Local teen battles rare bone cancer. Aggressive growth baffles doctors worldwide

by KIM HILSENBECK

Ashley Pinson of Manchaca is like many 13-year-old girls in middle school; she is active in sports – track, softball, basketball and cheer – has lots of friends and likes to have fun. She has a huge smile and bright eyes.

Ashley Pinson, a 13-year-old student at Dahlstrom Middle School, was diagnosed with Osteoblastoma – a rare bone cancer that accounts for only one percent of all bone cancers. (Courtesy Photo)

The one big difference is that she is battling a rare bone cancer.

But her family and friends say she is not fighting alone.

Back in July, following months of visits to the pediatrician, Ashley, a sixth-grader at Dahlstrom Middle School, was diagnosed with Osteoblastoma that behaves like Osteosarcoma. In other words, a malignant cancer that first appeared benign.

Osteoblastoma is extremely rare, accounting for only one percent of all bone cancers. It is seen more often in males than females at a ratio of three to one.

In a recent phone interview, Ashley’s mother, Marie Pinson, said the pain got so bad her daughter could barely move her neck. And she was getting numbness and tingling down her arm.

“Her pediatrician kept telling us it was a sports injury,” Pinson said. “They told us to give her Tylenol and rest.”

The frustration in Pinson’s voice is easy to hear through the phone.

“I took her to the doctor three times,” she said. “Each time Ashley was worse and each time, they said it was just a sports injury.”

These visits spanned more than a three-month period.

“They never ordered any tests,” Pinson said. “I said they should send her for an X-ray, but they said, ‘no, no, it’s a pulled muscle.’”

In July, this tenacious mom finally took her daughter to Dell Children’s emergency room. Ashley had an MRI.

“Immediately they knew something was wrong,” Pinson said. “They admitted her right away.”

Two days later, Pinson said they performed surgery on Ashley’s spine to remove and replace a disk with a tumor on it.

According to oncology experts, Osteoblastoma rarely acts malignant.

Research from Boston Children’s Hospital indicates “one form of this tumor is considered aggressive because it is very likely to recur after incomplete surgical removal. No reported Osteoblastoma has transformed into a malignant condition. The aggressive form does not metastasize (spread) to other parts of the body.”

But Ashley’s doctors found another tumor; this one is wrapped around a main artery in Ashley’s neck.

“Her doctors had never seen this type of cancer before,” said Pinson. “The pathologist had never seen it. They sent it to the Mayo Clinic in Minnesota.”

In fact, Pinson said doctors at Dell Children’s in Austin consulted oncology experts as far away as Germany; none of them could label Ashley’s cancer, either.

Ashley is currently going through 10 weeks of chemotherapy to try to shrink the tumor in her neck so it can be operated on safely, according to Pinson.

While all this is going on, Pinson and her husband, Michael, can’t help but think about losing another child; their son, Adrian, died in a car accident June 2, 2010, a month shy of his 19th birthday.

Adrian was their oldest of six children.

Pinson and her husband have been through tough times; several years ago, they were in a motorcycle accident together. It left her with 16 broken bones, unable to walk for months. Her husband, a self-employed appliance repairman, was out of work for almost a year from his injuries.

Yet the couple and the family keep fighting for each other. Pinson said the outpouring of family support in response to Ashley’s cancer has been incredible.

“My family started a benefit event for Ashley and a Facebook campaign to let her know she is not fighting this cancer alone,” Pinson said.

The benefit, which will take place from 2-6 p.m. Sept. 30 at the Painted Horse Pavilion on FM 1626 in Buda, will help raise money to cover some of the expenses of Ashley’s treatment.

“The medicine to numb her port [a semi-permanent site for intravenous injections] costs $168 a tube and my husband’s insurance won’t cover it,” Pinson cited as one example.

Then there will be travel and other costs to get Ashley to the Mayo Clinic, where expert oncologists will perform the delicate neck surgery to remove the tumor. Pinson expects Ashley will have more chemotherapy and possibly radiation after that surgery.

The family said that all proceeds from the Sept. 30 event will go to an account set up for Ashley at University Federal Credit Union.

Pinson said she greatly appreciates the money, but what means even more to her is to see how many people are standing behind Ashley in her fight.

Ashley’s family’s efforts have already raised $1,300 on a website called Give Forward.

Donors can write notes to Ashley along with a donation, as did Alfred D. Hernandez, who wrote, “Love you Ashley. I know you can get through this. Just know that we all have your back come what may. You are not alone.”

To donate to Ashley Pinson’s fight against bone cancer, visit www.giveforward.com/ashleymariepinson.

To learn more about the fundraiser for Ashley at the Painted Horse Pavilion, visit www.facebook.com/events/401006066629531.