Lucy’s mom, Kaelynn, shares their story in her own words;
My daughter is Lucille Dusosky and she was diagnosed with alveolar rhabdomyosarcoma (ARMS) on February 17th 2023. What started out as a bump was misdiagnosed by a hospital, so I continued to call for an appointment to see if we could get her in sooner, feeling like something more was wrong. On the 17th we received the call letting us know she has cancer. We had lots of upcoming scans and appointments. We had no idea what to expect, Lucy was crying saying she didn’t want to die and being put in the unknown as parent was one of the harder situations.
Once we got a plan in place with her team with Dr. Rawwas, we waited to hear when she could have her port placed and her first chemotherapy on February 25th 2023. After that she was faced with some personal choices on what to do with her hair, she decided she wanted to get it over with and shave her head!
This whole time we’ve been blown away with her understanding and knowledge of her care team and her plan along with meds. We faced nausea, possible feeding tube placement, med changes, fevers throughout the start of her journey.
In April we went down to Rochester to do radiation with Dr. Laack, once again we had no idea what to expect. It was tough and lonely for the both of us, even though it wasn’t far from home. At first, we tried to treat it like a vacation, but that wore off. She eventually got through the 6 weeks and was able to ring that bell.
We made our way back home. One of the first things we did when we got back was go to the Rein in Sarcoma Party in the Park at Como Park. Honestly, I’ve never felt more welcomed and or understood. We made some friends and have kept in touch.
The last leg of her chemo journey has been the toughest, she’s dealing with radiation recall and experiencing GI bleeds. Seeing a child get sick and vomit blood on top of everything else was traumatic for both of us.
Something I’ve learned throughout this is to never stop asking questions, making calls, sending messages to the care teams. They will end up thanking you for all of that and advocating for Lucy. Her last chemo after 42 weeks was November 27, 2023 and it is hard to explain the feeling. It’s relieving, but next comes scans and the possible fear of this coming back. For everything that Lucy has been through, I’m so proud to be her mother and she put in the work with me by her side!