After two-and-a-half years riding roller coasters of the metaphorical kind, Alex spent his June birthday week in Disney World riding the real thing. Our family joyously celebrated an unexpected return to remission.
The cancer roller coaster has led Alex through seven treatments over two and a half years for his primary refractory Hodgkin’s lymphoma. We learned in October that he had relapsed after ten months in remission following an autologous stem cell transplant. He joined a clinical trial at Froedtert Hospital for ADCT-301. The drug worked, showing partial response, but it also triggered a grade 4, all-over body rash that was miserable. He had to exit the trial, and turned next to Opdivo. Four cycles of Opdivo triggered a grade 3 pneumonitis (inflammation of the lungs) that landed Alex in our local hospital for a week. He had to discontinue Opdivo due to the severity of the pneumonitis, but thef subsequent PET scan showed that he was in remission. We had been hoping the Opdivo would keep the cancer from spreading, and had hoped he’d be on it for a couple of years before it stopped working. We didn’t even dare hope for remission.
Disney is a family favorite, and we’ve visited multiple times, but it’s been several years – since well before cancer entered our lives. We had been waiting until Alex was stronger post-transplant to schedule a trip. When we learned in October that he relapsed, and that the options we were looking at were not curative, we scheduled the trip. We planned to go in April, hoping that he would be well enough to go.
When he developed the pneumonitis, we postponed the trip, rescheduling for June right around his birthday. We were disappointed to postpone, and devastated that we had to discontinue Opdivo. Then we got the amazing news of remission.
We didn’t know what to expect from the trip. Alex has always loved Disney, but travelling is a challenge for him because of his autism and anxiety, even without cancer in the mix. Last summer, when he was still recovering from his stem cell transplant, we tried to take him to Door County for a few days, and he was just too anxious. All he wanted to do was go home, so we cut the trip short.
We were prepared to take this trip at Alex’s pace. We knew he might need a wheelchair because his lungs are still recovering from the pneumonitis. We knew his anxiety might be an issue. We also knew that our family just needed some time away, together. Alex’s sister and her husband joined us on the trip.
Alex surprised us all – we enjoyed the trip, but the best part for all of us was watching Alex enjoy the trip. He wanted to do everything; we constantly laughed at Alex’s constant state of “FOMO” (fear of missing out). We enforced an afternoon break every day, and he went along with it grudgingly. One evening our daughter and her husband took Alex on their own while mom and dad went to dinner. We made her promise not to overdo it, but instead they reveled in breaking the rules. Our daughter texted us updates and pictures of her brother, beaming. They came back to the resort several hours later than the agreed upon time, thoroughly pleased with themselves.
The trip was a huge success, and a welcome break from reality. Alex is feeling fantastic this summer. His next PET is in a few weeks. We’re not sure what’s ahead. His disease has been so resistant to treatment; we know that the statistics tell us it’s likely to return. Today, though, life is good.
Editor's note: To read more, visit Carrie's blog, at carrieforster.blogspot.com/.
Share Your Thoughts
Cancer often times feels like an up and down roller coaster. What have you done to celebrate — or hope to do — when you receive a break from cancer and experience remission? Share your comments below.
