Karen Hatch sounds out of breath when she answers her cell phone at home in Sykeston, N.D. Birds chirp in the background, the wind rustles.
"I'm out weeding the garden, taking in the day – doing exactly what Monica would do," says Karen, a catch in her voice. "Monica had a motto: 'Take each day as it comes and live it to the fullest – cause God never promised anyone tomorrow.'"
Monica was just 14 when she passed away on August 18, 2007. In her four-year battle with a rare cancer, she won the hearts of many with her spirit of openness and depth of wisdom. She was named North Dakota's
2007 Children's Miracle Network Champion.
Karen knows the reason for the phone call. "I won't deny those last days at MeritCare were extremely sad, but there were so many good moments, too," she says.
Good moments? "I know it sounds strange, but not if you knew Monica. She had special bonds with so many people."
Last visits
Though sick and weak, Monica sat up in her hospital bed, welcoming a steady stream of visitors – friends, relatives, nurses, doctors. Karen remembers it well.
"The highlight was when Matt and Bridget Cullen walked in with their baby. Monica had a smile that lit up the room. She even got to hold Brooks," recalls Karen. NHL hockey champion Matt and his wife, Bridget, had become friends with Monica through their work with Cullen Children's Foundation. "That visit made her world. That made our world."
"And when Dr. Storm stopped by – boy, did he and Monica laugh," says Karen. "They talked about the time she proved to him that it was time for her breathing tube to be removed. Let's just say she produced evidence."
Dr. Waldemar Storm, pediatric critical care specialist, was one of many on Monica's longstanding medical team.
"But probably the most touching visit was from Dr. K," says Karen, referring to
Dr. Nathan Kobrinsky, Monica's pediatric oncologist. "About an hour before she died, when her eyes were closed and she wasn't responding much anymore, Dr. K came in one last time. He kissed her forehead and said he loved her. She gave him that half-smile like she always gave him. I think that was her last memory – and it was a good one."
Karen's last wish for Monica was that she would pass on peacefully and without pain. "I got my wish," she says. "The staff at MeritCare did a phenomenal job."
What made it possible?
Several factors came together to make the wish a reality. Karen explains:
- Excellent pain management. "Monica was alert until the very end and she was not in pain. The staff knew exactly what was needed."
- A large hospital room. "With all the visitors and family, we were just lucky the staff could move us to a nearby double-occupancy room. We needed the space."
- Child life specialists and chaplains, including Sister Juli Caron. "Cody (Monica's younger brother) had many talks with Sister Juli and that really helped him. But I don't know if anybody was ready when Monica asked, 'What's it like in a casket?' Somehow Sister Juli she knew what to say."
- Nurses who educated and supported. "It helped so much to know ahead of time the different phases that would happen at the end of Monica's life. There were no surprises and we weren't afraid."
"She'd say it's awesome"
To ensure the best possible end-of-life care for all children and families,
MeritCare Foundation has established a fund to develop MeritCare Children's Hospital Palliative Care Service. The program will follow the path of MeritCare's well-established, much-appreciated
Adult Palliative Care Unit, with a unique model specific to children and families.
Contributions to the fund will support staff training, education materials and added comforts to ease the strain for patients and families. Children's Hospital Palliative Care Service will serve MeritCare Family Birth Center, too.
"Monica's excellent end-of-life care made it possible for her to have good moments to the end," says Karen.
And what would Monica think of the program? Karen doesn't hesitate: "She'd say it's awesome. It's what all children and families deserve."