Erin Buenger.
A letter from Erin's mother.
Erin Buenger, Our Light and Our Laughter
Erin is my favorite child to read to, the teacher of her three-year-old preschool class told me. All the children listen, but she always listens like she means it. I knew that feeling myself. Her face and body connected to each and every story, lighting up in anticipation of excitement, sagging when things got sad, and giggling or guffawing at the funny parts.
Erin grew. The books we read together got longer and more complex, and more often than not she read to herself. Her total involvement with the story, the characters, and the action, however, remained unchanged. And she lived the same way she listened, completely and delightfully attuned to the moment. Erin was an unapologetic enthusiast.
It surprised me that she maintained this outlook despite fifteen months of intense treatment for high-risk neuroblastoma that began shortly after she turned five. It shocked me that she would remain that way after she relapsed and even when her treatment options dwindled. In hindsight, I should never have worried whether Erin’s spirited attitude would survive intact. I should have wondered where it would lead us.
Neuroblastoma is not a cancer for the fainthearted. For roughly one-third of neuroblastoma patients (usually very young, early stage diagnoses), the prognosis is good and patients require mild or no treatment. The rest require heavy treatment for even a chance at survival. Many who survive experience permanent hearing loss and other impairment as a result of treatment, and many, like Erin, relapse. Few who relapse survive.
News of Erin’s diagnosis doubled us over like a gut punch, but we all got with the business of fighting cancer. Erin had to leave Vacation Bible School mid-week to begin treatment that included five months of high-dose chemo, a twelve-hour resection surgery, back-to-back stem cell transplants, radiation, six months of oral chemo, and eight experimental tumor vaccines. Almost immediately we had a bald daughter. The only sign of her shining red hair were the little wispies that framed her face like a halo. She considered getting a wig. . .for about three seconds. She thought she was beautiful as is. Erin spent 75 of the first 150 days after diagnosis in the hospital. Even out of the hospital, she was restricted to home whenever her blood counts fell to a point that she was at risk for infection. Looking back at the diary I kept, it’s amazing what she fit in to the time she had. She went to kindergarten, church, and Sunday school, continued her second year of dance lessons, sang in a weekly music program, and enjoyed life with gusto.
Walking the line between enjoying a full (as possible) life and putting your child at risk is a tough balancing act, but Erin never wanted to miss anything. In addition, others benefitted from seeing Erin out and about. Older cancer survivors seemed to take heart from watching Erin skip around the mall or attack the playground with vigor. Even when she became rail thin and preferred that her father carry her, people admired her courage and took note that she didn’t feel sorry for herself or bemoan her fate.
Remission, achieved after fifteen months of treatment, gave us time to enjoy the life that had been handed back to us. And though relapse took us all by surprise just two years later, we all continued to live with joy and verve. For a number of years, Erin’s cancer remained stable, and we could treat it as a chronic disease because her doctors felt there was no chance for eradicating it with available treatment regimens. They told us we could take this approach until her body wore out from constant toxic bombardment, until the tumor outsmarted the treatment plan and grew out of control, or until new treatment options became available. We always hoped for the third choice.
In the meantime, Erin didn’t waste a bit of time. Her active calendar included weekly horseback lessons, competitive soccer, and fastpitch softball. She sang in her church children’s choir, and made all A’s. She was especially proud to move up to Jane Long Middle School and into Bryan’s new INQUIRE Academy for the Gifted and Talented, where she served as the Treasurer of the student council. Cancer, always present, never defined Erin’s life. She worked diligently to increase federal funding of children's cancer research and became a zealous and successful Congressional lobbyist. Spending time on Capital Hill helped her decide on her future career: President of the United States. Until then, she continued to expand and pursue emerging interests in creative arts, cooking, and many other areas. Her last week of life she designed and created fused glass art pieces and directed the making of lanyards to raise money for the Children's Neuroblastoma Cancer Foundation.
What defined Erin most was her relationship to other people of all ages. Her smile and warmth made each of her many friends feel special, and her empathetic spirit, understanding, and insights were a balm to them in troubled times. Certainly Erin displayed typical human failings and foibles, and she especially did not suffer fools and foolishness gladly. Still she left behind an example of how to cope with adversity and a model of how to live each day to the fullest.
She lived 82 months with the disease, but she never let it slow her down. She lived to the end without fear.
For the full story of Erin’s life, visit Let’s Do It! (http://erinbuenger.blogspot.com).
