Hermosa Beach's Jacob Conde, 11, has been battling a rare form of pediatric bone cancer for more than two years. His father Roger said Jacob came to him one day saying he had pain in this thigh. At the time, Jacob was playing flag football, so Roger thought maybe his son pulled a muscle.
But several weeks later, in March of 2015, the pain got much worse.
“He would wake up at night just screaming in pain,” recalled Roger. “So we took him in to see his doctor (Christine Curtis) and she did blood work. She said something is not right. So we went to see an orthopedic doctor in Torrance, part of Children's Hospital LA. He took an X-ray of his femur bone and he said almost immediately, 'You have to see my partner at Children's Hospital. There is something definitely wrong.'”
After a battery of tests, Jacob was diagnosed with Ewing's sarcoma, a rare type of cancer that forms in the bones or other soft tissues. Because of its rarity, Roger and wife Stephanie, who have another son, Lucas, are hoping to raise more awareness of the cancer. Roger's friend and business partner, Chris Cordoba, has sponsored a girl's team for Charlie Saikley 6-Man Beach Volleyball Tournament in Manhattan Beach, which takes place Aug. 4 and 5, for the past five years. This year, the team will be named Jacob's Angels in an effort to raise awareness of the disease and raise money for research.
Cordoba, who founded California Retirement Advisors in El Segundo with Roger, said he wanted to provide a different purpose for this year's team.
“The girls have been interested in being on a team that supports a cause as opposed to just going out playing for fun,” Cordoba said. “They've been very supportive and asking what else they can do even though they don't know him yet.”
Roger said that since they had found the cancer in Jacob's left femur fairly early, they thought everything was fine after treatment. But Jacob began complaining about leg and pelvic pain again and they discovered the disease had returned in June 2016.
He went through chemotherapy, but in December of 2016, doctors discovered the cancer had spread to seven different places including his head, right shoulder, jawbone, rib and waistline. Again, they thought they had it under control with radiation and chemotherapy. But yet again, several weeks ago, they found the cancer in Jacob's pelvic region and then another spot in his head. This week he's back for chemotherapy treatments.
On his 12th birthday in October, Jacob will be eligible for a new medical trial that gives the Conde family some hope. But Roger said right now they are living day to day.
“Once that thing spreads and goes into other parts of the body, your percent goes down from 40 (percent) to single digits,” Roger said. “That's where we were last December. It was really bad.”
Roger said he has some advice for parents. “Don't discount what your child is saying.” Get blood work and X-rays because many times a family doctor is ignorant of this rare form of cancer, he said.
“It's worth going to the doctor just to double check to make sure everything is okay,” Roger said. “There are a lot of parents out there who will blow it off, 'Oh, you're fine, keep going, muscle through it.' Especially dads. That's how it is. If they tell you something, just go.”
Roger added, “We don't know where our days are going … if we can find a way to help kids down the road, that's what we're trying to do.”
For monetary donations, the Conde family would like contributions to fund UCLA Jonsson Comprehensive Cancer Center Memo line, care of Noah Federman, M.D. Pediatric Sarcoma program Ewings Sarcoma Research.
For more information on Jacob, visit the Facebook page “Jacob's Journey-Sarcoma Sucks!” at bit.ly/2uSQxkE.