Elephants And Tea - September 2019 - 31

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 benefited 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.
* Capture moments of grace, even in grim times.
* Find something you can love in each person you meet.
* For the best results, always marry talking, listening, thinking,
and acting.
* Go to bed knowing you did your best that day.
* Make a difference for others.
* Laugh often and mean it.
* Work and play together whenever you have the chance.
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.

ELEPHANTSANDTEA.COM
SEPTEMBER 2019

31


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Elephants And Tea - September 2019

Table of Contents for the Digital Edition of Elephants And Tea - September 2019

Contents
Elephants And Tea - September 2019 - Cover1
Elephants And Tea - September 2019 - Cover2
Elephants And Tea - September 2019 - 1
Elephants And Tea - September 2019 - Contents
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