Sophie Ysursa

“It was the best summer I ever had,” said 13 y/o Sophie, as she recalled the months leading up to her diagnosis. “I was on swim team and achieved some of my best times ever. I did drama camp and had lead roles. I did volleyball clinics. I played soccer. My family went to Six Flags all the time and I got to go to Camp Ondessonk. My left arm had been sore and bothering me since school ended in May, but I really thought I had just been overdoing it or maybe slept on it wrong,” Sophie says. “It seemed like her pain would cycle,” comments Mom, Jessica. She would rest for a few days and it would be fine,” she said. “That is – until one day, she wasn’t.”

Sophie was away at camp and found herself unable to lift her left arm for the archery activities one Saturday. Later that evening at the swim team banquet, she was not able to use her arm at all. On August 1, the Monday immediately following, Jessica made a phone call to Robert Medler, MD from Signature Orthopedics in South County, MO. Dr. Medler had treated Sophie for a broken arm when she was 4 years old and had also treated her brothers (Drew – 19, Dylan – 17 and Ben – 13 and Sophie’s twin brother) for various fractures throughout the years. “Dr. Medler had me bring Sophie in for an x-ray,” said Jessica. “And that was the day life changed.”

“I remember Dr. Medler saying that he saw something there,” said Jessica. “That sounds heavy,” Jessica responded. “It is,” he said. “The next thing he asked me was if we wanted to go to Cardinal Glennon or Children’s,” Jessica said. “Based on some minor fractures and experiences I had gone through with my boys in prior years, I told him our choice was to go to Cardinal Glennon,” said Jessica. “He told me he was happy to hear that because the specialist he felt best able to help Sophie, Dr. David Greenberg, was at Cardinal Glennon. My heart sunk and I held back tears as he handed me Dr. Greenberg’s pamphlet. It explained that Dr. Greenberg specialized in orthopedic oncology. My knees went numb. I felt like I was going to vomit and I fearfully asked Dr. Medler if he thought what he saw on Sophie’s x-ray was cancer. His response was that it might not be – but that he was pretty sure it was.”

Jessica and Sophie began the eerily quiet drive home and by 2:30 pm, they were speaking with Marsha, Dr. Greenberg’s nurse. “She told us to come in Wednesday and that our consult, CT scan and MRI were already scheduled for us,” Jessica said. “It was clear, as fast as things were moving, that Sophie had catapulted to the top of everyone’s priority list. It was crazy that just a few days prior, Sophie and all of her friends were having fun, planning for the start of school. Now we were planning for a biopsy and something called a PET scan. I knew life as we knew it was about to take a huge turn,” Jessica said.

“Sophie’s biopsy confirmed a diagnosis of Osteosarcoma (bone cancer),” Jessica said. The next step was meeting with her oncologist, SLUCare physician Dr. Lauren Draper. Fearful and cautiously optimistic, we all just wanted to know the plan and what her treatment would be like. We also didn’t know if the cancer was JUST in her arm or if was in other parts of her body, too.”  

On August 12, Sophie and her family met with Dr. Draper to discuss her 9 month “roadmap” of therapy. It would include 3 months of upfront chemotherapy, followed by surgery to remove the tumor, followed by an additional 6 months of chemotherapy. PET scans had confirmed that Sophie’s cancer was localized to her left arm. “The fact that her cancer was localized was the only good news that we had. We took opportunity to celebrate that news and we all went to Shake Shack,” Jessica laughs.

Less than one week later, on August 17, Sophie had the bittersweet celebration of her first day of school. She and Dad, Tom entered the school together and talked with Sophie’s class about her diagnosis and treatment. This was the first of what would be many “non-traditional” class days for Sophie throughout the rest of the school year. In fact, she was scheduled to be hospitalized for her first chemotherapy treatments just two days later. “In the first several weeks, our goal was to keep her in a positive mind frame,” Jessica commented. “We needed her strong. We needed her healthy. We needed her to learn to fight like hell.”

On August 19, Sophie had surgery to place her implanted port and was admitted to the 4^th floor inpatient hematology-oncology unit (4 North) to receive her first chemotherapy treatments through the weekend. She tolerated them well despite a loss of appetite and losing almost 10 pounds within a week. There was a two week break until her next treatment. On Septermber 1, Sophie had her first re-admission for fever and low blood counts. It was a brief stay for some IV fluids and antibiotics; however it was evident to Jessica that some life adjustments might need to be made. Jessica left her job as a middle school reading specialist shortly after the beginning of the school year. “I was worried about Sophie’s weakened immune system and I was the logical parent between my husband and I to assume the role of Sophie’s primary caregiver,” Jessica said.

