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By Jeremiah Dobruck, Peninsula News
Cody Esphorst has been in the hospital at least 6,000 times in the nine years he’s been alive.But on Monday he was at home at Creations for a Cause, his parents’ store in Palos Verdes Estates that opened three weeks ago. Cody was sitting behind the counter on his mother’s lap, holding a photo while they told the story of his life so far.Since doctors found thousands of growths inside Cody’s intestines, colon and rectum when he was 15 months old, Cody has been in and out of the hospital continually.
In the picture, Cody is in a bed holding out a bag of blood like he’s showing off a picture or his latest piece of schoolwork. He has a toothy grin on his face.“That’s my grandpa’s blood. He donated blood for me,” Cody said.“A lot of people donated blood for you,” Julie, his mother, chimed in.She’s right. Once, hundreds of people donated more than 400 pints of blood during a blood drive organized around Cody that benefited two hospitals. They lined up during the drive in Lomita that eventually had to turn people away.Cody has battled cancer, had his abdomen cut into four times to clear a blockage in his digestive tract and suffered mysterious dehydration among other serious health problems. And it all goes back to one root.Cody has Bannayan-Ruvalcaba-Riley Syndrome.And Monday he was helping explain what that is at Creations for a Cause, where he is the cause.He hurried over to present a glossy, letter-sized photo his mother handed him. The photo was from a colonoscopy.“That’s inside my body,” Cody said, jabbing his finger with all the dexterity of a 9-year-old toward clumps of fleshy growths the size of marbles or grapes lining the walls of his intestines.“Basically it’s polyps,” Jesse, Cody’s father, clarified. Throughout Cody’s intestines and rectum, there were and still are bunches of those growths.Doctors found them when Cody was 15 months old, and they caused him to leak dangerous amounts of blood and protein.“He basically had about half the amount of blood you’re supposed to have. And they did a blood transfusion,” Jesse said. “They went in and did a colonoscopy and found that he had thousands [of polyps]. They used thousands as a figure of speech. More than they could count was exactly what they said.”From that day on, Cody had a procedure every four to six weeks to remove about 50 polyps at a time. This went on for a year and a half until his parents decided to remove his colon.They hoped removing the home of 95 percent of the polyps would curtail the problem.It helped, but Cody still goes in intermittently for procedures to remove more polyps and treat any other effects of the disease. But sitting behind the counter of Creations for a Cause surrounded by inspirational shirts and knick-knacks, you wouldn’t know it.Cody isn’t quick to talk. He’s shy. But his demeanor around adults shows he’s comfortable with them after meeting countless medical professionals. You feel like he could calmly handle anything.He smiles — almost constantly — and is quick to laugh with his parents.“I don’t think he’s a normal child; I really don’t. I know that sounds crazy. But I really feel like God sent him here for a reason,” Julie said.Cody has changed his parents’ lives. The third of four children, Julie and Jesse did not expect Cody to come with a lifetime of health issues. In nine years, there have been $1 million of medical bills, and the family has declared medical bankruptcy once already.“Once you are in the situation, either you sink or swim. And yeah, Jesse and I have hit rock bottom, but it becomes you. This is our life,” Julie said. “I tell doctors and residents, ‘You guys see him and you go on your way. We take him home. This is our life. This is my life, every time he breathes, every time he eats, every time he sleeps.’ This is us, and I’ve changed completely.”With that change came a mission, and the Esphorsts’ business, in a small storefront across from City Hall, is the brick-and-mortar seedling of it.Inside, the walls are painted pink and gold, representing awareness for breast and childhood cancer.Merchandise is packed into the niche inspirational gift store. Shirts with slogans like “Nobody fights alone,” candles with “Faith” and “Love” printed on them, decorative wine glasses and other collectibles line the walls.The store is a way for Jesse and Julie to hold a job and make money while remaining flexible enough to take care of their son. Last November, Jesse sold his stake in a small security firm, knowing he was becoming the forgotten partner after spending weeks at a time with Cody in the hospital.But the store is more than income. The Esphorsts want to use it to give childhood cancer a bigger stage.Each month, the Esphorsts will choose a family with a child struggling with cancer that, in turn, is struggling with the bills and donate a portion of their proceeds.