Hannah Bean at the 2023 CCF Gala, pictured with (L to R) Christine Pratilas, M.D. her treating physician, CCF President Tasha Museles (wearing Hannah’s dress design), and Hannah’s mother, Erica Bean.
It started with severe back pain in May 2020. Six-year-old Hannah Bean of New Market, MD, went to bed as usual, but woke up a few hours later in excruciating pain.
Being just two months into the pandemic, her local pediatrician’s office had shifted to virtual appointments only. Despite repeated visits with doctors in the practice and requests for an MRI, Hannah was turned down time and time again, being told the pain would likely disappear on its own.
Hannah’s mom, Erika, a former nurse, knew this pain was not typical. Hannah is her youngest of three children. Having been through the typical pains and emergency visits with older brothers (Tristan, now 14 and Gavin, now 11), Erika knew Hannah’s pain was different. An in-person visit to the pediatrician’s office yielded bloodwork and a back x-ray, but neither indicated anything suspicious. They were sent home, but Hannah remained in tremendous pain.
Frustrated with the pediatrician’s office, Erika took Hannah to a local orthopedic doctor to push for an MRI order and received it. A month had now passed since the pain began, and Erika noticed that Hannah’s left calf looked to have developed a bulge. Concerned that it be related to the back pain, Erika immediately took Hannah to urgent care. A preliminary ultrasound was done and the doctor was concerned. Two MRI scans of Hannah’s back were scheduled for that evening.
At the imaging center, Hannah endured two back-to-back MRIs lasting nearly four hours while Erika was growing more concerned. They received a call shortly after, urging them to go straight to Hopkins because multiple tumors were found throughout Hannah’s body. Erika knew that the news was not good, but they were still seeking a diagnosis.
The team at Hopkins had to further research and diagnose Hannah’s many symptoms, labs, and MRI results. Hannah was sent home and told to return a few days later, where she was met by Christine Pratilas, M.D., a CCF-funded pediatric oncologist. A team was then able to biopsy the tumors and Hannah was diagnosed with alveolar rhabdomyosarcoma. At the time, the family was told there was a 10-15% cure rate. Hannah was admitted on June 11 for port placement and to begin chemotherapy. Treatment began immediately with 16 cycles of chemotherapy and radiation. The family did the best they could to be at the hospital during the pandemic, which complicated everything.
Hannah endured treatment for a year, with May 2021 marking the end of the cancer treatment. The family opted to keep Hannah on a maintenance treatment, with a three-drug regimen. However, within 24 hours of starting the maintenance, Hannah had blood in her urine, a fever and began limping. Hannah was admitted to Hopkins following the hematuria and a swollen leg (radiation recall), to be treated with a steroid.
Hannah endured treatments, pain, and continued limping through January 2022 when she fractured her right leg during a fall, resulting in a full leg cast. It was during this time that it was discovered that the disease and chemotherapy all but destroyed her right tibia.
Late in December 2022, Hannah slipped again and fell, this time at a Washington Capitals game, and broke her femur. Hannah endured a ten-hour surgery on March 2023 to attempt to repair what was left of the bone. Today, Hannah manages with an external fixator on her leg and continued antibiotics due to an ongoing infection in the leg. She rang the bell on July 5, 2023, after three full years of chemotherapy.
In late August, Hannah was admitted again for another infection in her leg. This time she needed several surgeries to clean out the wound. She went home with a wound vac in her leg and IV antibiotics that will continue for 6 weeks.
Hannah started fourth grade at Blue Heron Elementary school in Fall 2023. When we met in August, she proudly announced that she will turn ten on January 7, 2024. Today, Hannah is an accomplished artist and offered to design a dress for me for the 2023 CCF Gala. I am honored and humbled by this beautiful gesture. Erika shared with me that Hannah displayed strong artistic skills as early as age three. The fact that Hannah is designing dresses today is truly a testament to her strength. Hannah would prefer not to be bothered with the side effects of the chemotherapy. She has a lot to do, including going to camp, hanging with her brothers, playing with her dog, Annie, and designing dresses. In fact, when Hannah met me in August, she began immediately with plans to design my dress for the 2023 CCF Gala. Her mother Erica, an accomplished dressmaker, brought her vision to life. You cannot help but to feel inspired by this courageous hero.
With appreciation,
Tasha Museles
UPDATE: Hannah and her mother were incredibly generous and designed and made another incredible gown for the 2024 Gala!
