Halloween party gives parents snapshot of life

Halloween party: snapshot of life

By Tanya Connor

WORCESTER -The ""snapshot"" showed mummies. But the Halloween party that was centered around children with ""life-limiting illnesses"" wasn't about death.
Sunday afternoon found dozens of children, teenagers and adults in the cafeteria of Holy Name Central Catholic Junior/Senior High School. At the moment, some were wrapping others in toilet paper for a ""best mummy"" contest.
""When you look at this snapshot right now, you don't see dying,"" mused Linda Del Vecchio-Gilbert. ""When you look up and see them creating mummies, that's not dying. It's living.
""This is what we want to do for the child and their family - give the memories to them. This mother and father can look back and remember this snapshot.""
Mrs. Del Vecchio-Gilbert is a pediatric nurse practitioner consultant for Notre Dame Pedi Pals Program, a provider for the Massachusetts Department of Public Health Pediatric Palliative Care Network.
Program coordinator Tracy Benvenuti said the in-home program serves children with a ""life-limiting illness"" otherwise known as a terminal diagnosis. They are not expected to live into adulthood. The program, affiliated with Notre Dame Healthcare's hospice program on Plantation Street, also provides support for the families.
""I've done this for about 20 years and I've never worked at a place like Notre Dame,"" Mrs. Del Vecchio-Gilbert said of her specialty in end-of-life care. ""If I could call it heaven, or utopia - that's the closest I've ever been to it,"" being with the team, children and families. There's not another program like it in the country. We meet all the needs, not just the medical needs but the psycho-social and spiritual.
""We take that piece (the spiritual) with us and incorporate it into their care. I may go out as a nurse practitioner and it may not be the pain of cancer (needing attention). It may be the pain of 'I'm losing my child' and question, 'Where is God in this?' I have to be there for that family. You can be Jewish, Christian, Muslim. It comes down to being human for another human.""
Sunday's Halloween party was one of Pedi Pals' efforts to be there for the sick children and their families. Staff members played with the children, many of whom were healthy siblings, as did Holy Name High School students.
The high school was drawn into the picture by Kimberly Gannon Payva, Holy Name Class of 2000, who is Pedi Pals' assistant program coordinator and child life specialist.
""We kind of outgrew our space where we were having parties"" in Notre Dame Bridge Education Center, she said. She said Pedi Pals took over a UMass Hospice program in 2012 and formed a different program for the 12 children in it. Now Pedi Pals has 75 families, and 15 children on the waiting list.
""I was thinking a school would be nice because it would be handicapped accessible and, hopefully, low cost,"" Mrs. Payva said of a place for Pedi Pals' first Halloween party. ""I decided to reach out to my alma mater - to Susan Hughes,"" alumni coordinator. She said Mrs. Hughes and Robert Heald, campus minister and religion teacher, offered to put on the party at Holy Name, with present students' help.
""I was overjoyed, because it's a very big undertaking and we truly appreciate the offer,"" Mrs. Payva said. ""Our donations have been dwindling."" She said Pedi Pals is state funded but needs donations for special events like this.
Holy Name donated the space, she said. Mrs. Hughes said Pedi Pals gave Holy Name $150 for supplies, students raised $132 for the party through a bake sale, alumni contributed $200 and St. Matthew Parish in Southborough, where Holy Name chaplain Father James B. Flynn is pastor, still planned to donate.
""Holy Name is about relationships and giving back to the community,"" Mrs. Hughes said. The school is planning to host a Christmas party for Pedi Pals and have an ongoing ministry to the program, she said.
""It's beautiful that they adopted us,"" said Mrs. Del Vecchio-Gilbert.
""I'm glad I did it,"" Holy Name junior Anthony Vincequere said of helping with the Halloween party.
What about it made him glad?
""Seeing a smile on the kids' faces.""
He said this was his first time doing something with Pedi Pals, and maintained, ""I'm definitely going to keep involved with things like this.""
His classmates Mackenzie Clendenin and Heather Acero expressed pleasure at seeing the children happy and involved at the party. Mackenzie said they were already planning to help this summer at Camp Sunshine in Maine with children with life-threatening diseases.
""It made us want to do it more, after today,"" she said.
""I myself have an illness, so I love seeing them be able to let it go and let loose,"" Holy Name junior Emily Chandley said. ""It's not easy to forget about it. They're so happy and free, and it reminds me that I need to do the same. It was kind of a wake-up call.""
Among party attendees was a Holy Name classmate of Mrs. Payva's.
""I took care of Kim's father when he was dying, because I'm a nurse,"" said Leah Gauthier. Now Mrs. Payva works with her son, Elijah, 3, who is in Pedi Pals. The Gauthiers said they go to St. Joseph Parish in Charlton, and St. Mary Parish in Uxbridge, where another of Mrs. Gauthier's Holy Name classmates -Father Nicholas Desimone - is pastor.
She praised Pedi Pals and said ""it brings normalcy and helps us feel like a community.""
""We try to have events throughout the year to get our children and our families together,"" said Mrs. Benvenuti. ""A lot of our families are very isolated through the disease process. So being able to get them together with others with chronically ill children is comforting and allows them to have a good time. Most of these children have spent three or four days at the hospital this last week alone.""
""Isabelle just got out of the hospital,"" Katie Goulet of Rutland said of her 2-year-old, who is in Pedi Pals. ""We were just hoping for a little normalcy and fun, to do something together as a family."" They attended the party, where ""everybody is in a similar situation; everybody understands.""
Pedi Pals has been a lifesaver, she said.
""When Isabelle was in the hospital, her music therapist sent her a video of her playing her favorite song,"" she said. ""Isabelle watched that for her entire stay. She was showing the nurses.""
Susan Lacewell, of Hadwen Park Congregational Church, stopped dancing with her 11-year-old, Joshua, who is in Pedi Pals, long enough to express appreciation for Pedi Pals' volunteers who play with the sick children's siblings, ""because these children who have these needs get all the attention."" She also appreciated the parental support.

For more information see www.notredamehealthcare.org and click on Pediatric Palliative Care or call Tracy Benvenuti at 508-852-5505.


For more information see www.notredamehealthcare.org and click on Pediatric Palliative Care or call Tracy Benvenuti at 508-852-5505.