It’s a two-hour drive on a good day from Conor’s home in Westfield, NJ, to Children’s Hospital of Philadelphia (CHOP). 

His mother, Nicki, is happy to make the drive because she knows nowhere else could provide the care Conor has needed for his multiple congenital conditions and, especially, his leukemia.   

“I don’t know what we would do without CHOP,” she says. “They saved Conor’s life on many occasions, and they did so with compassion, kindness, friendship and hope. It’s a very special place.” 

A patient since infancy 

Conor has been a CHOP patient since a few days after his birth via an emergency c-section in northern New Jersey. He spent about two months in the Newborn/Infant Intensive Care Unit (N/IICU). He had mild cerebral palsy, aspiration pneumonia and feeding issues that led to him receiving Nissen surgery and feeding tube. 

As he grew, other issues came to light: an immune deficiency (leading to multiple long hospital stays for infections), intellectual disability, a heart valve problem, ADHD, autism spectrum disorder, obstructive sleep apnea, epileptic seizures, hypothyroidism and problems walking, which required hip reconstruction. Genetic testing revealed a rare genetic disorder, XQ24 microdeletion syndrome, was at the heart of his conditions. 

While Conor was a complex patient, his health was manageable. Through it all, Conor’s fun-loving personality prevailed. He enthusiastically attended special education classes at school and was active in Special Olympics basketball. He never met a person who wasn’t a potential friend. 

Shocking leukemia diagnosis

In 2018, when Conor was 16, everything changed. His neurologist ordered routine blood work to ensure his seizure medicine dose was correct. Results showed Conor had very high-risk B-cell acute lymphoblastic leukemia (ALL). The family quickly added the Cancer Center to its long list of CHOP departments that cared for Conor. 

Even though ALL is the most common form of leukemia with a high cure rate, the constellation of Conor’s other issues, especially his immune deficiency, complicated his treatment. 

“Because he is immunodeficient, he doesn’t react to standard treatment the same as other patients do,” Nicki says. 

His care was overseen by pediatric oncologist Leslie S. Kersun, MD, MSCE, MSEd. 

“She’s fabulous, the best in the world,” Nicki says. “She’s a brilliant doctor with the kindest bedside manner.” 

As traditional chemotherapy began to kill the cancer cells during the induction phase of treatment, Conor developed E. coli sepsis, a serious blood infection, and disseminated candida infection, a life-threatening fungal infection that spread to his brain and organs. It took months in CHOP’s intensive care, complex care and rehabilitation units to recover. 

Another key support was oncologist Susan E. McClory, MD, PhD, who was a fellow when Conor began treatment. “She stayed with us as we moved through all the other issues. She answered our thousands of questions. I don’t know what we’d have done without her guidance over the last seven years,” Nicki says. 

Bone marrow transplant for aplastic anemia 

Then, in 2020, Conor was diagnosed with aplastic anemia (also called bone marrow aplasia), a disease in which a person’s bone marrow fails to produce enough blood cells. While aplastic anemia can mimic the effects of chemotherapy in suppressing red blood cells in the bone marrow, it is a distinctive and rare blood disorder. 

David Teachey, MD, an oncologist/hematologist who treats patients with ALL and immune deficiencies, and Timothy Olson, MD, PhD, an oncologist/hematologist who specializes in acquired bone marrow failure syndromes, determined a bone marrow transplant (BMT) was needed to restore the function of Conor’s bone marrow. In a BMT, diseased bone marrow is replaced with healthy donor stem cells. 

The bone marrow transplant saved Conor’s life. In fact, he was 100% engrafted, which means his aplastic anemia was cured. However, the BMT also made him very, very sick. 

He developed chronic skin graft versus host disease, when the donor stem cells see the recipient’s body as foreign and attack it. For Conor, that meant his skin peeled off, as if he had third-degree burns. His formerly brown hair grew back white. Treatment included covering his body in petroleum jelly, many rounds of immunosuppressants and physical therapy. 

“Conor didn’t have any immune reserves to fight off anything else,” Nicki says. 

Dad’s T-cells to the rescue 

Conor spent a total of nine months in the hospital, first for his BMT and then fighting disseminated adenovirus, a serious body-wide viral infection that frequently attacks those with a weak immune system, and C. difficile colitis, a bacterium that inflames the large intestine. 

Conor’s father, Tim, played a huge role in Conor’s eventual recovery by donating his healthy T-cells multiple times. “We were grateful and hopeful that there was a course of action to try to cure Conor. Not every hospital would have been able to offer this treatment,” Tim says.

“When Conor was in the ICU, they told us daily that he might not make it,” Nicki says. “It was surreal and devastating — but he was able to make the long road to recovery. What made it bearable were the caring and kind people at CHOP we dealt with day to day.” 

‘The Mayor’ 

Through the many, many ups and downs, Conor’s effervescent personality shone through. “We call him The Mayor because he’s such a happy person. He talks to everyone and invites them to come over,” Nicki says. 

Conor’s behavioral issues made treatment difficult at times. “We laugh it off now, but it was challenging at the time,” Nicki says. “For example, he needed oxygen because he had fluid in his lungs, but he wouldn’t keep the oxygen mask on. The nurses and respiratory team created a lot of work-arounds. They made it work somehow.

“There were weeks when we were isolated in his room, so he would put on music, then sit on a chair in the doorway and conduct the music. “The nurses would dance down the hall,” Nicki remembers. “There was basically a dance party in the hallway. We all loved that.” 

Still a frequent visitor 

The total of 650 red blood cell units infused in Conor that aided his recovery led to an overload of iron in his organs. Although at 24 he has aged out of most CHOP care, he still comes to CHOP monthly for apheresis and chelation therapy to remove excess iron, helping to prevent organ damage. 

“Conor absolutely loves to go to CHOP. It’s his all-time favorite thing to do now,” his mother says. “Even though he’s a hard stick — they use ultrasound guidance, and it can sometimes take two or three tries — he still loves to come to see his friends, the nurses and doctors.” 

Otherwise, he’s healthy. He remains in a wheelchair most of the time due to avascular necrosis, when blood supply to the joint is interrupted, a side effect of the large doses of steroids he needed during his various treatments. Conor can get around in a walker for up to an hour. A knee replacement is possible down the road. 

Teamwork sets CHOP apart 

The combination of Conor’s complex conditions and his involved leukemia treatment has exposed his family to just about every department and division at CHOP. “Every specialty you can think of got pulled in to caring for him,” Nicki says. “What sets CHOP apart is its teamwork approach. 

“We’ve been to every hospital in New Jersey and New York, and at no other place does the team get together and consult together. In other places, it’s up to the parent to share pertinent medical information from one doctor with the other doctors. It’s not the same level of care as you find at CHOP! 

“The reason Conor survived is the incredible way his doctors and nurses solved problems together. Everyone from the clinicians, the SNAs, the nurses, the schedulers and therapists, like Music Mike [music therapist Mike Mahoney, MA, MT-BC] to the people who cleaned his room — they’re the most competent, kind and caring people I’ve ever met.”