A Special Connection: Team Approach Helps Autistic Cancer Patient
April 19, 2022
At age 22, Cory Neff was diagnosed with acute lymphoblastic leukemia (ALL) – a cancer in which the bone marrow makes too many lymphocytes, a type of white blood cell. Cory’s cancer was refractory, meaning his disease doesn’t respond well to typical treatment. After undergoing months of unsuccessful chemotherapy at another hospital, Cory was transferred to University Hospitals Rainbow Babies & Children’s Hospital for specialized care. But it wasn’t just his disease that made Cory’s treatment challenging. He was born with severe developmental delays.
“Cory is autistic and nonverbal. He can’t tell you what he is feeling and doesn’t experience pain the same as others,” explains Cory’s father Paul. “He is extremely loving and has abilities to do a lot of things but his interests are of a young child.”
Jignesh Dalal, MD, director of the Pediatric Stem Cell & Bone Marrow Transplant Program at UH Rainbow Babies & Children’s and a professor at Case Western University School of Medicine, gathered a team of experts to collaborate on Cory’s complex case. This included specialists in oncology, nephrology, cardiology, urology, neurology, physical therapy, behavioral health and others. The team discussed treatment options with Paul and Luisa Neff to consider for their son.
“Refractory ALL is an uncommon form of the disease that requires intensive treatment. But because Cory cannot express what’s happening and has other medical complications, we had to carefully weigh the benefits and potential complications of each treatment,” says Dr. Dalal. “Our goal was to get rid of the cancer as well as provide quality of life.”
It was decided with Lisa Hackney, MD, Cory’s primary pediatric oncologist, to give Cory immunotherapy medication that required 28 days of continuous IV delivery. After receiving two rounds of this cutting-edge medication, evidence of Cory’s cancer reduced dramatically.
“When we came to UH Rainbow Babies & Children’s Hospital we didn’t know if there was much that could be done for Cory,” says Paul, who traded shifts with his wife to stay with Cory at the hospital every hour of every day throughout his treatment. “The results from this therapy gave us real hope.”
With Cory’s cancer under better control, his team was able to proceed with additional treatment to help completely eradicate the disease. Although stem cell transplant was a potential option for Cory – and his sister had already donated stem cells for the procedure – the treatment would be difficult for him to tolerate. Dr. Dalal recommended first trying a new therapy called chimeric antigen receptor (CAR) T-cell therapy. Cory’s parents agreed.
CAR T-cell therapy involves drawing blood from Cory, separating his immune cells or “T cells” and sending them to a special laboratory. There, the cells are altered to find and destroy Cory’s cancer. The cells are then sent back to UH Rainbow Babies & Children’s Hospital and infused into Cory where they replicate in his body.
“Our main concern with CAR T-cell therapy was that it has the potential to cause neurotoxicity or small changes in the nervous system. Although this can be treated, the side effect would be more difficult to identify in Cory,” says Dr. Dalal.
Typically, the subtle symptoms of neurotoxicity are discovered by asking a patient to answer questions or write their name.
“Because that wasn’t possible, we had to be more creative,” explains Dr. Dalal.
For weeks before treatment, streams of professionals visited Cory in his hospital room just to sit and observe his mannerisms – how he ate, moved, played on his phone. They wanted to know Cory in a way they could detect any slight neurological differences that could result from the therapy.
“We approached Cory’s care a little differently because of his autism,” explains Sloane Cammock, NP, pediatric hematology/oncology nurse practitioner. “We showed Cory what we were going to do before we did it. We were extremely gentle and patient. And we worked to help reduce aggression by watching him closely and picking up on his wants and needs.”
A Happy Life
After two rounds of CAR T-cell therapy at UH Rainbow Babies & Children’s, Cory’s team were thrilled with the results. He showed no signs of neurotoxicity. And a special, ultra-sensitive molecular test could no longer detect any cancer cells. What’s more, Cory’s whole demeanor changed.
“He was peaceful and smiling. He would laugh and point to things he wanted to show us. He was at ease,” says Cammock. “It was amazing.”
Since completing treatment 18 months ago, Cory’s refractory ALL has stayed in complete remission. And although he visits the Angie Fowler Adolescent & Young Adult Cancer Institute at UH Rainbow Babies & Children’s Hospital monthly for injections to keep his immune system strong, he is back to living a happy, normal life. Cory loves to visit the dollar store with his parents, watch videos on his phone and make friends wherever he goes.
“My son’s care was truly top notch,” explained Paul. “Every person who walked into Cory’s room was there for him. They involved us in every step of his care and were amazing from start to finish.”