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Karen’s Fight Like a Girl Story about her Daughter (Childhood Rhabdomyosarcoma)

Karen's Story (Childhood Rhabdomyosarcoma)This is actually the story of my daughter who was diagnosed with cancer at age 11. When she was diagnosed they took out half a lung and part of her diaphragm to remove the cancer. When she was asked if she was scared about having cancer her answer was, “You have to face your fears or they will take over…so no I am not scared.”

She started chemo the next week and after her third treatment she went back to playing volleyball and basketball at school because as she said, “I have cancer, it doesn’t have me.” She wore a metal eye patch as a port cover so no one could bump her causing problems. She also continued with her academics, making the academic pursuit team, honor roll, and tutoring. She continued with 4-H and Girl Scouts becoming one of the top sellers of cookies in our area for three years. She was part of the 4-H hippology team which made it to Nationals three years in a row. Plus she was a barrel racer and pole bender for the rodeo team in high school. When her cancer was determined to be gone she started supporting a great organization called St. Baldrick’s raising money for childhood cancer awareness.

One year later her cancer had returned. She went back to chemo, radiation, and all the fun stuff, but never slowed her life down as far as activities. She ended up about midway through chemo with a spider bite that caused a blood bacteria. She ended up in a coma for six weeks with a blood bacteria and pneumocystis pneumonia battling for her life. As was her true form, she came out of that coma demanding to walk out of the hospital and go to the last day of school. She was able after therapy to do exactly that and walk out of the hospital and make it to the last day of school. She had surgery two weeks later to remove the rest of her lung and diaphragm along with parts of her stomach muscle. She started radiation a week later. Six weeks from the last radiation treatment we were told there was nothing else to do, the cancer was back and it was terminal. She asked the doctor why he was ready to give up on her when she wasn’t ready to give up on herself. She tried every experimental drug available along with a few that weren’t even on the market yet to treat this cancer. In April of 2007 we were told there was no other medicine to try. So she went fishing.

Every day for the rest of her life she made the trek to our lake and went fishing. Even if she didn’t catch anything, she continued because she felt that was her place to get her thoughts together about the rest of her life. She wrote for a grant for a handicapped fishing pier to be put in place at our lake for those elderly and handicapped in the area who wanted to fish yet couldn’t get down the steep banks. She planned her own funeral, from the flowers to the scriptures read, to the songs sung or not sung in one case. She didn’t want “Amazing Grace” at her funeral because she felt everyone cried during “Amazing Grace.” When I asked her if she thought people wouldn’t cry at her funeral her response was, “well it won’t be because of that song.” She asked friends of the family and some she went to school with to be pallbearers at her funeral. She picked out her own spot in the cemetery so it was centrally located to the rest of the family that she never got to meet. She even asked for a purple casket if they had one since purple was her favorite color. Two weeks later, August 18, 2007, she passed away. But not before she asked her oncologist to have the 22 pound tumor in her abdomen removed after she passed to send to research hospitals to find a cure for that type of cancer. She said she knew it wouldn’t work for her but maybe it will save one child somewhere.

To this date there are now 39 clinical trials or approved treatment options for her type of cancer. The grant for the fishing pier was approved two weeks after her death. It now sits in place at her favorite fishing spot, for all to use. She lived her life by one motto I live by even now, “Live every day as it comes to the fullest, because God never promised anyone tomorrow. Life is too short for anger or regrets. Never wonder what you could have done…but what you can do.”

Karen
North Dakota
Submitted 03/25/2014

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

3 comments

  1. Karen,

    Thank you for sharing about your fabulous daughter! I love her caring and tenacious spirit, and her efforts to help others. My daughter also battled rhabdo from age 12 – 15 and never lost that strength and hope, even when everyone around her did. Sending prayers and hugs to you and your family.

    Wendy

  2. Karen what a beautiful daughter both inside and out, and what a lovely legacy left for others to use and for you to know her work is still going on as she walks with God.

  3. Dear Karen,
    I am new to this site and just wanted to say that your precious daughter’s strength, courage and tenacity just takes my breath away. There are many adults out there who, for whatever reason, just can’t manage that level of strength to stare straight into the face of their own mortality and not deny it but take as much control of it as they possibly can!
    I am so very sorry for your family’s tremendous loss — and at the same time I want you to know that cancer did NOT win–it couldn’t touch your daughter’s strength, spirit, love and legacy. Her healing DID occur and she is complete and at peace with our Creator now!
    Lori

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