It really is awesome. He’s had a rough day today, and to see his reaction and how excited he is, it makes me emotional. Just one big thank you for making this special for him. —Merrill Van Leuven
WEST JORDAN — Santa flew into a local airport Friday and began his hunt for the perfect vehicle to take him to a special little boy.
He knew it had to be red, so he called up the West Jordan Fire Department for help.
"I said, 'Ethan loves fire trucks. He would love to have a fire truck come into his front yard and take it around the block,'" Santa said.
And so Santa, Mrs. Claus and West Jordan firefighters picked up Ethan Van Leuven in a red fire engine to celebrate what will be Ethan's last Christmas with his family.
Ethan has captured the hearts of a community and nation who came together to make sure his last days of battling leukemia were among his best.
When the Van Leuvens found out Ethan was not responding to life-saving treatments to fight leukemia, they decided to fill his final days with celebrations.
And so they crammed all the holidays they could together into one week.
Christmas, Ethan's favorite holiday, came at the end of a week of celebrations: Halloween on Tuesday, a birthday celebration Thursday, Christmas Eve on Friday and Christmas Day on Saturday.
It began with sign-up sheets in local LDS congregations, and the efforts of neighbors and friends. One of Jen's high school classmates and friends Nancy Labrum Brown created a GoFundMe account for Ethan, gofundme.com/EthanourHero; friends created a Facebook page, facebook.com/fundraiserforethan; and neighbor and friend Anja Peterson created an account at Cyprus Credit Union in Ethan's name. She also worked with local and national media to get the word out.
Police officers, firefighters, mascots, the "Today" show and even Darth Vader showed up over the week to help celebrate. Local radio station KSFI played Christmas music from 5 p.m. to 8 p.m. Friday to help kick of the Van Leuvens' celebration.
"You are our hero," Bluffdale officer Aaron Rosen said over his police car's loudspeaker, at the head of a nearly 100-person parade during Ethan's birthday celebration Thursday. "Thank you for being a part of our lives, Ethan. Our hero."
Christmas met Halloween Tuesday as neighbors strung lights on their roofs, set up Christmas trees and placed reindeer in their yards to prepare for Friday while jack-o-lanterns sat out in yards ready for the evening's events.
The neighborhood flew into Halloween action as they greeted Superman Ethan, who was trick-or-treating with his plastic jack-o-lantern bucket, along with his parents and five siblings.
Felix Falcon, the mascot for the Utah Falconz women’s football team, came along. The boy beamed as he sprayed Felix with silly string, but squealed and ran when the mascot pulled out an even larger container in response.
Before heading out, the boy shrieked with delight as his dad, Merrill Van Leuven, tickled him while helping his son get into his Superman costume.
“All right, Mr. Superman,” Merrill Van Leuven said to a stoic costumed Ethan.
The boy furrowed his brows and flexed to match the plush muscles on his costume.
“I’m Superman,” Ethan said in a deep voice while small, red lights embedded in the costume blinked on the Superman insignia.
“Up, up away,” he said, jumping into his dad’s arms, his blue eyes bright.
“Superman ready?” his dad asked.
“Yesh,” the boy said in an altered voice, nodding his stuffed pig’s head up and down.
The costume is appropriate for a boy who has endured years of treatments with little complaint.
“He is probably the most patient person that I know. I look up to him in a lot of ways,” said his mother, Jen Van Leuven. “There’s a lot of things that he has dealt with that I don’t know that I could deal with without complaining like he does. He just goes with it.”
Ethan was diagnosed with acute lymphoblastic leukemia at 22 months old. He went into remission six months later and was one year into the process of maintenance chemotherapy when he relapsed. He went through three rounds of intensive chemotherapy, but it was not working.
In November 2013, the Van Leuvens tried an experimental drug, which put him into remission. After cranial and full-body radiation, he received a bone marrow transplant in January, with his little brother, Blake, acting as the donor. He again relapsed.
His parents took him for treatment in Seattle, hopeful they would return soon to continue treatment. Days later they found out his leukemia was out of control and no longer treatable.
