The Gift of Hope - As Told by Phil Jones

By Guest Writer - September 13, 2018

As a CBS News Correspondent for 32 years, I reportered on wars, presidents, impeachments, presidential campaigns and political scandals of every stripe. Little did I know that one day I’d be the one making news. I was the first 75-year-old Moffitt patient to receive a bone marrow stem cell transplant from an UNRELATED donor for MDS (myelodysplasia), and this was after another nationally renowned cancer center told me I was “too old” for the procedure. In effect, “Grandpa was pushed off the cliff.” Or, perhaps it was a case of “age-biased medicine.”

As they say on television, those are the headlines: now the details.

My journey began about two years ago while being checked for a blood clot. Doctors found I was anemic and my bone marrow was not producing healthy blood cells. I was told I had “very aggressive” MDS and it was “incurable.” With my wife, Patricia, at my side, the local doctor handed us a page of his handwritten notes listing possible treatments that included “chemotherapy and clinical trials.” We were told my MDS would lead rapidly to acute leukemia and then I would have six months to one year to live. There was one possible cure, a stem cell transplant. At our next appointment with a Naples, Florida, oncologist, I excitedly asked about a transplant. His curt response, “Not possible. You are too old.” I quickly changed oncologists.

Fortunately, I was referred to a world-renowned specialist on MDS, Dr. Alan List, now President and CEO of Moffitt. Dr. List confirmed my diagnosis and put me on a chemotherapy cycle to see if the MDS could be managed. As expected, the chemo did not work. Without hesitation, Dr. List referred me to Dr. Claudio Anasetti, chair of Moffitt’s Department of Blood and Marrow Transplant. Dr. Anasetti is recognized as one of the world’s leaders in innovative approaches for transplanting older patients. With that expertise, I knew I was in good hands.

After going through a complete physical examination, Moffitt accepted me as a transplant candidate. My siblings were not compatible donors, but a “Perfect Match” was located from a list of more than 10 million donors at the National Marrow Donor Program.

As I awaited my scheduled Moffitt transplant, a friend urged me to get a second opinion. So we flew to another preeminent cancer center in another state. After two days, that institution’s Chief of Oncology proclaimed, “I will not recommend a transplant because you are too old and you should ask any doctor who will do it how many transplants he’s done on 75-year-old patients.” I returned to Moffitt and asked Dr. Anasetti that very question. His answer, “None. I don’t have a crystal ball, but we’ve looked you over and you are in good health. We are prepared to do it if you want and if you don’t, I understand.”

Friends said I was brave, but since I was not ready to accept a six- to 12-month life sentence, going for the only “cure” was an easy decision.

I’ll never forget my first night in the hospital. I was facing four days of heavy chemotherapy to wipe out my diseased bone marrow cells in order to reduce the chances of my donor cells being rejected. Maria Garcia, an oncology technician, walked up to my bedside and in a drill sergeant tone said, “I want you to listen to me. I’m going to tell you what you have to do if you expect to come out of here alive. You gotta do what you’re told. You have to have sort of a kick-butt attitude.” As she continued, Maria sounded more like a chaplain. “I’m not a Bible-beater,” she said, “but I carry the church and my faith with me every day, I pray for every one of my patients.” I felt like I was in Maria’s and God’s hands. And through it all, I remembered the words of another friend, “Phil, we’re getting hernias pulling for you.”

On July 4, 2012, a nurse appeared in my room carrying what looked like a blood transfusion bag. It was stem cells from a donor. I was told only that my donor was a 33-year-old man who lived in the United States. The actual infusion of the donor’s stem cells took less than two hours. At my urging, a nurse drew a lighted firecracker on the white board in my room. There were no loud explosions, but it was still the biggest July 4th celebration of my life.

For the next three months I remained in Tampa so the Moffitt team could monitor for any evidence of rejection. I was physically weak, but psychologically strong. I felt as though “I was living a miracle.” My doctors were more cautious. They constantly reminded me that I wasn’t “out of the woods yet.”

After one year donors and recipients are allowed to share their identity and in March of this year my wife (caregiver extraordinaire) and I went to Tennessee to meet the man who had given me a “gift of extended life.” His name is Eric Priest, a Navy Lieutenant. It was an emotional meeting. I told Lt. Priest he had “given new meaning to serving his COUNTRY and MANKIND” and that I didn’t know whether to salute him or hug him. So, I saluted and we hugged. We will be joined at the marrow forever.

Phil Jones and his wife, Patricia.

