Savoring life – even in the face of a devastating disease. How a little time in the kitchen is helping one patient make the best of his time in the hospital.
“In the whole country there’s probably only 500 patients with this disease,” said Dr. Craig B. Langman, Lurie Children’s kidney disease expert.
Jordan Janz is one of them. He has cystinosis — a disease that causes damage in every cell in the body. Patients are at risk for organ failure, particularly in the kidney.
“Eventually every other organ, if untreated, would fail as well,” Langman said.
For years, the only treatment option was a drug with toxic side effects. Jordan suffered from chronic vomiting, and he struggled to gain weight.
“About 36 doses of medicines a day with syringes through his mouth. For four years he was on a feeding pump. Meds every six hours, around the clock. There were no sleep overs, no going out,” said Jordan’s mother Barbara Kulyk.
But four years ago – a breakthrough. A drug became available through a clinical trial. Jordan and his family travel from Canada to take part in the study at Chicago’s Lurie Children’s Hospital – one of only three sites in the United States administering the new treatment.
“He was one of the very first patients to get the drug.” Langman said.
“We were 64 pounds when we started three and a half years ago, and now he’s 100 pounds. His quality of life has changed. He’s like any other 15-year-old boy now,” Kulyk said.
Except in the kitchen. For a boy who once struggled to keep food down, cooking comes with an ease beyond his years.
“He started bringing cookbooks home from school, and he would follow the directions,” Kulyk said.
“My brothers and sisters made me cook for them at a young age. They’d pay me $5 to make them a grilled cheese,” Jordan said.
Josh Hasho is the executive chef at the Omni Hotel in Chicago – it’s where Jordan and his family stay during their visits to Lurie. The two struck up a friendship, and it’s turned into a master class in culinary arts.
“We thought, you know we’ll show him where the stove is, where we prep the food and cook it, but when we gave him the challenge of cooking an entrée, we were shocked he wouldn’t back down to any challenge we gave him. It took us by surprise. He stayed with us for 8 hours, he kept asking for more so we just put him to work,” Hasho said.
Jordan jumped right in — eager to sharpen his skills. But more importantly, his time with Josh is a welcome diversion from the daily grind of battling a serious illness.
“It keeps my mind off things, off my pills and disease and stuff,” Jordan said.
“With cystinosis, you never know what you’re going to have happen when you grow up. For Jordan, it’s been something at his age he’s had a lot of worries about what his future holds. I think cooking at the Omni and thinking about being a chef has been really positive for him,” Kulyk said.
“To see someone that is excited about something that I was excited about at a very young age, it just takes me back and makes me happy to work with someone like that,” Hasho said.
“I think he’s a great chef and he’s inspired me a lot. I knew I liked cooking, but once I met Josh and he taught me all this stuff I knew I really liked it and I should become a chef,” Jordan said.
As for the drug trial, it’s been so successful the treatment has now been approved. It not only makes patients healthier, but since they feel better, it helps them socially as well.