Abilene eighth grader Ethan Gustin was surprised Friday when Abilene Middle School students and staff gave him a state-calibre sendoff as he prepared to start a six-week regimen of radiation and chemotherapy.
Ethan, the son of Heather and Matt Gustin, had surgery in late December to remove a brain tumor on top of his head. He is starting radiation and then chemo to ensure no cancer cells were left behind.
On Sunday, Ethan and Heather traveled to Kansas City where he started the six-week treatment regimen Monday morning at the University of Kansas Medical Center. He also will have some appointments at Children’s Mercy Hospital.
Friday was Ethan’s last day at school before treatment began. He wondered what was going on when an announcement was made Friday morning that the schedule was going to be a little different.
What he didn’t know was the schedule was altered to make time for a celebration — for him. At the end of the day, Ethan took a lap through the halls while his fellow students lined up and spread out, clapping and holding posters they had made to encourage and cheer him on.
“It was pretty awesome,” said Ethan’s mother Heather. She works as a paraprofessional at AMS. “He has the whole school behind him. I was crying as he was taking his lap around the school.”
“I thought it was pretty cool,” Ethan agreed.
Not only has Abilene Middle School been supportive, so too has the Abilene community.
Recently, Dave’s Guns in Abilene held a fundraiser for Ethan that raised $2,400.
“My brother Dallas (Jenne) said ‘we want to do this raffle,’” Heather said.
The family also is receiving other help. A foundation is footing the bill for Ethan and Heather to stay in a kitchenette-equipped hotel room in Kansas City during the six-week treatment period.
“He is going to do radiation five days a week for six weeks and they also want to put him on a chemo pill for three weeks, doing chemo and radiation at the same time for a three-week period,” Heather explained.
The daily radiation treatments are only expected to last 15 to 20 minutes a day, but the distance between Abilene and Kansas City means it’s not feasible to drive back and forth.
“If the weather cooperates, we will get to come home on the weekends,” she said.
Ethan was diagnosed with pilocytic astrocytoma or brain tumors in 2014. The summer before entering second grade he started having headaches and would vomit for no reason. On July 2, 2014, he had a bad headache and started slurring his words.
On the way to the emergency room he had a seizure. There, a cat scan showed he had too much fluid on the brain.
“They flew us to Kansas City and we were told he has tumors on the back of his brain, blocking where the spinal fluid was supposed to drain,” Heather recalled.
Doctors operated and put in a shunt, followed by chemotherapy to destroy the tumors, but finding the right treatment has been a challenge.
“Ethan has actually had four different types of chemo,” his mother said.
The first round was working, until Ethan developed an allergic reaction and it was stopped.
The second chemo pill did not affect the tumor, wasn’t helping and it was stopped.
The third chemo regimen worked, but it affected his kidney function.
The fourth round also worked, but it started affecting his heart so that also was discontinued.
A new tumor
Still, an appointment in September 2020 was positive — the tumors were shrinking. However, during a Dec. 1 appointment doctors noticed a new tumor growing. An appointment with a neurosurgeon was scheduled, but before it could take place, Ethan’s symptoms began to escalate.
“On Dec. 26, 2020 around 11 in the morning, he said ‘my leg feels jittery’ and then all of a sudden his right — it was like his foot was dragging,” she said.
While in Memorial Hospital’s emergency room, Ethan’s foot started moving involuntarily. “They call those seizures,” Heather said.
The Gustins were sent to Kansas City where they learned the new tumor on top of his head was 10 times larger than it was 25 days earlier and Ethan was operated on Dec. 27 to remove the tumor.
Afterwards, Ethan began physical therapy to get strength back into his leg and foot.
“He’s doing awesome with physical therapy. When he left the hospital he was using a walker. Then he used a cane for a few weeks. Now he’s walking on his own, but still has to wear the brace,” his mother said.
Once this battle is over, the Gustins believe it’s likely the war on pilocytic astrocytoma will continue.
“Ethan actually has a genetic condition, Neurofibromatosis or NF1 for short. People with that genetic condition are prone to tumors. So this will probably be a lifelong journey for us, watching and making sure tumors aren’t growing and hoping new ones aren’t showing up,” Heather said.
After Ethan’s diagnosis, the family learned that Heather had an uncle with the same condition. Luckily, a test found Ethan’s younger brother does not have it.
As for the treatment regimen that began Monday, Ethan said on Friday that he was not anxious about it.
“I’m not worried about radiation,” Ethan said. “But I’m not looking forward to the port thing.”
Doctors planned to install a port in his chest to draw blood and infuse chemotherapy drugs.
Besides the treatments, Ethan will continue with physical therapy while in Kansas City and also plans to do a little schoolwork if he feels up to it.
“His teachers have been great. They said if he’s too tired or too sick don’t worry about it,” Heather said. “We really appreciate all the love and care everyone has shown. It’s been amazing.”
Contact Kathy Hageman at firstname.lastname@example.org.