Childhood Cancer

Osteosarcoma

Osteosarcoma is the most common type of childhood bone cancer. It typically develops from osteoblasts, the cells that make growing bone. It most commonly diagnosed in adolescents who are having a growth spurt. Osteosarcoma is more common in boys than in girls. 

Latest Osteosarcoma grants

Jie Song, PhD, Principal Investigator
University of Massachusetts Medical School
Innovation Grants, Awarded 2017
Beau Webber, PhD, Principal Investigator
University of Minnesota
Young Investigator Grants, Awarded 2017
Peter J. Murray, PhD, Principal Investigator
St. Jude Children's Research Hospital
Springboard Grants, Awarded 2013

Latest Osteosarcoma blog posts

June 21, 2017


by Adam Paris, ALSF  

Editor’s note: Previously, we shared Part 1 of Arnav’s story. If you missed that installment, read it here.

“Dad, so you’re telling me I beat half the nation’s best on a half-broken leg.” 

Arnav was riding home from the doctor after being diagnosed with osteosarcoma, the most common type of childhood bone cancer. The cancer was in his left leg. 

Arnav, as always, had what his father, Nitin, calls “relentless positivity.” 

His parents, however, struggled with their new normal. 

“Having to learn that he had cancer and that his leg would need surgery, just shattered my wife and me,” said Nitin. “We couldn’t put ourselves together.” 

Even with an unknown future looming, Arnav kept his relentless positivity. His parents began searching for an osteosarcoma specialist in the area, boiling down their treatment options to three hospitals. They chose Children's Hospital of Philadelphia (CHOP) and began preparations for Arnav's treatment, which began with pre-surgery chemotherapy.

Much to Arnav’s relief, the consulting surgeons told him that his leg wouldn’t need to be amputated. They told his family that removing the part of his leg affected by the cancer would suffice, but the particulars of the surgery would depend on Arnav’s future goals.

The surgeons devised two plans, one where he would receive an artificial knee that would recover quickly but restrict his athletic endeavors or he could embark on a year-and-a-half recovery time with a surgery that entailed reconstructing his knee. The second one meant that Arnav would be able to bike again, so his response was obvious.

“His aspirations were definitely to get back on the bike,” Nitin said. “We know he wants to get back on the cycle, we know he wants to compete and we’re fully supportive of whatever he wants to do.”

Arnav's surgery in November 2016 entailed reconstructing the leg with a donor bone, attaching fibula from the right leg, strengthening the entire leg by embedding steel rods, reconstructing the knee and then all stitched together through microvascular surgery, a type of surgery used to reattach the smallest blood vessels, as the final step of a 16-hour process.

Arnav’s pursuit of cycling again continues to pedal him forward and he uses that finish line as an inspirational endpoint for his journey.

“It’s my passion and it’s gotten me through this,” Arnav said. “Just knowing that I can race again after this.”

Arnav completed his final chemotherapy session in late April, which means the reconstructed bone will finally begin to heal. Throughout this entire process, there’s been an outpouring of support from his community, family and friends to help keep him going. 

“There were so many people we don’t know who have come and said, ‘Whatever you need, we want to help,’ and they have helped. It is amazing,” said Nitin. “Having a whole village around you is very important because you can’t do it by yourself.”

Even stronger than the rallying community is the bond between Arnav and his twin brother, Dhruv.  Already connected by their cycling commitment, this entire experience has brought the two even closer.

“Dhruv has not even once said, ‘I have this party to go to,’ or ‘I have this fun event with my friends,’ he has canceled all of those in a heartbeat and said I want to be with my brother,” said Nitin. 

“I think our bond really got stronger because he was really the only person I could play with,” said Arnav. “I think that just made our bond thousands of times better and it just grew tremendously.” 

The family’s resolve remains powered by Arnav’s courage and relentless positivity. That’s been the biggest takeaway for Nitin, who urges other families to maintain a positive outlook to help them through difficult times no matter what. Arnav knows that sharing his story of hope through Alex’s Lemonade Stand Foundation will help plenty others facing the same challenges as him.

“I think that getting the story out there so more people will know that there’s still hope and there’s a light at the end, that’s awesome,” said Arnav.

Going forward, Arnav’s dream is getting back on that bike, something he hopes to do by December. Beyond that point, he remains unsure, even if his parents may be pushing him towards becoming an osteosarcoma surgeon. 

“Who would be more empathetic to their patient than he could be?” Nitin said.

Missed the beginning of Arnav’s story? Read Part 1 here.

This September, Arnav and his family will join Alex's Million Mile, and help us go 1 million miles and raise $1 million for childhood cancer research! You can join, too! Get the details here.

