Even when she’s here for one of her four-hour blood transfusions, she’s ready to dance.
“At her last transfusion Beckett and three other girls had a dance party,” her mom, Morgan, recalls. “One of the nurses was trying to help a child feel better and started playing ‘Baby Shark’ and it just went from there. Doctors and nurses joined in too.”
Onstage, Beckett twirled as a butterfly in her recent dance class recital. At home, she twirls in style – in fancy dresses – dancing to her favorite Disney songs, practicing being the princess she plans to become someday. “She loves getting dressed up, play makeup, getting her hair done and wearing pretty dresses,” Morgan adds, describing some of Beckett’s favorite activities.
Beckett’s family adopted her about a year and a half ago from Guangzhou, China. Her parents had only seen a photo of her and read thru a file describing her personality and medical history when they flew to China once the adoption was approved. Their first call after meeting Beckett was to her big brothers, Tyler, 10, and Brooks, 7. “They were excited from the beginning,” Morgan says, “so pumped to see her and to share the adoption news.”
Morgan and her husband, Marcus, were aware from the file that Beckett has a medical condition that requires blood transfusions every three weeks. Before going to China they’d been in touch with Dr. India Sisler, clinical director of our ASK Pediatric Hematology and Oncology Clinic team, which specializes in treating cancers and blood disorders, and Dr. Suzanne Lavoie, founder of our International Adoption Medical Clinic, so they could plan and prepare. Three days after coming home to Midlothian, Beckett had her first visit to CHoR.
Beckett has the most serious form of a group of blood disorders called thalassemias. These disorders affect how the body makes hemoglobin, the protein that carries oxygen through the body in red blood cells. The body typically makes new red blood cells daily, but with thalassemia, red blood cells are destroyed at a faster rate than they’re created, or in cases like Beckett’s, the body doesn’t have what it needs to make hemoglobin and red blood cells aren’t made at all.
Not having enough red blood cells can lead to severe fatigue/tiredness (a condition called anemia). It can also affect organs and lead to serious complications, and without blood transfusions, Beckett’s form, beta-thalassemia major, is life-threatening.
Because she’s so young, Beckett’s transfusions are a two-day process. Blood work and prep work are completed the first day, then she’s here from 9 a.m. to 3 p.m. the following day for the transfusion and monitoring. She has a surgically created opening (a port) on the right side of her chest where a tube connects to one of her major veins to deliver blood to her body. Her most-favorite toy, a doll named Flower, is usually by her side. Beckett made her a mask similar to the one she wears over her mouth during transfusions so her beloved Flower can be safe while she’s here.
Prior to coming to CHoR, Beckett didn’t have a port. Without it, one transfusion could take up to a week and some of her veins were becoming damaged because they were accessed so many times for transfusions. Beckett was understandably nervous coming here at first, but hasn’t shed a tear since her first few visits. “When she first came, she had huge anxiety issues with doctors – really anyone in a white lab coat,” Morgan recalls, “but within a few visits I haven’t seen that anxiety. Now she looks forward to coming as much as if she was going to Kings Dominion or something.”
While she undergoes the transfusion, Beckett’s doctors and other members of her team come by to check on her and offer comfort and our child life team brings games and crafts to help ease stress. “They really try to make it fun so they’re not just sitting there on an iPad,” Morgan says gratefully.
Morgan’s brothers come for support when they can too. They spend time in our Sibling Center, which provides activities while a brother or sister is having a procedure or treatment. When she’s done, they check on her, ask questions about how it went and look at her port – which they call her “boo boo” – to make sure she’s OK. “It’s a very good experience for all three,” Morgan adds. “Her brothers are really proud of her.”
Beckett has monthly appointments with Dr. Sisler focused on the transfusions and managing any complications they may cause and support services as needed. “Every treatment comes with side effects,” Dr. Sisler explains. “We work hard to balance the risks and benefits of her treatment plan.”
Her family works with the team’s dietitian on managing related growth issues and educational consultant to help with getting her ready for kindergarten. She has weekly physical therapy focused on building core strength as her energy levels are low when her hemoglobin’s low which affects opportunities for physical development.
Thalassemia is inherited through genes and research in gene therapy as a possible cure is ongoing. A bone marrow transplant is another option (bone marrow produces red blood cells) “but there are lots of risks,” Morgan admits. “We want Beckett to be part of the decision if we go that route. And she’s doing well with regular transfusions.”
Part of doing well is that she’s able to treat her transfusion days as just another day in her life, even the type of day Morgan says they’d consider good overall: “Everyone from parking attendants to doctors and nurses and those who greet us in the lobby and the Sibling Center – everyone greets Beckett and makes her feel special. When we get there in the morning, the valet parking attendant says ‘Good morning Princess, we’ve been waiting for you.’ On her way out they’ll ask to see the craft she made. And they always compliment her on her dresses. It’s really above and beyond, from beginning to end.”
Beckett’s silly and spunky personality has emerged in the past year and a half. “She lights up the clinic when she’s here,” Jennifer Newlin, certified physician assistant for hematology and oncology, says fondly.
One of Jennifer’s favorite memories of working with Beckett is walking into the exam room and seeing her sitting on the exam table with her play makeup kit asking: “I do your makeup?”
“She did ‘the makeup’ of nurses, medical students and anyone who came into the room,” Jennifer remembers. “It was hilarious. I just smiled as she brushed the blush onto my cheek and beamed at her work!”
Seeing Beckett transform has been an inspiration for her team. “At her first visit, she didn’t speak a word of English, and was visibly terrified,” Dr. Sisler remarks. “To see her grow and thrive has been a privilege. She adores her parents and brothers, she’s comfortable in the clinic and loves her medical caregivers, and she’s so smart and so kind. To witness what love can do for a child has been humbling.”
There’s so much about Beckett that couldn’t be predicted from her file, so much that her family has realized as they’ve watched her handle her treatments. Perhaps, most important of all, is that they now know their sweet princess-on-the-outside is filled with so much strength. “We’ve learned how amazingly strong Beckett is through this process,” Morgan confirms. “We really admire her for pushing through and having a positive attitude. When people see her in public, they have no idea what she is going through because she’s so happy and positive.”
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