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Emily's hope: A team working to find answers

9:11 PM, Nov 4, 2010   |    comments
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Their 11-year-old daughter, Emily, was undergoing treatment for an osteosarcoma, or bone cancer, located on her spine. A team of four surgeons and two physicians operated on her for 17 hours in an attempt to remove as much of the tumor as possible. She was then given radiation and chemotherapy treatments in hopes of treating the cancer that remained.

It led to that moment on Oct. 22, 1997.

"We went up and they said that it wasn't working and that she had three months to live, that we should go and do what we needed to do. So we did. We went and played," Jeanette said.

Hearing those words were incredibly painful for a parent. They were equally painful for the physician who spoke them.

"That was one of the roughest days and it will stay in my memory forever," Dr. Lia Gore said. "I remember where we were sitting at the table, who was sitting in which chair."

Emily's prognosis was so poor that doctors gave her less than a 10 percent chance of survival after five years.

On Oct. 22, 1997, the Brown family decided to live every day they had left with Emily to the fullest.

"So what do we do? We throw her in the station wagon and we drive her to the top of Pikes Peak and we're standing out there in the middle of October and the wind's blowing. It's cold, but hey, it was something we had never done before," Allyn said.

They did a lot of things Emily had never experienced. They made a road trip to the Grand Canyon and Las Vegas. They also bought a prom dress for an 11-year-old girl and held a party. Her Make-a-Wish trip took her to Disney World.

"It was surreal thinking about hospice at that time and funeral plans and you are supposed to be at the happiest place on earth. So it was a little surreal," Jeanette said.

While the standard of care treatments had failed work for Emily, Gore didn't give up hope. She learned of a cancer drug called MTPPE. The drug was not approved for use on humans by the FDA, but it was actively being studied on dogs 65 miles to the north at the Colorado State University Animal Cancer Research Center.

"We did a clinical trial on dogs with bone cancer showing that MTPPE was not necessarily a home run, but it was certainly a single or a double," Dr. Steve Withrow, the director of the center at the time, said.

Withrow had been studying MTPPE in dogs for 10 years. He had seen enough success with it to believe it could help Emily.

"The physician has to accept that we're out of choices. Let's try something new. The patient has to accept that we're out of choices. Let's try something new," Withrow said.

To make it possible for Emily to be given MTPPE, Gore had to apply to the FDA for a compassionate use exemption. It has to be demonstrated to the FDA that the patient is out of traditional options.

"We knew that getting that drug was probably one important component of her therapy and there's nothing like having the developers of that drug in your backyard," Gore said.

The collaboration between doctors at The Children's Hospital and veterinarians at CSU was critical in treating Emily. That collaboration continues to this day.

"Everybody was looking for an answer. It wasn't just one person looking. It was a team of people looking," Jeanette said.

Emily received approval from the FDA to receive MTPPE. Her parents were left to trust in the doctors and hope.

"It was blind faith. We totally believed in that team of doctors," Allyn said.

That blind faith led them to a moment when they would learn if that belief was well placed.

"We rescanned her and we expected the tumors to be much worse at that point, and they weren't," Gore said. "It was one of those goose bump moments where you think that somebody's life has been taken away and there's a chance that it is coming back."

After living the nightmare of the Oct. 22, 1997 diagnosis, hearing news the treatments were now working gave hope to Emily's parents. After getting the good news from doctors, they walked to Emily's room to tell her.

"Walking down the hallway to her room, it was like: 'Today is not the day. It's not now. We've been given a reprieve, we've been given another moment, we've been given another day. She is not dying today,'" Jeanette said.

Emily underwent another surgery and continued treatment with cancer drugs until she was found to be cancer free. For an 11-year-old girl, the experience left her wise beyond her years.

"It made me appreciate day to day. I mean it really was, especially in those three months, I'd go to bed saying, 'Yep you're not going to wake up tomorrow.' And then the next morning I'd wake up and say, 'OK, I've got another day. What am I going to do?'" Emily said.

She kept that approach to life as Oct. 22, 1998 approached. It was one year from the day when she was told her life would end in three months. Emily decided it was day that needed to be remembered and celebrated.

"Life ended, but life began. In some ways to me it is a birthday. It is almost my second birthday," Emily said. "October 22nd is my Glad to Be Alive Day."

To celebrate it, Emily wrote her first "Glad to Be Alive Day" letter. In it she wrote, "This day is in honor of the day that they told me I wouldn't be here for last Christmas. Well here I am, alive and well."

She sent the letter to friends, family, doctors, nurses and the veterinarians at CSU who worked on her case.

The letters tell of events in Emily's life and remind people of what is important in life. On her eighth "Glad to Be Alive Day" she wrote, "Whatever the definition or belief of what hope is, what matters, is the fact that you can wake up each day with hope. As long as you can do that, life will be OK, no matter where life takes you."

This year, Emily wrote her 13th "Glad to Be Alive Day" letter. She found an irony in the number.

"As we come to celebrate my 13th Glad to Be Alive Day, I want to stress that the number 13 shouldn't be considered unlucky. In fact, it's my favorite number. Some would say I was unlucky to get cancer, and they wouldn't be right. I find myself time and again marveling at the good that has come from surviving; the exciting opportunities presented that would otherwise have never been possible," she said.

The 13 years have taught Emily and the people in her life about how to live and about hope.

(KUSA-TV © 2010 Multimedia Holdings Corporation)

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