Desolina was a typical 4-year-old child, mostly sweet with those few epic tantrums. As she approached 5, the tantrums worsened and we often joked what our household would be like during the teen years. She had developed an urge to urinate that seemed ridiculous to us and usually at the most inconvenient times. She had stopped eating as much and seemed to always be full after a few bites. Being our second child, we assumed it was the typical phases of childhood that would eventually pass.
While we were on vacation in August 2015, she developed subtle signs of early puberty. “Mom-gut” was telling me that something wasn’t quite right and so the appointments began. One day she developed excruciating abdominal pain and was unable to walk, but by the time we left the doctor, she was jumping from the table and showing them her light-up shoes. The abdominal x-ray was normal, and a bone age x-ray was showing something was hormonally off. Everything was still pointing to early-onset of puberty, which is more common than an ovarian tumor. As we waited for the endocrinology appointment, her pubertal signs advanced, which led quickly to a lot more bloodwork and pelvic ultrasound which revealed our worst fear, a 14-centimeter ovarian mass.
Surgery was scheduled for November 30th and all teams were extremely cautious about keeping that tumor intact. Pathology confirmed a stage 1A juvenile granulosa cell tumor (JGCT), we had gotten all tumor markers drawn before surgery and we had all the tools to effectively monitor for any recurrence down the road. The surgery went as planned and she is now 3 years cancer free. We very quickly realized the benefits of early detection!
As parents, we struggled with how to teach her about what was happening to her body and why this was such a big deal. Not many 5-year-old children have any idea what an ovary is, let alone what the signs of ovarian cancer are and what to watch out for. We knew that we would need to stay connected to a community who would foster that education and a community who could support her and us if she should ever have a recurrence. That is when we discovered the NOCC.
The first year that we walked in the local Run/Walk, I had to ask for special permission to get her a Survivor shirt in a kid’s size. I knew then that we had connected to the right team. The overwhelming support and love that the organizers and committee members showed for our daughter was unbelievable. After the first walk, we knew that we would be getting involved with the NOCC as an entire family.
Desolina now serves as the chair for the Kid’s Tent committee, Katie (Mom) is serving on the Run/Walk Leadership committee, Ron (Dad) dressed as Tealie O’Hare for the mascot debut at the 2018 Together in TEAL® Pittsburgh Run/Walk, and her siblings, Preston and Adalyn, show up wearing teal in their support at all the events. Desolina enjoys going to local support events to see all her friends. She has made friends who have since passed and has incorporated their memories into the walk events.
She is learning how to talk about her ovarian cancer story in ways that give hope to others and provide education to those who may need the voice of a child to remind them to pay attention to their own bodies. She wants everyone affected by ovarian cancer to have a good support system and can’t think of a better way to do it than to let them know about the National Ovarian Cancer Coalition.
Desolina was diagnosed with JGCT stage 1a ovarian cancer in 2015 when she had just turned 5 years old! We are so thankful that it was caught as early as it could be. We learned very quickly learned the importance of early detection, which is not common with the silence of ovarian cancer.
The NOCC has supported us with every step of her journey. We are lucky to have met wonderful people along the way. We especially miss our friend, and co-captain, Caryn Calarie who passed away in 2020 from ovarian cancer. We are also very lucky to have our newest survivor friend, Meredith Mitstifer, who is a 19-year survivor and serves on the Board of Directors for the NOCC. We were lucky enough to meet her while we were vacationing in Utah this summer, so we really are Everywhere as One this year!
To learn more about Desolina, visit her teams Together in TEAL – Everywhere as ONE page today