This excerpt is from an article appearing on The Gazette entitled, “Cancer in Iowa: Here’s how Iowans are battling the state’s dire cancer rates,” written by Brittney J. Miller.

Scott Kaas holds his daughter Devyn, age 15 months, while they await blood test results during an appointment at the University of Iowa’s Stead Family Children’s Hospital in Iowa City on March 1. Scott spent 20 years working with the American Childhood Cancer Organization’s “What About Kids?” research initiative before his daughter was diagnosed with an aggressive form of blood and bone marrow cancer last year. (Nick Rohlman/The Gazette)

Scott Kaas, 52, has been involved with the American Childhood Cancer Organization’s “What About Kids?” research initiative for two decades. He has talked with legislators around Iowa — including Gov. Kim Reynolds — trying to push for more funding for pediatric cancer research.

His life changed when his daughter Devyn was diagnosed with acute myeloid leukemia at 7 months old last year. After five rounds of chemotherapy, she gets to live at home again. Her appetite has returned. Her hair is finally starting to grow. And, last month, her family received good news: She’s in remission.

Scott’s work, though, hasn’t stopped. As Iowa coordinator for the “What About Kids?” initiative, he sends emails to Iowa legislators every day, urging consideration of policies that support cancer prevention and research. He has even invited state officials to the University of Iowa Stead Family Children’s Hospital — where his daughter was treated — for a tour.

Brooke Kaas holds her 14-month-old daughter Devyn at the Kaas’ home in Cedar Rapids on Feb. 14. Devyn, now 15 months old, is in remission after months of treatment for acute myeloid leukemia, an aggressive cancer of the blood and bone marrow. (Nick Rohlman/The Gazette)

But many of the cancer-related bills he was pushing for didn’t even survive this legislative session’s first funnel deadline. “Your request is on the list of the millions of dollars that have been requested by numerous groups,” Rep. Joel Fry, R-Osceola, chair of the Iowa House’s Health and Human Services Appropriations Subcommittee, wrote in an email response to Scott Kaas advocating for more funding for pediatric cancer research.

The lack of urgency is frustrating, Kaas said. “It might take three years to find a cure for one type of cancer, or a drug that helps change a treatment plan,” he said. “The more time they take dragging their feet to pass these bills… We could lose some kids. It’s tough.”

With an opponent as invasive and alarming as cancer, it’s easy to feel powerless. But people like Kaas and Streit have found their weapons — and their voices — through advocacy.

Devyn Kaas crawls across the floor at the Kaas’ home in Cedar Rapids on Feb. 14. Last year, when she was 7 months old, Devyn was diagnosed with acute myeloid leukemia, an aggressive cancer of the blood and bone marrow. Last month her family learned Devyn is in remission. (Nick Rohlman/The Gazette)

Advocacy starts with education: Learn more about cancer risks and prevention efforts, sources told The Gazette, and have conversations with your loved ones about it. Anyone can contact their local legislators to express their support for or opposition to an issue, and registered voters can vote for legislators who best represent their values and priorities.

Anyone can be a cancer advocate, said the Cancer Support Community, a global nonprofit with 190 locations that deliver free support and navigation services to patients and families.

“Devyn will be a voter one day,” Kaas said. “It matters that our state government cares about (cancer) and does something about it — not just for us, but to prevent it for themselves and their family.”

Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Joel’s journey through osteosarcoma.

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Prior to our son having cancer, I followed two college friends’ stories as both of their sons were fighting leukemia.  It was helpful to know some of the terms and lingo and have a small idea of chemotherapy protocols.

Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
My son had complained of leg pains and we were trying to determine the cause. Growing pains? It was during his basketball season so we thought maybe a muscle strain.  He tripped and was in great pain and his leg swelled up. We knew it was time for x-rays to see what was going on.  The doctor saw a tumor in his femur and we had an appointment at Duke 3 days later.  After more tests, imaging, and a biopsy, it was confirmed to be osteosarcoma.

Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation?  Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
Chemotherapy was hard to see our son endure.  He fell after his first treatment resulting in a painful femur fracture- making his journey more difficult.   In true warrior fashion, he held tight to his faith in God and leaned on Him for strength during the tough times of chemo.

Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena?  We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s.  Overall – how did your child’s journey shape yours and your families new normal?
Joining the cancer club was something we never even thought of- no parent does!  Your life goes from routine and schedules with family time, meal planning and grocery shopping… to doctor appointments, lab checks, watching for fevers, keeping the puke bucket handy, and praying that your kid doesn’t catch the common cold now that his immune system is near zero!   Our son’s journey didn’t follow the usual script they told us about at diagnosis.

He faced many challenges; an angulated fracture from a fall, that was above the tumor.  This led to weeks of immobility in bed with a pain pump resulting in a blood clot under the tumor area.

After the limb salvage surgery, his recovery had several complications to fight through.  Our family was separated because of cancer and then because of COVID.  Our girls were never allowed in the hospital and for several months only one parent was allowed in at a time.

Movies depict scenes of family visiting, playrooms, art, and pet therapy. That was not the case for us!

Recovery after chemotherapy ended was another transition to journey through together.   Our family was surrounded by friends near and far, uplifting our son in prayer.  Our faith carried us through the darkness times we faced in the battle against osteosarcoma.  After treatment, we are healing both physically and mentally, adjusting to life after cancer and chemo.  We have been able to share our story and encourage others in the club.

What point is your journey at now?  What survivorship issues are you facing?  How do you handle the unknowns?
Currently, our son is 6 months NED!!!!   His leg has not healed and he has limited weight bearing on that leg.  He will face another surgery soon to help the healing process.  We don’t know what his future will look like, but hold onto to our faith in God to get us through post treatment just as He did during treatment.

Update: January 2024 – Joel had surgery on his left leg (non cancer leg) to stop the growth plates. The right leg is growing at a slower rate so when it’s time to do the limb lengthening process (18-24 months) the limb difference won’t be as much.

Read more stories about kids with cancer, this ICCD.

Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Ashton’s journey through medulloblastoma.

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Yes, when I was in second grade at a small catholic school in Indiana, my classmate Mikey had brain cancer. I believe his fight lasted around two years and then he passed away. I still remember being so sad and carrying at the wake and his funeral. Although I did not understand cancer, or what was going on it was scary.

Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
It started like any other day. She was getting ready for her second day of school. Then, when she came downstairs, she told me her stomach hurt, then her head hurt, and then she ran and threw up in a bowl. It was then I called my husband to come home and that she needed to go to the ER at Cincinnati Children’s immediately.

I’d had a feeling that something was wrong for a few weeks.

It began when Ashton started coming to me and telling me when she would get off the couch she felt dizzy. I told her “that happens to mommy too, it’s okay.” Then she started getting a lot of headaches. I thought nothing of them until I finally asked her where they hurt. They had become so frequent it was no longer normal. That was when she pointed to the back of her head, right above her spine and told me “here.” I took her to the ER where we were sent to urgent care and my concerns were dismissed as overreacting.

On that second day of school, when she should have been playing and learning with her friends, we found out she had a large, aggressive tumor growing in her cerebellum. And as every cancer story I’ve read goes, that was the moment our lives changed forever.

Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation? Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
We begin radiation on 9/25 for 6 weeks, an ovarian tissue preservation surgery, and chemo therapy for a year.

Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena? We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s. Overall – how did your child’s journey shape yours and your families new normal?
For now though, being thrown into this world is every parent’s worst nightmare.

It’s a club no one wants to join.

It’s heartwrenching and there are no words that can make things better, take away Ashton’s pain, or fast forward time to know how everything will turn out. In Ashton’s short journey there have been days that are terrible, good, and great.

What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?

{From her facebook page}
Every parent understands that innate, supernatural yearning for your kids to be happy and to be able to protect them from whatever it is that could harm, hurt, or damage them. You know, the inexplicable bond that makes it so you know that you will always do whatever it takes for them.

