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The Preston Robert Tisch Brain Tumor Center at Duke

Family Scrapbook | Tony Jones

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Tony JonesThis is my brother, Tony's, story. May 8, 1997, Tony was diagnosed with a brain tumor. The family was devastated and thought the worst, of course. Tony was sent to the university hospital in our state from the local hometown hospital. Tony went through a biopsy of the tumor, and found out it was anaplastic astrocytoma. According to the doctors at the university hospital, there was little hope and poor prognosis. They told us that he only had a year to live. He was just 22 years old at the time. He had already had cancer once as a child—Wilms tumor of the kidney. He was treated with chemo and radiation, and underwent a nephrectomy at the age of 3. So, Tony was always a special child to our whole family because we knew that cancer could show its face again at any time.

Our family decided to make the best of the time that Tony had left and take some trips and do things we had never gotten to do. We went to the ocean, which Tony had never gotten to see, went to see an NFL football game, and other things that he enjoyed.

One day, I was watching an evening news broadcast, and I saw a story about a young man who had a brain tumor and was treated at the University of Duke by a Dr. Henry Friedman. Right away I could tell there was something different about the atmosphere there at Duke. There was HOPE after all. I researched and found a phone number and I called the Brain Tumor Center at Duke. A few days later, I received a call one evening, and it was Dr. Henry Friedman (yeah, he called me personally). He wanted to know what type of tumor he had and all the other information, and told me to call his secretary to make an appointment to see him right away.

We had help from our friends and family, and they raised money for Tony, my mother and I to take a greyhound down to Durham. Upon entering Dr. Friedman's office, I could tell that a burden had been lifted. Tony laughed, saying he felt better already. The difference was there was a feeling of HOPE at last. Dr. Friedman told us that day that the chemo that Tony had been taking was not even for the type of cancer he had. That if he would have continued to be treated by the oncologist he was being treated by, he would be six feet under. Dr. Friedman told us that day that he would try one type of chemo, and if that didn't work, he would try something else until he found something that would. Needless to say, we were on top of the world when we left that office that day. No more feelings of dread and that someone had finally given us something no one else had, HOPE!

Tony took Tamoxifen for 5 years total, and it kept the tumor stabilized. We had 4 more additional years with him than we had planned already. He had a long battle ahead of him and always kept his head held high. He was in and out of the hospital a number of times, and always seemed to make everyone around him laugh some way or another. One of his favorite slogans he said when he was telling someone bye was "keep your powder dry and your gun loaded." I guess that was his way of saying he was gonna keep up the fight. Yes, he was definitely a southern man! He not only was battling cancer, but he lost two loved ones close to him during his fight. My brother Brian was killed in an automobile accident in Dec. 2000, and my mother died 5 months after he did in May, 2001. Tony still held on!

During one of his routine visits when he had taken the Tamoxifen for a total of 5 years, his oncologist told us that the Tamoxifen was no longer stabilizing the tumor. It was growing again, and we needed to do something quick. She worked with Dr. Friedman, and they started him on Temodar. He took 3 rounds with very little side effects, and it was hard to believe that it could actually be doing anything. Tony started getting very confused one day and saying that he was cured and he knew it. Actually, we thought he was confused. We took him back to his oncologist for a checkup, and low and behold, it was gone—completely gone! The oncologist said it was a miracle, and couldn't believe it himself.

Tony was a true miracle! He inspired so many, including myself, in more ways than one. During his time of remission, I went back to school and became an RN. I will do everything in my power to spread the word about The Brain Tumor Center at Duke. Let people know that there really is HOPE!

In December of 2004, Tony's left leg started going numb on him. We took him to the local hospital, and they found another tumor. The oncologist there said it was just a small tumor, and that it was in a location that it could easily be removed. We had no idea what we were dealing with at the time. Of course, they transferred him to the university hospital who told us previously he only had a year to live. They were in shock to see him still living when we returned again. They also told us that it was just a small tumor and that it could easily be removed. So we let them operate although my gut told me not to let them. I did not share my feelings with Tony on this at all. They did the surgery and then told us it was a GBM and that they got it all and that it would probably come back. Sure enough, it did. He became paralyzed on his whole left side of his body, and it was growing so rapidly that they couldn't believe he was still living. We did not make it to Duke on time. He was gone by June 7, 2005, at the age of 30.

He lost his life to GBM, but it did not take his spirit. He still lives on in his family and friends memory, and still makes us laugh when we think of funny things he did and said. He fought for 8 years, and lived a very short 30 years upon this earth, but managed to touch so many lives in so many ways. I am sure I speak not only for me but for Tony—thank you for giving us 7 additional years that we could only HOPE for. You gave our family HOPE when no one else would. Above all, you have Tony HOPE when no one else would.

Sharla Davidson and the family of Tony Jones

"Keep your powder dry and your gun loaded."


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Hopeful Resources

 

 

Maintaining hope is not always easy. In times of crisis, you may need extra support and encouragement from your family, your health care team, and other survivors of brain tumors. Here are some resources that may help you maintain a positive outlook.