Son’s Death From Osteosarcoma at Age 12 Leads His Parents to Fight for a CureNov 08, 2023 11:47AM ● By Liv Osby
After having had two girls, Ian Greene’s parents were prepared for another when they learned their third pregnancy would instead produce a boy.
“We were surprised,” said his dad, Michael Greene, “when we saw him on the ultrasound.”
Growing up, Ian continued to distinguish himself.
He was an enthusiastic kid who would thank his mom for taking good care of the family and for making them tasty meals, Michael said.
“In second grade,” he recalls, “he got the ‘Glass Half Full Award.’”
And Ian loved playing soccer, said his mom, Bronwen Greene.
“It was his favorite sport,” she said. “And he enjoyed summer swim team and playing the cello and hanging out with friends. And he always loved doing projects with Michael, too.”
They went hiking and camping and worked on the lake house, delighting in every moment together.
Tragically, that all came to an end on May 31, 2020, when Ian, then just 12, passed away after a short but valiant battle with osteosarcoma, a rare and aggressive form of bone cancer.
“He was terrific. And he lived large for a short time,” Michael said. “He felt exceptional to us the whole time we had him.”
Osteosarcoma is the most common type of bone cancer, according to the American Cancer Society.
Most cases occur in children, teens, and young adults, though it can develop at any age, the society reports. And while it can occur anywhere in the body, it typically starts where bone is growing quickly, like areas around the knee or shoulder.
Ian’s struggle with the disease began in the fall of 2019.
He’d begun to have pain in his left knee. But he’d been playing a lot of soccer, so everyone thought it was related to that, Bronwen said.
They consulted a sports medicine specialist in their home town of Greenville, South Carolina, and got an X-ray, which was normal.
“Sometimes he’d say, ‘Yeah, it feels better,’” his mom said. “But it became clear over a two-week period of that November that it was getting worse. There was more of a swelling.”
When a follow-up X-ray revealed an abnormality, doctors immediately suspected osteosarcoma, she said. An MRI and bone biopsy confirmed it, and worse, that he had a particularly aggressive case.
“It was a huge shock. It still is,” said Michael. “Every day I think, ‘Did it really happen?’”
“As a mother, my biggest fear was that one of my children would get cancer,” said Bronwen. “But it was still quite shocking.”
Then a CT scan showed just how serious it was.
“He had a lot of lung nodules and the bones throughout his body were peppered with metastases,” said Michael. “One consulting doctor said he’d only seen about two cases like this. It was so aggressive and so untreatable.”
The Greenes embarked on a course of standard treatment – chemotherapy to shrink the cancer, then amputation and more chemo.
“They came up with that treatment about 40 years ago, and that was the last significant advance in the treatment of osteosarcoma,” said Ian’s dad.
Today, Bronwen said, five-year survival is about 70 percent if the tumor is localized. If it has spread, it drops to 25 or 30 percent, she said.
At first, Ian appeared to be doing well. But soon, the tumor had grown to the size of an orange. The cancer was progressing rapidly.
In January 2020, doctors amputated Ian’s left leg and started him on two new chemotherapy agents. With a lung CT showing some improvement, things were looking up. So, they decided to press on with treatment.
“We continued to have hope that somehow he would be cured. We just had to continue to have hope,” said Bronwen. “And he wanted to continue to do whatever the doctors recommended to fight the cancer.”
During those months, the Greenes traveled to MD Anderson Cancer Center in Texas, which was offering some experimental treatments, and consulted an expert at the renowned Cleveland Clinic hoping they would stumble across something that would allow Ian to live long enough for a medical breakthrough, said Michael.
But before long, it became clear that the cancer was returning despite the chemo, rendering him ineligible for experimental treatment, he said.
In early May, Ian was in the hospital for chemo when he suffered a seizure. A new MRI revealed the cancer had now spread to his skull and the lining of the brain.
The Greenes, both physicians, knew what that meant.
