Sandy Aiello
For late patient's mother, hospice role is chance to serve, thank
The Aiello family - Sandy (holding Amanda) and Chuck (holding Kayla) - were out in full force at the 1999 Boston Marathon.
Each time Sandy Aiello looks at the ceramic handprint made by her daughter Kayla in the last weeks of her life, she smiles. In the midst of the worst experience a parent can imagine, Aiello and her husband, Chuck, were comforted by the fact their 5-year-old spent her final days playing with cousins, going out for ice cream, and sleeping in her own bed.
Not all kids are so lucky. The Aiellos were able to secure visiting nurses and social workers with pediatric training for Kayla through HealthCare Dimensions Hospice (HCDH), but only after discovering that this and many other area hospices lacked programs designed to address the special needs of children with end-stage diseases and their families. Now, after working as a volunteer at HCDH for the past six years to help change these circumstances (and as a member of its board of directors for nearly three), Sandy has taken her dedication to the next level: a full-time job.
Aiello is the new development and communications manager for the Waltham-based HCDH, a Dana-Farber subsidiary since 2002. She heads up fundraising and public relations efforts for the hospice, which offers comprehensive medical, social, and spiritual care to Boston-area patients and their families when aggressive treatment is no longer appropriate.
This includes promoting the "Hospice for Kids" program she developed with HealthCare Dimensions staff and fellow parents, as well as organizing the event she created four years ago and which annually generates HCDH's largest fiscal gift - the 5Kayla Walk/Run. Held each Mother's Day in Aiello's native Waltham, where she still lives with Chuck and their 9-year-old daughter, Amanda, it has already raised more than $170,000 for the cause.
"Sandy's first-hand knowledge of hospice and how it benefited her family is invaluable, as is her incredible energy," says Jennifer Harding, Aiello's predecessor in the administrative position. "Whether its communicating with a patient's family members or spreading the message about what hospice is to the general public, it's a wonderful dimension to bring to the position. She can say to people, 'I know what you are feeling,' and mean it."
For Aiello, the new role is a way of giving back by helping others. "Because of Healthcare Dimensions, my family was able to properly say goodbye to my father-in-law, then Kayla, and then my mother-in-law," she says, recalling the period in 1999-2002 when all three died. "A lot of people don't realize you can go home in the final stages of life and still be comfortable, so one of my key jobs is educating the public."
Nine 'wonderful' weeks
Aiello's own education came in July 1998, when Kayla was diagnosed at age 3 with Wilms' tumor, a cancer of the kidney that primarily affects children - and had already spread to her liver. Three surgeries, two radiation cycles, and chemotherapy at Massachusetts General Hospital followed, and in April 1999, she went into remission. Then, while the family was in Disney World celebrating Kayla's 5th birthday that October, she began feeling sick again. The cancer was back and this time could not be stopped.
"The next April, the doctor told us she probably had a month left," recalls Aiello. "Knowing how big and close a family we were, and that her pain was controllable, he thought she would be happier spending that time at home. She ended up living nine weeks, and in those weeks we made wonderful memories."
Visiting nurses provided by HealthCare Dimensions Hospice tended to Kayla's medical needs, while social workers used art therapy to learn what she and her young cousins were feeling. Family members helped hospice staff assemble an album of photos and items spanning Kayla's entire life, starting with Sandy's first ultrasound picture. They presented it to Sandy and her husband shortly after Kayla passed away on May 26, 2000, surrounded by loved ones.
Aiello was so moved by the hospice experience that she vowed to make sure other families could benefit from it. Consequently, she helped HCDH to form a parent's advisory committee, and later to establish Hospice for Kids. Also, in 2003, Aiello testified before the Massachusetts State House supporting a pediatric palliative care bill that would allow patients to have covered hospice care at home while still receiving standard in-hospital therapies.
"Today, thanks in large part to Sandy's efforts, HeathCare Dimensions takes care of more pediatric patients than any other hospice in Massachusetts," says HCDH Director Ellen Leiter, RN. "We have ongoing pediatric education for our staff, with Dr. Joanne Wolff [MD] of Dana-Farber as our pediatric medical director. We also provide bereavement follow-up for 36 months for families of children and adolescents, versus 13 months for adult families, because we've learned the grieving is very different when a child has died. Parents have a harder time giving up hope - or redefining it - then moving on."
Whether running with Amanda on Mother's Day or helping other families every day, Sandy Aiello is always moving - with Kayla nearby.