Throughout September and October, Sophie spent her time between admissions doing homework, some art therapy, taking bubble baths, playing UNO and solitaire, having movie nights, requesting Door Dash deliveries and watching her brother, Dylan play soccer with Althoff High School. Dylan’s team made Sophie a soccer manager as they made a run for the state playoffs. This was a welcome and perfect distraction for Sophie, giving her something positive to focus her attention to other than her cancer. She got to spend time on the bench with players when she could be there in person and stream their games from the hospital or home when she couldn’t. In mid-late October, talk of Sophie’s upcoming surgery began. She had a PET scan ad MRI for planning purposes and her surgery was scheduled for November 3. “I remember those talks with Dr. Greenberg being really hard.” Sophie recalled. “He reminded me of all of the risks, how I wouldn’t be able to do this or that, how my arm wouldn’t ever work or be the same again,” said Sophie. “It was very scary talk,” she recalled. “Initially, I had accepted my cancer diagnosis thinking life might only really change for this next year. But those talks before surgery made it sink in a little deeper that I was losing function and possibilities that I’d never get back,” Sophie said.

Sophie’s surgery was November 3. Her tumor was removed with clear margins and her post-operative recovery was smooth. She had her stiches removed on November 18 and her chemotherapy treatments were scheduled to start back on November 25 to continue for 6 more months. During her 18 days at home recovering from surgery, Sophie went to school, had a sleepover, enjoyed a night out seeing Frozen at the Fox Theater, and enjoyed Thanksgiving with her family.

“Chemo started back late November and we were blessed to avoid hospital admissions during the major holidays,” said Jessica. “We had a short admission during the first week in December which had us there during the hospital’s Light Up Glennon event. Some of Sophie’s friends came out and waved to her from the lawn! We were also at the hospital for a short time the week between Christmas and New Year’s Eve. Nelly actually visited the hospital during that week, so Sophie thought that was pretty amazing even though she had to be in the hospital. Even though our holidays were a bit different this year, the hospital strangely feels like home. This is the battle we didn’t want to fight. This is the new life we didn’t want. This is the sickness for our daughter we couldn’t fix. But I’m so thankful for the pep talks at night, door dash when the cafeteria closes at 7 pm, and our circle of friends that help us to recharge,” said Jessica. “The nurses on 4 North and in Costas treat Sophie like family,” commented Dad, Tom. “That family feeling is something I really appreciate about Glennon. One of Sophie’s nurses in The Costas Center was instrumental in helping Sophie through some really rough spots,” Tom said. “Jess is the definition of perfection,” said Sophie. “I was scared to death to have my port accessed when I first started my treatments. I had never felt so vulnerable before – having to get this needle poked into my chest! I was so anxious that I would cry and scream and grab her hand before she could access me. This went on for weeks and Jess NEVER got upset with me. Not one time. She just listened, was so patient and she just worked with me talking me through it until we figured it out. I knew I could trust Jess. And now, because of her, something that was such a huge fear of mine is something that is quick and easy. That’s huge when there’s so many other things that you can’t really control,” Sophie said.

Throughout January/February 2023, Sophie continued her chemo regimen. She had some ups and downs in January with typhylitis (an intestinal infection) and also requiring a nasogastric tube for supplemental nutrition. February was a bit brighter as she got to attend a Superbowl party, her class Valentine’s Day party, and celebrate her Confirmation. She also found out she was approved for a Make-A-Wish and was selected to be the patient champion for Cardinal Glennon’s 2023 Glennon Card Campaign. Her final chemotherapy hospital admission is scheduled for April 4 and she will have scans in late April.

To celebrate the milestone of completing her treatment protocol, Sophie is planning a special kind of party. “I’m just Sophie and doing Sophie things,” Sophie comments. I know it might seem weird to some people, but I am planning a funeral party for Jeffrey, my tumor. It’s time to lay him to rest,” Sophie says. I want Dr. Draper and all of my nurses to attend. We’ll officially say goodbye to him, and celebrate that I finished what we started,” Sophie says.

“It’s been such a roller coaster and crazy to be marking off this milestone of her therapy,” says Jessica. We are so proud of her, and celebrating what we have come from and where we are at right now – just the way Sophie wants to… in her Sophie way. We are thankful for all of her amazing care and trust that she is in the best hands moving forward.”