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Shai Miranda Verter
Dec. 9, 1992 - Sept. 2, 1997
Shai's story begins with me, her mother (Frances Verter). Before Shai, I had a successful career doing astronomy research at NASA. In 1992, after the death of my father, I was inspired 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 tried to charm her with a little 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 would never guess her inner strength.
During Shai's treatments, we were 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 the science contractor 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 finishing 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 latest funded proposal. I met a single dad and we became engaged; we were 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.
Shai now required a stem cell transplant. Cord blood transplants had not yet become common practice, so we searched for a matching bone marrow donor. 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.
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 (Shoshana Lior) at the age of 40, and a third (Gavrielle Avishai) at the age of 42. 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 computer programming for a group that ran climate models.
During my second pregnancy, I decided to privately bank the cord blood. I had experienced first-hand how hard it can be to find a matching transplant donor, and I knew the best match comes from a family member. 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 in the US in 1998 led to the formation of the Parent's Guide to Cord Blood web site. Eventually I added private banks around the world, and then public banks that accept donations. The rest is history. This web site has become more famous and more time consuming than I ever imagined in my wildest dreams. In 2007, I assembled a Board of Directors and we incorporated as a 501(c)(3) foundation.
It could be said that Shai's story is an extension of my own, that many of her experiences came from having a mother who was determined to find the best treatment protocol, and travel to where it was available. I was a "medical tourist" before the phrase was invented. But Shai's soul and life taught me many things I would never have learned on my own, and turned my life on a different path. Now it has become my mission to be a consumer advocate for parents who want to bank cord blood and access cord blood therapies. Sometimes helping parents requires standing up to pressures from special interests. At some intangible level, it is a strength of this foundation to be run by a mother who has walked through the valley of the shadow of death.