Patient Profile: Cali Trepkowski

In March 2015, 8 year old Cali Trepkowski vomited on the way to school. She stayed home from school that day, but she seemed to be fine as the day progressed. A few weeks later she vomited again. This happened three more times so her mom Carrie called the pediatrician who determined it was allergies and put Cali on an allergy medicine. But the vomiting continued. The pediatrician said Cali might be lactose intolerant and advised Carrie to take all dairy out of Cali’s diet. But still Cali vomited. In June the pediatrician said to remove all the sugar from Cali’s diet, but the vomiting continued. By July Cali was vomiting every three days. A visit to the emergency room resulted in a gastric diagnosis and a follow up with a gastroenterologist. The gastroenterologist scheduled Cali for an endoscopy on August 14th, but by August 1st she was sleeping all the time and still vomiting so they went to the ER again and Carrie, who was no longer willing to wait to get results, insisted the endoscopy be performed immediately. The endoscopy didn’t provide answers so the ER doctor scheduled a brain MRI for August 14, the original date for the endoscopy. The morning of the MRI Cali woke up and stumbled into a wall. “Her gait was off,” says Carrie who had become increasingly worried about her daughter. The scan revealed that Cali had a 4.5 by 5 centimeter tumor in the back of her brain right up against the brain stem. Cali had cancer — Medulloblastoma, the most common form of malignant brain tumor in children.

Cali was immediately transported to a hospital in Miami, Florida where her surgeon put a drain in her brain to reduce the swelling. It was the swelling that was causing Cali to vomit. On August 17th Cali’s surgeon was able to remove the entire tumor. It was very literally not a day too soon. The surgeon told Carrie that miracles do happen and if they had waited one more day they would very likely have lost Cali.

Four weeks after surgery Cali underwent proton radiation — which Carrie learned is a type of radiation that causes less tissue damage. She says that with traditional radiation all of Cali’s major organs would have been vulnerable but with proton radiation only the top of her kidneys were affected. Then Cali had nine rounds of chemotherapy over 11 months and more than 20 transfusions. In addition, she began speech, occupational, and physical therapies and therapy with the Special Equestrians that helped Cali recover her strength and helped with her balance.

“She truly is a miracle,” says Carrie of her daughter who has some lasting side effects such as slow processing speed, and abstract learning, attention, and balance issues, but overall has had a remarkable recovery. “In the cancer world we’re the lucky ones,” says Carrie who is all too aware of how easily it could have gone the other way for them. “Once it becomes part of your world you see it everywhere. You have to give hope to others going through it.” she says. “I am very adamant about sharing her story and helping others.” Carrie stresses how important it is for parents and patients to press for answers from their doctors. “I knew something wasn’t right,” she says. “I don’t care what a doctor tells you. demand the testing. Don’t wait. Just because they are doctors doesn’t mean they are all knowing.” In Cali’s case so many of her symptoms were overlooked because the doctors she was seeing were not familiar with her type of cancer and because it doesn’t show up in normal blood work. Carrie now knows that when a child throws up in the morning, if it’s not a flu or other virus, it’s a sign of a brain tumor and she wants other parents to know that too.

Cali is 10 now. She’ll be 11 in February. She has an MRI every three months and while she currently has no evidence of disease, the highest chance of relapse is two years post treatment. After five years with no relapse Cali will be “cured” and will have a brain scan once a year for the rest of her life.

Going forward, Carrie says Cali will see an endocrinologist to address the hormonal side effects that accompany treatment. Carrie, who is very proactive in her daughter’s care, suspects a growth issue. “She hasn’t had much growth in two years,” she says. “Children will stop growing when there’s a brain tumor.” Carrie is concerned that without supplemental growth hormone Cali won’t reach a height of five feet. “Your whole world becomes taking care of your child and finding the best treatment,” she says. “I just want her to feel normal.”

As for the rest of the family, things are starting to become what Carrie calls a new normal. Carrie is extremely dedicated to supporting other families in the cancer community, and raising money for cancer research and the Make a Wish Foundation. She and her husband are both teachers and have three other children who Carrie says “didn’t have a mom” while Cali was undergoing treatment and Carrie was focused on caring for her. “I’m finally starting to be able to enjoy things again and I have these other kids here who need their mom,” says Carrie.“We do things differently now. We are building memories. Making as many memories as we can. We do as much as we can and enjoy it. We enjoy life.”

Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.