Wednesday, August 11, 2010 at 3:52PM
The first time I heard of palliative care was when Joe and I met with Dr. Kathy Hull of the George Mark Children’s House. At the time we met Dr. Hull, GMCH was in the planning stages and Joe and I wanted to help through The Markie Foundation. In her vision of the GMCH, Dr. Hull described to us the palliative care services that GMCH would put into place. As she described them, I realized that we had been blessed with many of the same services with our son Mark. It was not in a neat package but it was there and it would have continued if Mark would have lived. Kaiser, our insurance carrier, provided a comprehensive approach to caring for our infant son. We met with physicians from many different disciplines, some out of the Kaiser system. We had nurses, including a pediatric hospice nurse, who instructed us on the care of our special needs son. We were assigned a social worker and later a hospice social worker. We had meetings with a nutritionist as well as physical and occupational therapists. Our family and friends also provided support. This support included visits from our pastor to meals to dog sitting to endless hours of sitting in the hospital helping us pass the endless hours of time. This type of care helped us through a very difficult time. We did not feel alone or on our own. It also boosted our confidence that we could care for Markie and that we would survive his illness and death as well as life after Mark was gone.