“People really don’t understand cancer if you don’t have a relative or if you don’t know anybody who’s had it,” said Alyiah Gusoskey.
The eighth grader at Senn-Thomas Middle School knows better than most; she was diagnosed with acute lymphoblastic leukemia (ALL) in fifth grade.
It wasn’t a reality she was expecting.
A few weeks before her diagnosis, she noticed some changes with her health.
“I started gaining bruises easily,” Crystal City resident Gusoskey said. “I couldn’t read anything because the blood vessels in my eyes were popping. I couldn’t run. I couldn’t be active, and I also had no appetite.”
In addition to bruising, Gusoskey was experiencing severe bloody noses.
Her family was noticing the changes in her health and grew concerned.
Gusoskey’s mom, Meagan Kelly, recalled, “Around her birthday, she was complaining of pains in her legs, and I just put it off, (thinking it was) growing pains or something like that.”
Kelly said she would help Gusoskey by rubbing her legs until the pain would subside.
Initially, Kelly thought Gusoskey’s symptoms could also be related to low iron or anemia, which runs in their family.
Because of the bruising and fatigue, school officials grew concerned that Gusoskey was being abused at home, Kelly said.
“I appreciate their vigilance and everything, but initially (school staff) were concerned of abuse,” Kelly said. “(Staff would) see her at lunch laying down not wanting to eat, and she had bruises on her arms, and she just (was not) being her normal self.”
Gusoskey said her symptoms became so unbearable that she was taken to SSM Health St. Clare Hospital in Fenton.
“There were a lot of signs that something was very wrong with me, so we went to the hospital,” Gusoskey said. “I waited a couple hours. A nurse then came in, and she put an IV in me, they pulled some blood, and I fell asleep for a while because I was so exhausted.”
After the tests were run, Gusoskey said a doctor pushed on her stomach, and then she was transferred to Cardinal Glennon Children’s Hospital in St. Louis.
The Cardinal Glennon doctors later told her she had cancer in her blood.
“It was a very life-changing in the moment,” Gusoskey said.
Dr. Syed Mojiz Ul Hasan, who specializes in oncology and hematology, said this type of cancer is most common in children.
“It is a very acute, very aggressive kind of blood cancer, and what it does to the body is it causes bone marrow changes, and it can cause significant fatigue, tiredness, low energy levels,” Hasan said. “These blood cancers are unique in a sense that they are in blood, and blood is virtually everywhere in your body, so it does not have as much of like a specific organ. But since it is blood and lymph node related cancer, people can have lymph node enlargement as well.”
Once a doctor told Kelly of her daughter’s cancer diagnosis, she said the information was hard to grasp.
“I think I was in shock for probably the first six months,” Kelly said. “They came in and gave me this giant book, and were like, ‘Here you go. Treatment is 2 1/2 years. You’re going to agree, or she’ll die in six months.’”
After she was first diagnosed, Gusoskey said she rarely left the hospital.
When children are first diagnosed with this disease, Hasan said, they are required to stay in the hospital anywhere between four to eight weeks.
“We do additional testing, things like bone marrow biopsy, trying to evaluate what is the extent of the disease and the mutation,” he said. “Generally speaking, it is an induction form of chemotherapy…and then we see the response between bone marrow biopsies.”
After this, patients typically need around one to two years of treatment with chemotherapy.
“(Chemo) is done as an outpatient, (with) some kind of a pill form of therapy where they are seeing their oncologist on a regular basis,” Hasan said.
Gusoskey took chemotherapy by mouth once a day. Along with chemo, she also had to have a peripherally inserted central catheter (PICC) along with many blood transfusions.
During the treatment, Senn-Thomas Middle School staff were instrumental in helping Gusoskey return to school.
Tiffany Bungenstock, a counselor at Senn-Thomas Middle School in the Dunklin R-5 School District, said she got to know Gusoskey once she was transitioning to sixth grade. She helped analyze what school would be like for Gusoskey while she was undergoing treatment.
“We would have family meetings with the administration involved,” Bungenstock said. “What the best game plan going forward (was), and we would meet frequently to discuss where she’s at.”
Bungenstock said Gusoskey is academically strong and would worry if she did not complete assignments in a timely manner even while she was undergoing treatment.
“(Gusoskey) worries about her grades tremendously,” Kelly said.
Bungenstock said she was thankful for the supportive administrative team while working with Gusoskey along with receiving advice from counselors at other districts.
“We have an organization that is Jefferson County focused, but then you also have a platform statewide or national that you lean on with other counselors,” she said. “If you say, ‘Hey, if you’ve experienced this, how are you supporting your child that is going through this?’”
At the end of December, Gusoskey officially rang the bell, celebrating that she had finally beaten cancer.
It took a little bit of time for the feelings to set in for her, she recalled.
“I really didn’t feel anything until I left,” she said. “But when I was in the car, I was thinking, ‘I did it, it’s done. I don’t have to do this anymore. I don’t have to take chemo.’ It was crazy.”
A surprise, special celebration
Once the news of Gusoskey’s bell ringing reached Bungenstock, she knew she had to plan something special.
“(Gusoskey) told me ahead of time it was coming and then had gotten sick after she got to ring the bell, so I hadn’t seen her yet,” she said.
Bungenstock said she had Kim Propst, Senn-Thomas secretary, send an email out to see if anyone had a bell she could use for this occasion.
“I need a bell; we have to replicate this,” she said.
Gusoskey said she had a feeling Bungenstock was planning something.
“I was nervous, but I was pretty excited. I got chocolate roses and stuff (to do) nails,” Gusoskey said.
School staff and faculty gathered around Gusoskey and cheered for her battle being over.
She said her transition back to normal schooling hasn’t been too difficult. Generally, Gusoskey enjoys school and seeing her friends.
“She’s always been an amazing student,” Kelly said. “I think that’s why it was a little rough on her in the beginning…But she always (had) straight As and a great relationship with the teachers and kids at school.”
Once Gusoskey reaches the five-year mark of being cancer-free, she will officially be considered cured.
Coincidentally, that will be her senior year of high school.