And even though I try and hide from my own thoughts, and I spend very little time on social media anymore, I see pictures of her friends, and wonder, would Ashton be in the picture, if she didn’t have cancer?

And I truly think, yes, yes, she would probably be.

And then the tears come. Every. Single. Day.

Because within a second, that was taken from her. From us.

From even one round of chemo, Ashton’s blood counts have gotten so low, that we are anticipating a blood transfusion any day before her second round of chemo even begins mid-February.

That means more isolation, more hearing I am “bored” and more trying to create the best memories we can from within our home.

It means more time to forget the things she’s learned, the life she used to have, and memories that she doesn’t remember anymore.

She remembers so little, that even when I show pictures or things in real life she has no recollection at all.

It’s so hard.

Read more stories about kids with cancer, this ICCD

Update February 2025:

“Ashton rang the bell on 2/27/25 and we celebrated as a family! Things have been harder, just readjusting to the new normal, lots going on and that isn’t easy. Ashton gets to go back to school so we are very excited for her! She is both nervous, but it’s going to be great for her!”

Every month, ACCO shares stories about children diagnosed with cancer from the parent’s perspective. Today, read about Phillip’s journey through hodgkin’s lymphoma.

Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
Yes, my friends daughter battled leukemia before my son was diagnosed

Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
In December 2018 my kids came home from winter break with colds. My daughter ended up with pneumonia and I figured Phillip was also dealing with pneumonia until the urgent care doctor told me to take him for a CT scan. The radiologist saw something on his chest X-ray and wanted us to follow up. His symptoms were cough, fever, and occasional night sweats which I assumed was his fever breaking. After the CT scan, the doctor told me to go home and they would call me with results… I refused and said I want to know now what is going on with my son.

The doctor left and paged a doctor and 20 minutes later came into our room and said “the oncologist wants to admit Phillip for further testing.” I knew then he had cancer. I just didn’t know what kind.

Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation? Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
Phillip was put into a clinical trial. Phillip received Brentuximab, doxorubicin, vincristine, etoposide, antibiotics and tons of prednisone. On his third inpatient round of chemo he had an anaphylactic reaction to etoposide and was switched to etopophas.

It was the scariest thing I ever saw.

Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena? We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s. Overall – how did your child’s journey shape yours and your families new normal?
There were so many obstacles we faced.

At first, my husband and I were at the hospital all the time.

Once we knew what type of cancer Phillip had my husband seemed to pull away, he was very emotional seeing our son go through all of this and he stopped coming to see Phillip as often while inpatient.

I felt totally alone. I felt like I was left to tackle this without him. My daughter was also affected we put her on an independent study for 6 weeks of her 6th grade year. She was bounced around to two of our family members houses because of the time spent in the hospital consumed us. Phillip’s first hospitalization was 23 days.

Every round of chemo we knew Phillip’s immune system was more fragile so when we were home we did not go anywhere, this journey isolated us from people we love because we didn’t want to risk him becoming ill.

Watching my son go through all of this changed my perspective a lot, I cherish everyday with my kids, I take more pictures, I stopped worrying about saving money and now feel like we need to enjoy ourselves.

I feel like I don’t want to miss anything with my kid’s, so I don’t work as much as I did before we struggle a lot financially but I can’t imagine spending less time with them. Anytime Phillip gets a cold symptoms I start to panic. I developed PTSD and horrible anxiety.

What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
Phillip is celebrating two years of remission currently. Post chemo Phillip has suffered from severe neuropathy, he’s always having pain in his extremities. Phillip also complains of his “heart” hurting.

Every decision we made is not without a possibility of something bad happening down the line.

I don’t handle the unknowns well. I often wonder did I make the right decisions, what if we didn’t do the radiation would he be having these symptoms? I’m constantly in fight or fight mode. I don’t know how to stop these feelings. I do speak to a therapist and have since his treatment started, I feel like that has helped me cope.

Read more stories about kids with cancer, this ICCD.