Dylan’s Journey with Ewing Sarcoma

Dylan’s Journey with Ewing Sarcoma
August 14, 2017

During baseball practice in January 2017, Dylan Provenzano’s coach noticed that he kept falling. His mom, Sam, recalls, “I went to pick Dylan up from practice and his coach shared with me that he was concerned for Dylan. That throughout practice Dylan’s legs kept giving out and he would fall.”

Sam and her husband Adam immediately took Dylan, 12, to the doctor assuming that it was a possible fracture in one of his legs. “Instead we got devastating news. Dylan was diagnosed with Ewing sarcoma, a rare bone cancer,” says Sam. “For years we had submerged ourselves supporting pediatric cancer so to hear that our son had the disease, our world just collapsed.”

“We turned to Lurie Children’s for a second opinion and knew instantly we were in the right hands when we met Dylan’s doctor, Dr. Jen Reicheck,” says Sam. “Dylan even smiled and gave a nod of approval as soon as we walked out of her office. We knew that he was going to fight this with strength and determination and that he would not be alone – that Lurie Children’s doctors, nurses and staff would walk next to him through it all.”

Dylan underwent surgery at the end of January and began his first round of chemotherapy. In April, he had a second surgery to re-sect more of his left fibula. “We were told he wouldn’t walk for four-six weeks but being the warrior that Dylan is, he was up and walking within two weeks.”

Since his second surgery, Dylan has started another round of chemotherapy. “This round of chemo hit Dylan harder. He’s had more side effects and more hospital stays but he’s fighting and trying to stay strong.”

While he is in the hospital, Dylan loves to have his door open, to flash a smile and to wave to everyone who walks by. He even plays peek-a-boo with the younger kids on the 17th floor. “He has a special bond with the doctors, nurses and child life team. They just get Dylan and help celebrate so many of his victories. They also comfort him when he’s down. They pick up our entire family when times get tough,” says Sam.

And while the Provenzano family has been immersed into the side of the pediatric cancer world they never imagined would happen to them, they continue to give back. Sam recognized a need to help fellow cancer families at the hospital. “In the first month of Dylan’s treatment, we saw a need. Sometimes in the midst of the appointments, treatments and long days, as a parent you just simply forget to eat. You don’t want to leave your child’s side,” says Sam. “So to help offset costs for families and also have food close at-hand, we started collecting snacks and coffee from family and friends to leave in the family lounge.” 

Dylan still has four more rounds of chemotherapy to endure but his treatment should be completed by mid-September. “This is not the route we thought our boy would have in life. But since it is, there is no other place we would be right now other than Lurie Children’s. They have become our family. We feel so safe here at times. We are more comforted here than at home with the unknown.”

Lurie Children’s Center for Cancer and Blood Disorders

The Center for Cancer and Blood Disorders at Lurie Children’s treats more children with cancer and blood disorders than any other hospital in Illinois. Although cancer is rare in children, we treat 220 new patients each year for a wide range of childhood cancers.