“We’ve always said that we would like to try to leave some kind of legacy for Cody. Something that he’ll always have a part in.” Jesse said. “We talked about a foundation for Cody, but it’s very expensive to start a foundation, so we thought that this would be a step for us to leave some type of legacy for him and know that hopefully this will make a difference in someone’s life.”They plan to give 15 to 20 percent of their proceeds to each family. But in the three weeks the store has been open, they haven’t found a local family to take the money.They are also just trying to get their feet set in what’s been a slow three weeks since the store opened.They need the store to work. Right now the Esphorsts are relying on assistance from their family and government to survive.“Had we been in this financial situation when we first got married, we would’ve been devastated,” Jesse said. “Pride kicks in. And that’s just not important any more.”It’s a risk, but it’s a possibility for them to recovery financially while furthering a the purpose Cody inserted into his parents’ lives.It was almost exactly a year before the store opened when Cody finished a bout with cancer.In 2009, Cody’s face started to swell. After a CAT scan, doctors found he had a collapsed vein, a problem he was rushed to Long Beach Children’s Hospital to remedy.But the CAT scan also found tumors.“Thank God that they did that CAT scan because in that CAT scan they found the two masses in his thyroid, which we would have never found,” Julie said. “Once we fixed the vein — they ballooned it and got it back up to somewhat of a flowing stage — then we obviously took on the cancer problem. In December [2009] he had his thyroid removed, and in March [2010] he went through radiation.”But, Jesse explained, that might not be the end of cancer for Cody.“That’s our biggest concern right now are the polyps that Cody has right now are juvenile polyps. So the likelihood of those becoming cancerous right now are not real high, but as he gets older, that unfortunately changes,” he said.The Esphorsts are South Bay natives and live in Torrance. Jesse went to high school in Miraleste, and now that he’s back in PV, he and his wife have big plans to try to build a community for families struggling with childhood cancer.Currently they’re trying to get a small Easter-egg hunt approved to raise awareness, and in September, Julie is hoping she can hold her first Palos Verdes Walk for a Cure.Some day, the Esphorsts hope they can build a haven for children with cancer and their families — simply a place to interact with others who have had the same struggles.“I truly, truly think that we can make a difference and that we can make a change and we’re in one of the best areas possible to do it. But we need that support. We can’t do it alone,” Jesse said. “Is it going to happen overnight? Absolutely not. Is there a chance it may not happen? As there is with everything in life, there’s a chance of that, too. But every night before we go to bed we’re always brainstorming what can we do and how can we make that difference, and that’s really kept us inspired, and it’s kept us motivated.”For now, Jesse and Julie will run their store tucked away in Malaga Cove knowing they’re doing it for the son who inspired it.“We’re proud to be his parents, and he knows that, and we love him just the way he is. We wouldn’t want you any other way big guy,” Jesse said to his son sitting across from him.Cody is no stranger to the store, being there or at home daily where his mother homeschools him. Before the store opened, he ran a roller up and down the gold side of the store, helping paint.He’s a fan of the store he inspired.“I like it ’cause it’s, like, big,” Cody said, laughing and covering his face in shyness, not knowing what to say.“Do you like knowing it’s for you?” his mother asked.Cody’s face turned serious. Suddenly thoughtful, he nodded and said one word, “Yeah.”Creations for a Cause is located at 300 Tejon Place in Palos Verdes Estates. It sells cancer-related gifts and apparel. Julie and Jesse Esphort are also accepting nominations for families affected by childhood cancer to receive a portion of their proceeds. You can nominate a family at www.creationsforacause.org
https://www.pvnews.com/articles/2011/04/07/local_news/news2.txt