Hormone Resistant Aveolar Rhabdomyosarcoma
Tumor Site: Chest and Abdominal cavity
Age at time of Diagnosis: 11 years
Date of Diagnosis: May 10, 2004
Location: North Dakota, USA
Merit Care Children's Hospital
Dr. Nathan Kobrinsky
Dr. Booth, Dr. Berdine, Dr. Mystry, Dr. Tiagen, Dr. Frisk
Monica was a true inspiration to all who met her. She was diagnosed at age 11 and faced it better
then most adults would. When she was asked if she was scared that she had cancer her response was
'You have to face your fears before they take over' 'Live each day as it comes to the fullest
because God never promised anyone tomorrow'
Monica's first surgery was to have the lower half of her left lung removed along with 2 inches of
3 ribs. She then did 6 months of chemo and was given the all clear. At her 1 year check up she
was told the cancer was back in the same spot. More chemo to follow and April 16 of 2006 Monica
slipped into a coma due to a blood bacterial infection, pneumosistic pneumonia, and a fungal
lung infection. 6 weeks later she was awake, aware, and fighting to get out of her bed and the
hospital. 2 days later she walked out of the hospital and made it to the last day of school.
She had her second surgery in July where they removed a tumor the size of a football and rebuilt
her diaphragm with grafts from her stomach lining. She did 6 weeks of radiation daily starting
in August of that year. During radiation she continued to go to school and do sports as well.
She maintained a 3.79 GPA along with playing for the volleyball team through all of her chemo
and radiation. 6 weeks after she finished radiation with an all clear we were told her cancer
was back and it was terminal. It had taken over all of her organs. But she wasn't ready to
give up yet. She insisted we keep trying anything. She said even if it didn't work for her
maybe it would help another kid somewhere else. The staff at the hospital became family to
us after 3 years of seeing them day after day, week after week. They were so special to us
as she was to them. Monica had one last wish before she passed that her doctors and nurses
made possible. She wanted to attend her camp Kamp KACE (kids against cancer everywhere) one
last time to tell her friends goodbye in person. She didn't want their last memory of her be
that she didn't show for camp. Her doctors and nurses made it possible for her to visit the
camp and visit her friends at camp. This was one week before she passed in August of 2007.
It was a very special time for her and our family along with her friends. Seeing her smile
one more time was so important to everyone she knew.
Monica had a favorite saying she found in a book called 'I Want to Grow Up, I Want to Grow Hair,
I Want to Go to Boise' by Erma Bombeck. 'I'm not sick...I just have cancer'. That was the way she
lived her life after diagnosis. She continued with basketball and volleyball during chemo. She
would tape a metal eye patch over her port to protect it and off she went to join the game. The
team loved having her. She always thought grades were so important and kept her grades up through
it all. Even doing homework in the hospital at 3 am because she was awake and the IV pump was
beeping wasn't an unusual site for the nurses taking care of her. She was also very active in
Girl Scouts and 4-H. She loved horses and was part of a horse judging team through 4-H called
Hippology. Her team placed first in all the meets they attended and were listed as the top team
in the state. And Monica kept up with it all arranging her chemo around her meets. Monica also
started something at the hospital that she felt needed to be done. She loved to make beaded
bracelets and necklaces so she would make them in all sorts of sizes and designs and give them
to the kids at the hospital. She also started buying little stocking stuffer type things and
would leave gift bags full of them for the kids at the hospital for the holidays. She never missed
a holiday including the 4th of July and St Patrick's Day. The one thing she asked us to continue
was the gifts for the kids for the holidays. She said 'Just because I won't be here doesn't mean
the kids have to go without'. So we as a family have kept the gifts going. Another legacy she
left us was her love of fishing. We have a lake stocked with plenty of fish two blocks from our
house. Monica would spend all the time she could at the lake fishing. Whether she caught anything
or not it was her time to reflect on things. When she started having trouble walking and had to
use a wheelchair we had to carry her to the fishing spot she liked since the slope was too steep
for her chair. So she and my father wrote a grant to the State Game and Fish Dept and it was
approved to build and place a handicap accessible fishing pier in her favorite fishing spot. She
wanted it not just for her but for all those people who love to fish but don't have the balance
to stand on a steep slope or can't because of disabilities. That fishing pier will be in place by
Memorial Day where it will be dedicated to her memory. She also has a quilt and pillow sham she
hand quilted during chemo that she gave to President Bush during her Make A Wish trip that is on
display at the Presidential Library with her name and her hometown on a plaque as the one who gave
it to them.
Living without her has been hard. Her brother and I take each day as a new day to get through.
Knowing she had the impact on everyone she met like we do makes it easier to talk about her to
others. To share her life and her story with others hurts but it helps. It hurts because we miss
her so much. But it helps because it gives us a way to keep her close to us and to keep the
wonderful memories of her fresh in our minds. She will be sadly missed by all and fondly remembered
by all who loved her.
The best advice I can give to anyone dealing with cancer is to take each day as it comes. Don't look
into the future to what could go wrong. Instead look to the future to what you can do the next day or
the next week. Look forward to the family and holidays. And don't be afraid to ask for help. Don't be
afraid to admit you are scared. And never be afraid to cry.
Monica, You were my first-born. You were so
beautiful inside and out. The love you showed everyone and everything has come back so much to you.
I miss you so much and so does Cody. Your legacy lives on kid...your inspiration keeps on going. You
were truly an amazing woman. Much wiser than your years. And still my champion. I love you sweety
and say hi to grandpa for me...don't let him catch all the good fish.
Love mom and Cody
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