Parent's Notes

Be Vigilant

One of the striking things about Michael's brief illness is the suddenness with which it seems to emerge. Nothing could have prepared us for the ensuing nightmare when Michael was taken to his Pediatrician for an exam after noticing a recent tendency to look at things from the side rather than straight on. This simple turning of the head provided clues to underlying problems and within a few days our hopes and dreams had been shattered and our lives turned upside down. Michael had a rare form of brain tumor located in the worst possible location making surgery all but impossible.

Early Detection

While no one knows for sure, earlier detection may have produced different results. There were no outward signs or behavioral problems to indicate anything was wrong. Michael had the best of medical care as a child including regular check ups and immunizations that all children receive and the Doctors found nothing to be concerned about. There were absolutely no clues that anything was wrong until Michael's vision changed and he began to look sideways.

Watch the Little Things

Perhaps it is God's will that things like this happen as it so often does. But as parents we need to be aware of the little things that may shed light on a more sinister underlying cause. In one respect we were lucky to uncover Michael's illness and begin treatment as soon we did. Michael survived for several weeks beyond the original prognosis. Wonderful times we might not otherwise have been able to spend with him.

Remain Strong and Optimistic

Hope and the will to survive play an important role in all our lives. As human beings we do not give them up easily. Michael's brave fight against cancer testifies to his will to survive. Enduring repeated Chemo and Radiation therapy that made him sick and lose his hair, he kept up hope that his body would respond. And to a small degree it did. For a short time our hopes were renewed.

Get the Best Care Possible

The excellent care Michael received at Mass General Hospital gave us all hope and comfort during his illness. Michael looked forward to seeing the Doctors and staff on each visit. They would talk about sports among other things and always managed to make him feel as though everything would be all right. Their awareness of the impact on not only Michael but the entire family gave us all great comfort. Their attention to details like covering scary equipment with Red Sox blankets to make visits more comfortable, or having valets ready to take our car so that Michael could get right into treatment was always reassuring. They gave Michael his own private room on the 17th floor with an amazing view of Boston and did everything humanly possible to make him and us comfortable. And when it was over, they cried with us. The staff and Doctors did not disappear, instead they provided support for all of us. Counselors were there to help us through. And many of them attended both the wake and funeral. And while we had left MGH, it had not left us. We routinely receive calls from their wonderful staff just to see how we are doing. We were particularly touched by the call on Christmas Eve, and take great comfort in knowing how deeply the Doctors and staff at MGH care.