Emily’s teacher noticed she seemed to be having some difficulty speaking, so she called Emily’s dad, who took her to the doctor. He thought it might be an allergic reaction to something, but after two days on allergy medication, it wasn’t getting any better. So, two days later, they performed a head CT on the shy 15-year old, to see if they could figure out what might be causing it. Her parents were devastated when the doctor called with the results.

“They said just four words – ‘We found a tumor’ – and then it echoed through my head in disbelief. They couldn’t have said that, she’s my happy run-around girl. She couldn’t have a tumor,” said Wendi, Emily’s mom.

Emily was sent to a larger hospital 486 miles away for more tests. The doctors and oncologist came in and everything seemed to happen all at once. “It was like being on a merry-go-round that wouldn’t stop,” said Wendi. But it was different for Emily, according to Wendi, “I found it kind of funny that she posted online ‘So, they found a tumor. I’m going to Columbus now.’ As if it was no big deal.”

The diagnosis was that Emily had clival chordoma, an extremely rare form of cancer that affects less than 300 people in the United States, according to Wendi’s research. Emily had surgery to remove as much of the tumor as possible. However, as the ligaments in Emily’s neck were wrapped around the tumor, they had to cut them during surgery. Because of the location of it, Emily’s vocal chords have been affected, and her voice is still a little raspy. It will be quite a while before she is able to do one of her favorite things – sing.

“She has a beautiful voice and I miss her singing,” said Wendi. Fortunately, Emily also loves to draw, and she spends hours doing just that. She hopes to study art and drawing more as she goes through school.

Before the surgery, a social worker at the hospital asked them if they had applied for assistance anywhere and Wendi explained they were still dealing with the fact that Emily was sick and had no idea what might be available. That’s when Wendi first heard of Compass To Care.

“When Compass To Care agreed to help us I felt a peace of mind. I didn’t know how to get her to treatment. We didn’t know what to do. Insurance is great, but it doesn’t cover lodging, travel and food. Unfortunately, those expenses don’t stop. They still expect you to get there. We thought we owed her the best possible treatment. We were prepared to sell our house, but thanks to Compass To Care, we don’t have to. Coming home is a big deal for any cancer patient, and for a kid to be able to come home to HER home, it’s huge,” she said.

The youngest of four siblings, and the only one still at home, Emily was nearing the end of her freshman year of high school when all of this happened. After the surgery Wendi said Emily was self-conscious because of her neck, like any teenage girl, and insisted on shopping for scarves everywhere they went.

“I finally told her people were not staring at her neck, they were staring because she is so beautiful. And if anyone is bold enough to ask her about her neck, she should use it as an opportunity to educate them. So now when they ask her, she just says, ‘Ask my mom,’” Wendi explained. Being a nurse, Wendi feels the need to learn as much as she can about clival chordoma, so she will be able to manage the side effects and be there for Emily.

Now, in addition to chemotherapy, Emily is also undergoing several types of therapy. She has physical therapy due to the tumor being located so near her ears, that she has issues with her balance. Her speech therapist has given her exercises to fix the nerve functions in her tongue and throat. She has limited motion of her tongue, and has to use a spoon to move her food to the back of her throat so she can swallow it.

“She can’t eat normal teenage foods such as chips, cookies and pretzels. She can’t mix textures, like salad, because her tongue can’t differentiate between textures. She can have burgers, but only because meat, bread and cheese are similar in texture, but she can’t have any toppings at all,” said Wendi. Emily lost 10 pounds while she was in the hospital because it was just too much work to eat, and since she couldn’t taste it anyway, she just didn’t eat. Since she has been home, Wendi has been helping her eat and she has gained 18 pounds.

“The doctor told us that she needs to gain as much weight as possible to prepare for her upcoming radiation treatments. Because she won’t feel like eating, she will lose weight again,” Wendi explained. Originally, Emily was scheduled for a second surgery, but the doctor, who has not yet met Emily, has had specimens of her tumor sent to him and has been reviewing her case. According to Wendi, he decided that a second surgery “on what little of the tumor is left” would do more harm than good and can be treated with radiation and more chemotherapy.

However, they will have to go about 12 hours away from home for this next round of treatment. Wendi is going with Emily while her husband stays at home to keep working. Wendi has been looking for work in or near the hospital where Emily will be, because they will need the income. “I’ve been applying for any openings they have, and not just in nursing,” she said, “I’ll take pretty much anything, if it means I can stay near Emily.”

Emily’s family has had many conversations among themselves about how much they take for granted. “A lot of humbling has been going on. You take for granted that your child will just grow up, go to college, and get married. Now, not so sure,” Wendi said.  Wendi hopes that sharing their story will someday be a small part of what leads to a cure.

“Please thank whoever and let them know how grateful we are for their help. It does me good to know there are people who are willing to help. We are now a tireless advocate for Compass to Care. We tell everyone about Compass to Care and how you are helping us,” she said.