By Shana Adkisson
The Norman Transcript
NORMAN — Javier Restrepo’s time on this earth might have been a short 4 1/2 years, but it was in those 4 1/2 years that Javier Restrepo stole the hearts of everyone he met.
Two of those hearts belonged to Javier’s parents, Heidi and Santiago. And even though it is still a difficult process, Heidi and Santiago hope that their loss will one day be someone else’s gain.
The Restrepo’s story began when Javier was only 1 1/2 years old.
“He couldn’t kick an ear infection. His belly was getting ascended. When we took him in, his pediatrician sent us to Norman Regional for an ultrasound of his stomach. His liver was packed with blasts, it’s when his white blood cells go bad. So they were cancer cells that had packed his liver. I think over 90 percent of his white blood cells were cancerous,” Heidi said. “It was never even on my radar. Just the worst news. The worst news. Not because of us, but because of him, because of how young he was and what he was going to have to go through.”
That night, the Restrepo family began the biggest fight they had ever faced. Little Javier Restrepo started chemotherapy.
“He was a rapid responder. It was the type of ALL (Acute Lymphoblastic Leukemia) that was between 80 and 90 percent cure rate. He went into remission very fast,” Heidi said.
After months of treatment, it seemed as if the Restrepo family’s prayers had been answered. But the good news didn’t last long. In 2008, Javier Restrepo relapsed.
“He was still on chemo and was having to suspend his treatment because his blood counts were too low,” Heidi said.
Doctors told Santiago and Heidi that they could once again fight Javier’s cancer by finding a candidate for a bone morrow transplant. The couple didn’t have to look far as their oldest child, Diego, was a perfect match. The Restrepo family again was filled with hope that Javier would kick this Leukemia.
“During the process his liver failed because of the radiation therapy he had to go through. I would have to say that was the worst part of any of his treatment, not just for him, but for us as well. He had to go into the Pediatric Intensive Care Unit and he was on machines. At first we were told because he was going through therapy he couldn’t get a liver transplant,” Heidi said. “Then we were told that the A.I. duPoint Center in Wilmington, Del., had a liver transplant program.”
Since Javier was such a high risk, his name went to the top of the liver transplant list. But, knowing that time was not on their side, the Restrepo family knew they couldn’t wait long.
Again, after several tests and even more prayers, it was decided that Heidi’s brother-in-law would become a live donor for her son and give a portion of his liver.
“I think it was in the nick of time because Javi wasn’t doing well,” Heidi said.
And the waiting game began again for the Restrepo family. And the longer the clock ticked, the more complications that Javier faced. The steroids that Javier was forced to take were almost too much for his had to frail body. Eventually, doctors had to insert a tube through his rib cage to drain fluid that kept building up inside his body.
“He responded well and started playing again. We came back home and he was doing really well. I remember being in the Jimmy Everest Center doing one of our checkups and the doctor who was overseeing the bone marrow transplant said, ‘You know, Heidi, honestly, I can’t believe he is doing as well as he is right now,’” Heidi said.
Once again, the Restrepo family thought they had battled the ultimate fight. Then, during another checkup, doctors gave Heidi and Santiago more bad news. This time, they discovered fluid had built up in on Javier’s spine.
“I knew at that point,” Heidi said. “We were told that we could do chemo to buy time, but there was no cure. We had two choices, let it go and just assist him in whatever we could do to make him comfortable or take him and try and fight it. That was the hardest decision for us. I remember going upstairs asking Javi, ‘Do you want us to take you to the hospital and try and make you better or do you want us to leave you alone?’ He said ‘Leave him alone.’”
It was then that Heidi, Santiago, Javier and Diego lived their days to the fullest. It also was the time that Santiago, realized he had a second family. Being the head coach of the University of Oklahoma Volleyball team, the Restrepo family were immediately showered with kindness and generosity of Santiago’s coworkers.
“Coach (Bob) Stoops helped us go to Florida and let us stay in the place he has there,” Heidi said.
But the giving didn’t stop there, when the Restrepo family came home, via Stoops’ private jet, OU head women’s basketball coach Sherri Coale arranged a photography session with Shannon Ho. Javier also had time to meet with all the teams at OU and was even visited by the women’s soccer team, the women’s gymnastics team and OU cheerleaders while he was hospitalized at the Jimmy Everest Center for Cancer and Blood Disorders at the Children’s Hospital at OU Medical Center.
Even though the little boy that is described by his mother as a true fighter gave it his all, cancer was just too much. On July 31, 2009, Javier Restrepo’s fight with cancer came to a close.
“Right after it happened, I just had this knowledge that he was better. It was very comforting,” Heidi said. “I truly believe that there are some kids that are special kids that don’t have a lot of time and you can just see that. And he was one of those kids, looking back we know he was never meant to be with us very long. I always say, we are just waiting until we get to see him again. In a weird way, that makes death easier for us. It’s not a bad thing for us anymore.”
Through all that they have received, the prayers from their church family at St. Thomas More University Parish and Student Center, the gift cards and support, the Restrepo family has one desire, to make Javier’s legacy live on and, hopefully, raise enough funds to end the disease that took their son’s life.
Since Javier’s death, the Pledge for a Cure event has been established. The 2012 Pledge for a Cure event is scheduled for Oct. 28, at McCasland Field House. The Sooners face Texas in a nationally-televised contest on ESPNU at 2 p.m.
Donations will be accepted for the Jimmy Everest Center for Cancer and Blood Disorders at the Children’s Hospital at OU Medical Center. Cash will be accepted along with checks and money orders made out to the JEC Foundation.
Also on the day of the Pledge for a Cure, various OU head coaches will be available to sign autographs from 1:15-1:45 p.m., in the wrestling team room located on the north end of McCasland Field House. For a minimum $10 donation, individuals can receive one autographed item per coach. Tickets for the match are $8.
Those who can’t make it to the game, but would like to donate, are encouraged to send funds to OU Health Sciences Center, HEM/ONC Jimmy Everest Center, Attention: Debbie Stuart, 1200 Children’s Avenue, Suite 14500, Oklahoma City, OK, 73104
“We’re just trying to do something positive for those families that are going through what we went through. Hopefully, it will give them a little bit of piece of mind and hope,” Santiago said.
Even though a few years has passed since Javier’s death, the Restrepo family still struggle with their loss.
“He had a great smile. He was very lovable. He was very friendly,” Santiago said. “I miss my Mini-Me. He definitely had my personality.”
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