Photo: Kaylee at Texas Children's Hospital Cancer and Hematology Center
When Kaylee Tolleson first complained of lower abdominal pain, Kelly and John Tolleson, Kaylee’s parents, did what any parent would, took her to an urgent care. To their surprise, when they got there, Kaylee was already feeling better, so the urgent care checked her and diagnosed her with severe constipation.
“Still, Kaylee would come down in the mornings complaining of pain in her lower abdomen, then, after 20-30 min, she would be feeling OK, ready to go to school or continue her day,” Kelly recalled.
This happened every so often. Kelly would treat Kaylee with MiraLAX and the pain would go away. Three months into this pattern, Kelly decided enough was enough and took Kaylee to her pediatrician at Texas Children’s Pediatrics Shadow Creek.
Then, everything changed.
There, Kaylee had an ultrasound, a CT scan and numerous other tests; more than Kelly and John expected. They began getting nervous, pacing the room, curious to find out what was wrong with Kaylee who also developed a low-grade fever, heightening the anxiety and concern.
“We were there for 11 hours. Through the visit, the doctors came in saying they couldn't find her right ovary, and kept mentioning a mass,” Kelly remembered.
The mass turned out to be a 10-centimeter malignant tumor – a rare finding for Kaylee’s age.
Just as in Kaylee's situation, ovarian tumors can present with several non-specific symptoms such as abdominal pain, increasing abdominal size, and abnormal puberty. In children and adolescents, over 90% of detected ovarian tumors are benign. However, Kaylee was diagnosed with a rare type of ovarian cancer which accounts for 3% of all pediatric tumors.
“We were completely shocked, we had never heard of ovarian cancer in young girls. Throughout the day we were prepping her for a possible appendicitis, and now this?” Kelly said.
The Tollesons were in total disbelief as a visit to the emergency center turned out to be a cancerous mass and they were quickly in talks with oncologists and surgeons. Kaylee, a young figure skater, just passed her first U.S. Figure Skating Test the day before, so the Tollesons struggled to believe their daughter had a disease so severe.
“I just could not believe it; we were at the rink all weekend watching her skate and now she has cancer.”
Devastated, the family returned home to prepare for the journey ahead. They researched ovarian cancer, what the diagnosis means for Kaylee and what the treatment options were.
The family initially met with Dr. Jennifer Bercaw-Pratt, Assistant Professor for Obstetrics and Gynecology, to discuss the first step of removing the ovarian tumor to determine the exact type of tumor Kaylee had and also take biopsy's to see if the cancer had spread.
On April 1, 2018, Dr. Bercaw-Pratt, with the help of Dr. Bindi Naik-Mathuria, associate Professor of Surgery and Pediatrics, removed the 10-centimeter tumor and her right ovary, the source of Kaylee’s pain and the family worked toward recovering from surgery, hoping the worst was behind them.
Two weeks later, a biopsy confirmed their worst nightmare. The cancer had spread to Kaylee’s abdominal wall and was now a stage III cancer.
“We almost fell off the chair when Dr. Bercaw-Pratt explained all of this to us. I asked over and over again: Did it really spread? Where did it spread to? Please explain everything again. That was a hard day,” Kelly recalled.
Following the heartbreaking diagnosis, the family met with Dr. Matthew Campbell and Dr. Priya Mahajan, at the Cancer and Hematology Centers to go over Kaylee’s treatment plan and what they found was yet another unexpected turn.
“We were expecting to go to an infusion center for outpatient treatments. But then we learned Kaylee would be in the hospital one week for treatment and home for two weeks to recover, and we would complete four rounds, for a total of 12 weeks,” Kelly said.
This news crushed the Tolleson family, knowing Kaylee would be removed from school, her friends, away from figure skating, and she would have to undergo a grueling healing process.
“Our world was literally tuned upside down, as Dr. Cambell explained the side effects and what the drugs could do to Kaylee’s little body. My husband just kept saying, ‘I wish daddy could take your place,’” Kelly remembered.
