Playing with toy trucks and at the park is typically what the life of an average 4-year-old consists of. But, for 4-year-old Caleb Terry of Santaquin, his trip to the park on Friday was his first time in seven months.
"This is the first time he has been anywhere besides the hospital and home since he was diagnosed," said Sara Terry, Caleb's mom.
On Dec. 9, 2012, Caleb's parents, Mike and Sara, received a message on their answering machine from Caleb's doctor, asking them to call him back. It was the phone call that no parent ever wants to get. Caleb's doctor wanted to give them the results from the blood test they had taken the day before, when they took their son to the doctor thinking that he had the flu.
"When I got him on the phone all I heard was 'I'm sorry' and 'It looks like leukemia,' " said Sara Terry. "At that moment, my whole world stopped. It was as if time itself was standing still. Inside my head, I was screaming 'No, No, No!' "
There wasn't much time to think about the diagnosis for the Terrys as their doctor told them they were to immediately head to Primary Children's Hospital in Salt Lake City. They made arrangements for their three other children, grabbed what they needed and headed out the door on that snowy, winter evening, not knowing what their little boy was about to face.
"I don't even remember that drive, it was all such a blur," said Sara Terry. "All I could think about was that our little guy had to live and that he had to be OK."
After taking more blood to run tests on, the Terrys met with the doctor the following afternoon to hear the news that was hard for them to swallow. Their happy, energetic 3-year-old son had Pre-b Acute Lymphoblastic Leukemia, also known as ALL.
"The doctors give us hope that he will make it, but his little body has to endure chemo for a total of three and a half years," said Sara Terry.
Even though Caleb struggles leaving the house, the Terrys have made it an annual outing to go as a family to Orchard Days, which is Santaquin's city celebration. As the celebration was in the planning stages, the Orchard Days committee held a meeting and decided that they wanted Caleb to be Grand Marshal of the children's parade.
"I received a phone call from Kevin Schmidt, the Director of Leisure Services for Santaquin city, asking us if it was OK for Caleb to be the grand marshal," said Sara. "I was speechless and so touched that they wanted to honor our Caleb."
The theme for the children's parade is "Super Heroes" and they have asked anyone who participates in the parade or comes to the entertainment in the park after the parade to dress up like their favorite super hero. The theme of super heroes comes from the famous orange cape that was made for Caleb that has a leukemia ribbon on the back of it.
"My two sons are very good friends with Caleb, and one of them was celebrating his birthday and it was a super hero-themed party," said Schmidt. "My boys have had a hard time understanding why Caleb is ill and why he was not able to make it to the party, so I decided to make him his very own super hero cape, and we delivered it to him along with a super hero mask."
With Caleb being the grand marshal and people learning of why this little 4-year-old is so special, the Terrys hope it will help give the community awareness that we all have trials and struggles in our lives and each of our journey's are different. They hope to show if we are courageous and stay strong like Caleb, we will all be okay.
"I am in the parade wearing my super hero cape," said Caleb. And, for Caleb's family, he truly is a superhero, considering the treatments that are in store for him.
For the first nine months or so of Caleb's treatment, the Terrys have made and will make weekly visits to Primary Children's Medical Center for Caleb's chemotherapy treatments. After that time, they will be making monthly visits for his treatments.
So, on Monday, Dec. 10, 2012, Caleb began his long courageous journey to getting healthy again. They took him into surgery to have a central line, or port, placed in his chest that is used to give him his chemo and to draw blood work. They also took a bone marrow sample and did a lumbar puncture to see if the leukemia had spread to his spinal fluid and brain. Fortunately, the leukemia had not spread, but his bone marrow came back showing almost 90 percent leukemia cells. They spent the next five days in the hospital getting him treatment so he would be able to go home.
"We were so glad when they had his port put in, as scary as it was, because all the blood work that needed to be done could be done so much easier," said Sara. "Instead of four nurses, myself and my husband trying to hold him down while they drew blood from his feet because his chubby little hands weren't working to draw from anymore, all the while Caleb screaming and pleading for us to stop as tears are flowing down the cheeks of my husband and I and our sweet Caleb ..."
Caleb does not complain each time they make the trip to Primary Children's. It has become a weekly routine for him.
"I go to the doctor and they put magic cream on my magic button (his port)," said Caleb.
When asked what he does when he goes to the hospital each week his response was "they take my temperature and I get to play video games."
Due to the chemo treatments, Caleb is losing his hair, so his parents have kept his buzzed. His 12-year-old brother, Andy, didn't want him to feel different so he buzzed his hair too.
At times, his hair will start to grow back a little. Caleb reminds his mom by telling her in his own words "that his hair is growing up."
Caleb has many friends, but his two sisters and his older brother are by far his best friends. It has not been easy for them to see what their brother has had to go through. Each night Andy will lay down next to Caleb and read a book with him before bed. They like to look at the pictures make up their own story together to go along with them.
"It is our special time together each night," said Andy. "When Caleb was in the hospital, I had my mom video me on her phone telling him stories so she could show him those and it was like we were still reading together."
During this challenging and emotional time for the Terry family, they are in awe of everyone who has reached out to help them.
"I will have days when someone will stop by to just bring me a drink or a little treat just to check on our family," said Amy. "We are so touched by all the love we feel."
Caleb will be leading off the children's parade beginning at 6 p.m. on Monday at Centennial Park in Santaquin at 300 S. 100 West, wearing his bright orange cape and driving his homemade blue truck that his dad and uncle made him.
"This has been a lesson for us to take advantage of the little things in life
and to try to focus on the positive," said Sara.
For more information on Caleb's progress, his journey, and to find out more about fundraisers that will be held for him you can visit calebscourageousjourney.blogspot.com or www.calebscourageousjourney.weebly.com. For more information on Santaquin's Orchard Days visit www.santaquin.org.
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