At 6-year-old Kylie’s birthday party, cancer wasn’t on anyone’s radar. Her mom, Kirsten, noticed she was looking tired and lagging behind her friends a bit as they chattered away on the way into the movie theater, but she didn’t think much of it at the time. Today, though, she remembers it as the very first sign that something ominous was on the horizon.   

Over the next few weeks, the signs began to pile up – Kylie complained of hip and leg pain, and soon she was too sore to walk. Her mom wheeled her into appointment after appointment in a stroller. The pieces of the puzzle came together slowly – and the end picture was starting to look scary.  

“Diminished lung sounds on one side.”  

“Concerning images in the abdomen.”  

“Large mass in abdomen pushing on organs.”  

Finally, the official diagnosis came – Stage 4 alveolar rhabdomyosarcoma, a type of cancer that forms in the soft tissue. The cancer was in her abdomen, lymph nodes, and in the fluid in the lining of her lung.  

“I think it was easier to process the news because it came in bits and pieces… we realized very slowly how serious this was,” Kirsten said. Once the diagnosis was official, things moved much more quickly. Kylie was admitted to the hospital and started chemotherapy – she and her dad, Sean, were away from home and her two younger siblings, Quinn and Cameron, for a month.  

“It was hard to explain to Quinn and Cameron what was going on, so we told them that Kylie was very sick, and they Facetimed so they could still see one another,” Kirsten said. “I don’t think they really got it until Kylie got home and her hair was falling out.”  

Kylie’s Resilience

For several months, large medical equipment allowed Kylie to receive her treatments at home, transforming the family’s house into a hospital room. The bubbly, kind-hearted 6-year-old who loved picking blueberries and chatting with anyone she met was now too tired and nauseous to even eat. Kirsten and Sean say they’ve been so proud of their daughter for overcoming every obstacle put in front of her and keeping a positive attitude and a smile even during the most difficult stretches of treatment.   

One thing that helped Kylie understand what was happening to her was Stacy, a doll who went through cancer treatment right alongside Kylie.   

“Stacy has everything Kylie has,” Kirsten said. “She has a port in her chest so Kylie would know what it looked like, she had an NG tube sticking out of her nose…  I think that’s how she coped with the toughest things. She had to have dressing changes on her port every week, and doing Stacy’s dressing changes really helped build her confidence. I’m really proud of her for getting through that.”  

Kylie Strong

Kylie’s cancer journey has been a rollercoaster, with both incredibly difficult moments and pockets of hope. Frontline treatment was especially hard on her – she endured intense side effects and spent over 100 days inpatient during the first six months. Despite all of that, she fought through with incredible strength. 

Once she transitioned to maintenance chemotherapy, things began to improve. She tolerated the treatment, was able to return to school and regain some sense of normalcy – Kylie could be a kid again.  

Her relapse earlier this year, however, has brought new challenges. The physical toll of chemotherapy has been significant, but just as tough has been the emotional impact – her new normal was suddenly taken away. She’s had to process disappointment and fear of being back in treatment, and it's taken a visible toll on her spirit at times. It’s been heartbreaking, but this now 9-year-old and her family create joyful moments whenever she has the energy—whether it’s little adventures, fun outings, or just quality time together.

Protocols As Old As the Internet

“The lack of progress with new treatments is really frustrating,” Sean said. “We are using protocols that were developed before the internet to treat children in our high-tech society.” 

Only with continued research can we find new options for kids like Kylie – safer treatments with less harmful side effects. Because kids like Kylie deserve to grow up and live full healthy lives.