Yohe Family Story

The Maddie Yohe Family

Maddie Yohe’s journey with cancer began in 2018, around when “everybody had that cold with a cough that wouldn’t go away,” Maddie’s mom, Sarah, said. At the beginning of February of that year the Yohe’s thought this cough of Maddie’s was a little different.

One morning, Maddie woke up with an extremely swollen lymph node in her neck. Because of this, the Yohes took her to the doctor, who scheduled an ultrasound and an x-ray for Maddie, both of which came back abnormal. However, the Yohe’s insurance wouldn’t cover an MRI, so the doctor sent Maddie to see an Ear, Nose, and Throat (ENT) specialist who would hopefully put Maddie on an antibiotic that would clear the issue. But the specialist never scheduled the appointment.

Suddenly, Maddie began complaining that her leg hurt. The doctor did another x-ray on her leg but didn’t find anything abnormal. At the beginning of March, the Yohe’s went to visit some family in Bedford, Pennsylvania. That day, Maddie’s leg pain was so bad that she couldn’t move or walk. They left Bedford early and went back to their local emergency room, but that emergency room is so small that they don’t have an MRI machine on the weekends. Because of this, they ordered another x-ray and concluded that Maddie just pinched her sciatic nerve. They prescribed alternating doses of Tylenol and Motrin.

The next day, Maddie began running a fever. She couldn’t move and didn’t eat dinner. They took her to the emergency room again, and they had the MRI machine that day.

The doctor told Sarah that he didn’t know what it was yet, but he could tell them they’d be driving Maddie to Penn State Health Children’s Hospital in Hershey that night. He also told her that when looking at the MRI of Maddie’s leg, it looked like what they saw in a leukemia patient.

When Maddie, Sarah, and her dad arrived at the hospital in Hershey, they had nurses drawing blood, checking vitals, and people flying in and out of Maddie’s hospital room without telling them anything. Sarah and Maddie’s dad had been up for almost 36 hours at this point. Sarah sat in a hospital chair in Maddie’s room to rest for a little while, and when she woke up there were eight doctors in the room.

“There’s a mass in your daughter’s chest,” they said. “We need to biopsy it.”

Sarah recalled blocking out the word “cancer.” “There’s no way my kid has cancer, it can’t be possible,” she said. “She’s nine, she had a cough and a sore leg. There’s no way this is cancer.”

The hospital moved Maddie to the hematology/oncology floor, where the doctor who became Maddie’s primary care oncologist said they wanted to biopsy Maddie’s lymph node as well.

However, they couldn’t put her to sleep while doing it. What they didn’t explain to Maddie’s parents was that the mass in Maddie’s chest was so big it had taken up her entire right lung.

For those first few days in the hospital, Maddie got several biopsies, blood work done, and other “crazy tests,” Sarah said. The doctors couldn’t figure out what was wrong; Maddie’s blood work and symptoms weren’t lining up to be the same thing. They ruled out lymphoma and leukemia, but were stuck between neuroblastoma, which she was statistically too old for, and neuroendocrine carcinoma, which she was statistically too young and the wrong gender for.

Three weeks into Maddie’s hospital stay, her symptoms were only getting worse. The doctors still didn’t know what she had; all they knew was that it was cancer. They decided to start a steroid, and then, because they couldn’t hold off anymore, started a round of chemotherapy on March 23. It was a three-day dose of chemo, and Maddie received a dose each day from the 23rd to the 25th. By the 27th, she was up and walking around again.

On March 28th, Maddie was participating in some of the activities the playroom on the floor was offering when the doctor came into Maddie’s room with just her parents inside. Maddie had high grade neuroendocrine carcinoma with an undetermined starting point.

Her prognosis was a year if she responded to the treatment. No one with her type of cancer at the stage Maddie had it had lived past a year. In Maddie’s PET scan, they found cancer in every long bone in her body, in her lungs, in the material between her brain and skull, and in her spine.

At the beginning of April 2018, Maddie could go home. After that, they were back in the hospital every three weeks for six weeks of inpatient chemo, with PET scans occurring after every two cycles of chemo. She responded well to the treatment. By the end of the sixth cycle of chemo, her PET scan showed no signs of disease. In July, right before her birthday, she was cleared. However, because of the aggressiveness of neuroendocrine carcinoma, she would have to have another scan every three months.

In October, when Maddie went in for her PET scan, her lymph nodes lit up. The doctors said that she could have been coughing that day or had something else that irritated that area, which could’ve caused the PET scan to show signs of cancer. They agreed to move up the next PET scan to December just to be sure.

Sarah remembers calling the hospital a few days before that December PET scan to say something wasn’t right with Maddie. She was weak, always tired, and complaining of pain. On December 5, 2018, they went in for her PET scan. This time, the scan showed that the cancer was back and in Maddie’s lung again.

“All I remember was just being angry. This isn’t fair,” Sarah said. “She was the exception, we got the miracle, why does she have to do it again?”

When her parents told Maddie the cancer was back, she had to decide which chemo option she wanted. She could go to the hospital every three weeks again to receive the chemo through an IV, or she could take a pill. She put her choices in a hat and picked out the IV option.