Acute lymphoblastic, or lymphocytic, leukemia starts with white blood cells called lymphocytes in the bone marrow, according to cancer.org. Acute means the disease can spread quickly. Untreated, it can be fatal within a few months. Lymphocytic means it develops in young lymphocytes. The leukemia cells get into the blood quickly, where they are carried to other parts of the body, including lymph nodes, liver, spleen, brain and spinal cord.
“When Ethan was first diagnosed, we decided that we weren’t going to break because of this. We were going to stay strong and stick to it,” Merrill Van Leuven said.
Early in the week, Ethan’s parents expressed their love for their son. It was this love that motivated them to pursue treatment as far as they could and put together the week’s events.
“He’s my little buddy. I also want him to know how proud I am of him for fighting through this, and in the midst of his challenge being such an example of faith and strength to me,” Merrill Van Leuven said.
One of Jen Van Leuven's hands rested on Ethan’s tiny foot, the other on her husband’s arm as she spoke. Merrill Van Leuven’s hand rested on her leg.
“We also want him to know how much his Savior loves him and that he’s going to be there waiting for him along with many, many people,” she said.
Help poured in from throughout the community. Some, including Jaynee Chandler, put their hobbies to good use.
"It just makes me feel good to be able to help out in any way that I can, whether it’s something small," Chandler said with emotion in her voice as she put the finishing touches on a Batman cake she made for Ethan. "I mean, it’s a cake. It’s simple.”
Others networked and galvanized people into action.
Valerie Walker, event coordinator for Fantasy Con, found out about Ethan Wednesday afternoon and took to Facebook to rally the troops for Ethan's birthday party the next day — one month before his actual birthday.
She mobilized nearly 100 people, including cosplay Indiana Jones, Darth Vader and Black Angels, local police officers, a man playing a bagpipe, the Imperials Car Club and local mascots: Real's Leo the Lion, Max, the Belgian Malinois from the Max Cares 4 Kids Foundation, and T-Bone the bulldog from the Mascot Miracles Foundation.
Police led a parade from an LDS meetinghouse down the street to where the Van Leuven family sat on their front lawn.
"On behalf of all your friends and family, we knight you for courage, for joy and for strength, Sir Ethan," a cosplay knight said Thursday evening when they arrived at the Van Leuvens, handing Ethan a toy sword and leading the crowd in three cheers.
"Hip, hip, huzzah!" they shouted.
Ethan looked on with an expression of wisdom beyond his years, one often reserved for those who have endured extreme suffering. Suddenly, he was 4 again, noticing his reflection in his new sword, holding Darth Vader at knife point and telling his dad how he saw Indiana Jones' bike.
“It really is awesome. He’s had a rough day today, and to see his reaction and how excited he is, it makes me emotional,” said Merrill Van Leuven in a rare break from his often joyful expression. “Just one big thank you for making this special for him.”
Diego Torres, 13, of West Valley City, a stranger to the family, was next in line to help. He spent years winning stuffed animals from inside claw machines and decided to donate the lot to Ethan. He began collecting the animals when his mother was diagnosed with melanoma four years ago. She is now cancer-free, but the impact of the disease remains.
“It’s just heartbreaking,” Diego said with tears in his eyes, explaining the pain Ethan’s family must be feeling.
More than 150 people crammed into the Van Leuvens' front yard Friday night, holding cups with candles inside during the final community event for Ethan.
"Silent Night" and "Away in a Manger" rang out as a dozens of children from Ethan's LDS congregation dressed angels, shepherds and wise men enacted a live nativity, alongside a live baby representing Jesus.
After the caroling, a tractor took the family on a hay ride through the neighborhood. Homes throughout the neighborhood glowed with lights, luminescent evidences of the neighborhood's love and support for the boy.6 comments on this story
The family then went back to their home for a private celebration that night, and on their Christmas Day, Saturday morning, to wrap up their week of holidays.
"Just overwhelmed" was Merrill Van Leuven's response to the outpouring of support.
He expressed his gratitude to the community and to God for the "outpouring of love and affection," they received. The selflessness of others exemplifies what the Christmas season is all about, he said.
"It's felt like Christmas all day to me."
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