Mine is a story of “MEDICAL HISTORY.” Prior to August 2010, Medicare would not pay for MDS -related stem cell transplants. Under heavy pressure from the medical community, Medicare Services relented, and hundreds of MDS patients in their mid-60s to their early 70s were transplanted. However, it was a much different story for MDS patients who had reached the age of 75. Nationwide, only FIVE 75-year-olds were given transplants from 2010 through 2012. In unpublished data collected by the Center for International Blood and Marrow Transplant Research, of those FIVE transplanted, two were still alive after one year. I am ONE of those TWO. Since my transplant, only one other Moffitt MDS patient age 75 and older has received a transplant — a 76-year-old woman. Doctors tell me, “I led the way.”

I am now 77, in complete remission, 100 percent donor, with no evidence of MDS. Now this is a “MOFFITT MIRACLE.”

THE GIFT OF TIME

Eric Priest is an ordained minister, a Navy lieutenant and a life saver. To him, none of these things are just a job or a title. He sees them all as his calling, his duty, his opportunity to serve.

In 1997, Eric walked across the stage to receive his high school diploma and he marched into boot camp one month later. While there, he learned he could sign up to be a marrow donor and didn’t think twice when he put his name to paper.

“In 17 years,” Eric says in a pure southern accent, ”I’d gotten a phone call that I could be a match for someone twice before.”

But it was never a perfect match. Until the phone rang that third time. The charm. Eric was stationed at the Naval Postgraduate School in Monterey, California, and studying mechanical engineering when he got a life-changing call.

“They did say I was the best match,” Eric says. “I had to discuss it with my wife. We talked about what was best for us and for our family. It didn’t take us long to decide that this was the best thing for us.”

But Eric couldn’t know anything about the recipient. He couldn’t know a name or a face or hometown. He had no idea that Phil Jones, a 75-year-old man who had been rejected for marrow transplant by other doctors and given just a short time to live, was waiting for Eric’s life-giving cells, through an unrelated donor transplant, a procedure rarely attempted nationwide with an MDS patient his age. All Eric knew was that someone needed him, he was a perfect match and he had an opportunity to serve.

“Everyone makes a big deal over you, but I was back to 100 percent a few days after the procedure,” Eric says. “It wouldn’t be right for me to take credit. The main thing I gave was my time - and a little marrow along the way - but it takes a whole team to be successful. A simple mistake on any portion of the process could have prevented the success.”

Eric made the donation at noon Pacific Time on July 3, 2012. His marrow left from San Diego, California, and made it to Tampa, Florida, by 9 a.m. July 4. But Eric only received little tidbits about Phil. One week after the procedure, he got an update that the donation went well, but he didn’t receive any health updates on the patient for another six months. And he still didn’t know his name. Finally, finally, the two were able to connect the old-fashioned way, through letters, notes exchanged across several states. hey were able to talk on the phone, now knowing each other’s names, their wives’ names, their individual stories. Phil and his wife, Patricia, had been praying with their church for Eric and his wife, Tina. And Eric and Tina and had praying with their church for Phil and Patricia.

On March 8, 2014, Eric Priest and Phil Jones, the men with now-matching marrow, were able to meet face-to-face.

“I was really excited to meet Phil,” Eric says. “I felt like I knew him. I’ll never forget seeing him for the first time walking up from the car. He looked so healthy. He did not look like a 75-year-old man who had been given a year and a half to live and had gone through the process that he went through. Seeing the success of his procedure was the most powerful thing.”

They shared hugs and pictures and stories. And Phil gave Eric a pewter clock with this message: Thanks for adding time to my life. Its home is now on Eric’s nightstand. And it serves as a daily reminder that there’s good to do, good we can’t do alone, but so much good that we can do. When he sees the clock each day, Eric prays for Phil.

“I really think this is much bigger than all of us,” Eric says. “I believe God’s hand has been in this from the beginning. Before Phil knew, before I knew, God was orchestrating it for us to be in the right place, the right time, with the right people. And it’s great to be part of one of His miracles.”

This story was written by Phil Jones, a member of Moffitt's National Board of Advisors

Subscribe

Most Popular

card image alt text

Moving Towards Recovery

10/22/2019 12:00:00 AM.ToString("MMMM dd, yyyy")

card image alt text

Moffitt Ladies Night Empowers Women

10/18/2019 12:00:00 AM.ToString("MMMM dd, yyyy")

card image alt text

Can Fungi Drive Pancreatic Cancer

10/18/2019 12:00:00 AM.ToString("MMMM dd, yyyy")