Share

A few weeks before her fifth birthday, Maeve Frampton was diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL). She was considered the best-case scenario with a high chance of recovery after standard treatment. However, after completing chemotherapy, she relapsed six months later.

In 2022, Maeve received a bone marrow transplant (BMT). At her two-year post BMT check-in, doctors discovered that she had relapsed for the second time.

Determined to explore an alternative to another BMT, Maeve’s mom Katie Frampton enrolled Maeve in the Prodigy huCART19 trial at Children’s Hospital of Philadelphia, where Maeve received her T-cells in May 2024.

At her three-month post-CAR-T appointment in August 2024, Maeve’s scans showed no presence of leukemia. At her eight-month follow-up, she was still showing no B-cells present! Maeve and her family remain hopeful that her T-cells will continue to work and that she will be declared cancer-free.

In her own words, Maeve’s mom Katie shares the story of her daughter’s treatment journey and the road to CAR T-cell therapy.

At the end of January in 2019, just before her fifth birthday, Maeve was diagnosed with B-cell Acute Lymphoblastic Leukemia (ALL). She was considered the best-case scenario, and she did great throughout her treatment. She never questioned the medicine or the cancer.

Before the first BMT, we were looking into ten-year studies that had just come out for CAR T-cell therapy, and we were following the research and seeing the results. If she ever relapsed again, we were going to run to CART-T cell therapy to try this amazing treatment.

Our hospital was biased toward BMTs and didn’t encourage CART T-cell therapy, so we pursued a second opinion from a provider who was not one of Maeve’s regular doctors. They also encouraged BMT since Maeve was a high-risk leukemia patient, so that’s what we did. It was as uneventful as BMTs can go, but still a rough year.

Around Maeve’s two-year post BMT appointment, she had a kidney stone that required an emergency room visit for stents to be put in. Everything else was looking up though. Her labs were great. It appeared as if she didn’t have cancer, ever.

We asked the care team if, during her kidney stone operation, they could do her two-year BMT check-in. Our local hospital did not see cancer. However, Johns Hopkins evaluation of the check-in uncovered a concern.

Two weeks later, our doctor called us at 6 p.m. on a Friday night and told us that Maeve’s leukemia was back and that it had grown. They wanted to schedule her for CAR T-cell collection. We researched all the available trials on the Emily Whitehead Foundation’s website. Two weeks before the date our local hospital was going to collect Maeve’s T-cells, we traveled to CHOP.

I had learned about the Emily Whitehead Foundation and was connected to Tom Whitehead, Emily’s father, through Betsy Larrabee who blogged about her son Beaudin. Maeve and Beaudin shared the same diagnosis and treatment plan, with Beaudin being two weeks ahead in his diagnosis, so we followed Betsy’s journaling to get a sense of their cancer journey and experiences.

Betsy and I would check in on each other and how Maeve and Beaudin were doing. Through this connection, Betsy reminds me that I’m not alone. Not everyone knows the thoughts I’m having when I’m in the waiting room alone. But Betsy does. She sends reassuring thoughts, makes me laugh and has been there for me through all the emotions that come with your child being treated for cancer.

A cancer diagnosis changes everything for a family. We’re getting through the process, but it has changed all of us, including Maeve’s siblings. My husband and I say we have one child with cancer, but six children with trauma.

It’s been hard for Maeve’s sister, Pearl, who’s only 22 months older than Maeve. Pearl was Maeve’s bone marrow donor, and she’s seen a lot of raw emotions with Maeve’s treatment and the CAR T-cell therapy process.

We’ve seen the most change in Maeve. When she was little, she loved going outside to play and she loved getting dirty. She was mischievous. She loved ballet. She just embraced being a kid.

At the time of her diagnosis, she never questioned being sick or the things they told her to do. However, there’s a big difference between turning five and being diagnosed with cancer and then turning 11. Now she doesn’t laugh as easily as she used to, and she gets a little sadder and more irritable around the holidays and her birthday.

It breaks my heart because she’s trying so hard to heal and get through this, but it’s hard because she’s relapsed twice, and she constantly feels as if she won’t get better again. How can we expect anything else when she’s seen what she’s seen, and getting older and more mature through this process?

We wouldn’t be where we are now, though, without the help of Betsy, the Whiteheads and the Emily Whitehead Foundation.

When I look at the Whiteheads and see that they’re still in the fight for all the kids and families they’ve helped, I don’t really have words. Our kids are their kids.

We’ve done two and a half years of chemotherapy. We’ve done BMT. Now we’ve done CAR T-cell therapy, and I can tell you that every kid going through cancer deserves that chance.

CAR-T was our Hail Mary, and we want to do whatever it takes to continue with this process until we get into remission. For the first time in 60 years, there’s something different and it’s working. CAR T-cell therapy is working.

We are so thankful for the Emily Whitehead Foundation and all the work being done in the labs to help bring Maeve and other kids closer to enjoying a life free of cancer!

We receive messages from patients and families around the world with experiences similar to Maeve’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.

To help us in our mission to give patients around the world the opportunity to Activate the Cure, Get Involved or Donate now.