Story Project
Carli's Story
Tell us your story.
One week before her 4th birthday, my daughter Carli was
diagnosed with lymphoma, a type of cancer. The day after
Thanksgiving 2004, I rushed her to our local hospital on
Whidbey Island because she was struggling to breathe. Six
hours later, I was flying down the freeway to
Children's Hospital ER where x-rays showed her lungs
filled with fluid. I did not know then that Carli and I would
not return to Whidbey Island for the next nine months. She
was treated for what was thought to be severe pneumonia until
tests on the fluid showed cancer. Once the fluid was drained,
it became evident she had a tumor around her heart.
It is difficult to describe what it is like to learn to
administer highly toxic drugs to your young child, to watch
them lose hair and revert to a kind of "infancy"
just as they reach toddler-hood. It is difficult to describe
the social impact on a child to be taken out of their
community of preschool friends and instead go through all
ranges of physical and emotional transitions, sometimes many
within a single day, with everpresent TV and Disney movies
for distraction. A kind of limbo where family and other bald,
often weak and ill children become the peer group, the
norm.
Thanks to huge strides in childhood cancer treatments over
the past 15 years, the survival rate for Carli's
cancer is 80%. She will complete her two years of chemo the
week of her 6th birthday and plans to have the biggest party
ever!
I read accounts of survivors undergoing childhood cancer
treatment 20+ years ago and am aware she likely would not
have survived had she been born at a different time or at
least would have had a more tortuous course. This experience
has given me the drive to do anything in my power to support
childhood cancer research. Funding is sorely needed to
continue improvements to assure a viable future for all our
children, especially as numbers of survivors leap and
long-term impacts of treatment remain in question.
What does Children's mean to you, your child and your family?
The Ronald McDonald House across the street from
Children's became our home because Carli was
medically required to stay within one hour of
Children's for the duration of her intensive
chemotherapy. If any of you have an opportunity to visit the
Ronald House, I encourage you to do so. It is a miraculous
place. My daughter and I met countless other families in the
same boat of childhood cancer. This experience radically
shifted my view on what is possible. I honor the memories of
those children we met who did not survive their illness or
chemotherapy, those whose bedsides Carli and I sat by in
their crises, those from Montana, Alaska, Idaho, California,
all over Washington who graced us with their stories and
spent countless hours playing with Carli on the playground of
the house and sharing activities such as improv theater and
scrapbook stamping.
The Ronald House is like a hotel for people who are not
there by choice but people who are guided by the compass of
the love for their children. I came to see that each child
represents a piece of each parent's heart, and there
is tremendous power in living in a community that is directed
by heart.
As far as my personal story, I could go on about what
worked and did not work regarding the health insurance
system, about how many parents lose their jobs with the
critical illness of a child, how many marriages fall apart,
how people react in unpredictable ways to a diagnosis, but
what I really want to share is how being touched by the
cancer experience changed me. Gratitude sums it up. Gratitude
for life. Gratitude toward my employer who kept me on the
books even though I was unable to work more than 10 hours per
week for most of a year. Gratitude toward family and friends,
doctors, nursing staff, and especially total strangers who
acted out of compassion with spirit and gave us their energy
and time. I have learned more about my own strengths than I
ever knew before, and for that I am grateful.