Susan L. Weiner, mother of a child who was diagnosed with a life threatening brain tumor, speaks to her friend, Dr. Kanti Rai, about the challenges of caring for a child who lived years beyond his initial prognosis.
RAI: We will start, Susan, with the first question about your son, Adam Weiner, whom we lost twenty seven years ago when he was 13 to the ravages of a brain tumor. What happened when Adam was diagnosed?
WEINER: Adam was a healthy infant, but suddenly at nine months of age, he had a grand mal seizure. We rushed him to NYU Medical Center and a CAT scan diagnosed a massive tumor in his brain. My reaction was, of course as a mother of essentially a brand new baby, that it was the end of the earth. It was completely devastating since the diagnosis was so dire. He was not expected to live to reach his first birthday.
RAI: What was your response once you took Adam home?
WEINER: Well my response really came from Adam, who I took home and who got better. He began to behave like a normal one year old. He crawled and then walked and started to talk. He bounced back from what seemed to be such a catastrophic prognosis. He didn't die. He didn't stop growing or developing, and the question was, of course, how to deal with a baby who was expected to die but didn't, and what kind of parent I needed to be.
RAI: What were the challenges you faced as Adam continued to grow from a 9 month old baby to a 2 year old, 4 year old, 6 year old, and on?
WEINER: When he was two and a half, we brought him back to see his pediatric neurosurgeon. The doctors said they were shocked at the well-being of this child, who was not dying, but growing and developing according to normal developmental milestones. However, Adam developed hydrocephalus and needed a shunt, and sometime later he hemorrhaged, which left him in a coma. The impact on the family was terrible. We were losing this child again and had to figure out, again, what it was like to raise a child who was now disabled. This was a new set of behaviors, new aphasia for a child who is developing language and new motor problems. The challenges that we had to face were: how do you educate such a child? How do you plan? What do you do? Do you buy a winter coat in the autumn? Do you vaccinate such a child who isn't expected to live beyond the short term?
During those years and after, Kanti, you really were the translator of the maze between life, death, and treatment. You helped to guide us as time went on to make evidence-based decisions as best we could to try to raise this boy who refused to die and give him as normal a life as possible.
RAI: Adam really surprised us all as he continued to thrive and grow. However, we all started to recognize that you, as the mother, had taken over the entire role as his nurse, his interpreter between doctors, and his friend. That love contributed greatly to the success of his health. As Adam continued to grow, how did he behave?
WEINER: A pioneering pediatric neurosurgeon at Toronto Hospital for Sick Children, pointed out that the tumor was extra-axial and that Adam’s frontal lobes were simply pressed back and that was likely to account for the high level of his functioning. That was an insight for me and prompted me to encourage Adam's development - his cognitive development, his intellectual development, and his development to be what he wanted, which was to be a normal kid.
That was when Adam’s primary neurosurgeon said quite frankly, “You need to maximize the quality of his life.” So we set out to educate a child who wouldn't die. And marshal the necessary specialists: occupational therapy, speech therapy, physical therapy.
We taught Adam to read and write on an Apple 2e computer with a brilliant speech pathologist, using adaptive technology. He was able to write stories and to tell us something about what his life was like from his own perspective. He also talked privately with me on several occasions, asking questions out of the blue. When he was 7 years old he said, “How come they sawed my brains out?” When he was 13, 6 months before he died, he said, “Why do I have a boggled mind?” Those were questions we had to answer for this child who refused to die and who wanted to live.
The pathologists and physicians who cared for Adam referred to him and his case as the “Saga of Adam Weiner,” but Adam refused to see himself as a sick child. He just wanted to be a normal boy.
RAI: What did Adam think was happening to him? How did he communicate that with you?
WEINER: He talked to me quietly before he went to bed, and he talked to his speech pathologist, and he was able to talk through his stories. Let me give you an example of one of his stories about how he conceived of his life.
“My Future,” he wrote, “Future means life and business. Life is tough and rough. I will have to get a job. I could be a lawyer. I would live in an apartment.”
Now this is from a brain injured child. There are other stories about Luke Skywalker and Han Solo, about his teenage sister and his sister's boyfriend and about how jealous he was. There were stories about how he felt both emotionally and physically.
There's one story where he says, “Today I feel fine. On Tuesday I felt like a new boy. I cannot seem to remember why. I've been feeling comfortable. My mind has been a lot clearer.”
There was that ability to self-reflect but then to carry on and say, “Listen, I've got a life to lead.”
RAI: How about his friends?
WEINER: Many kids with brain tumors, kids who are neurologically impaired, are socially isolated. And because their perceptions and sense of interaction are irregular, they don't have a lot of friends. They can't manage the social interactions. Adam actually had two friends. One of whom was much more disabled than he, and over whom he lorded, and really behaved like the commander. Then he had another friend who was his friend from nursery school on, until he died. A boy named Stuart. Stuart had a learning disability different from Adam's. I took them to the park one time, and they pretended to play baseball together and had a great time. Adam, six months before he died, wrote a story about Stuart:
“This past weekend my friend Stuart came over to visit. We bounced around. We goofed about. We both went to see Teenage Mutant Ninja Turtles. It was grand.”
So that was when he was 13, written as the tumor began to grow. To become malignant. That was probably in April and he died the following September.
RAI: What was the most difficult part for you?
WEINER: As a mother, it was an experience of perpetual loss. In the face of his laughter and joy of being alive, it was difficult living in the daily face of his death, but also needing to renew, to adapt, with each new trauma and each new deficit. I had to find strength in his resilience. In his determination to be alive.
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