Shanna Decker: Lose a Leg, Learn to Love

I wrote this profile of childhood cancer survivor Shanna Decker for what is now Caregiving in America magazine.Today, Shanna views her cancer and the resulting loss of a leg as a great gift. She is a remarkable young woman.

SHANNA DECKER: LOSE A LEG, LEARN TO LOVE

shanna-decker

Shanna Decker

For one week, Shanna Decker hid under the covers and cried, not wanting to talk to anyone, not even her parents. If you were seven years old, just found out you had malignant bone cancer and were about to lose all your hair to chemotherapy, you’d probably hide under the covers and cry, too.

And yet, after just one week, a week that Shanna said her mother spent not eating or sleeping, the entire Decker family—father Jack, mother Sherrie and 13-year-old sister Melissa—found the peace and strength they needed. “We talked about it as a family and we understood that we were not in control, that this was happening for a reason,” Shanna remembers. “We said, ‘Okay, Lord, take us where you need to take us.’”

That act of surrender changed everything. “We decided that we were going to enjoy living every day,” says Shanna, now a freshman at Winona State University. “While it was still difficult and scary after that point, the core fear that had gripped us seemed to disappear. The trust that I had in my parents and their trust in the Lord made it that much easier for me to accept what was going on.”

Overnight, the Mayo Clinic in Rochester, just 25 minutes from the Decker’s house in Plainview, became a home away from home. “My mom worked at a bank but she spent every day she could with me at the hospital,” Shanna says. “My father came every night with my sister and we had family dinner together in my hospital room; he would also stay on the weekend whenever he could get away from the business he ran. We definitely grew closer because there was nobody else for us to go to except for our family and the Lord. Cancer is still our biggest bond. It’s kind of fun.”

Fun? Yep. Shanna actually got excited about going back in the hospital for chemotherapy treatments because she and the other “cancer kids” she had befriended there had a blast tormenting the nurses. “We’d turn off the lights in the room and have one of the kids call a nurse in,” she says. “We’d wait until she got a foot away and then six of us would jump up and cover her with Silly String. We’d also fill up big syringes of water and go soak the nurses while they sat at the front desk. We built forts, we put glitter all over things, we’d stay up too late and watch movies. Even though we were sick, we enjoyed what we could.”

That great attitude helped Shanna cope with the painful side of cancer as well, including nine months of chemotherapy that made her feel like the doctors “were running poison through every part of my body.” Three months after beginning chemo treatment, she endured a 12-hour surgical procedure called rotationplasty, in which the middle portion of her left leg was removed, including the knee. Her lower leg was then rotated 180 degrees and reattached, thereby transforming her left foot into her left knee. “The surgery was a blessing,” she says. “With a prosthetic leg, I have the opportunity to do almost anything I’d like to do.”

On December 31, 1998, nine months after her diagnosis, Shanna walked out of the Mayo Clinic as a cancer-free former patient. It didn’t take long for her to return, this time as an advocate for other kids with cancer. “We would come in when a new kid was diagnosed with cancer,” Shanna says. “My parents would talk to the parents and I would play with the kids. I enjoyed being there and that made the kids more comfortable. They knew I understood exactly how they felt.”

In the years since, Shanna has embraced public speaking, been featured in documentaries and was selected as one of three cancer patients whose story was featured in a special worldwide Mayo Clinic publication. Most importantly, she has made over 600 visits to cancer patients and amputees, most of whom were under 18. Many, if not most, of these encounters have led to lasting friendships. “My closest friends, besides the people I grew up with, are people that I have met through the cancer world,” she says. “We always say it’s a club that you never want to be a part of, but it’s the best club you could ever be in.”

Shanna decided to stick close to home for college so she could make the hour-long drive to the Mayo Clinic whenever she was needed. “My family grew to appreciate those visits more and more, the way that we could walk into a hospital room and see people crying, and then a few hours later leave them with a sense of hope,” she says. “If we can make just one family smile in a moment where they are in such heartache, that’s worth it for us. It’s about changing lives.”

Five years ago, Shanna started bringing new patients a gift box filled with items she picked out specifically for them. She calls those efforts “Hearts of Hope.” “I always included a picture of myself and wrote a note on the back so that they knew that somebody who understood was always just a phone call or 25-minute drive away,” she says. “In future visits, I would see my picture hanging up in hospital rooms because the patients would bring it with them every time they had treatment. There aren’t even words to express how wonderful that is, to be providing hope even when I’m not in the room with someone.”

At seven, Shanna didn’t know if she would have a future. Today, she is very clear about what that future will look like. In addition to working with Brighter Tomorrows, the support group her family co-founded for parents of children with cancer , she plans to start a nonprofit to help families affected by childhood cancer. “Given the opportunity to be a caregiver for so long has shaped the way I want my career to be,” she says. “Cancer has given me a wonderful opportunity to help people and change lives.”

