Last August, James McCarthy, now 3, was diagnosed with an extremely rare and aggressive form of leukemia, juvenile myelomonocytic leukemia (JMML). His dad Dan, recalls, “We went from what we thought was a perfectly healthy child to critically ill in 48 hours. He spent the next month and a half in critical condition at Lurie Children’s with a breathing machine keeping him alive. There were many occasions when we did not know if James would make it through the night.”
“His type of leukemia (JMML) is a rare disease, accounting for only 1 – 2 percent of childhood leukemias, diagnosed typically in children less than 4 years of age,” says Jennifer Schneiderman, MD, MS, Medical Director, Therapeutic Apheresis Program, Hematology/Oncology/Neuro-oncology/Stem Cell Transplantation.
In a matter of days after diagnosis, James had rapidly declined and was fighting for his life. James was admitted to the Lefkofsky Pediatric Intensive Care Unit where doctors, advanced practice providers, nurses and staff worked tirelessly to save his life. “James in particular was a normal, healthy child one day when he was seen in hematology clinic by Dr. Mallorie Heneghan, and critically ill requiring ICU level care the next,” says Dr. Schneiderman.
“Some of the best doctors in Chicago were working with him minute-by-minute, hour-by-hour to keep him going. Everything had happened so fast that we didn’t even have time to process one bit of news before we had moved onto another. But we kept in mind one thing: if you’ve met James, you know he is a strong-willed little toddler. If anyone can battle this, it’s James,” says Dan.
The McCarthy family learned that the best treatment option for James was for him to receive a stem cell (bone marrow) transplant. “The only known curative treatment is an allogeneic hematopoietic stem cell transplant,” said Dr. Schneiderman.
As James waited for a donor match, he underwent extensive chemotherapy. He was in a race against time.
Dr. Schneiderman said, “Because he is an only child, we looked to the National Marrow Donor Program® (NMDP) for an unrelated donor; he was lucky in that he had a perfectly matched unrelated donor available who was willing to donate stem cells (bone marrow) for him.”
Dan shares, “December 6th from 1:24 p.m. to 1:47 p.m. is a day and time we will never forget... a new chance at life for James. James’ infusion took just over 20 minutes. We weren’t sure how we would react during the process but it amounted to a room full of family standing (mostly in silence) each with our own thoughts and emotions. It was a celebratory feeling that James made it to this day given all he’s been through, both fear and hope for what’s ahead, mixed emotions when thinking about his body being forever changed... a lot of different things.”
As a way to say thank you to James’ donor and to help match others in need of a life-saving bone marrow transplant, the McCarthy family has organized a blood drive and donor registry on December 7 and/or December 8, 2019 at St. Alphonsus Church in Chicago, IL.
“We were very fortunate to quickly find a donor, and a 10/10 match at that. This isn’t the case for everyone and I can only imagine the agony for those dealing with similar situations without a donor lined up just hoping for a miracle.” Dan continues, “To James’ donor... without you the stress of this situation would be unimaginable. James received his transplant 118 days from diagnosis, just under four months.”
“While James was lucky to have a well matched unrelated donor, not all children do. Non-caucasian children are far less likely to have a well-matched donor available, so it’s essential to continue to reach out to minorities to broaden the pool of available donors for all children,” stressed Dr. Schneiderman. According to Be The Match, every hour, more than six people die from a blood cancer.
The process of registering to become a bone marrow donor is as easy as swabbing your cheek. To register for James’ blood drive and donor registry, visit #CuriousJames Blood Drive and Bone Marrow Registry.