We stood there in the hematology ward, my husband Jeff and I, reeling from the news. "Your daughter has aplastic anemia," the doctor had told us. The diagnosis hadn't meant much to us - until we heard what aplastic anemia was.
"In layman's terms, Shir's bone marrow doesn't work, so she cannot produce healthy blood cells," the doctor explained. "The disease is progressive, meaning that her condition will continue to deteriorate," he added. Then he said softly, "Aplastic anemia is fatal, unless a suitable bone marrow donor is found."
We had taken 6-year-old Shir for a blood test after we noticed that she was always tired and cold. Perhaps she has mono, we thought. We certainly hadn't expected this.
Jeff and I stood there silently, digesting the news, for a long time after the doctor left. The whole world seemed to have turned black.
At one point, an Ezer Mizion volunteer handed me a cup of coffee and a piece of cake. She didn't say anything or ask any questions. That moment stands out in my memory as the only bright spot in the worst day of my life.
The doctors told us that as long as Shir's condition was relatively stable, she could survive without a bone marrow transplant. We knew, however, that she would not live to be Bat Mitzvah unless a suitable donor was found. With deep reservations, we gave the hospital the go-ahead to search international bone marrow donor registries for a compatible donor for Shir.
Shir, we learned, had a rare tissue type, and chances of finding a matching donor were slim. Then, one day, the fateful phone call came. "There's a match!" the hospital's transplant coordinator shouted.
Elation. Shir could live. Then worry. What if the transplant was unsuccessful? What if the donor backed out? Who was this person, anyway, this person who held the key to Shir's future?
We found out that the potential donor was a middle-aged man. That was all we were allowed to know, at that point.
Since Shir's condition had stabilized, the doctors were reluctant to perform the transplant immediately. Every night, I had nightmares that the donor would just disappear. Or change his mind and refuse to donate. Or die in a car accident. Or get sick and be disqualified as a donor. The nightmares went on for three years. Every few months, the donor - or the angel, as I thought of him - would send us a message via the registry that he was still around and waiting for the moment when he could donate the cells that would save our daughter's life.
By the time Shir was nine, the disease had progressed to a point where there was almost nothing to lose by doing the transplant. We signed the consent forms to start the transplantation process. The nightmares intensified. Would Shir's body accept the transplant? Would she develop graft-versus-host disease and suffer all her life from autoimmune disease? Would the donor back out at the last minute? Would Shir be traumatized by being closed off in an isolation ward for six weeks? Would the medications make her hair fall out? Would she live?
Ezer Mizion was incredible. For six weeks before the transplant, Shir needed transfusions of donated platelets every single day. Ezer Mizion arranged for suitable donors to come to the hospital every day to donate platelets. During the time that Shir was hospitalized, I must have eaten hundreds of Ezer Mizion's neatly packaged hot meals. The warmth, the caring of Ezer Mizion's volunteers making the rounds of the hospital meant so much to me. They never pried, they just offered encouragement and asked how Ezer Mizion could help us in any further way. Pray that the transplant works, I would tell them.
The day of the transplant arrived. It was almost ethereal. Shir was hooked up to an IV, and the cells that would give her a new chance at life were transfused into her bloodstream. I felt as though I was watching a miracle. A risky miracle, but a miracle nonetheless. In any case, it was Shir's only hope.
For twelve torturous days, we waited to see if the transplant would take. Then, on day 12, blood test results showed that Shir's white blood cell count had risen. The doctors told us that the transplant had succeeded. The entire staff of the hematology ward gathered around Shir's bed and applauded. I wept.
Day by day, Shir's blood counts improved. She was released from the hospital, a new person.
Today, Shir is a normal 10-year-old girl. When I see her jumping rope or running outside with her friends, I am overwhelmed with joy and gratitude. I am eternally grateful to G-d, to Shir's angel, to Ezer Mizion, and to all the wonderful doctors and nurses who helped Shir recover.
To me, the entire experience was one of rebirth - not just for Shir, but for myself as well. I have learned to recognize and appreciate all the many small joys of life, and to be ever cognizant of the greatest gift of all: life itself. |