Ben, right, credits Dr. Shustov, left, with saving his life. Photo courtesy of Cushing family

Ben, right, credits Dr. Shustov, left, with saving his life. Photo courtesy of Cushing family

MOD Pizza fundraiser to help Sammamish teen with rare lymphoma

It was the diagnosis that a healthy, 19-year-old freshman at Washington State University never expected to hear.

When Sammamish resident Ben Cushing experienced high fevers and exhaustion for three weeks last December, he assumed it was just a viral infection that he couldn’t shake. The three doctors he visited while home over Christmas told him the same.

“We kept thinking he just needs to eat better,” said Ben’s mom, Alison. She added, “It was always at the back of my mind that something could be wrong, but you have to believe what [the doctors] say.”

Ben’s parents drove him back to Pullman in early January to start the new semester. However, on the first day of classes, Ben experienced extreme pain in his side. On his parents’ advice, Ben immediately went to the emergency room.

When a CT scan told doctors that Ben’s spleen was abormally large, he was taken to Spokane for a bone marrow biopsy. Less than 24 hours after returning home from Pullman, Alison drove back across the mountains to be at her son’s side in Spokane. But after a few days, when doctors were still unable to diagnose Ben’s mysterious illness, the freshman was taken to Swedish Medical Center in Seattle.

It was at Swedish that Ben and his family finally learned the truth. A doctor informed Ben and his father Scott that Ben had hepatosplenic T-cell lymphoma, an extremely rare form of cancer.

“We held each other’s hands, trying to convince each other it was going to be OK,” Ben described. “It felt helpless. I’ve never felt that weak in my life.”

Ben made some of the hardest phone calls he’s ever had to make. Because Alison was ill with the flu and couldn’t be around her son at the hospital, Ben had to tell his mother he had cancer over FaceTime. He also called a dozen of his friends individually to tell them the news.

“It was pretty tough to do,” he said. “I basically had to tell my best friends I could be dying.”

As hard as it was, he thought about how he’d feel hearing that news about a dear friend, and knew that he wanted to tell them himself, rather than having them find out secondhand.

“I wanted my friends to hear it from me,” he said firmly.

Alison began doing research, but was dismayed to find that, because Ben’s form of lymphoma is so rare, there was not much information to be found online.

“We just didn’t know what to do when you get diagnosed with such a rare cancer,” Alison said. “There’s nothing on the internet. We were panicked.”

Then the Cushings found the name of a doctor who specialized in this form of cancer, Dr. Andrei Shustov. They were prepared to travel far for Ben to be treated by Shustov, since, as Alison said, “When your kid is sick, you’ll go anywhere.” However, as luck would have it, Shustov works at Seattle Cancer Care Alliance.

“To find out that Andrei was in Seattle really lifted our spirits up … it was my first hope that everything was going to be OK,” Ben said. He credits Dr. Shustov with saving his life.

“We’re really lucky we live in a community where there’s a doctor who really understands this … Seattle is at the cutting-edge of lymphoma research,” Alison said.

Shustov took on Ben’s case, and on his orders, Ben’s spleen was removed. The average spleen is the size of a human fist — Ben’s spleen was as big as a football. Since then, Ben has undergone five three-week cycles of chemotherapy.

Now in remission, the next step for Ben is a double-cord blood transplant (similar to a bone marrow transplant), which is currently scheduled for June 22 at Children’s Hospital. Ben will remain in the hospital for two months, and after that will move to an apartment near Children’s so that the doctors can keep an eye on him.

Ben is cautiously hopeful about the procedure, but is not excited to spend months in the hospital just as summer is beginning.

“It feels like I’m going to jail,” he noted.

The silver lining during this time has been that the Cushings have seen just how loved they truly are. One of Ben’s fraternity brothers at WSU set up a GoFundMe to help the Cushing family with their expenses; the account has raised $20,000 so far.

“Ben is super positive and he’s got these kids who are super positive around him,” Alison said. “That’s what gets him through it.”

Additionally, Ben’s Sammamish friends designed a green, Livestrong-style rubber bracelet bearing the phrase “Cush it to the limit” in honor of Ben’s last name. All funds raised from selling the bracelets will directly help not only Ben, but any other future T-cell lymphoma patients; the funds will support T-cell lymphoma research at the University of Washington Foundation’s brand new Cush it to the Limit Fund, founded by Ben and his supporters. So far, the bracelets have raised around $15,000 for lymphoma research.

“It’s heartwarming to see people wearing the green bracelets … I realized I have a lot of really good friends,” Ben said. “It’s been pretty humbling to see all those people who love me.”

And you, too, can raise money for the Cush it to the Limit Fund by eating at MOD Pizza in Sammamish on Tuesday, May 23. If you mention Ben’s name, the restaurant will donate 20 percent of your purchase to the Cush it to the Limit fund.

Through all of the upheaval, Ben, his parents and his 23-year-old sister Emily remain optimistic. Ben is already making travel plans “to go somewhere warm” and celebrate once his 100 days of post-transplant care are over. But above all, the lifelong Cougars fan is excited to continue his education at WSU.

“My goal is to be back at school in January,” Ben said. “I don’t even know how to explain how much I want to go back.”

MOD Pizza is located at 22833 NE 8th St., Sammamish. If you’re not a fan of pizza but still want to help, you can donate to the Cush it to the Limit Fund by mailing a check to Cush it to the Limit/Ben Cushing Fund, UW Medicine, c/o Christine Chan Anderson, Box 358045 98195.

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