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Ashley Rutenberg
Hepatoblastoma

15 Months Old at Diagnosis

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My name is Ashley Rutenberg, and I am a 21 year survivor of stage IV, twice relapsed liver cancer. I was diagnosed with a cancer called hepatoblastoma when I was 15 months old. For the next 3 years I underwent more than 14 rounds of chemotherapy, 7 surgeries, countless blood transfusions, hospitalizations, and all the side effects of treatment. I was declared No Evidence of Disease twice and I relapsed with metastases twice. Then, I was declared No Evidence of Disease for a third time in March, 1990 after a final surgery. In my case, the third time was indeed the charm.

In my life after cancer, well, life went on. I was at the barn every moment I wasn't in school or sleeping, at times even doing the latter on the top of a wooden tack truck with a few saddle pads for pillows. I was an avid hunter/jumper competitor and in my last year of competition, I kicked butt and won the national championship in New York City. Then, I decided it was time to turn away from riding and get back to school. I attended the University of Chicago, graduated college, and now have a thrilling job working to build a more sustainable world. And no, I still don't know what I want to be when I grow up, but I'm having a heck of time on the way.

Now, as I grow older and theoretically, wiser, I have started to look back on my fight with cancer with new eyes. My life and my story leave me compelled to help. I began to reach out, learning about children who are fighting cancer today and saying hello. Letting those people who are in the midst of the struggle know that there is a survivor out there. A survivor who wasn't supposed to be one.

When I was diagnosed, there was about a 60% chance I would survive. With one relapse under my belt, the prognosis changed to 20%, and after my second relapse, no one talked about survival anymore. Today, I talk to others in the fight against children's cancer and show parents and kids first hand that statistics mean nothing to the individual. I share my life of having been a teenager with scars, having hearing loss from chemo, being short or having wonky teeth - some of the late effects that survivors of children's cancer live with. When I first started talking to parents and kids about these issues, I found that many of them had concerns that these side effects would be crippling. That their lives, and their children's lives, would never be normal. I tell them all that I have been able to accomplish. That I didn't just get by in school, in activities, in life, but I did well. I tell them that cancer kids don't just survive, we kick butt!

Each generation teaches us more, until the day comes when cures are found. Without continued research and the individuals dedicated to it, without funding, without support, very simply – I would not be here today. Nor would my case be able to aid in the survival of those diagnosed after me. It is organizations like CureSearch, devoted to the research that saved my life that allow me to be here today.

To all those who have given their time, money, and hearts in the years past, I am more thankful than you can imagine. We have come so far together, but we still have much further to go. Cancer is still the number one disease killer of children. Every child, every person, should have the opportunities I have had. The opportunity simply to live. Thank you for helping to bring that opportunity one step closer for the people who are fighting cancer today. Thank you for helping me SURVIVE!


 

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