Shai at 4 mos

Shai at 8 mos

Chemotherapy

Finding happy moments

Radiation treatments

Shai meets Hillary Clinton

Recovery

Shai's best friend

Make-A-Wish trip to Disney World

Shai at preschool

The miracle on 34th street

Shai, in hospice care, gets a kitten

Shai's headstone & younger sisters

Echoes

Echoes

I was born in 1958 and grew up in Brooklyn NY. My grandparents were refugees from WWI and my parents grew up in the Great Depression. My father fought in WWII, and on his return founded a successful electronics business. Mother was a homemaker. Sometime in childhood, I decided that I did not want to be a homemaker, that I wanted to boldy go where no woman had gone before. Even as a child, I had a reputation as a smarty pants, and skipped two grades in school. My parents encouraged me to believe that I could do anything to which I set my mind. In high school, I decided to become an astronomer. I got my BS in physics from Brooklyn College, summa cum laude, and then earned a PhD from Princeton, which I attended on an NSF Scholarship.

During my twenties and early thirties, I was mainly focused on my career in research. I worked with astronomy data from various telescopes and satellites, traveled to various parts of the world, and won a prestigious Long-Term Space Astrophysics research grant from NASA. In 1992, after the death of my father, I chose to become a single mother and named my daughter Shai in memory of my father.

Shai was born with a cancerous tumor in her pelvis (called rhabdomyosarcoma), but it did not become noticable until she was eight months old, and was not correctly diagnosed until she was eleven months old. By then it had metastasized to her lungs. So began a year and a half of cancer treatment, spanning three different hospitals. Shai took rounds of chemotherapy every three weeks, followed by numerous infections and blood transfusions. Shai's residual tumor was removed, along with three internal organs, during a twelve hour surgery. Then she underwent several weeks of radiation treatments, including brachytherapy (radioactive implants).

Throughout this ordeal, Shai remained full of spunk. Children with cancer have a resilience that is awe-inspiring. Children are blessed with the ability to live in the moment, regardless of what pain they experienced yesterday or may undergo tomorrow. We adults spend the rest of our lives trying to recapture the ability to live with stress that we had as children. I also found that families with sick children are all going through the same feelings, regardless of what walk of life they came from outside the hospital.

Here is an anecdote that captures Shai's personality: One day I left her with a teenage guest while I took our clothes down the hall to the hospital laundry. (I always carried a suitcase in the trunk of my car, in case Shai got hospitalized. Sometimes we lived out of that suitcase for weeks.) While I was gone, a medical resident came in and tried to examine Shai. She firmly told him that no one could examine her without her Mommy. He proceded to try to charm her with a cute flashlight shaped like a fish. They played with this for a while and she talked him into giving it to her. Then she politely told him it was time for him to leave. By the time I came back, Shai's guest was in stitches over the way she had manipulated the resident. In addition to being very controlling, Shai had a ferocious temper and a high tolerance for pain. To look at her, you wouldn't guess her inner strength.

During Shai's treatments, our family was supported by many forms of charity. For example, during 1994, I spent a total of five months out of the year in hospitals with Shai. I was able to stay employed and covered by health insurance thanks to leave donations from my coworkers at Universities Space Research Association (USRA). Also, my coworkers at NASA's Goddard Space Flight Center coordinated a continuous stream of blood donations, so that all of Shai's transfusions came from directed donors.

After completing chemotherapy for the tumor, Shai was in complete remission and her story seemed to have a happy ending. She started preschool with other children her age, and I tried to catch up with the research in my current grant proposal. I met a single dad and we became engaged; we were legally married on Halloween of 1996. Six days later, Shai was diagnosed with "secondary" leukemia, a form of leukemia that is triggered by prior cancer treatment.

Now Shai required a bone marrow transplant. Shai's father and I have different ethnic backgrounds, and as chance would have it, Shai inherited a very unusual tissue type (HLA type). It took months of international searching to find a matching bone marrow donor. During most of that time, Shai and I lived in an isolation room of a pediatric hospital. Shortly before her transplant, we were able to go home and have a religious wedding. The wedding had been coordinated from the isolation room, and many of the goods and services were donated by family and friends.

Shai's bone marrow transplant was very high risk, because her body had already been taxed by so much chemotherapy and radiation. About ten days after the transplant, she went into liver failure (VOD: something she had survived twice before). The oncology team called the family into one of those little conference rooms where they tell you that your child is going to die. One possible solution was to give Shai large doses of blood thinner, to break up the clots in her liver. She might bleed to death, but otherwise she would surely die of liver failure. We decided to try the blood thinner, and over the following days Shai received more "TPA" than any other child on record. She started to recover. But then she developed heart failure (cardio-myopathy).

Shai was moved to the ICU. She was so unstable that the family was warned she would die within the hour. But she didn't. She wasn't expected to make it through the night, but she did. The family was advised that multiple organ failure post-transplant is 100% fatal, and we might as well turn off life support. After a long debate, it was decided to keep supporting Shai so long as she seemed to want to keep fighting. Shai gradually recovered. She left the ICU, and then she left the hospital to live in a Ronald McDonald House. The doctors and nurses nick-named her "The Miracle on 34th Street", because Children's Hospital of Philadelphia (CHOP) is located on 34th Street. The oncologist who wanted to turn off life support had an epiphany, and admitted: "Never again will I say that I know what is going to happen".

Once again, Shai's story seemed to have a happy ending. Instead, her leukemia relapsed, and she went home to die in hospice care, surrounded by her family and pets. Why was she granted a miracle in the ICU, if it wasn't going to last?

So began the second phase of my life. I became pregnant again right away, had a second daughter at the age of 40, and a third at the age of 42. I prefer not to release the names of my husband or living children to the public. I gave up my career in astronomy research because, on the one hand it had been completely derailed by the time I had spent in hospitals, and on the other hand I wanted to focus more on my family. I took a support job with a NASA contractor, doing programming for a group that works on climate models.

During my second pregnancy, I decided to bank the cord blood, because I knew it could be used for transplants and had experienced first-hand how hard it can be to find a matching donor. I didn't expect to have another child with cancer, but I wanted to give my children every possible form of health insurance. The effort of researching the private cord blood banks which were available at that time led to the formation of the Parents Guide web site. And the rest is history. This web site, www.ParentsGuideCordBlood.com, has become more famous and more time consuming than I ever imagined in my wildest dreams.

In summary, my personal history influences this website in many ways. There are lots of parents who are excited about cord blood and want to "spread the word" about banking it. (Beware that some of those parents are looking to collect a referral bonus from their cord blood bank.) My background is unique, because I have the scientific expertise to comprehend the research, and the medical familiarity (which includes training in IV nursing) with oncology applications. At some intangible level, it helps to have walked through the valley of the shadow of death and come back. I am not easily intimidated or manipulated by corporate bigshots. It helps that I had a suceessful career before I gave it up, and this website is not an attempt to win glory for myself. I do constantly feel compelled to do charitable work, to "give back" to the community that supported us during Shai's lifetime.