurse and mother who never left his side. I was warned that, if he regained consciousness, he might not be the same little boy who went to sleep 24 hours before. He might not smile. He might not tell jokes. Run. Play. Or speak. The last words I may have ever heard him say were, “This is so hard!” as he struggled to look at me while violently seizing one more time before his sedative took over his little body.
While they slowly brought him out of sedation, I steeled myself against the negative “what if’s.” I prayed, took cleansing breaths, and determined that no matter what, we would still share the love we had always had, and that I was going to do everything in my power to give my son the best life possible – no matter what that was going to look like when he woke up.
As my son began to regain consciousness, he crossed one foot over the other. I squealed with happiness, smiled with the nurse and took a picture with my cell phone, updating family and friends of his progress. It was the first time he had moved since being sedated. A few hours later, he moved his lips around the thick tubing running down his throat, taped against his skin to keep it in place. He was mouthing “mommy.”
The first words he spoke aloud after the tubing was removed formed a complete, complex sentence. I was filled with a rush of joy and relief like I had never known. Within hours, veteran nurses were calling him “the miracle boy.” It was determined that he had no cognitive damage whatsoever. There was some damage to gross and fine motor skills, and a year later, he is still in physical therapy. But, he is expected to eventually make a full recovery.
While this is wonderful news, we must remember that my son had cancer, not vascular disease. We must remember that the medicines given him to treat this cancer were designed for adults. We must remember that the medicine meant to save his life by killing his cancer almost took his life by causing a catastrophic stroke in a 6-year-old.
My son is recovering from his stroke, and I rejoice in that every day. But. Wouldn’t it be wonderful if children could be healed of their cancer without possibly sacrificing their ability to walk, to speak, to learn, or even to breathe on their own?
Wouldn’t it be wonderful if the treatment of pediatric cancer was more of a priority than it has been – with children having specialized treatments tailored to their individual needs rather than outdated medicines designed for adults? Wouldn’t it be wonderful if the cure wasn’t as dangerous as the disease?
I believe that CancerMoonshot 2020 is going to help that happen. With a vision for bringing immunotherapy to children across the nation, they will not only be saving children’s lives, but their futures – more laughter, more running and playing, more growing, and more life. Now that is a vision worth fighting for.