Sister Act: Facing Cancer, and the Future, Together

The vanKoeverden sisters of Rochester, MN, want you to know they were Ana and Elsa way before the Frozen franchise came along. And to answer what starstruck little kids ask all the time: No merchandise. No millions. Not even free movie tickets.

Like their animated counterparts, Ana, 14, and Elsa, 12, are brave, strong and, yes, beautiful. But instead of an epic adventure to free their kingdom from eternal winter, the threat being faced by the real-life sisters, alongside their parents, is brain cancer.

A few months after her third birthday, Ana was diagnosed with a Grade 1 pilocytic astrocytoma, a slow-growing tumor in her brainstem. She had been vomiting on-and-off and, after ruling out simple causes, doctors at Mayo Clinic—where Ana’s Dad, Kevin, is a nurse anesthetist and Mom, Heather, worked as an occupational therapist—scheduled an MRI.

The tumor that turned the family’s life upside down was in a place too delicate for surgery, so Ana’s first treatment was a 15-month chemo regime. Two years later came another nine months of chemo, followed by six weeks of radiation. Then after four years of stable scans, the tumor grew again.

Among Ana’s most favorite Beads of Courage are the hearts, which mark the end of a chemo cycle. She keeps the beads in a canister, on the outside of which people who have been part of her health journey have added their signatures.

It has been stubbornly persistent since 2017, and Ana is now on her sixth line of treatment. That’s cancer-speak for the number of times and approaches doctors have used to attack the tumor.

Ana has more than 800 Beads of Courage to show for it. One for every needle poke, scan, dose of chemo or radiation or hospital stay over the past 11 years. But there are no beads for rashes, fevers, nausea, weight loss, exhaustion, missing school and having to modify so many activities for such a long time.

“When you look at me, you don’t think, ‘Oh, my God, she has cancer!'” Ana said. “But when you see all my beads, you’re like, ‘Oh, she has cancer.’ The beads help explain me, without any words.”

Heather and Kevin vanKoeverden, with daughters Ana, Elsa and Calla, the family’s Wirehaired Pointing Griffon. The breed is known for being loyal, vigilant and gentle, which Ana confirms. She said, “When I spend time with Calla, I feel like she’s always there for me. Whenever I sit on the couch, she’ll just come sit by me because she wants attention and wants us to love on her.”

Putting sister Elsa into words is trickier. Just 17 months old at the time of Ana’s diagnosis, she has little or no memory of when cancer wasn’t in the family picture. Glimpses of her spirit and soul show in the CaringBridge Journal that Heather and Kevin have been updating since 2008.

The day before Elsa turned 4, on May 3, 2011, Heather wrote, “Elsa has grown up as a ‘shadow survivor’ and knows nothing different than hanging out with kids without hair, playing doll-hospital and joining us on this journey and all that goes with it. As she matures, she takes on a new understanding of the story. This kid can come up with some amazing questions about God and how this whole deal works.”

She even wondered aloud when she might be getting cancer, too, as if it was a normal part of childhood, like well-child visits and immunizations.

Other Journal entries describe Elsa wanting to sell her toys to give money to Ana’s doctors for better medicine, helping Ana put on her shoes and coat for a post-chemo trip to the ER, and asking her parents, “When is this cancer ever going to go away?”

With no answer to this question, the vanKoeverden girls simply keep going.

For Ana, it’s mornings at school and afternoons to rest, recover and do homework. Then it’s off to serve as manager of the high school girls basketball team, unless fatigue and nausea interfere. “I’m feeling about 50% right now,” she said.

She has also taken over from her parents much of the writing on her CaringBridge Journal, providing health commentary from a 14-year-old’s perspective—”This tumor is stupid”—and updates on her “long-overdue” bedroom remodel.

Ana’s tumor has been pressing on the part of her brain that controls movement of her legs and feet, so horseback riding helps strengthen her dorsiflexors, the muscles that help lift her feet. Ana calls the muscles her “horsey flexors,” mostly to tease her mom. Ana usually rides an easygoing horse named Mac, while Elsa has a bit of a wilder ride with Lily.

About her sister, Ana recently wrote, “Elsa is just being her crazy self. She’s liking middle school and she does really well. It’s totally unfair how little she has to study. Even though we have our days, she does show up when I need her. Her life gets changed by all the stuff happening to me, too.”

Elsa prefers the view from horseback, and would like to ride much more often than her schedule permits. She would also like to have much more time with electronics than her mother would consider plenty.

Her view about Ana’s cancer is wise, practical and inspirational: “Just think less and live more, for Pete’s sake! If all you do is worry, if things would actually get bad, you will have lived a whole life of worry. Don’t worry until you have to. Just have fun.”

Comments (30)

