The Harkers and Stanleys with MPRI Radiation Oncologist Andrew Chang.

At first glance, Sami Stanley and Chandler Harker seem to have nothing in common. She is a seven year old who loves to dance. Thirteen-year-old Chandler is into sports. He lives in Indianapolis. Sami calls Muncie, Ind., home.

Because they both have a brain stem tumor their lives and those of their families have become forever entwined. In the quest to find the best treatment option for their children, the Harker and Stanley families discovered each other – and the Midwest Proton Radiotherapy Institute (MPRI).

“If you had asked me to draw up exactly what I wanted in a treatment, MPRI would have been it,” says Chandler’s father Steve.

“Radiation is a scary word,” adds Sami’s dad Matt. “But the treatment we were most scared of has been the best.”

This is the story of the journey that brought the Harker and Stanley families together — and finding the treatment they hope will make their children’s lives as “normal” as possible.

Chandler
Chandler’s parents knew early on that something was wrong. Despite normal CT exams when he was two years old and again at three and a half, bouts of nausea and vomiting continued. At five, another MRI finally revealed the tumor they suspected but could not see.

“The tumor’s location on the brain stem made it inoperable and difficult to treat,” says Steve.

The family sought care in North Carolina at Duke University’s Preston Robert Tisch Brain Tumor Center. When Chandler’s headaches and dizzy spells became too intense, doctors there recommended 24 months of chemotherapy.

At the end of the two-year treatment, the tumor stabilized and Chandler’s symptoms diminished. He was eight and a half years old.

“At that point, we just hoped we could buy him some time for science to catch up and a new treatment technique to be developed,” says Steve.

Sami
Unlike Chandler, Sami’s symptoms came on fast and furious — her brain tumor, called a juvenile pilocytic astrocytoma or JPA, was diagnosed in one day – just one month shy of her fifth birthday. By that evening, her parents Matt and Elizabeth reluctantly agreed to surgery, only to learn that because the tumor sat on her brain stem, it was inoperable. Her doctors recommended more than a year of chemotherapy.

“That just didn’t sound right,” says Matt.

Another family who knew the Harkers recommended they learn more about Chandler and his treatment.

“We knew right where they were, exactly what they felt,” says Debbie. “You get so much information all at once, you can’t absorb it. We couldn’t give Matt and Elizabeth medical advice but the one thing we could give was a sense of comfort.”

The Stanleys decided to consult with the same specialist the Harkers saw at Duke, who recommended chemotherapy for Sami that could be performed near their home at Riley Hospital for Children in Indianapolis.

“Steve and Debbie gave us words of encouragement,” says Elizabeth. “Chandler had a similar treatment that was very successful and that gave us a lot of hope.”

Sami underwent a year and a half of weekly chemo without a problem, but a year later, her symptoms returned. In May 2010, an MRI revealed her tumor was growing and Riley referred the Stanleys to pediatric radiation oncologist Andrew Chang at MPRI.

“Proton therapy is non-invasive, there is little pain involved, and it offers the success rate we were looking for,” says Matt. “It was by far the best option. There was nothing to think about.”

When Sami began her six weeks of treatment at MPRI in June, her mother posted the news on Caring Bridge, a website where friends and family — including the Harkers — can stay abreast of Sami’s health.

“We knew they were on a different journey at that point,” says Debbie, who had never heard of MPRI. “Because of Chandler’s age, we avoided radiation options because his brain was still growing and developing.”

But Debbie and Steve knew their lives were changing too. Chandler’s symptoms were also worsening — his bad mornings were lasting all the way through lunch. They moved up an MRI scheduled for August to June.

After the MRI revealed the tumor was growing, their doctor at Duke said they should begin thinking about radiation. When Steve showed him an ad that he saw for MPRI, he said that was exactly what he recommended.

Now it was time for the Harkers to learn from the Stanley family.

“Matt told us how wonderful Dr. Chang was,” says Steve. “We went from feeling so bleak to so encouraged, because proton therapy seemed like the magic bullet we were always hoping for.”

Within a week, the Harkers visited MPRI, and Chandler began his 30 treatments over six weeks on July 14.

“The staff at MPRI is great,” says Steve. “We’ve been to so many doctors, hospitals and emergency rooms and I’ve never seen a staff that good and friendly that does their best every day without exception.

But the best part, says Matt, is that there is no pain and minimal side effects for Sami and Chandler.

“As long as the kids are feeling better, that is all you want,” says Steve.

Even before his treatments were completed, Chandler was golfing — first thing in the morning and walking the course instead of using a cart.

“He’s having the best mornings he’s had in … we can’t remember how long,” says Steve. “When Chandler is having a good day, he says it’s so much better than a normal kid’s good day. He gets so much out of it, he goes to bed exhausted.”

For that, and for each other, the Harkers and Stanleys are deeply grateful.

“A lot of families have it a lot worse than we do,” says Steve. “We’re so lucky to have what we have.”

“As families, we’re connected,” adds Debbie. “Our journey’s not over, it’s just beginning.”