Eight months old

Shelly's Life and Family

Shelly's Life and Family

Shelly's Favorites
Cloths and Jewelry
Cooking and Baking
Mom,dad, Maia
Science Experiments
Stuffed Animals
Writing and Reading
Memories of Shelly
Virtual Art Galley
The Funeral
Dear Friends
Shelly's Place

Synopsis of a life cut short
7/7/91 - 12/6/98

Shelly was our first child. She was born on July 7, 1991 at Providence hospital in Southfield Michigan. We had moved to Ann Arbor just a couple of weeks earlier. Shelly was a healthy, beautiful and happy baby. At age four months she went on her first trip to Israel. Her grandparents threw a big party in her honor, as their first grandchild. Shelly went back to Israel four additional times, each time for an extended visit. She went to summer camps in Israel, and was fluent in Hebrew.

Shelly on the beach in Israel with Nami, at age 2

A great milestone in Shelly's life was the birth of her little sister, when she was 3 years old. Shelly was delighted to be a big sister, and took that role very seriously.

Shelly enjoyed wearing the same outfits as her sister

In Ann Arbor Shelly went to the Jewish Community Center preschool and at age 5 started Hebrew Day School. In the middle of first grade Shelly was blossoming. She was doing great at school, and was happy to start ballet, music and private art lessons. During the month of January 1998 she complained a few times of seeing double. We took her to the pediatrician on Friday, February 6th, 1998. He sent her to an ophthalmologist and the ophthalmologist to University of Michigan Emergency Room. The CT done that night was read as negative, however, we were instructed to come back for an MRI as soon as possible. On Wednesday, 2-11-98 the MRI was done and Shelly was diagnosed with a brainstem glioma.

There is no effective treatment for this particular tumor, even in this day and age. The treatment and prognosis have not changed since the 1960's, when they started treating with radiation. This threrapy, however, is not a cure, it can only extend the lives of patients for 4-6 months at the most.

Howard and I did extensive research in conventional and unconventional medicine, trying to find new therapies with limited toxicity, that may have an effect on the tumor. Shelly went through five treatment modalities: radiation, chemotherapy (combination of Etoposide and Topotecan), differentiating agents: (combination of Phenylbutyrate, Lovastatin and Accutane), another chemo (Temozolomide) and immunotherapy (MTH-68). With the exception of MTH-68, non of these treatments touched her tumor. With the MTH-68 she seemed to have a stabilization and some improvement for a short time. She lost her hair from the chemo, and suffered some nasty side-effects of the steroids. If you are a parent of a child with a brain tumor, and you would like more information on Shelly's treatments, please e-mail me privately.

Shelly was very brave throughout the entire disease process. She did not want to focus on it, she did not want people to give her special attention because of it. She did not let the disease define who she was, even when she was very sick. This is the reason why her clinical history, cancer or brain tumors are not the focus of this web-site.

The World Wide Web is a powerful source of medical and support information. I compiled an annotated list of links to the sites I found most helpful in our journey. A separeate list has links to homepages and contact information of children who died from this disease.

Shelly's favorites
Shelly's place.

created by Ruti Volk
last updated 2-3-99