Erin Buenger, Our Light and Our Laughter
Erin is my favorite child to read to, the teacher of her three-year-old preschool class told me. All the children listen, but she always listens like she means it. I knew that feeling myself. Her face and body connected to each and every story, lighting up in anticipation of excitement, sagging when things got sad, and giggling or guffawing at the funny parts.
Erin grew. The books we read together got longer and more complex, and more often than not she read to herself. Her total involvement with the story, the characters, and the action, however, remained unchanged. And she lived the same way she listened, completely and delightfully attuned to the moment. Erin was an unapologetic enthusiast.
It surprised me that she maintained this outlook despite fifteen months of intense treatment for high-risk neuroblastoma that began shortly after she turned five. It shocked me that she would remain that way after she relapsed and even when her treatment options dwindled. In hindsight, I should never have worried whether Erin’s spirited attitude would survive intact. I should have wondered where it would lead us.
Neuroblastoma is not a cancer for the fainthearted. For roughly one-third of neuroblastoma patients (usually very young, early stage diagnoses), the prognosis is good and patients require mild or no treatment. The rest require heavy treatment for even a chance at survival. Many who survive experience permanent hearing loss and other impairment as a result of treatment, and many, like Erin, relapse. Few who relapse survive.
News of Erin’s diagnosis doubled us over like a gut punch, but we all got with the business of fighting cancer. Erin had to leave Vacation Bible School mid-week to begin treatment that included five months of high-dose chemo, a twelve-hour resection surgery, back-to-back stem cell transplants, radiation, six months of oral chemo, and eight experimental tumor vaccines. Almost immediately we had a bald daughter. The only sign of her shining red hair were the little wispies that framed her face like a halo. She considered getting a wig. . .for about three seconds. She thought she was beautiful as is. Erin spent 75 of the first 150 days after diagnosis in the hospital. Even out of the hospital, she was restricted to home whenever her blood counts fell to a point that she was at risk for infection. Looking back at the diary I kept, it’s amazing what she fit in to the time she had. She went to kindergarten, church, and Sunday school, continued her second year of dance lessons, sang in a weekly music program, and enjoyed life with gusto.
Walking the line between enjoying a full (as possible) life and putting your child at risk is a tough balancing act, but Erin never wanted to miss anything. In addition, others benefitted from seeing Erin out and about. Older cancer survivors seemed to take heart from watching Erin skip around the mall or attack the playground with vigor. Even when she became rail thin and preferred that her father carry her, people admired her courage and took note that she didn’t feel sorry for herself or bemoan her fate.
Remission, achieved after fifteen months of treatment, gave us time to enjoy the life that had been handed back to us. And though relapse took us all by surprise just two years later, we all continued to live with joy and verve. For a number of years, Erin’s cancer remained stable, and we could treat it as a chronic disease because her doctors felt there was no chance for eradicating it with available treatment regimens. They told us we could take this approach until her body wore out from constant toxic bombardment, until the tumor outsmarted the treatment plan and grew out of control, or until new treatment options became available. We always hoped for the third choice.
In the meantime, Erin didn’t waste a bit of time. Her active calendar included weekly horseback lessons, competitive soccer, and fastpitch softball. She sang in her church children’s choir, and made all A’s. She was especially proud to move up to Jane Long Middle School and into Bryan’s new INQUIRE Academy for the Gifted and Talented, where she served as the Treasurer of the student council. Cancer, always present, never defined Erin’s life. She worked diligently to increase federal funding of children's cancer research and became a zealous and successful Congressional lobbyist. Spending time on Capital Hill helped her decide on her future career: President of the United States. Until then, she continued to expand and pursue emerging interests in creative arts, cooking, and many other areas. Her last week of life she designed and created fused glass art pieces and directed the making of lanyards to raise money for the Children's Neuroblastoma Cancer Foundation.
What defined Erin most was her relationship to other people of all ages. Her smile and warmth made each of her many friends feel special, and her empathetic spirit, understanding, and insights were a balm to them in troubled times. Certainly Erin displayed typical human failings and foibles, and she especially did not suffer fools and foolishness gladly. Still she left behind an example of how to cope with adversity and a model of how to live each day to the fullest.
She lived 82 months with the disease, but she never let it slow her down. She lived to the end without fear.
For the full story of Erin’s life, visit Let’s Do It! (http://erinbuenger.blogspot.com).