BRAIN CANCER

Laurence Carolin, 15, donated his brain to cancer research.

The Ultimate Gift

How a patient's brain touched his doctor's heart

issue 2 | Fall 2012

by Shawn Hervey-Jumper, MD

He was shy and soft-spoken. We talked mostly about his recently altered mood, high school life and music. Accompanied by his mother, he was brought to the pediatric emergency room because of the daily headaches, suicidal thoughts and severe depression he had experienced over the past several weeks.

One look at his head CT scan and I feared the worst — he had a large mass in his thalamus. Knowing that our conversation would forever change the course of his life, I began to explain his symptoms as they related to his brain imaging. His questions were so very mature, far beyond his years, and he seemed relieved to know that what he was feeling emotionally had a clear and definable cause.

With time, we discovered he had a highly malignant brain tumor — glioblastoma multiforme — centered in one of the most eloquent areas of his brain. Knowing the nature of this aggressive disease, we were certain this brain cancer would eventually take his life.

Over time, I came to know the young man quite well. No matter how he was feeling, the time of day or night, or present circumstance, his smile could light up the room. He was a master chef and would often come to clinic appointments with home-cooked treats for the staff. With a wonderful mixture of simple childlike innocence, intelligence and a great sense of humor, he navigated his way in and out of the hospital, through several surgeries, chemotherapy and radiation. But despite our best efforts, his cancer progressed.

Eventually, he became paralyzed on the right side of his body. He began sleeping more and his thoughts started to slow. Then one day he came into clinic with a very special note. It was a document signed by both he and his mother. With the same quiet resolve that he displayed during our first encounter and throughout treatment, he described for us his understanding that cancer would soon take his life. He was sad thinking about his mother and how lonely she would be after his passing. He expressed his main disappointment was that he would not have a "useful life." Having recently donated his Make-a-Wish funds to feed malnourished children in other countries, he still feared that his short life would be a waste. "What else do I have to give to society but myself?" he said.

He wanted to donate his brain for research. He wanted to give us his tumor after his death, so that we could try to better understand his disease, hopefully offering improved treatments in the future. He wanted to be useful in a way that made sense to him.

Eventually, the day did come. With teary eyes and a heavy heart, I collected supplies; sterile specimen cups, culture media, ice, forceps. As I walked to meet him in the morgue, my initial thoughts wandered to days past. I felt an overwhelming sense of guilt and failure. What could we have done differently? Would more chemotherapy have been helpful? How about more radiation? Were there any additional experimental protocols we could have offered him?

Upon seeing his body, I was moved so deeply that I could not help but cry. However, even after death, his face was still able to make me smile. We would carry out his last wish. With care, we extracted his brain and harvested the tumor. Throughout the procedure, in my mind I could not help but rehearse his course of treatment. To this day, the image of the young man, lifeless in the morgue, is my personal symbol of helplessness. The runaway train that was his cancer traveled at a pace we could not halt. But through his fight with disease, he had touched and will touch many other lives.

As a neurosurgeon-in-training, I try to take good care of my patients through the most challenging time of their lives with care and compassion. However, I will be forever struck by the concern of someone so young for his fellow man. His gift — his willingness to offer himself, even in defeat, with the hope of improving someone else's life — pierces to the very core of what makes us all human.

Like him, I too just want to be useful in some small way. In the meantime, to my patient, my friend: We are sincerely thankful for the gift of your tumor, and will start working right away.