At just 5 months old, in October 2020, Opie was diagnosed with infant acute lymphoblastic leukemia (ALL). When a bone marrow transplant resulted in relapse, CAR T-cell therapy became Opie’s last remaining treatment option. In July 2021 Opie received his CAR T-cells at Great Ormond Street Hospital in London. Today, he remains a happy and well 18-month-old!
In her own words, Opie’s mother Lucy shares the story of her son’s diagnosis, relapse, and the journey to CAR T-cell therapy.
Opie was a well baby, but I knew something was just not right and took him to the doctor. I couldn’t put my finger on exactly what might be wrong. He was quieter than usual and had started to look pale.
Our amazing general practitioner checked him over, noticed his tummy was swollen, and advised that Opie be sent to our local hospital. Opie had a white blood count of over 600 and we were blue-lighted to Addenbrooke’s Hospital in Cambridge that night. Although he spent 5 days in Intensive Care, Opie remained happy, smiling, and presented as relatively well.
Our world came crashing down when we told the devastating diagnosis that our little baby boy, our youngest with four older sisters, had cancer. He was diagnosed with high-risk KMT2A gene-rearranged infant acute lymphoblastic leukaemia (ALL).
Opie didn’t respond to steroid treatment, and was very quickly placed in the high risk category. Within days, we were told he would need a bone marrow transplant. The National Health Service (NHS) in England had recently made CAR T-cell therapy available for children, but to be eligible for it a child had to have relapsed.
In February 2021, Opie received a bone marrow transplant from an American donor located in New Jersey. After 5 weeks in isolation at Leeds Hospital we were able to take Opie home.
Again, it appeared that Opie was well — the bone marrow transplant had worked and he was showing all the right signs for success. In May 2021 Opie had his central line removed and received his 3-month bone marrow aspirate.
Within days our world was shattered into pieces again. A small percentage of leukaemia cells were found in the molecular study of the aspirate, confirming that Opie had relapsed.
Now, Opie’s only remaining chance for survival was CAR T-cell therapy.
Our treating hospital referred him to Great Ormond Street Hospital (GOSH) in London. Thankfully, he was accepted for treatment and Opie and I were at GOSH within a week. There, his cells were harvested and sent to New Jersey (where his bone marrow donor cells originated as well!) and Opie began rounds of chemotherapy and immunotherapy while his cells were made into the amazing CAR T-cells.
This time, both Lewis and I were able to be with Opie during treatment at GOSH. The conditioning treatment was a breeze in comparison to bone marrow transplant, and Opie received his CAR T-cells on July 28, 2021.
After 4 weeks in the hospital Opie was home. Since then, he has been a happy and well child. He has weekly blood taken and has just started Immunoglobulin therapy.
Today, Opie is the happiest 18-month-old I have ever met. He loves looking at books, is learning to walk, pulls the funniest faces and is the most loving — offering his head for kisses and leaning in for cuddles. He is a cheeky, cute, inquisitive little boy.
He has completed our family and we can’t imagine life without him.
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