Cancer turned Shanna’s life inside out and upside down, and she wouldn’t have it any other way. “Cancer is the biggest blessing I have ever had in all of my life,” she says. “I couldn’t even imagine what my life would be without it. I learned what it meant to really love other people and how to live every moment of life to the fullest. I would say to anyone that their greatest turmoil or sorrow can be a blessing. God always works to the good of those who love Him. Not sometimes, but always.”

***********

I wrote this companion article about Shanna’s mom, Sherrie, and the charity she co-founded for families impacted by childhood cancer.

brighter-tomorrows-logo

HOPE FOR BRIGHTER TOMORROWS

Sherrie Decker doesn’t want other parents to endure the anguish she went through when her seven-year-old daughter, Shanna, was diagnosed with bone cancer. “It was like someone had kicked me in the stomach and kicked all the life out of me,” she remembers. “For the first five or six days after Shanna’s diagnosis, I didn’t eat or sleep, and I was breathing into a paper bag because I was hyperventilating. It was awful.”

What troubled Sherrie the most was knowing that she wasn’t in any condition to provide Shanna with the support she so desperately needed. “The turning point was when I woke up at three one morning and decided I couldn’t do this by myself anymore,” she says. “I went into my living room, dropped to my knees and told God, ‘This is way bigger than I can handle.’ In that moment, God gave me a perfect peace, a warmth, that went right through my body. He reassured me that I didn’t have to do this by myself, that He was going to carry me the entire way.”

The next morning, a new day dawned. “Once my husband and I were able to get ourselves together, we were able to give our seven-year-old the strength that she needed,” Sherrie says. “The patient is not going to get better if the caregiver is falling to pieces.”

Shanna endured intense chemotherapy and lost a leg to the cancer, but nine months after her diagnosis, she left the Mayo Clinic cancer free. Today, she is a freshman at Winona State University and, like her mom, continues to be an active volunteer and advocate for childhood cancer patients.

In 2007, Sherrie formalized her family’s commitment to supporting families stricken by childhood cancer by co-founding Brighter Tomorrows, a nonprofit 501c3 corporation, with three other mothers of former cancer patients. “Brighter Tomorrows is an outreach to families touched by childhood cancer,” Sherrie says. “We were determined that no family should have to travel this difficult road alone.”

On the first Tuesday of every month at 6:00 PM, Brighter Tomorrows hosts a dinner and get-together for childhood cancer families at the Ronald McDonald House in Rochester. These families share experiences, meet others facing similar challenges, and gain strength from each other. “The most powerful element of the meeting is when the children leave with a Child Life specialist to participate in organized activities and the parents remain in the room,” Sherrie says. “The parents have to be so strong when their child is there, but when their child leaves , they let all their real emotions show. This is when you’ll find one family go over and sit down by another one and just hug them or hold their hands. It’s one caregiver helping another. If they couldn’t draw strength from other families, I don’t know how they’d do it alone.”

Brighter Tomorrows provides parents with Family Care Kits, a soft-sided cooler filled with all the necessities to get through the first couple of weeks of a childhood cancer diagnosis. Other services include decorating patients’ rooms, hosting family retreats, sponsoring family events and hosting professional speakers. Brighter Tomorrows is also in the process of developing a website that will host a password-protected database containing contact information so participating families can continue to communicate after leaving the Rochester area.

No matter how much help Brighter Tomorrows provides, community support is also vital for parents of childhood cancer patients. “Several things saved our lives when Shanna was diagnosed,” Sherrie recalls. “For an entire year, a full meal was delivered to our home every other night by friends and neighbors. Many nights we had no strength to open that door and visit so they left the food in coolers outside our door. That was wonderful.”

Sherrie’s neighbors regularly mowed the family’s lawn and one friend was given a key so she could do a thorough spring cleaning of the house. “I lived in the hospital for a year so things around my home kind of fell apart,” Sherrie says. “But when I came home, it was to a house that was sparkling,” Sherrie says. “There was no way I could have done that. These things take so much pressure off of a family dealing with cancer.”

Finally, don’t make the mistake of not visiting parents of a cancer patient because you don’t know what to say. “Just come and sit with them,” Sherrie says. “Just hold their hand or let them tell you how their day has been. You can tell them, ‘I don’t know what to say because there’s nothing I can say to make this better. But know that I’m here to sit and listen when you need me.’”

Eleven years after Shanna’s diagnosis, Sherrie and her family are grateful for the wisdom and direction they gained from their cancer experience. “The Lord gave us Shanna’s health back but He also let us continue serving others,” she says. “Rather than materialistic things, we found that giving of ourselves was what really truly made us joyful inside. We always say that cancer is the biggest blessing that ever came into our lives.”



UPDATE FROM SHANNA (10/08/13)

Shanna with five-year-old Kaden Tjossem, who succumbed to cancer on December 22, 2012

Shanna with five-year-old Kaden Tjossem, who passed away on December 22, 2012

I graduated from Winona State in December of 2011 with a double major: Bachelor of Science in Business Administration and Management of Information Systems. I worked in Development (fundraising) for Mayo Clinic for one year before moving my employment to the Kasson-Mantorville school district acting as their District Assessment Coordinator (in charge of all standardized testing) and Infinite Campus Coordinator (in charge of their major computer grading system). The KM school district has an unusually high population of children with cancer and that has given me the opportunity to bring my mentorship to them as well.