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Barbara Skipper May 27, 2020 8:16pm
Somehow I never realized how beautiful Carol really was we have to find a way to take this awful terrorizing disease back to hell exactly where it came from I love u my beautiful sister. I’ll meet you in the morning over there. Love u
Jan LaVoy Apr 24, 2020 12:51pm
What a inspiring story, Ana. You should be very proud of the young woman you have become through all of this ordeal. You are such an inspiration for us all, showing us courage, strength and love. Know this has been a very long journey and we hope that you have the strength to continue on. You are such a treasure to your Mom and Dad. You have also been such a good example for your sister. She has learned a lot and loves you more for all you have shown her. Love seeing the pictures of you both...it's been a while since I have seen you both, but you are becoming such beautiful young women. I will continue to pray for you through this journey. Give your family my best - an extra hug to Grandma Phyllis.
Linda Clark Apr 18, 2020 2:25pm
Wow this is such an inspirational story of such a warrior and her warrior family. God Bless You all and let chemo 7 be the CURE! I have never meant Ana but am friends with her Grandma Chris and Grandpa Dutch. Continue being strong dear Ana. Bless you too Elsa for being such an encouraging and loving sister. I continue to wear my deep aqua bracelet and keep you all in my prayers.
Sharon Hitchcock, HUC in the CICU. Apr 18, 2020 8:28am
What a great story of how to live thru trials. I love what Elsa's view is, if more people followed her advice this world would be better place. I have followed your story since the beginning having worked with your Dad since Ana was born. I admire you all for your strength and faith thru this journey. May God bless you all I will continue to keep you in my prayers.
Julie Demirsar Apr 17, 2020 9:01pm
I love that you all can continue to fight and keep positive through this journey! Keep the faith and prayers are going up for you all!!
Bonnie Buysse Apr 17, 2020 9:01pm
Love the pictures and what a Beautiful written story. I have heard about your horse so was fun to see the picture. Ana your are one amazing girl. You are amazing in many many ways! Talked to Grandma today and you are really amazingly brave making her beautuiful !! We are Always thinking of you and keeping you in our thoughts and Prayers. You are All a very Special family and in our thoughts and hearts. Prayers
Kay Gilbert Apr 17, 2020 3:37pm
Ana my thoughts and prayers are with you and your family, your such an amazing young lady to have gone through all you have endured , But please keep fighting cause one of these days I'm going to get to meet this amazing young women.
Linda Ocana Apr 17, 2020 2:54pm
I'm so happy to be friends with your grandparents Dutch and Chris, and appreciate being able to follow your story. I am also a grandparent, so can empathize with them? You are truly one of the STRONGEST. young ladies, mom and dad, FAMILY I know!! I am sending as. much positive HEALING energy and support as I possibly can!! 💕
Sharilyn Wissink Apr 17, 2020 2:41pm
Beautiful story! The story of the beads really hit me hard. Sending encouragement and prayers!
Edwin Gonzalez Apr 17, 2020 2:13pm
Thank you so much for sharing your story. You and your family will always be in my Thought and prayers. May God always watch over you Comfort and strength to carry-on with life.
Jane hanson Apr 17, 2020 2:01pm
I am with Ana live each day fully and with as much fun as you can pack into it !!!!!
Becky Kidman Apr 17, 2020 1:42pm
Such a great story!! You are such a special family!! Many prayers for all of you. May God put His loving arms arms around each of you and bring comfort, peace and healing!!
The Morrissey's Apr 17, 2020 1:16pm
Wow! What wise and beautiful young ladies! Thank you for sharing!
Michael A Kuntz Apr 17, 2020 1:12pm
The perfect family to feature for Caring Bridge as they have the run the gamut of experiences and have many people in their lives that have also been a part of their story.
Neveau family Apr 17, 2020 1:05pm
Yet another reason to love your family! You guys are special...❤️
Jan Hagedorn Apr 17, 2020 12:37pm
Wonderful perspective to share with us! Sending all my good wishes and prayers.
Chris Nelson Apr 17, 2020 12:30pm
Amazing story of an amazing family! 🙏🏻
Kari MacIver Apr 17, 2020 12:28pm
Wow, this is beautiful, as are all of you. Continued prayers to you all, what warriors your family is. And what beautiful, beautiful warriors at that. Ana is often lifted up in prayers at the office of the Bishop, SEMN Synod, as well. I hope she can feel the love of the many that surround her on this journey.
Penny L Thorkildson Apr 17, 2020 12:11pm
Well-written article certainly captures the love, compassion, and wisdom displayed by your family for oh-too-many years. ////♡🙏♡||||
Pam Burton Apr 17, 2020 12:11pm
Awesome article! Praying always!
Jennifer L Fisher Apr 17, 2020 11:56am
How cool!!! And what a wise quote from Elsa!!! I may put that quote on the wall of my office bc it could help so many people! Thanks Elsa!! Thanks Ana and family for showing us how to live.
Jamie Apr 17, 2020 11:45am
Awe - I love this and you all!! Such a great story of a wonderful family going through something terrible together! You girls are the original Ana and Elsa!! Miss seeing you all and hope you are doing well, as always if you need or want anything just let me know!! Hugs to my favorite VanKoeverden's!!! Jamie
Cara Apr 17, 2020 11:38am
This story is SO awesome! And this family is an exuberance of resilience and faith. Thanks for sharing!
Dawn Johnson Apr 17, 2020 11:37am
Absolutely love the article. Very nice! You are such an amazing and wonderful family. Take care and hugs to all of you.
Louise Prescott Apr 17, 2020 11:07am
Story well said. Continue with the positivity!
Yvonne King Apr 11, 2020 8:39pm
Find out about St. Margaret of Castello.
Cathy Woolley Apr 06, 2020 1:23pm
I am trying to not worry,but with everything in this crazy world right now , I find it difficult. Your story is very inspiring.
Kittie Prosser Mar 31, 2020 6:53am
Prayers for this awesome family!!
Rudzinski John Mar 23, 2020 6:13pm
Thanks I needed this as an adult on neuro onc unit Will follow your adventures forward
Lucy Berlin Mar 07, 2020 10:14pm
Thanks for sharing! This Beads of Courage necklace is such a wonderful idea! Wish I'd thought of it for my kids! And as far as Elsa, there's wisdom in what she says, though it's easier to do when you're feeling well!
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