 

 

 

 

 

 

June 19, 2017

 

 

by Adam Paris, ALSF

“No, I want to compete,” Arnav said as he picked his bike up off the ground.

Despite having just fallen off his cycle and shattered his helmet, Arnav was insistent on finishing the cycling competition. Race officials cautioned him against continuing, but there was no stopping the persistent teen. Off he went, finishing 9th in the race despite his early tumble. 

That same will to barrel forward, no matter the obstacle, would drive Arnav during a far more grueling fight of his life against childhood cancer. 

At the age of 14, Arnav was diagnosed with osteosarcoma, the disease that would cost him the ability to ride. It’s the most common form of childhood bone cancer, although there are only 400 known cases of osteosarcoma in the United States.  The disease develops from the cells that help create growing bones and happens more frequently in teenage boys in the midst of a growth spurt. For Arnav, a National Honor Society member and winner of the Pennsylvania Academy of Junior Science competition, the diagnosis took away one of his passions in life. 

You can’t ride a bike if you don't have a working leg. 

The Wheels Start Turning
Biking was an integral part of Arnav’s life since he was 8. Ever since his father picked up the sport to support a friend with multiple sclerosis, Arnav and his twin brother Dhruv were enamored with the sport. Later, their science teacher and family friend noticed the duo cycling and suggested that Arnav and Dhruv train at the local outdoor professional cycling track. The obsession was instantaneous and their passion and brotherly bond only grew.

“It made us both more competitive and want to get better than the other; so we worked harder and harder,” Arnav said. “I think it’s good to have some friendly competition around.”

Arnav and his brother competed at the local, regional and even national levels. Arnav’s favorite competition is endurance based sprint races. He won a state competition and beat out cyclists in age groups older than him. Even after riding in a Northeast regional race that encompasses 13 states, Arnav and Dhruv weren't satisfied with accolades on a regional level. Both of the brothers eyed a place in the national competition and signed up for the USA Cycling Elite & Junior Track National Championships. 

A week or so before the Championships in late July 2016, Arnav started mentioning his leg bothered him. The sore calf and lower leg led to a noticeable limp at points, but that seemed typical for an athlete whose training regimen required four to six hours of intense training per day, six days a week. The typical rest, ice, compress and elevate (R.I.C.E.) tactic proved ineffective at curbing the pain. Despite the injuries, Arnav persisted and went to Nationals brimming with optimism. On the day of the competition, more than 50 athletes participated in his age group starting with the initial heats. From there, Arnav emerged to finish a respectable 18th place and his brother wound up 10th overall. Despite the joy at his accomplishment, Arnav’s pain didn’t disappear.

First, a masseuse massaged the aching limb and suggested they see a doctor. A week later, Arnav saw his general physician, who quickly referred them to a sports medicine specialist. Upon looking at his leg, the doctor said X-rays and an MRI would be necessary. Within days, they discovered the osteosarcoma in Arnav’s left leg. The disease would require extensive surgery on his leg. 

Arnav was forced to pump the brakes on his cycling career and face his cancer diagnosis with the same relentless spirit he gave to cycling.

Want to read more of Arnav's story? Read part 2 here.

This September, Arnav and his family will join Alex's Million Mile, and help us go 1 million miles and raise $1 million for childhood cancer research! You can join, too! Get the details here.

 

 

 

 

 

May 15, 2017

by Trish Adkins, ALSF 

In 2000, 4-year-old Alexandra “Alex” Scott asked her parents to help host her first lemonade stand in her front yard. Alex had been battling neuroblastoma since just before her first birthday and wanted to do something to help other kids battling cancer feel better. Alex raised over $2,000 at her first stand and kicked off a legacy of lemonade stands and hope. 

Nine years later, 10-year-old Quinn Clarke was fighting his second battle with cancer. Like Alex, he asked his parents to help him do something to help other kids. Quinn wanted to hold a kickball game to raise money for research. More than 500 people came to support him and he inspired a movement! People everywhere, even in Australia, began to hold kickball games to support childhood cancer research. 

Now, these organizations started by two amazing childhood cancer heroes have come together to find cures for childhood cancer, one kick at a time! Kick-It, a national charitable athletic campaign for childhood cancer research has officially joined the Alex’s Lemonade Stand Foundation family. We chatted with Alex’s mom Liz Scott and Quinn’s mom Allison Clarke about this new amazing partnership. 

Both Alex and Quinn battled childhood cancer. Tell me about your children and their fight against cancer.
 
Liz:
Alex was a determined, courageous, confident and inspiring child with big dreams and big accomplishments. After her first surgery for neuroblastoma,  doctors told us it was doubtful Alex would ever walk again.  Just two weeks later, Alex slightly moved her leg at our request. I think that shows her determination was always there. Later, she became determined to hold lemonade stands and give the money to her hospital. And when those efforts took off, but her own health was failing, she became still more determined to raise $1 million dollars before her death—and she did it.

