Ellen’s mom—Joan Rudnicki
On December 3, 1991, my nine-year old daughter Ellen was diagnosed with a brainstem glioma—an inoperable, 100% fatal-within-one-year tumor.
Knowing that there is always a first patient to survive any disease, our family was sure that Ellen would be that first survivor—after all she was a one in a billion most wonderful child. We tried a six-week course of radiation and chemo; in hindsight, all that happened was a lot of discomfort and a slow degeneration of her body. In mid-March our doctor told us that there was nothing left in the medical world to try and encouraged us to use Hospice of the North Shore (now Midwest CareCenter).
At the time, John and I were the parents of three small children—Ellen’s siblings were Jean (6) and Stephen (2). We had no relatives living close by. It was unusual for families in our circumstances to call hospice. Although we still did not believe that Ellen would die, we did decide to take our doctor’s advice. Perhaps it was our dire need for help or because we felt so alone living in the world of fatal illness. We soon had a compassionate, effective team carrying us through this nightmare.
Climbing stairs had become difficult for Ellen, so a bed and commode were set up in the living room. This meant that Ellen could remain an integral presence within our family. Ellen’s bodily and spiritual comforts were addressed by pain medications, weekly massages accompanied by specially chosen music, and volunteers who combed and braided her hair while chatting. Other volunteers took Ellen’s siblings to parks and other outings, allowing John and me to spend time with Ellen and to organize “parties” for Ellen and her friends.
Most importantly, the hospice staff were the only ones I could talk to about the possibility that my beautiful child might die. Although the words were never said, somehow I got the feeling that even if she did die, she would still be. In mid-July, Ellen succumbed to the tumor in the middle of the night with John and me by her side while her siblings slept. Her favorite hospice nurse was on call and came to our house. It was the hospice nurse that gave us the words to say goodbye to Ellen so that Ellen could leave us.
Hospice made our worst nightmare better. On the day that my youngest son entered kindergarten, I called and became a volunteer. Two years later I became an employee.
