About eleven years ago, I was with my middle daughter, JoAnna Baber on our overnight shift at Rady Children’s Hospital in San Diego, CA watching over my 18 month old grandson and her nephew, Conor after he had lifesaving surgery to remove a neuroblastoma tumor wrapped around his aorta. We were providing some relief for Beth Anne Baber and Nick, parents of Conor. Our job was to make sure he did not pull out any of the wires and tubes that were connected all over his body. In the PICU at 3 AM it’s pretty quiet, mostly beeps from the equipment. I will never forget the night I heard a horrible sound from across and down the hall of uncontrolable crying and sobbing coming from the parents of a child who had just died of cancer. That single incident is embedded in my memory and has driven me to try to find ways to help kids with cancer. My unforgettable experience that night made me very receptive to one woman’s life long mission today. Suzanne Gwynn is a most favorite person of Conor’s mom and me. She is a powerhouse who has been a critical care and oncology RN nurse to children for about 30 years. People do not want to listen to her because she speaks of the very sad and unspeakable… children dying. Not only dying, but most kids are having to die in strange places, like hospitals. As Suzanne says, children dying is unimaginable,  childhood cancer is not your world…until it is, and then when it is, it’s absolutely devastating to you, your child and your entire family. Suzanne is trying to build a palliative care/hospice home for children. It’s not just a good idea, it’s really our responsibility as adults to ensure that our children are well taken care of, even when at death’s door. The typical hospice does not know how to help children die because they are not supposed to. In Suzanne’s Ladybug House​ palliative care /hospice it will never be just about dying, but it will be about living all the way to the last breath.

A former patient of Suzanne’s, Bill Harper who had leukemia 7 years ago and was close to death, came back to interview her and find out more about her project of love for critically ill children. Here is Bill’s interview with Suzanne. It’s 30 minutes long! If you have ever loved a child, you need to put your big boy or big girl pants on and listen to it. It is our responsibility to know about what children have to go through to live to the last breath so that we can change and improve what we are doing. It won’t go away if every one ignores it. Listen here:  https://soundcloud.com/bill-harper-583059533/its-not-about-dying-its-about-living

Author: Joe Baber