When the Barton family moved to New Market, Maryland in September 2020, they were focused on getting their three kids settled in a new home during COVID. Twins Holly and Cora (then five) with younger brother, Richie (then three), were just getting used to their new home and adapting to life in the Frederick area. The twins were starting kindergarten.
It was in October 2020 when mom, Lauren, first noticed that Holly would experience pain and a fever suddenly, just to have it disappear. This pattern went on for several months. However, as a nurse at Georgetown Hospital, Lauren was paying attention to Holly’s energy level and grew concerned.
During a family vacation in January 2021, Holly was in so much pain that she couldn’t buckle her own seatbelt. Lauren knew something was not right. Bloodwork at the pediatrician’s office indicated it was cancer. The Bartons were sent to Johns Hopkins Hospital where Holly was diagnosed on January 20, 2021 with B-cell Acute Lymphoblastic Leukemia. Holly was admitted for five days, under the initial care of Patrick Brown, M.D., now treated by Kristen Schratz, M.D. Holly had a PICC (peripherally inserted central catheter) line inserted and also had her first of many lumbar punctures. Holly had a bone marrow biopsy, and received her first round of chemotherapy during this admission.
During treatment, Holly, Cora and Richie did not participate in school, or extracurricular activities in order to ensure Holly remained as healthy as possible. Cora had to forego gymnastics classes.
Holly endured treatment until March 29, 2023 (797 days to be exact) and rang the bell at Hopkins on April 3, 2023.
Today, Holly visits the clinic every month for blood draws. Now eight, Holly and Cora just finished second grade and are focused on a summer of ‘firsts’, including soccer and day camp.
Lauren and her husband, Richard Barton, expected that Holly would qualify for an IEP (independent educational program) given some of the delays she was experiencing. But her IEP request was denied. Holly experienced several cognitive and developmental delays that her parents assumed would be addressed with the school.
The Bartons were connected with the Kennedy Krieger Institute, who, through the Hospital Education Liaison Program (HELP), assist families through the IEP process, advocating on behalf of the patient to ensure they receive services for which they are entitled, at no cost to the families. When Holly was in first grade participating in the Frederick County virtual learning program, the family met Dr. Lisa Carey, who assisted the Bartons in the process of getting a Holly a 504 plan. Dr. Carey continued to assist the Bartons when Holly transitioned to in-person learning in second grade.
The Kennedy Krieger Institute recognizes that there is often a lack in understanding and identifying delays due to chemotherapy and other toxic treatments separately from traditional delays. And, like the Barton family, educational systems and teams are not trained to understand these delays and impairments due to chemotherapy and that consistent cancer treatment can impact a young patient’s access to learning.
Lead by Dr. Lisa Jacobson and Dr. Lisa Carey, this vital program helps many local families navigate important education programs for their children who are going through treatment or have completed cancer treatments, but who suffer with lingering cognitive impairments. The Children’s Cancer Foundation, Inc. (CCF) has proudly supported the HELP at Kennedy Krieger since 2020.
Dr. Carey attended multiple 504 and IEP meetings and shared information in the meetings on the effects of chemotherapy on pediatric patients and how it can affect learning. She helped the team understand the findings of Holly’s neuropsychology exam and assisted the Bartons in understanding the findings of the school exams. Initially, Holly’s school found her to be ineligible for the IEP earlier in the year. However, Dr. Carey explained that Holly should have met criteria for an IEP and helped the family justify continuing to fight for educational assistance for Holly at future IEP meetings. Without Dr. Carey’s help and knowledge, Lauren Barton believes they would have simply accepted the denial. In May 2023, Holly was finally was found eligible for an IEP. The Bartons are grateful to Dr. Carey and the HELP.
The Bartons are hopeful that Holly will continue to heal and adapt to her “new normal”, and look forward to a summer without daily treatments.
CCF plans to keep in touch with this amazing survivor and report back on her progress!
