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When Charles “Charlie” Ward was 11 months old, his parents took him to the doctors after noticing a golf ball sized lump under his armpit. He was diagnosed with Acute Lymphoblastic Leukemia (ALL) with MLL re-arrangement and began standard treatment. After multiple relapses and a bone marrow transplant, Charlie received CAR-T therapy. The treatment initially worked before Charlie relapsed for a third time. His parents then enrolled him in the huCART CD22 and huCARTCD19 trial. Charlie received a stem cell boost in April 2024 and since then has been healthier than ever!

In their own words, Charlie’s parents share the story of his treatment journey and the road to CAR T-cell therapy.

 

 When Charlie was 11 months old, we noticed a golf ball-sized lump under his armpit area. We took him to the doctors to get it checked out, and at first, his blood counts were relatively normal. They began testing him for all sorts of diseases. A week later, his lab results showed high white blood cell counts, and we were scheduled to meet with an oncologist and a hematologist.

On Tuesday, August 10, 2020, Charlie was diagnosed with Acute Lymphoblastic Leukemia (ALL) with MLL re-arrangement. It is a very aggressive, harder-to-treat form of leukemia that mainly impacts children under one year old.

Charlie immediately began standard treatment at Levine Children’s Hospital in Charlotte, NC. After five rounds of chemotherapy, Charlie was just weeks away from the maintenance stage of treatment when we noticed his enlarged testicle. In May 2021, we were devastated to find out Charlie not only relapsed in his testicle, but also in his bone marrow. We began reintroduction therapy and prepared for a bone marrow transplant (BMT).

On September 3, 2021, Charlie received his BMT with his dad as his donor. The treatment worked for about three months before Charlie relapsed again on December 9, 2021. The leukemia was back in his bone marrow and in his bloodstream.

Because the BMT didn’t work for Charlie, we were trying to find a different treatment. We discovered Emily Whitehead’s story and CAR-T therapy, which gave us hope that this treatment could be a lifesaver for our son.

On February 18, 2022, Charlie received Kymriah, his first CAR-T therapy, at Levine Children’s Hospital. After two months in the hospital, Charlie was able to enjoy the next 11 months mostly at home.

In early 2023, a lump grew around Charlie’s neck and jaw area. On March 8, 2023, a biopsy confirmed a third relapse of leukemia in the bone marrow and several extramedullary disease areas throughout the body. This included a 5 x 9 cm mass in his chest. Charlie immediately underwent re-introduction treatment.

Still believing in the promise of CAR-T therapy, we traveled to Children’s Hospital of Philadelphia (CHOP) in July 2023. There, Charlie enrolled in a new combined trial of huCART that targeted both the CD19 and CD22 markers. Shortly after returning home from Philadelphia, Charlie was hospitalized for a common cold virus, fever and neutropenia. He stayed inpatient from the beginning of August until September 18, 2023.

While it seemed like CAR-T initially worked well, Charlie’s bone marrow had never really recovered from chemotherapy and had very low cellularity. He experienced bad platelet issues to the point where he had to receive platelet transfusions two to three times a week for nine months.

In January 2024, a bone marrow aspiration showed early B-cell return. Charlie received a re-infusion of the CAR-T at CHOP. Since his bone marrow never recovered from chemotherapy, his doctors at CHOP decided it was best to do a stem cell boost.

Because Charlie’s father was his bone marrow donor in 2021, the doctors collected stem cells from him. On April 15, 2024, Charlie received the stem cell infusion. He began to take Neulasta and Promacta medications to help stimulate white blood cell and platelet production in his bone marrow.

The stem cell infusion worked! Since then, Charlie has been healthier than ever. His white blood counts and platelets are closer to normal than they’ve been since his initial diagnosis.

Today, Charlie is a happy, growing 5-year-old. He recently started kindergarten and joined a Tee-ball team. When Charlie first received CAR-T in 2021, we prayed that he would get to grow up and have these opportunities that every child deserves.

Charlie likes singing to worship music, playing with Transformers and being silly with his “bubba” and “sissy.” He enjoys life no matter where he is and has a sunny disposition. He loves being around people and celebrating life. When Charlie grows up, he aspires to be a police officer or a YouTuber.

We are so thankful that Charlie was able to receive these innovative treatments and is doing better. While Kymirah didn’t work for our family long term, it gave us more time to find an alternative treatment and helped Charlie avoid receiving an additional BMT. The side effects from a BMT are 10 times worse than CAR-T. Our family is so grateful for the work of the Emily Whitehead Foundation to help every patient receive access to these life-changing treatments.

We receive messages from patients and families around the world with experiences similar to Charlie’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access CAR T-cell therapy or other advanced therapies.

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