A Caregiver’s Journey: Accredo team member shares story of resilience
Health care is filled with countless stories from caregivers, all inspiring and deeply moving, but some hit closer to home than others. One such story is that of *Janet and her daughter, Sarah. Janet, an Accredo team member for over a decade, had always been passionate about her work, serving clients who are providing for those in need of specialty medication. Little did she know that her personal life would become intertwined with her professional career in a profound way.
Beginning of the Journey
Sarah, from the very beginning, was a fighter. Born weighing only four pounds and facing developmental challenges, she began physical and occupational therapy before she was even one year old. She was diagnosed with an intellectual disability and motor coordination issues at the age of six. Her struggles were attributed to two chromosome deletions. However, Sarah grew into a healthy, thriving, and incredibly resilient child.
In May 2020, their lives took an unexpected turn. Janet noticed darkening skin on Sarah's neck and reached out to their pediatrician with concerns about potential diabetes. Blood work brought back an unexpected and far worse diagnosis—Sarah had a rare mutation of leukemia. Their health care provider swiftly initiated the treatment process, and the family went immediately to meet with an oncology team at a children's hospital that day. Sarah's admission coincided with the early days of the COVID-19 pandemic, which caused strict regulations to be imposed that allowed only one parent or caregiver to be with her. Janet anticipated a brief hospital stay to determine a treatment plan, but this was just the beginning.
The subsequent three weeks in the hospital were grueling, and that was only the first round of treatment. Janet found herself in a surreal situation, learning about the complexities of B-ALL (B-cell acute lymphoblastic leukemia) and the unique challenges posed by Sarah's Philadelphia-style mutation. She also adapted to life within the hospital—silencing the beeping monitors, summoning nurses, and navigating the halls with an IV pole and wheelchair to give Sarah some much-needed time outside her room.
Over the next six months, Sarah would be in and out of the hospital numerous times, experiencing two ICU admissions due to toxic reactions to chemotherapy. Countless hours at the hospital, including participation in a clinical trial, were ultimately unable to fully eliminate the disease, leaving the family devastated.
Glimmer of Hope
When no suitable bone marrow donor was found within Sarah's family or the donor registry, the family was left with only one option, a relatively new treatment called CAR-T cell therapy. This therapy involves removing cells from Sarah's blood, genetically modifying them, and reintroducing them into her body. While it could potentially eliminate the leukemia, it would also destroy Sarah's immune system. It became their last chance at a cure.
CAR-T cell therapy seemed like a miracle treatment. It led to Sarah's remission just one month after the procedure. Unlike traditional chemotherapy, it required no ongoing maintenance. However, this newfound lease on life came at a cost—Sarah's immune system was decimated. Naturally, Janet's commitment to her daughter was steadfast, and she would now have to ensure that Sarah received specialty medications through infusions to rebuild and maintain her immune system.
Accredo, Janet's employer, plays an essential role in her daughter's treatment. Sarah's health care providers initiated IV infusions in a hospital clinic, with the goal of transitioning to a therapy that could be administered subcutaneously at home every other week. While it relieved the burden of frequent hospital visits, it brought a new set of challenges. Janet, not a clinician, had to learn how to prepare the equipment, administer the infusions, and care for her daughter's medical needs. Accredo's nurses proved to be invaluable in guiding her through this process, offering support and patience as Janet transitioned into her new role as caregiver.
Emotional Toll of Caregiving
Being a caregiver carries an emotional and mental toll, and Janet was no exception. The daily medical care demands were overwhelming, even with her husband's partnership. Accredo's support was instrumental in easing this burden, ensuring that Sarah received timely infusions and enabling her to remain healthy and active. Despite the backing of those around her, Janet faced the very real risk of caregiver burnout. It's all too easy for caregivers to neglect their own well-being while focusing solely on those they care for. Janet learned the importance of self-care, understanding that to care for her daughter effectively, she had to care for herself as well.
Heart of Accredo
Accredo's unique strength lies not only in its dispensing of specialty medications, but also in the genuine care and concern it offers patients, encompassing the whole person and their caregivers. From contact center representatives to social workers, clinicians, nurses, and dietitians, the entire Accredo team's purpose is to go beyond the prescription to make the lives of patients, families, and caregivers better. Janet and Sarah's story is a testament to the profound impact that compassionate care can have in even the most challenging of circumstances.
Ending on a Bright Note
This story, with all its trials and tribulations, ultimately ends on a bright note. Today, Sarah is an outgoing and fun-loving 16-year-old. Thanks to specialty medications and Accredo’s support, she attends school in person, engages in adaptive sports, and recently experienced her first sleepaway camp.
*This article is based on an actual experience of an Accredo team member who serves as a caregiver to her daughter. This Accredo employee provided the details and approved the story below, however, the names used in the story have been altered to protect their privacy.
Meghan Pasicznyk, PharmD
Vice President, Accredo Product