But Alex is more than just a girl who battled cancer. She is my daughter and a sister and a cousin and a niece and a granddaughter. She loved fashion and Junie B. Jones and her dog Shammy and her cat Herbert. Her favorite colors were blue and purple. We miss her every day.  

Allison: 
At 6-months-old, Quinn was diagnosed with neurofibromatosis type 1, a genetic disorder that causes tumors to grow along the nervous system. Most tumors are benign, but some can be cancer.  At 20-months-old, Quinn was diagnosed with rhabdomyosarcoma, a type of soft tissue cancer. He immediately underwent surgery to remove the tumor followed by a year of chemo and radiation. 

He was relatively healthy until age 10 when doctors found a large MPNST (malignant peripheral nerve sheath tumor) in his hip. Chemotherapy was not effective and doctors sent him home on hospice. We ended up at MD Anderson for proton radiation therapy and then surgery to remove the tumor and his hip. After surgery, Quinn started an experimental drug. Doctors don’t know if the drug has kept Quinn cancer free or if he is in the 3% of MPNST kids that survive. Quinn had a long recovery process learning to walk with only one hip – which then led to a curve in his spine and spinal fusion surgery. 

Quinn is now a 17-year-old high school junior. He also loves to ski, which he re-learned to do through an adaptive ski program. Despite physical limitations, he never complains, works hard and takes life as it comes! He continues to do well in school and is excited to go to college.

How did battling cancer change your family?

Allison:
It’s hard to quantify how cancer has changed our family. On the positive side, it has made us grateful for each day we have together and we don’t wait to take vacations and do fun things with the kids. Kick-It would not exist if we didn’t experience the world of childhood cancer and it has been personally fulfilling to help others. On the other hand, we all worry that Quinn’s cancer will return and sometimes those emotions can be difficult to manage. 

Liz:
It is hard to say how cancer changed our family because it has been a part of our lives since our family was very young. In addition to losing our daughter, there are many other things cancer took from our family-- worrying and some level of anxiety became a way of life for all of us, which shapes you as a person. On the other hand, we have seen firsthand what has been gained and the good that can come from something so tragic. Alex’s life and legacy are something our whole family is proud of and she gave us a way to continue to have her in our lives; we know how lucky we are in that regard.  

Liz, what about Quinn reminds you of Alex?

Liz:
Like Alex, Quinn was determined to help other kids which took an extraordinary level of leadership in that you have to look past your own pain and challenges to see that others are suffering also. Like Alex, he believed that his age was a not a barrier to making a difference and he created an easy way for people of any age to get involved and contribute to the fight against childhood cancer. 


Allison, what about Alex reminds you of Quinn?

Allison: 
I wish I had the opportunity to meet Alex! I think Alex and Quinn inspired others to get involved because of their belief that anything is possible. The optimism and innocence of kids fighting cancer are amazing. They both wanted to do something to help other kids with cancer and weren’t focused on their own situations. 

What makes the ALSF and Kick-It partnership, so great?

Allison:

We have deep admiration for Liz and Jay, both as the co-executive directors of ALSF and as people. We have been co-funding research with them for years and knew that they had the ability to take our Kick-it program to the next level. Working together, we can have an even bigger impact! 

Liz:
Kick-It and ALSF are such an amazing match. We are inspired by Allison and her husband Kip and just connect on so many levels as parents. We love their energy and how fun they are to be around but recognize how serious they are about making a difference for this cause. I think it is pretty clear why people have gravitated to their family to create the Kick-It movement. The atmosphere of a Kick-It kickball game is fun, positive and inspirational! It so much like an Alex’s Lemonade Stand.  And I think the Kick-It Champion program is such a smart way to leverage the dedication of student-athletes to their sport by turning their accomplishments into funds raised for childhood cancer research.

Curing childhood cancer can seem like an impossible goal at times, but Alex believed that if we all work together, “we can do it.” Today, I know that is true more than ever and could not be more honored to be work together with Allison, her team and everyone involved with Kick-It to reach that goal!   

Kick-It, formerly a program of Flashes of Hope, is a national charitable athletic campaign to raise money for much-needed childhood cancer research. Kick-It partnered with Alex’s Lemonade Stand Foundation (ALSF) this year in order to further the vision of a 10-year-old boy with cancer who wanted to help other kids like him. This partnership emerged from their similar beginnings as both charities were founded by children battling cancer. Kick-It encourages supporters to host charity kickball games in their communities. It also partners with student athletes through its Kick-It Champions program. Athletes dedicate their season’s performance to Kick-It and raise awareness and funds for research. Learn more and host your own Kick-It game here.