The Pierson family had a celebration in March. It wasn’t a big birthday bash, but the 1-year anniversary of 4-year-old Maddie’s bone marrow transplant – one of the methods used to knock out her uncommon and complex leukemia.
"After two ER visits elsewhere, she saw an orthopaedic doctor for pain in her legs. After some bloodwork he referred us to CHoR immediately for an MRI, said Maddie's mom, Stephanie. "She was diagnosed in November 2022 with acute myeloid leukemia with the subtype RAM phenotype. It's a very rare subtype that was just discovered about 6 years ago."
The expertise Maddie needed was right here at CHoR.
"Maddie was diagnosed with a rare and challenging form of leukemia that required a specialized approach to treatment," explained Dr. Beth Krieger. “Initially, she underwent conventional chemotherapy. Following this, she was given a medication that was not yet approved by the FDA but was made available through an individualized new drug (IND) protocol. This medication successfully eliminated her leukemia, after which she underwent a bone marrow transplant.”
These processes required several hospitalizations. In fact, Maddie was in the hospital the day all the patients moved from the pediatric floor in Main Hospital into the new, completely kid-focused Children’s Tower last year. The Children’s Tower includes a dedicated pediatric bone marrow transplant unit perfect for Maddie and other kids requiring specialized care while facing weakened immune systems.
“It was definitely exciting and a smooth transition. The new tower is full of technology and kid friendly,” said Stephanie.
To prevent the recurrence of her leukemia, Maddie continued to receive the IND medication for a year after her transplant. She’s had regular appointments in the outpatient clinic through it all too.
“I've been with Maddie during Hickman dressing changes, blood draws, nasal swab for admission to the bone marrow transplant unit and port accesses,” said Katie Barber, child life specialist, who provides support and a dose of fun for kids in the hematology and oncology clinic. “Maddie has had many days when she needs to be clinic for many hours. Her favorite thing to do during those days is play hide and seek in the waiting room. We’ve also played cards, painted and made up our own art projects. She loves giving directions.”
With so many appointments and procedures, the clinical team took great care to provide for Maddie’s physical and emotional needs.
“Krissy, Maddie’s nurse in the clinic, has learned what Maddie likes and dislikes and is always sure to do everything just right,” said Stephanie.
“I took care of Maddie every Monday when she came to clinic for the last several months. When she first had her port placed, she was very anxious to have it accessed, understandably so. Maddie is the best helper so to make this less scary for her, she was always my assistant and would help with all the things she could,” said Krissy. “Maddie was also particular about the type of band aid she received. She would ask me every week when I walked into the room what type of band aid I had for her that day. After a few misses, I soon realized I could not go wrong with Disney princesses or Minnie Mouse.”
Dr. Krieger describes Maddie as “tenacious, sweet, kind and a little bit of a troublemaker in the best way possible.” This feistiness and her specialized medical care were the perfect combination.
“Following Maddie's treatment she shows no signs of leukemia, which is good news,” added Dr. Krieger. “She was one of the initial patients to receive the new medication right after her diagnosis and has responded well to it. However, this makes Maddie’s case unique, as there are not similar patient histories for comparison, making it hard to give a precise prognosis. But the fact that she’s responded well to the treatment gives our team an optimistic outlook.”
Maddie will continue to follow up with Dr. Krieger, who specializes in bone marrow transplant and stem cell therapies, for the foreseeable future. Thankfully, she’ll have much more time for all the things she loves.
“Maddie loves anyone showing her attention. She has a special relationship with her older brother, Riley. They’re looking forward to trips in our new camper this summer,” said Stephanie. “She is a diva just as much as she keeps up with the boys. She loves the outdoors, music, dancing and all the candy she can handle!”
As the Pierson family looks ahead, they’re grateful for the impact the CHoR team has had on Maddie, and vice versa.
“We have had nothing but top notch care from the nurses, doctors and staff. Maddie loves all the attention she gets from staff she has developed relationships with,” said Stephanie. “I truly believe that everyone has her best interest at heart. I think Maddie has impacted their life as well. It’s going to be hard to forget who made them play hide and seek at clinic.”
Maddie is transitioning from being only the 9th person in the United States to receive targeted treatment for her type of leukemia, to getting ready to start kindergarten in the fall.
“I am so proud of her resilience and how such a little person could adapt to and handle all the things that were happening to her body. She endured trauma, pain and suffering that some adults aren’t able to handle. She was a champ and will forever be my hero,” added Stephanie.
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