Roller coaster ride

He began a chemotherapy regime at Lawrence Memorial Hospital’s Oncology Center. After nine months of treatments, he was in remission.

In 2008, the cancer returned.

This time, he was advised to get a second opinion at MD Anderson Cancer Center in Houston. Again, he was prescribed chemotherapy. His doctor there said many people live with CLL and most grow old with it and die of something else.

After six months of treatments, Barnes was back in remission.

In January, he developed swelling in his abdomen. The cancer was back for a third time.

Barnes returned to MD Anderson where he was prescribed a more intense chemotherapy regime. His third round of chemotherapy treatments is scheduled next week at LMH.

Until Feb. 16, Barnes was able to do what he loves most — care for patients. Not this time.

“With this one, my immune status is so tapped that I really can’t be around people that much,” he said. “I can’t stay on my feet as well after these treatments. It’s like having the flu, and it will last for about two weeks. Then, the clouds kind of part and I start feeling a little better.”

Awaiting transplant

Barnes’ only cure is a bone marrow transplant because he has an aggressive form of CLL.

The transplant involves an infusion of stem cells from a donor that, it is hoped, would take over his bone marrow and replace his bad cells. Barnes would be hospitalized for a month and then closely monitored for three months in Houston. He won’t be able to work for a year after the transplant.

Barnes said there is a 50-percent success rate.

Dr. Joseph McGuirk, medical director of the Blood and Marrow Transplant program at Kansas University Cancer Center, has said it’s every bit — if not more — complex than a heart and lung transplant.

Recipients receive high doses of chemotherapy and/or radiation to eliminate whatever bone marrow they have left. The patient receives new stem cells intravenously. The stem cells then find their way to the bone and start to grow and produce more cells.

Barnes is optimistic.

“I take it a day at a time. I’ve kind of lived with the cancer now for four years. This is year five. So, I’ve been to the dark side of this, and basically I am grateful for every minute of every day,” he said.

Community drive

Doctors are searching for his life-saving bone marrow match.

When Dr. Carla Phipps heard, she decided to organize a marrow registry drive in Lawrence, in honor of her friend and former partner.

“His patients love him,” she said. “If you talk to people about their doctors, you usually hear a bad story. I have never ever heard anyone say a bad story about Dr. Barnes. I tease him about that.”

Barnes has been Mary McCabe’s family’s doctor for 19 years.

“He always takes all the time that we need in order to address our questions and concerns,” she said.

When her son was seriously ill with bacterial meningitis at Children’s Mercy Hospital, Barnes provided much-needed guidance.

“Rod was there day and night,” McCabe said. “We could call him and he just talked us through different issues so we could make a good decision.”

Barnes is described by patients and staff as caring, compassionate and a behind-the-scenes type of guy. His colleagues were surprised that he agreed to this story. He agreed because he knew the registry drive would help others.

Every day, 6,000 people, like Barnes, are searching for a bone marrow donor. Despite 12 million people on the National Marrow Donor Program’s Be The Match registry, the chances of finding a match are not a 100-percent guarantee.

“This is much bigger than me,” he said. “The more people in that database, the better — absolutely.”

Grateful doctor

Barnes said stepping down from his work was one of the most difficult things of his life.

“I have worked since I was 11 or 12. To abruptly stop practice was probably as hard on me as the disease itself,” he said.

“On Feb. 16, I left the office and I didn’t go back. My partners have graciously filled in for me, and my nurse, Joni (Lawrence), has just been wonderful.”

When he is feeling well, he works on old cars or reads. He talks about picking up a paint brush again.

His wife of 28 years, Mary Barnes, an LMH nurse, said it has been a life-changing experience. They have four children and three grandchildren.

“He’s always been very, very healthy, so it was a shock when we first got the diagnosis,” she said. “We were scared to death.”

Mary said it’s her husband’s optimism that gets them through each day.

On March 9, his daughter started a journal on CaringBridge.org — username is rodbarnes356 — for him.

“It’s a way to tell people that I am not horizontal in bed, sipping water through a straw. I am really up and doing well — all things considered,” Barnes said.

He has been overwhelmed by the well-wishes. His journal has received 2,500 visits and his guestbook has been signed 148 times.

Barnes said he can read only a few messages at a time.

“I am very sentimental and they are from the heart,” he said. “It’s just very touching.”

Barnes has been missed in the office.

“There’s not been many days when we haven’t cried a little bit,” nurse Lawrence said. “Those are big shoes to fill.”

She has worked exclusively for Barnes for 30 years. They often talked about retirement, the day that they would walk out the door — together — and never look back.

“I know that he has a lot of bridges to cross before we get to that point,” Lawrence said. “But, I am very hopeful.”

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HOW TO HELP

Lawrence Memorial Hospital’s medical staff is having a marrow registry drive in honor of Dr. Rod Barnes, who needs a bone marrow transplant.

The details:

• 8 a.m. to 6 p.m. Thursday.

• in Lawrence Memorial Hospital’s auditorium, 325 Maine.

• Must be between the ages of 18 and 60, and in good health.

• There is no cost.

• Process involves paperwork and swab of cheeks. It should take less than 30 minutes.

• For more information, visit www.bethematch.org or call Dr. Sherri Vaughn at 505-2976.

Last year, Lawrence resident Lynn Wilson-Bruce shared her story of being a life-saving donor.