April 19, 2002

As MassGeneral Hospital for Children recognizes Children and HealthCare Week, April 22 to May 5, clinicians not only celebrate the young patients who are successfully treated here, but also honor the families who have experienced the loss of a child.

Carole Trainor is the mother of a child who died at MassGeneral Hospital for Children in 2001. Below she shares the experience of her son's care at the MGH in her own words:

In many ways, the story I am about to tell does not fit what we have come to expect of a heroic tale. It does not end in triumph and glory. There is, however, my unending appreciation, admiration and respect for the medical team who cared for my 8-year-old son, Stephen (below), for the last year and a half of his life.

On Aug. 10, 1999, Stephen had a bone marrow transplant at a hospital in the Midwest. We returned to Boston four months later, admittedly somewhat jaded about the medical establishment. I had come to see doctors as distant professionals who were unable to get close to their patients. My opinion of nurses was not much better. But I was in for a transforming experience when I brought Stephen to the MGH under the care of Howard Weinstein, MD, chief of Pediatric Hematology/Oncology.

Almost immediately, I felt the burden of worry about my son's health being eased and shared by a group of brilliant and compassionate professionals. From that time on, Stephen and I would never be alone in his quest to live life as fully as possible with or without illness.

Stephen had a succession of life-threatening post-transplant complications, which required frequent hospitalizations and demanded intense medical problem solving. As Dr. Weinstein pointed out, Stephen didn't seem to want to follow any medical books — he was writing his own. During these difficult times, Dr. Weinstein, Patricia Kent, NP, Heidi Jupp, RN, and Stephen's team of nurses on Ellison 18 — Lisa Donelan, RN; Karen DaRocha, RN; Anita St. John, RN; and Susan Rooney, RN — never retreated. Instead, they worked tirelessly to try to bring about the medical results we were all longing to see. And if they felt discouraged, they never let it show. Rather than being lost in a swirl of confusing tests, procedures and medications, I always felt assured that every procedure was measured and carefully considered by Drs. Weinstein, David Ebb, Alison Friedmann, Eric Grabowski, Verena Gobel, Bernard Kinane and Elizabeth Dooling.

Instead of despair there was hope. And hope does not come easy when the odds are working against you. I had always hoped Stephen would become a man of honesty, integrity, faith, perseverance and love toward all. Although he was only 8 years old, he achieved those hopes and left the world a better place than he found it.

I am so grateful to Dr. Weinstein and the medical team who helped Stephen survive some very difficult complications. Living with Stephen in that special realm, where the uncertainties of life that surround us all become palpable, I learned to live authentically and trust in life. For the first time, I saw awe in all things I took for granted. Where there could have been fear, there was trust. Where there could have been chaos, there was peace. Where there could have been deep sadness, there were parties celebrating Stephen's discharge after spending two months in the hospital. Without the courageous intervention of Stephen's nurses and doctors, I would have missed out on some of that precious time with my child, and there is not one day that I could have spared.

As Stephen's time here neared to a close, I found this fine group of professionals to be truly heroic. Rather than protecting their feelings or their egos, everyone continued to stand by him until the end. With the support of all the physicians and nurses, social worker Ken Scheublin, LICSW; Annah Abrams, MD, of Psychiatry; and Patricia Byrne of the Chaplaincy, they helped me face some difficult questions and try to find the answers I needed.

Stephen's last night with us was a blessed event — just as much, if not more so, than the first blessed event when he entered my world. My courageous boy had lived his life to the fullest right up until the end. He was comfortable and not fearful, and I was able to cuddle him on my lap for six hours before having to let go. For being there in the end, when there would be no cheers of success, no pats on the back, I am so indebted to Dr. Weinstein. It is seldom mentioned that there is no greater compliment in the world that a mother can give than saying: "I trust my child's life with you" or 'in his final moments there is no one I would rather have present and caring for him than you."

So you see, I consider myself a bit of an authority on heroism. After all, I have lived in the company of angels and heroes for the past few years.