Upon my graduation, I moved to Rochester, Minnesota, where I currently reside. I spend my free time playing with my three-year old nephew and niece, enjoying my church small group, and leading another with my best friend. I continue to connect with children all around the country who have/had childhood cancer and Rotationplasty. This past summer I traveled to Atlanta, Georgia to spend five days with three young girls with Rotationplasty from around the country who I have been blessed to mentor. We are a part of a campaign called TheTruth365, which exists to end childhood cancer.

Shanna speaking at a Mayo Clinic fundraiser

Shanna speaking at a Mayo Clinic fundraiser

I remain an active speaker, travelling the country and meeting people of all races and nations, sharing with them the reality of turning passion into active change. I’ve been able to share with them the transition of moving from being a childhood cancer survivor into adulthood. My passion for leadership, world change, and sharing that love always wins remains unwavering.

Brighter Tomorrows is in its sixth year. My mom is the president-elect, and my family remains very involved. My father is our greatest support team; my sister and her family are always with us whenever they can be, and I am in charge of young adult and children’s activities in a program called BLAST (Bonding, Loving, and Sharing Truth). We continue to see lives heal and children give of themselves to those who are following in their footsteps. This year we launched our bereavement program, Tomorrow’s Chapter. I am also the director for our largest fundraiser, Go for the Gold, which features a 5K Run, 3K Walk and Kids Run.

Click here to visit Shanna’s website, “Because Love Wins”

Click here to visit Shanna’s Facebook page.

Click here to visit the Brighter Tomorrows website.

Click here to visit the Brighter Tomorrows Facebook page.





Click here to view all my posts about dealing courageously with cancer.






ABOUT PHIL BOLSTA

Phil is the author of Through God’s Eyes: Finding Peace and Purpose in a Troubled World, a comprehensive guide to living a spiritual life. Who will benefit from reading it?

Anyone who is on a spiritual path, or wants to start one
Anyone who loves life, or wants to learn how to
Anyone who is happy, or wants to be happier

To order your copy of Through God’s Eyes, go to GodsEyesOrder.com OR order from Amazon at GodsEyesAmazon.com OR for an inscribed copy, click here to e-mail Phil for information.

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Through God’s Eyes won first place in the “Spirituality and Inspirational” category at the San Diego Book Awards on June 22, 2013.

Here is a two-minute video introduction to Through God’s Eyes.




Want to learn more about Through God’s Eyes? Here is a free 40-page PDF sampler from the book that includes:

• an overview of the book
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• the Foreword by Caroline Myss
• my Introduction
• chapter excerpts
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Just click on the link below to download your free PDF sampler!
THROUGH GOD’S EYES PDF SAMPLER





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Phil’s eBook, The Logic of Living a Spiritual Life: Supporting a Life of Faith Through Logic and Reason, is now available for 99 cents on Amazon.

Order it at GodIsLogical.com.

In this eBook, you’ll find answers to questions like:
• What is the cornerstone of a spiritual life, and why?
• What is the secret to liberating yourself from other people’s judgments and expectations?
• Why is there an exception to “Everything happens for a reason”?


Those who worship logic instead of God are only half right. Not only is it logical to believe in God and to live a faith-based life, the existence of a loving, benevolent God that governs all creation is perhaps the only systematic worldview that explains every aspect of life.




Schedule a Mastery Mentoring phone session with Phil to learn how to apply principles of spiritual living more effortlessly and effectively. Priced affordably! Click here to e-mail Phil for details.



SiSe_fullcover_final.inddPhil is also the author of Sixty Seconds: One Moment Changes Everything, a collection of 45 inspiring, life-changing stories from prominent people he interviewed, including Joan Borysenko, Deepak Chopra, geneticist Dr. Francis Collins, acclaimed sportswriter Frank Deford, Dr. Larry Dossey, Wayne Dyer, Dan Millman, Caroline Myss, Dr. Christiane Northrup, Dr. Dean Ornish, Dr. Rachel Naomi Remen, Dr. Bernie Siegel, James Van Praagh, singer Billy Vera, Doreen Virtue, Neale Donald Walsch, and bassist Victor Wooten.

Here is a three-minute video that introduces you to Phil and his book. Click here to order Sixty Seconds. Click here to ask Phil to add you to his e-mail list for updates on his blog and books.

Reading this book is like spending a few minutes face to face with each of the contributors and listening to their personal stories. Click here to read unsolicited testimonials from readers. Learn more by visiting the official Sixty Seconds website.

Sixty Seconds was one of three finalists in the General Interest/How-To category at the 12th annual Visionary Awards presented by COVR (Coalition of Visionary Resources) in Denver on June 27, 2009.

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