‘Stop!’ Joshua saying to everything — especially cancer

Published 12:00 am Tuesday, September 2, 2008

At 2 years old, Joshua Berney is just learning to talk and climb onto furniture — but he has already done something amazing at any age: He has beat cancer.

“I don’t know if the fear ever goes away,” said Ginger Berney, Joshua’s mother, “but it has lightened. Every time he gets any minor sickness or acts differently it enters your mind, but we’re working on it. We’re working on just letting him be a little boy now.”

Diagnosed with leukemia at 6 months, Joshua has spent most of his short life fighting a disease he isn’t even old enough to understand.

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When the Berneys took their son in for a checkup in November 2006 believing he had a cold, doctors assured them he would be fine in a few days. When Joshua didn’t get better as quickly as they’d hoped, blood work was done and a life-altering diagnosis was made.

Joshua spent the next months at Blair E. Batson Children’s Hospital at University Medical Center. He underwent tests and surgeries and chemotherapy. He was poked and prodded and observed. He suffered bleeding in his brain that led to clots and then to seizures. There were moments when even the doctors thought he wasn’t going to make it.

But he did.

Joshua has officially been in remission and finished with all treatments since November. He still has monthly office checkups and quarterly bone marrow tests and lumbar punctures, but for the most part he is a normal kid.

The foyer and living room of Joshua’s house are filled with little boy toys, mostly tractors and trains that he loves to share. From time to time he pauses his playing to kiss his mother on the cheek or giggle as he pokes his father in the eye. He giggles a lot.

“He is usually happy and playing,” said Ginger Berney. “Even when we’re at church, he’ll run down front during worship and dance for everybody and they love it because he is a reminder that miracles can happen.”

“We’ve had a lot of firsts since he’s gotten better,” said Ernest Berney, Joshua’s father. “The first time we went to McDonald’s and got a Happy Meal, the first time we took him to Wal-Mart, the first time we took him to a sand volleyball court to let him play. We’re just now getting to do all these things that everybody else gets to do earlier but Joshua never could because he was sick.”

Though both of his parents agree that Joshua is usually in a good mood, both acknowledge trips to the doctor are not fun for anyone.

If you go

Team Joshua’s Stop Cancer Festival will be Saturday from 10 a.m. until 2 p.m. at the New Vision Family Worship Center, 3525 Wisconsin Ave. Tickets are available at the door and are $5 per person or $15 for a family of three or more. The event will feature live music, food and games and proceeds will go to the Leukemia and Lymphoma Society and the Blair E. Batson Children’s Cancer Clinic.

“When he was going all the time, he’d run in and hug all the doctors and nurses,” said Ginger Berney. “Now that he’s only going once a month he has been able to see what life is like when he doesn’t have to go and he starts crying as soon as we walk in the door. He’s even sensitive to rooms that look like doctors’ offices. If it’s small or there’s a counter you can bet he will panic.”

“He knows too much now,” added Ernest Berney. “It’s not that they hurt him, but they mess with him and he does not like it one bit. And the worst thing they can do to him is look in his ears.”

“He hates that,” Ginger Berney said with a laugh. “All the finger pricks and needles and tests and the thing that he hates the most is when they look in his ears. We can’t figure it out.”

The future for Joshua is uncertain, though doctors believe the cancer is gone for good. He will have to undergo a surgery to remove a plastic fitting placed in his chest to make the administration of chemotherapy medications easier. There is potential for a second surgery to put a bone graft in his head where surgery left a soft-spot.

“I always ask ‘what’s next’ and all they’ll tell me is that we’ll have to wait and see,” said Ernest Berney. “They don’t like to lay out anything in advance because it can change so quickly. But, there is a 3-year window for infants after they go into remission while doctors keep a close watch and then most feel he is out of the woods. Joshua has been in remission for almost two years, so that is a good feeling.”

For now the Berneys are just focusing on Joshua making friends for the first time and letting him experience new things like eating bean burritos, a recent favorite.

And they have big plans to help the people who helped Joshua.

“We’re going to be holding Team Joshua’s 1st Annual ‘Stop Cancer’ Festival on Saturday at the New Vision Family Worship Center on Wisconsin Avenue to raise money for the Leukemia and Lymphoma Society and Blair E. Batson Children’s Cancer Clinic,” said Ginger Berney. “We wanted to do something that would help but that would also be fun for Joshua and this is what we came up with.”

The Berneys have worked hard on the festival, largely planning it themselves, and are keeping their fingers crossed that it goes well. The event will feature live music, games, food, a fire truck and raffles.

“We want to start doing it every year, but it depends on this year going well,” said Ernest Berney.

Tickets for the festival are $5 per person or $15 for a family of three or more.

“We chose to call it the ‘Stop Cancer Festival’ because stop signs are Joshua’s thing,” said Ernest Berney. “He has always loved stop signs to the point that I even made him one to play with.”

“It’s funny,” said Ginger Berney. “He can say ‘stop’ but he can’t say ‘mama.’”

“Stop!,” Joshua said to emphasize the point.