Racing and rock to help establish children’s hospice home

Apple Valley foundation aims to help build site in Brooklyn Center

Mary O’Keefe

When 3-year-old Mary O’Keefe, of Apple Valley, battled cancer in 2009, she spent a good part of her final year, including her final day, in the hospital.

While hospitals provide critical acute care and treatment for their youngest patients, they don’t provide a residential setting for end-of-life care.

Peter and Christine O’Keefe, Mary’s parents and founders of the Mary Moon Foundation, said they wish a children’s hospice home had been available to their family for their daughter’s final days, and they hope a July fundraiser will help them reach the goal of having such a home completed in the Twin Cities by the end of the year.

Though some hospitals offer larger rooms to accommodate a child who is dying and his or her family, they are typically near other hospital rooms where children are receiving treatment.

“I remember leaving Mary’s room on the Oncology Unit and seeing the other pediatric children in the hall, still alive, while Mary’s body was being transported to the hospital morgue,” said Christine, an endoscopy nurse who works in labor and delivery at Fairview Southdale Hospital in Edina. “A pediatric hospice program would have been beneficial to our family if it was available to us. I believe a team who specializes in end-of-life care would have helped give us the tools to handle the painful transition in the family dynamics with losing a child.”

While there are more than 4,700 hospice homes for adults across the country, there are only two dedicated respite and hospice homes for children.

“Pediatric end-of-life needs are unique and require different needs than adult hospice and respite care,” Christine said. “Mary still wanted to play, even on the day she passed away. Children have this innate need to learn and play even through sickness and failing health.”

Mary was diagnosed with neuroblastoma, a cancer that occurs mostly in infants and toddlers, at the age of 2 and died a year later.

Mary loved participating in arts and crafts and a variety of other activities while she spent a large portion of her final year in the hospital fighting cancer.

The Mary Moon Foundation’s mission is to help hospitalized children enjoy life, learn and grow as much as every child should.

“Children’s hospital providers in the Twin Cities all agree that there is a great need for a pediatric hospice and respite care home, and it is our goal to work collaboratively,” said Katie Lindenfelser, founder of Crescent Cove, a nonprofit that aims to open a children’s hospice home on Twin Lakes in Brooklyn Center by the fall.

Crescent Cove will provide palliative care (pain and symptom control) during respite stays in between treatments and at the end-of-life, after treatments have been completed.

In doing so, the site will collaborate with the child’s primary provider and other organizations in the community that serve children.

Through the foundation established in her honor, Mary’s legacy continues to touch the lives of countless hospitalized children and their families.

Earlier this year, the foundation hosted a family-centric fundraiser at Nickelodeon Universe, which has special meaning to Mary’s family. Mary visited Nickelodeon Universe just 12 days before she died.

In addition to the organization’s financial dedication to Crescent Cove, the Mary Moon Foundation has also raised $100,000 for Child-Family Life Services at University of Minnesota Masonic Children’s Hospital since its inception.

The July 22 charity event, which starts with NASCAR racing at 4 p.m., followed by a Hairball arena rock concert at 9 p.m., is designed for all ages.

Proceeds from the event’s ticket sales will be donated to Crescent Cove and Child-Family Life Services at University of Minnesota Masonic Children’s Hospital.

Tickets can be purchased at www.marymoonfoundation.org for $20 in advance. A VIP ticket option is available for $40.

The foundation will conduct a raffle drawing for a classic 1969 Ford F-250 pickup truck at the event at Elko Speedway. Raffle tickets cost $50 and are also available on the website.