Community Celebrates Holidays for Cancer-Stricken Boy

Contributed By Amber Clayson, Church News contributor

  • 5 November 2014

Ethan Van Leuven, who has acute lymphoblastic leukemia, is accompanied by his brothers and sister as he gets Halloween treats from Carolyn Pierce in West Jordan, Tuesday, October 21, 2014.  Photo by Ravell Call, Deseret News.

Article Highlights

  • Ethan Van Leuven, 4, got to celebrate Halloween, his birthday, and Christmas early before his death on October 28, 2014.

“One of the greatest blessings has been the unifying nature of it, but more so to see the strength of the Van Leuven family and their dedication to the Lord as they’ve gone through it.” —David Smith, Ethan Van Leuven’s bishop

Just days before 4-year-old Ethan Van Leuven passed away from cancer on October 28, his family, his ward, and an entire community came together to create a weeklong holiday celebration—including Halloween, a birthday party, Christmas Eve, and even Christmas Day—for the young boy.

Merrill and Jennifer Van Leuven’s son Ethan was diagnosed with acute lymphoblastic leukemia, or ALL, when he was 22 months old. Since the diagnosis, Ethan went through several treatments of chemotherapy, took study drugs, and had a bone marrow transplant. Following the transplant in January, he relapsed in March. Ethan traveled to Seattle, Washington, to try a new clinical drug, but, unfortunately, it didn’t work.

A few weeks ago, the Van Leuven family of the Copper Hill 7th Ward, Copper Hill West Jordan Utah Stake, was told that Ethan had about three to four weeks to live. After multiple close-call good-byes, Sister Van Leuven decided she wanted to make the last few days of her son’s life meaningful for him, her husband, and the rest of their five children.

During the week of celebration, his mother said, “Ethan has always looked forward to Christmas. He talked about Christmas since last Christmas—the whole year. When they told us that he had a limited time, we just wanted to make sure that he had Christmas. Since it’s close to Halloween, he’s also been talking about Halloween and his birthday and so we’re like, ‘Well let’s just do them all.’”

The activities kicked off on Tuesday, October 21, when Ethan went trick-or-treating around the neighborhood with his close friends and family to celebrate Halloween.

Sister Van Leuven said she knew the ward would be supportive and let Ethan trick-or-treat but was surprised to find not only ward members but nonmember neighbors with their porch lights on, handing out candy to little Ethan in his Superman costume.

“We thought, we’ll call 15 houses and he can go trick-or-treating and that’s all we had planned to come of this,” she said. “I think we hit every house along the street whether they were member or nonmember, and they were all so willing to help.”

Thursday, October 23, brought Ethan’s Batman birthday party, along with a Batman parade. Makayla Van Leuven, Ethan’s sister, said the family watched the parade from the street and the whole experience was exciting. Following the parade, the family gathered to eat cake and celebrate the almost five years of Ethan’s life. Ethan was born on November 24, 2009.

Ethan Van Leuven, who has acute lymphoblastic leukemia, gets surprised by Felix from the Mascot Miracles Foundation before trick or treating in West Jordan, Tuesday, October 21, 2014. Ethan is held by his father, Merrill. His mother, Jennifer, is at right. Photo by Ravell Call, Deseret News.

Children sing Christmas songs and participate in a Nativity scene as Ethan Van Leuven, who has acute lymphoblastic leukemia, celebrates an early Christmas in West Jordan, Friday, October 24, 2014. Photo by Ravell Call, Deseret News.

Jen Van Leuven holds her son Ethan, who has acute lymphoblastic leukemia, before an interview at their home in West Jordan, Tuesday, October 21, 2014. Photo by Ravell Call, Deseret News.

Neighbors sign an inflatable snowman as Ethan Van Leuven, who has acute lymphoblastic leukemia, celebrates an early Christmas in West Jordan, Friday, October 24, 2014. Photo by Ravell Call, Deseret News.

Deanna Leach, one of Sister Van Leuven’s visiting teachers and a good friend, said not many ward and community members attended the birthday celebration but rather helped out by contributing food, cake, and decorations. “We involved the community, but we wanted [the Van Leuvens] to have their family time,” she said.

On Friday evening, local wards and the Van Leuvens’ entire neighborhood were invited to participate in Christmas Eve festivities. The celebration kicked off with a visit from Santa Claus and Mrs. Claus, followed by more than 150 friends and neighbors caroling by candlelight in the Van Leuvens’ front lawn. A local radio station played Christmas music for three hours in support of Ethan’s holiday.

After the caroling, Ethan and his family enjoyed a hayride down the Christmas-lit streets—decorated by neighbors in advance—and then returned home for their own family Christmas Eve traditions.

Anja Peterson, Sister Van Leuven’s other visiting teacher, said the ward had been heavily involved in not only the celebrations but in helping the Van Leuvens over the years. The Primary children have specifically been reaching out to Ethan by sending him care packages in the hospital.

“The Primary children made warm fuzzies [for him at] the hospital and banners to put on the walls,” Sister Peterson said. The warm fuzzies were little pompoms with feet that had a message for Ethan written on them. On one of Ethan’s past birthdays the children “made a video of singing ‘Happy Birthday’ for when he was in the hospital,” she said.

As part of the Christmas Eve celebration, the Primary children dressed up as shepherds, angels, and Wise Men for the Nativity scene held during the caroling in the Van Leuvens’ yard.

Emily Douglas, 10, is in the Primary and participated in the Nativity. She said it is difficult to see the family struggle but the whole week of festivities was a great idea to help Ethan and give others a chance to see him one last time.

