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.”
For several months, the large medical equipment that allowed Kylie to get her treatments at home transformed the family’s house into a hospital room. The bubbly, kind-hearted 6-year-old who loved blueberry picking 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 cope and understand what was happening to her was Stacey, a doll who went through cancer treatment right alongside Kylie.
“Stacey 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 Stacey’s dressing changes really helped build her confidence. I’m really proud of her for getting through that.”
When Research Barely Keeps Pace
Thankfully, there’s currently a clinical trial testing a new treatment protocol for kids with Kylie’s type of cancer. Kylie wasn’t able to enroll in the trial herself, but her doctors and care team are mirroring the treatment being tested in the trial so she can benefit from the best and latest research. Kylie’s parents are grateful that she’s been able to get these new treatments, but say it’s frustrating that in general, research for kids like Kylie has simply not come far enough. In Kylie’s case, new treatments are just barely keeping pace with her disease. For other kids, research is far behind where it needs to be to save lives.
“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 a high-tech society. Advancements in pediatric cancer medicine and protocols are lacking primarily because funding is focused on other branches of medicine and cancer.”
In May 2023, Kylie’s three-month scans revealed that her treatment is working – a huge relief. But Kirsten says it’s hard to know when to celebrate, and when to keep holding her breath.
“I want to tell myself it’s all going to be all right because there have been so many hard times and we’ve gotten through them all. But it’s hard to know if it’s okay to say that. We’ve made it this far, but you just… you never know.”
Making it Through
Sean and Kirsten say that the three things getting their family through this harrowing journey are trusting their instincts, a supportive community, and the hope that research can deliver a better future for Kylie and other kids like her.
On trusting their instincts: “Don’t be afraid to speak up,” Sean said. “If something seems off, you need to advocate for your child. You know them best, and the doctors will listen to you about your concerns.”
On their community: “The community rallied around Kylie and our family since day one and has provided so much for us throughout her treatment,” Kirsten said. “The online community of cancer families is a valuable resource that can provide comfort when needed and advise on the many difficult decisions that we have had to make throughout treatment.”
On the need for research: “Without funding, we will not find cures,” Sean said. “The protocols for rhabdomyosarcoma were developed decades ago and the overall survival rate is unfortunately not great. We need funding for research and development of new protocols that will lead to better long-term outcomes.”