Jack was tired. It wasn’t like him to ask to be carried or not be in the mood to play. He didn’t get sick much. It was May 2017 — one month before the big science-themed birthday party his family had planned to celebrate his fourth birthday.
Jack’s typical behavior included a boundless enthusiasm and curiosity for nature, being outdoors, science, and learning. He loves to play, especially with his younger brother Derek. While his mother, Brenda, describes him as a “thinking kid,” Jack also loves sports and wishes he could meet Philadelphia Eagles quarterback Carson Wentz. In other words, Jack rarely sat still.
Jack’s family didn’t worry too much when he came down with his first fever. It ran its course and ended. But then it returned. Brenda remembered the tick she found on him earlier that spring, and Jack’s father, Jeremy, thought it best to get lab work done. They and the family pediatrician decided to check Jack for Lyme disease.
They went to Children’s Hospital of Philadelphia’s Specialty Care & Surgery Center in Voorhees, NJ, a short drive from their home. They waited at the clinic while the tests were run.
“What we didn’t expect was to be called into the lab from the waiting room and told to take Jack to the CHOP ER immediately,” explains Brenda. They headed to CHOP’s Main Campus in Philadelphia, and Jack was admitted to the Oncology Unit that day.
A birthday party in the hospital
Jack was diagnosed with standard risk B-cell acute lymphoblastic leukemia two days before his fourth birthday. The science-themed birthday party was canceled, but to make up for it, the nursing staff at CHOP threw him a party. One of Jack’s favorite science experiments is to make volcanoes spew colored lava. In the hospital, Jack and the nurses used the same basic chemical reaction, mixing baking soda and vinegar in a bottle, releasing carbon dioxide gas to fill balloons.
The first 11 days that Jack and his family spent at CHOP would redefine their lives. Jack received a medical port — which reminded the boy of one of his favorite superheroes, Ironman — and began treatment on his first day. Family members stepped in to help take care of his little brother, so his parents could focus on Jack.
In the face of all sorts of questions about Jack’s diagnosis and future, some good news arrived in the form of genetic testing that indicated he would respond well to treatment for his type of cancer. This is just one example of the ways that personalized genetic medicine is advancing cancer treatment.
Support from a caring team
By day 29 of Jack’s treatment, his bone marrow test revealed that he would remain standard risk, so his treatment plan stayed the same: months of chemotherapy, followed by less intense monthly maintenance treatments, all of which he received at the outpatient oncology clinic in Voorhees. Before each treatment, Jack’s parents talked to him about what he’d experience so he could be prepared when his medical port was accessed, he had an IV, or he needed to have lab work done.
The team at Voorhees, including Jack’s doctor, nurses and social worker, and the community of other parents facing similar diagnoses have helped Jack and his family adjust to his new reality, and the rhythms of the treatment he will continue to have for the next few years.
“Everyone was able to help educate us and guide us,” explains Brenda. “It was overwhelming to leave the hospital and think about what this new normal was going to be.”
Tackling new challenges
In April, Jack had another setback: a diagnosis of a rare kidney disease called atypical hemolytic uremic syndrome (HUS). His doctors believe it is unrelated to his leukemia and may have been triggered by a virus he had earlier in the year. Jack is being weaned off an infusion of medication for HUS, which has interrupted his cancer treatment plan. He has some kidney damage and his overall care plan is being assessed.
This summer, Jack and his family hope to visit the lake near their home and head to a family vacation to Ocean City, where Jack, his brother and cousins will spend lots of time together playing LEGOS®. Jack can’t wait to start kindergarten in the fall.
Despite the challenges he has experienced this past year, Jack and his family remain positive. Jack has an uncanny ability to lift up the spirits of those around him with his curiosity, sensitivity, and especially his smile.
“Know what’s really great about this place, Mom?” Jack said to Brenda on a recent CHOP visit. “You are here, and we are all here together. And you know what’s also great? You don’t have to do any dishes here.”