Carli's Story

By Erin Waterman

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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.