It was just before Christmas in 2008 when Jaime took her then 21-month-old son Adam to the pediatrician for a lingering ear infection that had spread to both ears. Jaime expected to leave the pediatrician’s office with a prescription for antibiotics. Instead she was told to take her baby to the hospital immediately. During Adam’s exam, the pediatrician had discovered four freckle-sized red dots on Adam’s leg — petechiae, a telltale sign of low platelets and an indicator of possible leukemia.

On Christmas Eve, Adam was diagnosed with pre-B-cell acute lymphoblastic leukemia. He quickly began what would ultimately be several rounds of aggressive chemotherapy — both through a port in Adam’s vein and intrathecal chemotherapy injected directly into his spinal fluid. Over the next three years, Adam would relapse twice, the leukemia attacking first his eye and, finally, his central nervous system.

By the time Adam’s family was referred to Children’s Hospital of Philadelphia (CHOP) for a bone marrow transplant, 5-year-old Adam was a seasoned cancer veteran, having undergone multiple rounds of chemo and more than a dozen surgeries, each adding to what Adam calls his “family of scars.”

On Adam’s 6th birthday, he received a bone marrow transplant at CHOP as well as full body and brain radiation, leaving him in remission for leukemia and with many late effects — physical and psychological issues related to cancer and its therapies — that would begin to emerge over time. 

After treatment, late effects

For Adam, the complications and late effects of cancer treatment have included bony lesions called osteochondromas and growth hormone deficiency, as well as lung and heart damage, all resulting from total body radiation. A surgically-corrected perforated bowel resulted in chronic nausea and poor appetite. Adam also struggles with severe anxiety, which interferes with his ability to sleep and to focus in school.

“Adam’s one-in-a-million,” says Jaime. “If there’s a possible reaction or complication, he’s going to have it. But at CHOP, he’s not so rare. The preventative safety measures they take make a huge difference. Until we came here, we didn’t know how good it could be.”

Adam’s parents elected to permanently transition his care, regularly making the four-hour trek from Va. to Philadelphia for visits at the Multidisciplinary Cancer Survivorship Clinic, a coordinated clinic that brings together CHOP specialists from across the institution to provide individualized care for the unique physical and emotional needs of pediatric cancer survivors. During a convenient, one-day appointment, Adam sees specialists in Cardiology, Pulmonary Medicine, Endocrinology, Oncology and Psychology — all experts in the late effects of childhood cancer.

So confident are Adam’s parents in the care he receives at CHOP, they recently traveled to Philadelphia in the midst of the pandemic for an in-person follow-up appointment. “CHOP wouldn’t have had us bring him if they worried,” says Jaime. “I trust them to keep Adam safe.”

Another hurdle

At one such visit in 2019, Adam received a surveillance screen thyroid ultrasound. Because the thyroid gland is highly sensitive to damage from radiation exposure, childhood cancer survivors are at risk of developing thyroid cancer. For this reason, CHOP provides proactive thyroid screening for childhood cancer survivors as part of the Endocrine Late Effects after Cancer Therapy (ELECT) program — a team with expertise in identifying and treating endocrine disorders due to cancer therapy. The proactive thyroid screening protocol was instituted by Sogol Mostoufi-Moab, MD, MSCE, Pediatric Thyroid Center attending and ELECT Medical Director.

Adam’s thyroid ultrasound showed thyroid nodules which were ultimately found to be malignant. For the fourth time in a very short 12 years, Adam received yet another cancer diagnosis — papillary thyroid cancer.

More about Thyroid Cancer

Through CHOP’s Pediatric Thyroid Center, Adam underwent a total thyroidectomy (removal of the thyroid gland) as well as the removal of cancerous lymph nodes, performed by Ken Kazahaya, MD, MBA, FACS. After surgery, Adam also underwent radioactive iodine ablation (RIA), a procedure that destroys any remaining thyroid cells. In preparation for RIA, patients must temporarily stick to a low iodine diet, which Adam was not a fan of. “I’m never doing that again,” he says.

Fortunately for Adam and his parents, a follow-up ultrasound revealed Adam was finally cancer-free. While Adam’s history will always worry his parents, his mom notes that Dr. Mostoufi-Moab’s proactive approach to Adam’s care has made her feel more comfortable about his future.

“We’ve had a lot of amazing doctors over the years, but nothing like the confidence and care we get at CHOP,” she says.

One-in-a-million

Now 13, Adam continues to struggle with the late effects of cancer treatment, and recently underwent yet another surgery to remove a painful osteochondroma in his knee. His care is carefully managed at CHOP, including regular clinic visits, thyroid medication, growth hormone injections and immunoglobin replacement therapy. To combat his severe anxiety, Adam sees a local therapist and recently adopted a therapy dog named Copper, who’s made even the scariest medical procedures a little less so.

As for Adam, he truly is one-in-a-million. Proud to share that he’s now beaten cancer four times, Adam has spoken about his medical journey at multiple schools, written encouraging letters and created videos for other people battling cancer.

“Don’t be scared,” Adam tells them. “Be brave, and you’ll get through this.”