For this chemo, Maddie’s doctors decided that it was going to be long-term. Even after a clear scan, they were going to keep giving it to her as long as her body could handle it. They altered the schedule from receiving chemo every three weeks to every four to give Maddie’s body more of a break between rounds.

Maddie lasted on this chemo for 18 months. She took it inpatient through IV infusion, at home through IV infusion, and at home in the form of a pill. After 18 months, her body started getting toxemia, a blood poisoning from toxins. She had to stop chemo.

After she stopped receiving chemo, her cancer came back again by July 2020. This time, it was in her brain. When she received radiation for it, her brain swelled so much she had to have a third of her skull removed to give her brain more space. They took her skull cap off a week before her 12th birthday.

Maddie miraculously recovered, and in August she was sent to rehab. In September, she began chemo again, and everything was going fine, besides the fact that she hated taking it.

“We literally had to bribe her,” Sarah said. “I cannot tell you how many stuffed animals I bought.”

This chemo, Doxorubicin, is often called the “red devil chemo.” It turns every part of the body red. Maddie’s face would become flushed, it could damage your heart, and cause other serious side effects.

While Maddie was taking this chemo, she was able to have her skull cap replaced in January. However, she developed a fluid buildup that couldn’t be released, so they had to put a shunt in. After that, she couldn’t receive chemo for seven weeks.

Within that time, the cancer had come back in her brain everywhere. At this point, Maddie had run out of options. It would be too dangerous to radiate her brain again, there weren’t any other chemo options, and her body had become used to the chemo she had already taken. At the beginning of June 2021, Maddie came home on hospice. She passed away on June 26, 2021.

To keep Maddie’s memory alive, the Yohes go to Applebee’s on her birthday every year for lunch, and then visit her resting place with cupcakes so they can celebrate together. At the beginning of July, Sarah usually does a toy drive to donate to the hospital. She donates in the summer because hospitals are usually overrun with donations during the holidays, and Maddie had a summer birthday.

Every year, Sarah lets her kids pick out a Christmas ornament for the tree so they can have ornaments for their tree when they move out. With this tradition, you can see how their tastes and interests evolve over the years. Sarah still picks out an ornament for Maddie every year to hang on the tree.

Maddie’s dad had pillows and blankets made from Maddie’s favorite clothes. He made Sarah a pillow with Maddie’s “I solemnly swear I’m up to no good” T-shirt, with fabric from one of Maddie’s favorite pair of fleece pajama pants. She also has a teddy bear made from Maddie’s shirts with some fabric from a beanie she used to wear. They keep these things around the house to keep Maddie with them every day.

One of Maddie’s favorite movies was A Christmas Kiss, a Hallmark-y Christmas movie. Every holiday season, her and Sarah would watch it as a tradition. Now, Sarah watches it by herself while wrapped in a blanket with her coffee. It’s another tradition that she’ll keep for the rest of her life, she said.

She also loved the game hang man. “I think she made up her own rules because she would go and find a random word in a different language,” Sarah said. “She would Google ‘world’s hardest word’ and they would lose every time.”

Maddie was also really into superheroes. She loved Marvel movies and DC TV shows. She watched The Flash, Arrow, and Supergirl religiously. During treatments in the hospital, she would watch Supergirl on her iPad. She asked Sarah one day if they could get matching tattoos. They share a birthday, July 28, so they said they would get it when Maddie turned 18. She wanted The Flash lightning bolt. In 2022, Sarah got the lightning bolt tattoo.

“She probably would’ve changed her mind by 18, but 11-year-old Maddie would love it,” Sarah said.

One of Sarah’s favorite Maddie stories was when Maddie was diagnosed with cancer. She was sitting in the hospital room right as the doctors told her Maddie had cancer, when Maddie walked into the room and said “God, again? She’s such a crybaby. You need to stop crying.”

“She’s going to tell you how it is, whether you like it or not,” Sarah said.

One year, the Yohe’s paired THON org, Apollo, gave them water guns to bring to their event later. The first thing Maddie did upon arrival was soak all of them. Sarah found an old video on her Facebook of Maddie spraying everyone with water. She plans to add that video to Maddie’s celebration of life video that will be shown at THON.

“The pure joy on her face was something that I will forever be grateful for,” Sarah said.

Apollo has made the Yohes feel right at home within the THON community. Each year they host an individual celebration of life for Maddie and have continued the tradition of water gun battles.

“I’m grateful that we were paired with Apollo because Maddie was very stuck in her ways. She was very opinionated and outspoken. She had no qualms about saying, ‘I don’t like you, don’t talk to me,’” Sarah said. “I was nervous getting paired with organization because they’re either going to love her or won’t want to be paired with us. But it was a perfect match.”

The Yohes still attend all the THON events they can, and now Maddie’s younger sister, Emme, has Apollo wrapped around her finger. She loves getting the Apollo members to give her piggyback rides and to dance and play games with her.

Maddie used to make TikTok videos that fully encapsulated her silly, crazy, fun personality. TikTok has since logged her out, but Sarah still has access to some of Maddie’s old videos and likes to watch them when she can.

“I wish that the people who didn’t get to meet her could see the fun crazy videos that have her personality, so that they could have insight into why everybody who has met her talks about her the way we do,” Sarah said.