“At that point, the doctors recommended stopping any treatment. The disease had progressed that much,” said Bronwen. “We came home with hospice.”
Just two weeks later, Ian was gone.
“It was very fast,” said Michael, struggling through his tears.
“But I prayed that if he was going to suffer, to let it be quick. I said, ‘Lord, if you’re going to take him, please don’t drag it out.’”
Though heartbroken, the Greenes resolved to come together, to somehow learn to be a family without Ian, relying on photos and memories, and the “amazing” support of family and friends, to make it through the ensuing months.
“Everybody says it’s the worst thing they can imagine,” Michael said about losing a child. “And my experience would say they’re exactly right.”
Once they were able, the Greenes vowed to get involved with efforts to raise money for osteosarcoma research.
“I just know that Ian would want for us to be doing this on behalf of the other children who are impacted by this disease,” said Bronwen, “to continue to be a part of this fight for other people.”
One of Ian’s doctors had told them about MIB Agents, or Make It Better for Kids, a pediatric osteosarcoma nonprofit dedicated to helping patients, families and others through programs, education, and research.
They joined and started a Family Fund with the group so friends and family could donate after Ian passed, which enables them to help decide which research to fund. Bronwen also now serves on the Family Fund Advisory Council.
“I just saw how it was such a great community of patients and their families and survivors and sarcoma specialists coming together to support newly diagnosed patients and educate people about osteosarcoma,” she said.
“And a big part of it is funding research, which is important to us, so we can identify and develop new treatments.”
The Greenes also participate in fundraisers throughout the year, including offering bright gold bows that supporters can display on their homes and mailboxes during Childhood Cancer Awareness month in September to help fund research and raise awareness.
“It seems like a small thing – bows,” Bronwen said. “But just to see the number of people who we don’t know and who’ve heard Ian’s story display those bows ... just to ride past houses that have them is encouragement for us and hope for other people in that it does bring more awareness.”
“Other people hate this cancer with us, even those who didn’t have a child die,” said Michael. “And they’re really committed to finding a cure.”
MIB Agents also pairs ambassador families with families who have newly diagnosed children, helping to make hospital stays less difficult, among other efforts, she said.
And Bronwen attends the annual MIB scientific conference which brings together specialists from around the country to collaborate. There, she’s met many of the researchers and witnessed their passion.
“It’s a pretty small organization, but we can have a big impact when everyone is working toward the same goal,” she said. “We want more young scientists to be interested in that research.”
MIB Agents was founded in 2012 by Ann Graham, a marathon runner who was diagnosed with osteosarcoma in 2010 at the age of 43.
While being treated in the pediatric cancer center at Memorial Sloan Kettering in New York, she was moved by the courage of the children in treatment alongside her. That inspired her to begin the organization whose goal is to Make It Better for children with osteosarcoma.
The group says it has raised more than $1.5 million for osteosarcoma research since 2017.
Because so few people are diagnosed with osteosarcoma – about 1,000 new cases annually with about half in children and teens, according to the cancer society – it doesn’t get the research funding that more common cancers do, said Michael.
MIB Agents reports that just 8 percent of federal funding goes to childhood cancer, and even less to osteosarcoma.
The Greenes would like to see more funding for osteosarcoma and other rare cancers, believing that any breakthroughs for them would help people with common cancers as well.
“There is definitely a need for more funding for pediatric cancers,” said Michael, pointing out that progress in childhood leukemia means children who would have died years ago don’t die today.
“The dollars spent on trying to cure one of these really rare childhood cancers could be really useful in other cancers too,” he said.
Working with MIB Agents has helped the Greenes cope with the anguish of losing their beloved boy.
“As parents, you’re supposed to fix your children’s problems, but there was nothing we could do,” said Michael, describing Ian as his best friend.
“I think we’ll live to see big strides,” he added. “It’s too late for us. But we have hope.”
“Even though we’ll never understand why this happened to Ian,” Bronwen said, “we still desire to see some good come out of it.”
To learn more, go to www.mibagents.org