On April 23, Kaylee began her chemotherapy treatment at Texas Children's Cancer Center. Since it was Kaylee’s first treatment, the nurses took several precautions to make sure Kaylee was well prepared for chemotherapy.
“The nurses were prepping and checking and watching to make sure Kaylee didn’t have any allergic reactions. I just kept pacing, thinking I was going to pass out. The medicine went in and I just kept watching. The first 10 minutes, then the next hour, then the next; holding my breath to make sure she wasn't developing any side effects,” Kelly recalled.
Kaylee’s treatment was not without challenges. She developed an intense nausea reaction during her first treatment causing her oncologists to adjust her medications. Some days were good and some days took a toll on Kaylee’s physical and emotional health, but she persevered.
“After each treatment, she got better and better. We started to know the nurses; they helped Kaylee stay comfortable. We just really formed a bond with them,” Kelly said.
Kaylee went home after each round to recover for two weeks and that, perhaps, was the hardest part.
“We would go home after treatment and she'd need her nausea medications only for a few days, but she was somewhat back to normal. She was even able to have her friends over in those two weeks, so it was really hard, because we knew we had to be admitted again and knock her back down.”
Photo courtesy, Kelly Tolleson: Kaylee at Texas Children's Hospital Cancer and Hematology Center
While Kaylee fought ovarian cancer, her family made every attempt to draw something positive out of the negative. When Kaylee began to lose her hair, Kelly decided to let Kaylee have a fun, short haircut and dye it pink.
“We had a lot of fun with it. She loved it and was just so proud to wear her pink hair,” Kelly remembered fondly.
After the first round of chemo, Kaylee’s parents knew her hair was getting closer to falling out so Kelly went for another adventurous style: a teal Mohawk, which Kaylee again loved and was proud to show off.
In the midst of her battle, Kaylee did not let go of a passion she has for the weather. During treatment, you could find Kaylee glued to her TV, watching the weather forecast. Soon, word got out and she met one of her favorite chief meteorologists, Travis Herzog, who quickly became a friend and even invited Kaylee to tour the ABC-13 studios.
After three months of hardship and a roller coaster of emotions, the Tolleson family received the news they’d hoped and prayed for: Kaylee was cancer free.
“On July 17, we went in and Dr. Mahajan and Dr. Campbell informed us that her scans were clear and tumor markers were in normal range. We were so thankful to all the doctors for fixing Kaylee, and we immediately asked when we could schedule her bell ringing ceremony. She was skipping down the hallway announcing she is cancer free and I wept because it was such a relief. When we got the diagnosis, it felt like we were never going to get there, but she really did it,” said Kelly as she welled up with emotion.
After Kaylee rang the bell, she joyfully returned home to begin a new chapter as a 9-year-old ovarian cancer survivor. She will continue to check-in with her oncologists every month.
“She is already out to play on her bike, and so happy to start fourth grade which she did on Aug. 14,” Kelly said.
After experiencing what it is like to have a child with cancer go through chemotherapy, Kelly had one message to pass along to all parents: “Listen to your child. You don’t know what chemo is doing to their body, so listen to how they are feeling, talk to them and be as supportive as you can. They are kids and cancer is scary. They are being pumped with drugs, so just be there and reassure them.”
The Tolleson are so grateful for the overwhelming support they received during Kaylee’s journey that they hosted the Kaylee Strong 5K run and walk called the Togetherness Trot because no one fights alone.
Photo courtesy, Kelly Tolleson: Kaylee's Togetherness Trot 5K
“We want to raise awareness for ovarian cancer and hopefully help others,” Kelly said.
Kaylee Strong Fun Run took place on Sept. 7 at the Brazos river park in Sugar Land.
Kaylee will also be walking the runway during the Celebrations of Champions Luncheon and Fashion Show benefiting Texas Children’s Cancer Center on Oct. 11. For more information about the event, click here.