The Elephant in the Room is Cancer. Tea is the Relief Conversation Provides.

Inspired to Work Together

by Vickie BuengerCaregiver, NeuroblastomaSeptember 26, 2019View more posts from Vickie Buenger

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.

News of Erin’s diagnosis doubled us over like a gut punch, but we all got with the business of fighting cancer.  Almost immediately we had a bald daughter.  The only sign of her shining red hair was the little wispiest 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.  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 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.  Her classmates at Covenant Day School quickly caught on that handwashing was a must. They policed each other and would even send their best friends back to the bathroom for more soap if they hadn’t washed well enough.  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.  We treated 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 in school.  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 raised funds for a number of childhood cancer foundations and worked to increase federal funding of children’s cancer research.  In the process, Erin 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.

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 and with a deep well of grace.

And for me, her gifts of living remain and have redefined how I choose to live.

Since Erin’s death, I have tried to live those gifts.  In the process I have made many, many new friends in my community, across the nation, and around the world.  I do the best I can to fill in the cracks and in a small way be the glue that helps keep our passionate and lively community moving forward together, just like Erin.

Part of that effort has been the privilege of joining with and supporting dozens of other like-minded leaders in the childhood cancer community to help launch the Coalition Against Childhood Cancer (CAC2).  CAC2 is a collaborative network of organizations and individuals supporting and serving the childhood cancer and AYA community.  CAC2 advances a variety of childhood cancer causes by unifying foundations and individual advocates through broad-based coordinated action and collaboration that leverages the strengths and expertise of its diverse membership and minimizes duplication of effort.  Our most closely held shared value is to put children and teens with cancer and their families first in everything we do.  

More than 175 nonprofits, corporations, and individuals from 36 states and five countries, supporting and serving the childhood cancer community have joined CAC2 since its founding, and membership continues to grow as word spreads about the collaboration’s impact, ongoing programs, and unique projects that support the childhood cancer community.  Our mission is to foster and sustain greater levels of coordinated action, information exchange, learning, and broad-based collaboration through agreed upon initiatives in four broad areas:  Research & Treatment, Family Support & Survivorship, and Awareness & Advocacy Support.  Membership is open to childhood cancer foundations, individual advocates, students, and for-profit organizations that want to support our community, and we welcome anyone who is reading this to join:  Together, through creative collaboration and amplification of our members’ passion and strengths, we can work towards a world without childhood cancers.

Since 2011, CAC2 and its predecessors have worked to enhance the strengths and expertise of its members and to minimize groups’ duplication of members’ activities. Some members collaborate to fund research in an effort to speed progress by shortening review cycles, reducing burdens for investigator applicants, and increasing the scale of projects.  To support families, CAC2 built and maintains the Hope Portal, in partnership with the Association of Pediatric Oncology Social Workers, Association of Pediatric Hematology and Oncology Nurses, and KBI Biopharma. This searchable online tool allows families in any location to find financial, material and psychosocial support from a single source. CAC2 also conducts grassroots, social media campaigns to draw attention to a variety of childhood cancer-specific issues. It coordinates with the Alliance for Childhood Cancer and other groups to elevate childhood cancer as a national priority, to promote participation in Action Days, to support bills in Congress and other federal initiatives, and to raise awareness across the country and around the world.  We also host a project incubator that allows us to identify, shape, endorse, and implement collaborative projects.

The weekend of Erin’s funeral, our Congressman Chet Edwards asked my husband and me if we planned to launch a foundation in Erin’s memory, and that if we did, he would be a proud supporter.  Many of our broken-hearted friends made the same pledge.  We had already decided against such a move, based on Erin’s earlier assessment of the childhood cancer landscape.  Several years before, she had asked me which foundation was the best.  I told her that they were all doing great work and that one didn’t stand out above all the others.  She said, “Then we should support them all,” and proceeded to hold lemonade stands, play in kickball tournaments, run in races, and join in anything else that was a signature event of a childhood cancer foundation.

And in that spirit, CAC2 exists in recognition that our community’s foundations are doing great work, and we should support them all.

Vickie Buenger grew up in various small towns in Texas, including College Station and AlvinShe serves as Clinical Professor at the Mays Business School with a joint appointment to the Professional Program for Biotechnology at Texas A&M University.  She teaches competitive and cooperative business strategy and project management.

Vickie’s daughter, Erin, fought neuroblastoma for seven years. Since Erin’s death in 2009, Vickie has devoted time and energy to launching the Coalition Against Childhood Cancer (CAC2) on behalf of the many dedicated organizations and individuals striving to make a difference for children with cancer.   She currently serves as President of CAC2.

Vickie combines her academic background with her interest in the science and policy of childhood cancer and has spoken before gatherings of scientists, clinicians, regulators, industry representatives, and advocates in the United States and Europe.  She also serves as the Board Chair of the Hospice Brazos Valley Living Endowment and on the Executive Committee of the Brazos County Democratic Party.  She volunteers as an ordained Elder in the Presbyterian Church-USA.  She and her amazing husband, Walter, enjoy co-teaching the Loose Leaf Bible Study Adult Education class.

They have one son, Davis, who is a theoretical mathematician and senior data scientist at Chase in Columbus, Ohio.  Vickie and her mother, Madge Luquette, are the founding and only members of the Cypress Road Mother/Daughter Book Club.  For fun, Vickie crafts beaded jewelry and lanyards, plays trombone, does counted cross-stitch, hits the hiking trails and kayak waterways whenever possible, and hangs out with her friends and her disobedient dogs, Willie and Teddy.

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