Alexa’s first marathon started when she was just three years old and she was diagnosed with a rare and deadly cancer. But with years of aggressive treatment and annual checkups until age 18, Alexa, now age 24, is cancer free and recently took part in the Boston Marathon.
Alexa’s mom, Kerry, tells the story: “Our family just finished celebrating 21 years since Alexa’s diagnosis, but I remember that time as if it were yesterday. When Alexa was three years old she began having trouble sleeping because of a pain in her side, although there was no bruise or other problem we could see. When the pain continued, we took Alexa to her pediatrician, but he couldn’t find anything either.
“Alexa’s pain didn’t go away, though,” Kerry continued, “and seemed to be increasing, so the doctor told us to take her in for an X-ray first thing in the morning. After the X-ray, we learned there was a spot on Alexa’s lung, and an appointment had been scheduled later that day at another hospital. As we got our things together, I casually mentioned to the ER staff that we were going to stop at McDonalds on the way since Alexa hadn’t eaten all day. When we got to the counter at McDonalds, the person there asked if I was Alexa’s mom. When I said ‘yes’ they told me the hospital had called ahead to warn us not to let Alexa eat as she would need to be sedated for the next procedure.
“We needed to drive out to Manchester Hospital for the MRI, but Alexa didn’t respond well to the sedative and it looked like the MRI would have to be postponed. I just knew there was something seriously wrong though; in my bones I just knew. In the end, the staff re-worked the schedule and fit Alexa in for her MRI later that day. Then we were instructed to return to UConn Health Center. Connecticut Children’s had not yet opened, so this was the beginning of our driving all over the state to see various specialists,” Kerry explained.
“At UConn they were expecting us, so in a short time we found ourselves in a room on the cancer unit. Dr. Altman and four other doctors asked my husband and I to step into the hall where they told us our daughter had cancer. It was very serious and they were considering immediate surgery. By this time it was quite late in the day. And I had a one-year-old at home with my father.”
With a deep breath, Kerry continued, “Alexa had a neuroblastoma, located behind her heart and lungs. Typically, these cancers occur near the abdomen and are found in the first 6 months of life. We learned the tumor was quite large and advanced, as it had been growing for Alexa’s entire life. And it was pressing on her nerves (which had caused the side pain). But due to spinal cord involvement, as well as the overall complexity of the case, Dr. Altman decided to consult with colleagues before moving forward with surgery.
“Alexa went through days of tests and specialist consultations as the pain grew worse. The one thing that seemed to help was being in water. There was a huge tub at UConn so I brought in a bathing suit and spent hours playing Barbies or drawing in the tub with Alexa. Because her case was so rare (fewer than 2% of neuroblastoma grow behind the heart), Dr. Altman presented Alexa’s case to a board of specialists in Chicago. All in all, it ended up taking about 10 days to get to the first surgery. The surgery itself took about 11 hours, but we all felt optimistic that it was successful.
“Sometime later though Alexa started tripping and generally losing coordination,” Kerry recalled. “An emergency MRI revealed that her tumor had grown back. And this time the tumor was growing in her spine.”
“All this happened before Connecticut Children’s opened its doors,” Kerry explains, “so Alexa and I, and my one year old, were running all over Connecticut to see specialists, and get tests or X-rays. It was very difficult. But once Connecticut Children’s opened, Alexa’s entire team was able to easily gather for regular updates and strategy sessions. And of course, my husband and I were invited to all of these meetings. It was such a tremendous relief to have everyone in the same place and it helped us better understand what was going on.
“Connecticut Children’s understands children. It sounds so simple, but makes all the difference. Their approach is much more patient and sympathetic to children. It’s an entirely different and better experience for children and their families.”
Taking time out from her marathon training, Alexa recollects, “I don’t remember any of the early stuff – the surgeries or all the testing to get a diagnosis. I continued to have appointments at Connecticut Children’s until I turned 18 though. The doctors wanted to establish that my protocol could be useful to other children with serious cancers like mine. That makes me feel really good.”
“I mostly remember Dr. Altman being gentle and kind,” Alexa recalls, “and also that the nurses were fun and caring. I remember the dinosaur examination table was my favorite and I would fuss if we had to use a different room. I know I’m incredibly lucky to be alive, let alone training for the Boston Marathon. It’s funny – even though I know I was very sick, my memories of Connecticut Children’s are mostly warm and happy.”