You can't really know what the parents of sick kids go through until you've lived through it yourself.
By Robert English, M.D.
Robert English, M.D., works at Wolfson Children’s Hospital. Photo: Michael LeGrand
When my 14-year-old son mentioned he had a bump on his neck, I didn't think much of it. He said it felt like a marble under his skin. When my wife told me she felt a second bump two days later, I felt it myself. As I made my way down his neck, I felt a mass behind his clavicle. I knew this was serious.
On my way to work, my mind raced to the kids I'd cared for with chest malignancies. I remembered several cases that didn't end well. I called a colleague in hematology oncology who suggested a chest X-ray and complete blood count (CBC). His mom took him in for the tests, and two hours later I checked on the results. My relief at the normal CBC was short-lived when I read the X-ray report suggesting a mediastinal mass. The gripping fear was overwhelming. All I could think about was whether or not my son had a lethal malignancy.
The next morning, we brought him in for a biopsy. The wait was agonizing. When the surgeon walked out with an oncologist, the question was not whether or not it was cancer but what kind of cancer it was. The next two hours were a blur—learning it was Hodgkin's lymphoma, watching him wake up from anesthesia, driving home and explaining he would undergo chemotherapy. His only concern in that moment: "Can I still see my friends tonight?"
He started four three-week cycles of chemotherapy. Doctors warned us about the side effects. I'd seen kids go through this during my training as a pediatric cardiologist, but I never imagined what it was actually like for them. Midway through his first cycle, he came to me and said he didn't feel well. I saw the gray, ashen look of a child with an infection. His fever spiked on the way to the emergency department.
Before we knew it, he was hypotensive and getting fluid boluses to keep his blood pressure up. By the next morning, he was doing better, and the doctor discharged him the next day. After dodging one bullet, I asked myself if I could do this for 11 more weeks.
At the midpoint of his treatment, he had another round of scans, which showed the lymphoma was responding—his chances of being cured were good. He hoped he could stop chemotherapy. I knew it made him sick, but I didn't understand just how bad it made him feel. He begged me to consider stopping treatment. I told him stopping was not an option.
After finishing four cycles of chemo, he underwent more scans. The anxiety I felt when waiting for the results was paralyzing. I could barely breathe, and my stomach ache, which had been getting worse for four months, reached its peak. I delayed checking on the results out of fear. Finally, I looked at the report, frantically scanning to the bottom to read there was no evidence of disease. The chemo worked. I sobbed.
The anxiety started to fade. But it all came roaring back when he developed a swollen node in his neck three months after remission. Thankfully, it turned out to be nothing. The fear lost its grip, and slowly the worry has gone away. It now comes in small doses—a bad dream, learning of a child with Hodgkin's who has relapsed, a swollen node. Hopefully, the fear of relapse will disappear.
What have I learned? You can't really know what the parents of sick kids are going through until you've lived it. You can't really understand what a hospitalization is like until you've been through one. Everyone who cares for sick kids should work hard every day to treat those kids the way they would want their own to be treated. It's that simple.
Robert English, M.D., is co-director, Cardiac Catheterization Laboratory at Wolfson Children's Hospital and associate professor, University of Florida-Jacksonville Pediatric Cardiovascular Center. Send questions or comments to firstname.lastname@example.org.