All-Star Ella with a birthday sash and a birthday crown standing in front of a Sweet 16 banner on the door

All-Star Ella

Diagnosis: Medulloblastoma

Ella was a normal high school freshman, playing soccer and volleyball, hanging with her best friend when she could. Her parents Kim and Roy along with her older sister and younger brother kept busy as well.

Busy they were, until Ella started having headaches, feeling very tired, throwing up a lot, and getting bouts of double vision and loss of balance. Her mom took her to see several doctors, one of whom recommended an eye doctor. Over the holidays things escalated and on January 2nd, Ella and her parents went the Emergency Room.

Once at the ER, the person who checked them in alluded to Ella needing a CT scan, which was something that doctors before now had never suggested. Ella had the CT scan and the family waited. Although, not for long. Soon the doctor came back and said that Ella had a brain tumor and that she needed surgery right away.

“In November, her doctor had told me, just so you know, it’s not a brain tumor. This diagnosis hadn’t even crossed my mind,” Kim said. “We felt that it was something more; however, we didn’t imagine for a moment that it was cancer.”

Hours later, Ella was in the operating room having brain surgery. It was all a whirlwind. “The doctor that could remove the tumor happened to be there for the week,” explained Kim. “We felt blessed that he was ready to operate right away.”

As for Ella, she was pretty shocked as well. “I really didn’t know what was going on,” said Ella. “I was just going with the flow. It was crazy.” As her and her parents navigated this news and prepared for surgery, her siblings were back home with their grandparents, who thankfully live right next door.

“The surgery took about seven hours, and we anxiously waited for the outcome,” said Kim. “After the procedure, the doctor was adamant that he had gotten the whole tumor which came as a big relief.”

Although the tumor was removed, it took a couple of days to find out the actual diagnosis. Ella was diagnosed with medulloblastoma, a rare and aggressive type of brain cancer. There are only 400 cases nationwide and it typically presents in children much younger than Ella. Because of the care needed, Ella’s family would need to travel three hours away to Milwaukee to continue treatment. It was decided that her mom would go to treatment with her and her dad would stay home to work as a manager for a construction company 90 minutes from their home while taking care of Ella’s other two siblings.

Once in Milwaukee, Kim and Ella met the medical team and started six months of chemotherapy and radiation. This would require them to stay in Milwaukee for an entire week at a time, once a month.

“She was sick the entire time,” explained Kim. “She threw up several times a day for an entire year and needed to use a feeding tube for a year and a half. Ella lost about 40 pounds during this time.”

Ella remained positive despite the unknowns. “I didn’t know what to think,” said Ella. “I guess I had nothing better to do with the year because of Covid, at least I wasn’t missing out on social events. I went to school as often as I could and just went with the flow of everything as best I could. One time during my three-week stay, my family brought my dog Bear into the basement of the hospital so I could see him. That really helped.”

In between Ella’s week-long stays in Milwaukee, she had her blood drawn locally twice a week. It all made for a lot of appointments over a long period of time. Kim stayed in the hospital with her most of the time, as well as at the home of one of her mom’s friends for a few nights.

Kim, who worked as a substitute teacher and was long term subbing, had a decision to make. “I managed to work just one day,” said Kim. “Then I had to quit. I immediately realized that I just couldn’t think about anything else except beating this diagnosis.”

Despite her diagnosis and all that came along with treatment, Ella was determined to go to school whenever she could. They would get back on a Thursday night from treatments, and she would try to go on a Friday. Even though, it wasn’t uncommon that she would end up back home after getting sick. She was diligent about doing homework online and her teachers were helpful in her situation. She also had a tutor in Milwaukee who helped her with math each week.

Ella’s treatment ended in September 2021. The adjustment back to life outside of treatment proved to have its own set of challenges. Ella had to learn to walk again and although she was encouraged through the great support from her then soccer coach and physical therapist, she still felt disappointed in her abilities post treatment.

When asked about her lowest point, Ella explained that it was going back to school, because nobody would talk to her anymore.

“I would get bullied a lot and nobody liked me anymore. I had to wear an eye patch for 9 months and some kids would call me pirate girl,” Ella said. Ella had eye surgery in November of 2021, which helped take away her double vision.

“Most people thought that, after the treatment, I would be all better and normal,” she said, “They didn’t understand when that wasn’t the case.”

Ella found comfort in her mom’s friends, however. “I liked my mom’s friends though, they helped me a lot, and I had some fun,” Ella continued.

The family also received support in other ways from their community and that’s how they found Pinky Swear Foundation. “We had a lot of people step up and help us with meals, gifts and gift cards. We felt very blessed,” said Kim. “Our social worker helped us with the Orange Envelope process.”

Ella loved receiving the Orange Envelope the most because she loves unpacking things. The family also received an All-Star Fund for a car payment during this time.

“Pinky Swear understands that in times like this, families have so many other things to worry about,” explained Kim. “We didn’t want to think about things like car payments and the gift allowed us to focus more on Ella. It was very extremely nice to receive these gifts!”

Pinky Swear Foundation also provides All-Star Experiences where college students who are a part of their local Pinky Swear Pack virtually interact with All-Star kiddos and their families virtually. Ella participated in a Cupcake Wars and Spa Replenish experience from a Pack from New York.

“What you are doing is wonderful,” said Kim. “Ella tried to be involved in other cancer non-profits, but most things are geared towards younger children or kids still in treatment. There aren’t many things we have found for her once treatment has ended; even though she could still use the support. Her social life and life in general have changed forever and Pinky Swear gets that. Thank you for all you do.”

As for current life for Ella, they have improved for her at school, but she still feels the weight of her experience through stress and anxiety.

“People don’t understand,” she said. “Even my friends. They are not friends outside of school and they don’t understand the process. I don’t want to explain what I’m going through, it’s just too hard.”

Ella has devoted her time and energy to those who do understand and gives back to that community. She spends her free time volunteering at the clinic, refilling the nurse’s station masks, gowns, wipes, and catheters. She also works at an elderly facility on weekends, spending time with seniors with dementia and memory loss, and would like to be a geriatric nurse one day.

Despite these struggles, Ella’s outlook is very good, and her family remains positive. “There will be time. Time to heal, time to recover, time to have fun, and most importantly, time to just be a teenager again,” said Kim. “We are very grateful.”