“It’s just very heartbreaking to see him,” said Emily as she wiped tears from her eyes following the caroling. “I think [the celebrations are] a really good opportunity to know him better. It’s very nice for everybody to see what’s happening with him, and it’s nice for him to get all this support.”

Primary president Shauna Page said the Van Leuvens’ example has blessed the Primary in countless ways.

“This year the theme is ‘Families Are Forever,’ and to have a living example of the focus is great,” she said. “I remember a story that his mom told when [Ethan] was first struggling. He was outside looking at all the flowers in his yard and she asked him, ‘Ethan, what are you doing?’ And he said, ‘My Jesus is showing me all the flowers.’

“And I think for me, I know that Christ has been with him through this and he’s shown us that Christ will help us through those things too,” Sister Page continued. “We have that example to look to.”

Bishop David Smith said the whole experience has taught the ward the importance of a faithful family and the joy of service.

“One of the greatest blessings has been the unifying nature of it,” he said. “But more so to see the strength of the Van Leuven family and their dedication to the Lord as they’ve gone through it.”

Bishop Smith recalled numerous fundraisers held by ward members over the years to help the Van Leuven family. The Young Women hosted a yard sale, and the youth spent time doing yard work, weeding, cleaning, and doing other various service projects for the family. Bishop Smith said the Van Leuvens were humble in accepting the service.

“This family is so inspirational in the way they’ve handled this under pressure,” he said. “People will go to console them, and they leave feeling better about the whole situation than when they got there. That’s the type of people that they are. … Very seldom do I see people who are willing and humble enough to open up that way.”

Lisa Wilson, ward Relief Society president, said the women in the ward have been busy making meals, babysitting, cleaning the Van Leuven home, giving rides, and providing constant support for the Van Leuven family. She said the sisters have been an amazing help and the Van Leuven family has been a great example of faith.

“The most amazing thing is that [the Van Leuvens] are always there at church,” she said. “They’ve never used this as an excuse to not come to church. She’s always there, always smiling, and she’s always positive, and this isn’t their first trial. They’ve been through a lot.”

But the Van Leuvens have seen miracles amid their trials.

Sister Van Leuven found out she was pregnant with her 2-year-old, Blake, three days before Ethan was diagnosed with cancer. The fortunate timing allowed doctors to save Blake’s cord blood when he was born in case it was needed for Ethan.

Full-blooded siblings have a 25 percent chance of being a match. Blake ended up being a perfect stem cell match. When doctors decided Ethan needed a bone marrow transplant, they discovered they had saved enough of Blake’s blood to complete the procedure with all cord blood, considerably eliminating several complications in transplant patients.

Sister Van Leuven said this was one of many miracles provided by the Lord.

“We really felt like this baby was supposed to come at the time that he did, and we found out just a little bit before [Blake] was born that we could save his cord blood,” she said. “With Blake being the perfect match, it gave us an extra year, almost, with Ethan. … If we hadn’t had that, there would have been nothing more that we could have done for him at that time. It really was a miracle.”

Sister Van Leuven is also expecting a baby this November on Ethan’s birthday.

She said their faith in the plan of salvation and love of Heavenly Father has strengthened them through their trials.

“It helps to have a greater perspective,” she said. “It helps to know even through the times when [Ethan] was doing well that if it didn’t work out we would be together again. It helps to know that our Heavenly Father was behind us and not only behind us but lifting and carrying us through everything we went through. There were so many times where you just get overwhelmed and too much to take in and too much going on, and all we have to do is pray and we find that peace and that solace that we are looking for. In any trial, it’s amazing how our Heavenly Father looks out for us, and it’s amazing how the Holy Ghost works and comforts us and reaches out to other people so they can help us.”

On Saturday, October 25, the celebrations ended with Christmas Day. The Van Leuven family woke up early to open presents and enjoy Christmas morning as a family.

The week of celebrations was a blessing and strength for Ethan.

“The celebrations kept him going a little bit and gave him something to look forward to,” Sister Van Leuven said. “There was something to look forward to every single day of the week last week. On Thursday he started to go down hill a little bit. … And when they did the parade for his birthday, he just lit up. It changed his whole demeanor that day. Same thing with Friday.”

The turnout between the ward and the community for the holiday events was more than anyone expected. The Van Leuven family has been touched by the community’s kindness.

“It was completely unexpected,” Sister Van Leuven said. “We’re still in awe of everything that happened. It was just like a domino effect. … It’s just amazing, the goodness in people. I think we’ve cried almost every day this week about just the goodness in people.”

The celebrations also created a missionary opportunity.

Sister Van Leuven said, “We were actually able to take the Book of Mormon to a German cameraman who was here on ‘Christmas.’ … He accepted the book and went to Temple Square with a friend of ours the next day.”

The ward has plans to continue to involve the community with the Church.

“I’m blown away,” said Sister Wilson of the crowd at the Christmas Eve celebration. “These aren’t just ward members here. I’ve had several different thoughts about things we could do to take this and move forward. People we don’t even know are turning on lights and putting out decorations.”

Bishop Smith said the Van Leuven family has brought the ward members and community closer together.

“It’s been amazing to see members and nonmembers, neighbors, people trying to find ways to help,” he said. “So many people in the ward have been incredible about looking for different ways, not just waiting for things to happen, to reach out … [and] be involved. It’s really been amazing.”

The Van Leuvens expressed their gratitude for the service and kindness they have received from the ward and community.

“Thank you for sharing your love, your faith, your prayers for a special little boy,” said Merrill Van Leuven as he spoke to the crowd at his house during the Christmas Eve celebration. “Thank you.”