Reclaiming childhood with clinical trials

For months, there were signs that something was off with six-year-old Mahonri (“Ri”) Conde: the fall from the tree that resulted in a persistent backache; the sudden onset of scoliosis when a month prior his pediatrician had detected none; a subtle weakness in his left side. But Ri’s mother, Michelle, remembers vividly the day she knew something was deeply wrong with her energetic, happy, inquisitive son. Ri had just been fitted for a back brace to treat his scoliosis when his whole body suddenly went numb. “He started smacking himself and saying, ‘Mom, I can’t feel anything. I can move my arms but they’re heavy.’ He couldn’t feel his body from the neck down,” Michelle recalls. “At that moment, I got really worried.”

Soon after, an MRI revealed that Ri had pilocytic astrocytoma – a slow-growing tumor attached to his spine. Ri was immediately scheduled for surgery. But because of the tumor’s placement along the spinal cord and its integration with his nervous system, It couldn’t be completely removed. The plan was to monitor what was left and hope it stopped growing.

When Ri awoke after surgery, he couldn’t feel his legs. It took days for feeling to slowly return to Ri’s lower half, which was followed by months of physical therapy as he relearned how to walk, bike, and move like any other six-year-old. “I was really excited when I could move again,” Ri says. “But stairs were really tricky. They were hard.”

Three months after Ri’s surgery, a check-up revealed the tumor was still growing. For most kids in Ri’s position, the next step would be chemotherapy to try and shrink the tumor. In other words, getting a port installed in his chest. Fighting his new fear of needles on a weekly basis. Enduring rounds of chemo could leave him exhausted, weak and nauseous. Becoming immunocompromised during a pandemic. Potentially losing the hard-earned progress he’d made in physical therapy.

Fortunately, Ri was accepted into a clinical trial at St. Luke’s for Selumetinib, a drug that’s been FDA approved to treat other forms of cancer. He now takes just four pills a day, with few side effects. Clinical trials like this wouldn’t be possible without the Killebrew-Thompson Memorial’s 44-year commitment to cancer research. Each year, the memorial makes a world of difference to kids like Ri.

“He’s just a bright, happy, talkative, cooperative kid,” says Amy Stukenholtz, a St. Luke’s clinical research coordinator who oversees Ri’s clinical trial. “I think people think of pediatric oncology as sad but when you see their faces – that these kids just trying to live their normal lives, it’s incredibly inspiring.”

In April, Ri celebrated his seventh birthday like any other kid, with a treasure hunt and cake. He has the energy to play with his siblings and solve math problem, which he loves to do. His father was also able to take him on a camping trip – he just threw Ri’s meds in a bag and off they went.

“As parents, one of the things that was so scary for us was wondering what his quality of life would look like once he started treatment for cancer,” Ri’s father Jake says. “The fact that he was able to get into this trial has meant everything to our family. It’s allowed us to live a full, happy, active life. It’s been fantastic.”