OSI’s Hotline Helps Osteosarcoma Patients and Their Families
A mother didn’t know where to turn when her 19-year-old son’s cancer had metastasized. But then she found an “extended care team” and the support she needed at the Osteosarcoma Institute.

When Gavin, now 19, was diagnosed with osteosarcoma in 2020, he was already receiving MAP treatment, which is chemotherapy for this form of bone cancer that afflicts children and adolescents. By then his cancer had metastasized to his lungs. His mother, Nicole, was desperate for guidance and support. But after his sternotomy with bilateral lung resection surgery, the oncology team in their hometown of Grand Rapids, Michigan, said it was running out of options.

“As a desperate mom, I wanted to look at everything, find anything that I possibly could,” Nicole recalls. “I saw a post from OSI on Instagram that said phase two of a clinical trial had officially opened. I was elated and messaged OSI and then spoke with them via the hotline.”

The OSI has been “one of the most phenomenal organizations that I’ve ever worked with, even outside of osteosarcoma cancer-related diagnosis. The care, the attentiveness and the compassion, just the sheer genuine kindness, is something you don’t find that every day.” 

Nicole

Nicole was immediately put in touch with Lee Helman, MD, OSI’s Director and an expert in the field, who quickly helped Gavin by introducing him to Andrew Livingston, MD, from the University of Texas MD Anderson Cancer Center in Houston. They learned that Dr Livingston is the chief investigator for an upcoming clinical trial, which is exactly what Nicole and Gavin were looking for. 

“From beginning to end, it was one week total where I contacted the hotline and spoke with Dr. Helman,” Nicole says, “and then Dr. Livingston called us from his home on a Friday evening to chat with us about options and told us to ‘Come on down. I want to see Gavin in person.’”

An Extended Care Team

In June 2021, Nicole and Gavin returned to Houston to start the formal process for the clinical trial, which will require them to relocate to Texas for a few months. 

Although they are thrilled with the progress they’ve made, Nicole says one of the toughest parts of what her family is going through is “feeling like you’re on an island. No one knows what to expect or what you’re going through. And everything’s so confusing.” 

That’s where OSI has been “one of the most phenomenal organizations that I’ve ever worked with,” she says, “even outside of osteosarcoma cancer-related diagnosis. The care, the attentiveness and the compassion, just the sheer genuine kindness, is something you don’t find that every day.” 

Nicole says she would like to work with the OSI to reach more people and spread the word, in particular about the hotline and how helpful it can be for guidance and support. 

Gavin, who graduated from high school in late May, says he is grateful to OSI and to his mom, too.

“OSI was helpful, that’s how we got here, but man, my mom’s persistent,” he says. “My personal assistant, aka my mom, got in touch with OSI to get me the help I need.” 

Gavin, who plans to attend the University of Northwestern Ohio and study diesel mechanics, offers advice to kids going through treatment.

“It’s going to seem like you can’t win,” he says, “but you cannot give up.”

“Our journey with osteosarcoma is not over,” Nicole says, “but Gavin is doing well, and it is so wonderful to see him smile. Our family is so grateful to have access to this free service. The OSI has become like an extended care team for Gavin, and I am comforted knowing that we have support from this group of osteosarcoma expert physicians.” 


For guidance and support in navigating an osteosarcoma diagnosis, visit our hotline below.

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