In honor of Childhood Cancer Awareness Month, we will be sharing a series of stories about some of our incredible patients who have overcome cancer or are currently fighting the disease.
In the beginning of June 2012, Jake Steiner was on top of the world. At age 18, he had just graduated high school and was looking forward to working as a camp counselor at the Museum of Flight in Seattle over the summer. He would then be heading off to college at Santa Clara University in the fall. Life was good.
That is, until one week after graduation.
Jake had noticed a pain in his leg and he had a bump on the backside of hip bone that was about the size of his hand. He thought he had just pulled a muscle and a little TLC would take care of it, but his dad took him to a doctor because the bump was so large.
It was then that he got an MRI and received some of the worst news of his life: He was told that the bump was a malignant tumor, and after three weeks, he learned it was Ewing sarcoma. Ewing sarcoma is a bone cancer that mainly affects children and adolescents between the ages of 10 and 20 years old. It’s the second most common bone cancer in children, but only accounts for about 1 percent of all childhood cancers. There are about 200 new diagnoses of the disease in people younger than 20 years old in the U.S. each year.
“I didn’t know what my future was going to hold, but I knew I was not going to be able to go to college in the fall, which really bummed me out,” said Jake. “I was also very scared because I thought I caught it too late and I didn’t know if the cancer had spread. I thought I would die young, and that terrified me.”
Hope is found, the battle begins
Jake came to Seattle Children’s Cancer and Blood Disorders Center for treatment because he and his family gladly learned that Douglas Hawkins, MD, associate division chief of hematology/oncology at Children’s and investigator at Seattle Children’s Research Institute, is a renowned expert in treating pediatric sarcomas.
It was at Children’s that Jake had the test that showed if the cancer had spread. Luckily it hadn’t.
“Once I was at Children’s and knew it hadn’t spread, I had hope and realized that I was going to beat it and survive,” said Jake. “With Children’s care and an expert in my specific cancer, I knew I had a much better chance of survival. I am fortunate to have the best care in the world just 20 minutes from my house, and that made the biggest difference.”
Jake started treatment at Children’s the day after his 19th birthday, and when asked about how he felt about going to a pediatric hospital, he said it was his first choice.
“I could have gone to an adult hospital, but I wanted to go to Children’s,” said Jake. “Not only because of Dr. Hawkins, but I’d also rather be treated with kids than with much older people. Kids are far more energetic and for me, it’s much easier to connect with them. The nurses at Children’s are also the best because of the energy they bring and the enthusiasm they have for what they do.”
Jake started an intensive treatment regime of 17 rounds of chemotherapy, 12 inpatient and five outpatient, as well as six weeks of radiation.
On top of it all, the first week he started treatment his grandma died from pancreatic cancer after losing a two-year fight against the disease.
“It was really hard. It just added to the whole situation and just made it worse,” said Jake. “It was a lot to handle all at once.”
On the forefront of research for Ewing sarcoma
Being at Children’s, Jake had the opportunity to participate in a phase III clinical trial for Ewing sarcoma that is being led at the hospital by Hawkins and is through the Children’s Oncology Group (COG). COG is the world’s largest clinical trials group that’s devoted to childhood and adolescent cancer research. Hawkins is the principal investigator for COG activity at Children’s, a member of the COG Bone Sarcoma Disease Committee and chair of the COG Soft Tissue Sarcoma Committee.
The trial is studying the effectiveness of combination chemotherapy, or adding an extra chemo drug, topotecan, to the standard treatment for Ewing sarcoma. This combination chemotherapy has showed positive results in a previous trial where it was used in treating recurrences of Ewing sarcoma.
“The goal is to determine if adding an extra medicine to the standard chemotherapy for Ewing sarcoma improves the chances of being cured,” said Hawkins. “Drugs used in chemotherapy work in different ways to attack and stop the growth of tumor cells. We’ve learned that the best way to treat cancer is to use combinations of chemo medicines that prevent cancer cells from becoming resistant to the drugs.”
Jake said participating in the study just meant he had an extra drug and a few extra treatments, which he says was definitely worth it. Especially since the trial treatments were outpatient, meaning he got to go home at the end of the day.
“Participating in the trial gave me even more confidence that I was going to beat my cancer, which was great,” he said. “While they won’t know for a few years if the extra drug helped, I’d like to think it did because I am doing well today.”
Hawkins said that it’s imperative to have patients participate in clinical trails like this one.
“We would never make progress in the way cancer is treated without the help of our patients in research and clinical trials,” said Hawkins. “It’s also great because patients then become part of something bigger that will help other people in the future.”
Life after treatment
After 10 long months in and out of the hospital, Jake’s treatment was successful and it ended on May 20th of this year. In looking back on his journey, there were a lot of ups and downs but Jake remembers one moment quite fondly.
“As a big sports fan, the best part of treatment was meeting Seahawks football player Russell Wilson during one of his regular visits in October,” said Jake. “That was by far the biggest and best highlight and I was happy to have that opportunity.”
While Jake was happy to be done with treatment, he now had the task of getting his life back on track.
“I was glad I was done with treatment, but I was nervous for the future,” said Jake. “I had to literally rebuild my life and get a daily routine back that didn’t involve going to the hospital.”
Since May, Jake has been getting his life back in order and has enjoyed his new found freedom of being able to do what he wants. He went back to working at the Museum of Flight as a camp counselor, has been working out to rebuild his muscles and stamina and has enjoyed hanging out with his friends.
But what is he most looking forward to?
“I am so excited to go to college this fall at Santa Clara University,” said Jake. “I will be starting school at the end of September and I can’t wait to begin my journey as a college freshman.”
And how does Hawkins feel about how Jake is doing today?
“Getting our patients through some really hard times to then allow them to resume their life and do the things they want to do is what it’s all about – it’s our goal,” said Hawkins. “Knowing that Jake is going away to school is really great and it’s the whole reason why we do what we do.”
Giving back to future patients
After overcoming his cancer, Jake and his family were inspired to give back in order to benefit future patients. Each year, his grandparents have a bocce ball tournament at their house that includes everything from food and live music, to bouncy houses for the kids. This August, they decided to use the tournament to raise money for Hawkins’ Ewing sarcoma research at Children’s, where participants made donations in Jake’s name.
The tournament was a hit. Jake said about 300 people came and they raised a little more than $75,000.
“It feels great to give back,” said Jake. “I know what I went through and if the donation can help anyone else, possibly by getting someone on the same study I was in, or save someone’s life in the future because of a breakthrough they discover, than that makes me feel great because I know how incredibly important that is.”
Hawkins says it’s an honor to receive donations like this from patients. He also says that philanthropic support is incredibly important because federal funding for research has been dramatically shrinking over the last decade.
“This generosity in the face of adversity is amazing to me,” said Hawkins. “I’m blown away that someone, after dealing with a terrible illness, is able to think more broadly about helping other people. In the current era of shrinking federal funding, this is also essential because the ability to do clinical trials to find cures for children and young adults with cancer depends on philanthropic support.”
If you’d like to interview Jake or Dr. Hawkins, please contact Seattle Children’s PR team at 206-987-4500 or at firstname.lastname@example.org.