Diamondbacks Pitcher Supports his Best Friend Diagnosed with Brain Cancer

With his best friend set to undergo surgery for a highly aggressive form of brain cancer, Diamondbacks pitcher Wade Miley was hoping and praying for a sign, some kind of indication that Johnnie Santangelo III was going to be all right.

This was early Tuesday morning. Santangelo was leaving Miley’s house for Barrow Neurological Institute. Miley told him he loved him, and on Santangelo’s way out the door Miley’s dog followed.

“You know how it is early in the morning; I didn’t really wake up good,” Miley said. “I remember him, in a daze I remember him looking back and saying, ‘Don’t worry, Sassy, I’m going to be back to see you.’ That just made me feel good. That comforted me. Him telling the dog that. That’s what stuck with me.”

A day after surgery, things are looking up. Doctors say they have removed the glioblastoma multiforme tumor, and concerns that existed pre-surgery about motor functions or vision problems have been mitigated. They think Santangelo is going to be OK.

“I’ve never been so happy in my life,” Miley said.

It has been a harrowing couple of weeks.

Santangelo and Miley have been best friends since childhood. Santangelo always went by “Little Man,” and it just happened he grew to 6 feet 5. Growing up in Louisiana, the two would hunt, fish, play sports and raise hell.

“Whatever you could think of that kids from the country would do,” Miley said. “There wasn’t a day that went by that we weren’t getting in trouble.”

Most recently, Santangelo, who was drafted by the Kansas City Royals in 2004 but never pitched professionally due to elbow problems, had been running his family’s mushroom farm in Louisiana. But then came the headaches. Bad ones.

“They checked out his nose, checked out his ears and sinuses and all that stuff,” Miley said. “One day his vision got all messed up. They called his dad. His dad thought he was (joking). They took him to the hospital and told him he had a brain tumor. Probably some of the worst news you could ever get.”

Miley heard the news about a half hour before the buses left Salt River Fields for the team’s trip to Australia, and the day after they returned Miley flew to Louisiana. He was worried about how his friend would look, but what he saw was the same old Johnnie. This gave Miley hope.

Every doctor Santangelo visited told him the same thing: the cancer was inoperable. They recommended a laser treatment. Miley mentioned it to Diamondbacks trainer Ken Crenshaw, and a few phone calls led them to Barrow’s Dr. Nader Sanai, who thought surgery was possible. They were told doctors would see him as soon as he could get to Arizona.

And so until Tuesday, Santangelo and his family had been staying at Miley’s house. He went to the hospital early that morning. Miley joined them later and stayed as long as he could, but he was scheduled to face the Giants that day and headed out in the middle of the afternoon.

There was concern about Santangelo not being able to move the left side of his body, but he put those to rest once he came to after surgery, picking up his left leg and fist-pumping.

“I let him squeeze my hand (Wednesday) with his left hand and he almost broke it,” Miley said.

Santangelo is having trouble focusing with his eyes heavily dilated, but doctors don’t think it will last. He watched Miley’s outing from the hospital on Tuesday night with one eye, cursing when Miley hung a slider that Brandon Belt crushed for a three-run homer in the first inning. But Miley settled down, got through seven innings and the Diamondbacks won, and after the game Miley delivered two game balls to his friend.

“He had both of them in his hands, juggling and messing with them,” Miley said. “It meant a lot when I handed those to him.”

Santangelo also gave Miley a hard time for not giving him a shoutout in his postgame interviews.

“He’s a big hunter, so he was like, ‘Get my name out there, I might get a hunting trip out of it,’ ” Miley said.

Miley said Santangelo, who has a 4-inch scar on the back of his head, will probably head home to heal and rest before coming back to start radiation and chemo.

“He’s doing about the best I can imagine,” Miley said. “I was scared to death about what I was going to see. He’s as good as he can be. He’s not out of the woods, but he’s a whole hell of a lot better than he was doing three days ago when that tumor was still in there.”

Link to the story on azcentral.com

 

Ivy Foundation Gives $10 Million in Grants to TGen – will Target Brain Cancer

by Ken Alltucker – Jul. 10, 2012 06:22 PM

The Republic | azcentral.com

A local brain-cancer foundation’s $10 million in grants to TGen started with a question: Why do 2 percent of people with an aggressive type of brain cancer defy the odds and live much longer than others?

Researchers at Translational Genomics Research Institute, or TGen, will use funding from Scottsdale-based Ben & Catherine Ivy Foundation to complete a five-year study that aims to uncover genetic clues to glioblastoma multiforme. The aggressive brain cancer has a median survival rate of about 18 months, though about 2 percent of disease-sufferers live longer.

“Everyone asks how we can cure this disease by focusing on the 98 percent” of people who die within 18 months of diagnosis, said Catherine (Bracken) Ivy, founder and president of the Ivy Foundation. “Nobody has researched why the 2 percent live longer. Genomically, what is the difference?”

The Ivy Foundation will also underwrite a personalized medicine study by TGen that will match brain-cancer patients with drugs based on their genetic makeup.

A pilot study will start with 15 people diagnosed with brain cancer and use whole genome sequencing, which compares the genetic sequence of tumor cells with healthy cells to uncover genetic triggers for the disease. Based on that genetic information, people will likely receive investigational drugs in hopes of halting the disease.

After researchers gather information from the first 15 patients, they will conduct a feasibility study of 30 patients followed by a clinical trial with 70 patients, according to TGen. The study will involve a clinical-trials consortium of more than a half-dozen universities and groups funded by the Ivy Foundation.

Jeffrey Trent, TGen’s president and research director, said that a study with 100 or more people would make it one of the largest personalized-medicine trials.

Trent said that foundations focused on specific diseases will be an increasingly important source of funding for clinical trials that use personalized medicine. Research involving whole genome sequencing, in particular, can be painstaking and expensive, although technology has driven costs lower.

“Groups that fund research that augment (National Institutes of Health) are a huge part of the landscape,” Trent said.

The Ivy Foundation moved from the San Francisco Bay area to Scottsdale earlier this year and has funded more than $50 million in brain-cancer research in the U.S. and Canada. Its goal is to double life expectancy of glioblastoma patients from 18 to 36 months over the next seven years.

Ivy, a Phoenix native, launched the foundation in 2005 to honor her late husband, Ben Ivy, who died four months after being diagnosed with glioblastoma. She wants to expand access to clinical trails for Arizona residents with brain cancer.

“When you are sick, you want to be home,” Ivy said. “One of my primary objectives is to provide access to top clinical trials in Arizona.

“I want more available for the people of Arizona.”

Read more: http://www.azcentral.com/business/articles/2012/07/10/20120710tgen-grants-will-target-brain-cancer.html#ixzz20LDttgPk