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Aria Olsen

Aria Joy was diagnosed with B-cell Acute Lymphoblastic Leukemia on August 15, 2020, she was 3.5 years old. The only symptom she had at the time of her diagnosis was bruising that did not go away and became increasingly common. After a trip to the pediatrician's office & blood work, her family was called within hours to head to Children's Hospital in Pittsburgh. Her diagnosis was very shocking. 

Aria’s cancer did not achieve remission after the first round of chemotherapy. In most cases of children with this type of leukemia, remission is achieved in the first couple of weeks. Aria was in the 10% of children who do not reach remission with standard therapy and began high risk treatment. After another 3 months of more aggressive chemotherapy, Aria’s leukemia still did not go into remission. In fact, not only did Aria’s cancer not go away, she relapsed while on treatment. After further testing on what could be causing the resistance to chemotherapy, it was determined that Aria has a rare subtype of B-Cell ALL-- TCF3-HLF. 

When Aria and her family were first told about her cancer, they were told her chance of survival was 90%. Once the rare mutation was discovered, Aria was considered to have terminal cancer.

Aria was able to try immunotherapy treatments and finally she was free of leukemia. Since this sub- type of leukemia has a difficult time entering remission, and once in remission, there is a 75% chance of it coming back, the next step to a lifelong cure was a bone marrow transplant.

Aria and her family traveled from their home near Pittsburgh to the Children's Hospital of Philadelphia for her bone marrow transplant. She had a perfect unrelated matched donor. After many rounds of harsh chemotherapy and radiation, Aria had her transplant and remained in the hospital for more than 40 days.

After recovering and returning with her family, Aria, her parents and her two younger sisters, lived in the Philadelphia area for 100 days to remain close to the hospital and frequently visit for check-ins. Shortly after returning home to Pittsburgh, just 4 months after Aria's first transplant, cancer returned. 

Since options were limited, Aria was enrolled in a clinical trial at the Children's Hospital of Philadelphia. In November of 2021, Aria's blood was collected. It was then sent away to be engineered and she was prepared for CAR-T cell therapy. Aria and her family packed their bags again to live in Philadelphia for 50 days. On January 4th, 2022, Aria had her new T-cells. Within a few hours, Aria’s little body responded with a high fever to the cells introduced. Within a few days, Aria’s body rejected the cells, giving her severe Cytokine Release Syndrome. Aria was so sick that she was placed on a ventilator. 

Aria remained on the ventilator for 4 days. Once it was determined it was safe for her to be removed from the breathing device, it was obvious that Aria had severe swelling in her brain. She was unable to communicate with her family. As the swelling decreased days later, Aria became her normal self again. Except she still had difficulty with breathing and remained in the hospital traveling back and forth to the intensive care unit. 

After 3 weeks, Aria was discharged from the hospital. The CAR-T cell therapy had worked and Aria’s body showed no evidence of disease.

Unfortunately, 3 short months later, Aria Joy relapsed. This time, with a different variation of the B-Cell Leukemia. At this point, Aria’s prognosis was extremely poor. Her family was encouraged to evaluate if they would want to keep fighting or begin end of life care. 

The decision was made to try another immunotherapy in hopes to allow Aria a second bone marrow transplant. The immunotherapy was successful and therefore Aria Joy had her second transplant on July 7, 2022 from a cord blood donation. 

With the high risks of a second transplant, Aria and her family were encouraged to stay in the Pittsburgh area. They knew it was unlikely to be successful or to assist in life-long remission. 

The summer before Aria’s first day of Kindergarten she had already endured more than most grown adults do. In July and August of 2022 Aria remained in the hospital. She had graft vs. host disease, as well as many other side effects related to the high doses of chemotherapy and radiation she received prior to transplant. 

Today, Aria is a thriving 7 year old who just finished 1st grade! She has had some challenges related to the late onset effects of her treatment, but overall she is happy and healthy. She has had all medical devices removed from her body and now only visits the doctor every couple of months. On July 7, 2024, it will be 2 years since Aria’s cord blood transplant! 

While Aria is not considered cured until 5 years of no disease. She is living proof that miracles happen! If you spend a day with her you would learn that every day with Aria is a miracle!

Aria Olsen
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