This past March, the pain in five-year old Jamela’s leg became unbearable for her. She and her mother, Tangela, made repeated trips to the doctor over the course of a week, but they could find nothing wrong.

“They didn’t run any tests, really. They eventually said that maybe it was behavioral, like she wanted attention or something. I didn’t think so because she never let up. She was constantly saying, ‘My leg, my leg,’” Tangela said.

Toward the end of that first week, Jamela’s teacher noticed Jamela having some leg pain. The teacher thought maybe her leg had cramped up while playing on the floor, and called Tangela. After this, Tangela decided that maybe her ballet classes were becoming too much for Jamela, and decided she should take a break for a little while. But that didn’t help and Jamela continued to complain about the pain.

That weekend, while celebrating Easter Sunday with her extended family, Jamela got down off her chair and began screaming about how her legs hurt. Without thinking twice, Tangela drove her to the emergency room. But once again, the ER personnel couldn’t figure out what was causing it.

“The nurse came in and said they would probably do an MRI, but then the doctor came in and said that’s not necessary. I was getting frustrated,” Tangela said. On Monday, they made yet another trip to Jamela’s pediatrician. At this point, they still hadn’t done an MRI and hadn’t come up with any reason for the pain. On Tuesday, the teacher called Tangela and asked her to come pick up Jamela because she was in so much pain.

“So I called the doctor again. This time they said her doctor was on vacation and made us an appointment with a different doctor. She said yeah, there is definitely something going on and asked me to take her back to the ER. She said she will tell them to keep her there and do some tests,” Tangela explained.

Finally, about a month after her first trip to the doctor, Jamela had her very first MRI, and a tumor was discovered. She was hospitalized over the weekend while the doctors ran more tests on the tumor. Jamela was diagnosed with a type of brain tumor called an atypical teratoid rhabdoid tumor, or ATRT for short. These fast-growing malignant tumors are extremely rare and mainly affect children under age 3.

“When they gave us the diagnosis, they asked if I would mind her being transferred to Lurie (Children’s Hospital) because they have better resources for this. About a week later – everything happened really fast – Jamela had surgery to try to remove it from her spinal cord,” Tangela recalled.

The doctors at Lurie told her they couldn’t tell how long the tumor had been there. And although ATRT tumors are usually very difficult to remove due to being located so close to the brain, Jamela’s surgery went smoothly.

Tangela then learned that Jamela would need to make weekly trips to Lurie for chemotherapy for about a year. Additionally, once a month she would be hospitalized for 3-4 days at a time while undergoing in-patient chemo. Also, because of the high-grade cancer, Jamela would need proton radiation for six weeks.

This meant Tangela, whose work hours had already been severely limited because of this, would need to drive Jamela 28 miles to the Northwestern Proton Center almost every day. And make the return trip home, all the while caring for Jamela and her 3 siblings. Fortunately, the social worker at Lurie knew about Compass To Care and helped Tangela apply for assistance with gasoline and parking.

“Compass to Care has been a great big help. Without it, we’d be on the bus a lot – parking is so much. Now I don’t have to worry about who’s going to take us. I’m not working as much as I was, so your help means a lot,” Tangela said.

And Jamela? She’s finished her proton radiation and her doctor’s say she is “over the big hump” and making a little progress. Jamela only has six different medications right now. She still has to get a new MRI every three months, but her chemo appointments are now only every two weeks and she doesn’t have to stay overnight. But she has to keep traveling to chemo until April of 2017.

“She’s more aware of what’s going on and a little upset that she still has to go to the doctor. She hates seeing them come with the medicine. It used to not be a problem, but now she’s just over it, and she fights it,” Tangela explained, and then added, “Compass to Care is a great organization. It’s a great thing to know that this type of organization exists! It’s a great thing for families. Thank you!”