Joseph Bailey didn’t feel the volleyball-sized tumor growing around his kidney until he was on a cruise with his wife in October 2012.
He had back pain and became short of breath, but it would be months before he found out what was causing the trouble. As the tumor grew, it pressed on his stomach, taking away his appetite and leading to weight loss. It seemed like a good thing, since Joseph needed to lose some weight. But his wife Helen, who has been with him for 35 years, knew something wasn’t right.
After months of doctors’ visits, Joseph’s urologist found a mass on his kidney. He told the Baileys it would take a large team of people to remove it. It was so serious, Joseph retired from his job as a Jacksonville Human Rights Commission investigator. Less than a week before the surgery, however, a CT scan revealed additional serious masses on Joseph’s other kidney. It was so unsettling, the urologist excused himself from the case. Joseph needed someone more qualified to handle his surgery.
The Baileys, who have a strong Christian faith, said God led them to UF Health Jacksonville. Several people recommended the hospital, including Kelly Brown, PhD, their pastor at Greater Mt. Vernon Missionary Baptist Church. He had undergone a kidney transplant there.
When the Baileys sat down with Christopher Williams, MD, they instantly liked him, though they couldn’t help noticing he looked younger than their own daughters. But thankfully Williams was no rookie. The University of Florida College of Medicine – Jacksonville associate professor of surgery is interim chief of urology and medical director of robotic surgery.
Williams immediately ordered new scans of Joseph’s kidneys to get a clearer picture of what he would be dealing with. A MRI revealed there were multiple tumors on his right kidney, and the tumor on his left was so large, it was growing into Joseph’s other organs. Williams concluded Joseph’s best chance of survival was to remove both kidneys. He warned the Baileys it would be a very large and serious surgery.
“Nobody expected him to live through the night”
On the day of Joseph’s surgery, Feb. 22, 2013, a caravan of supporters traveled to the hospital with him. Joseph’s wife, daughters and a large group of family members and friends from church crowded into the waiting area and met his medical team before he went into surgery. When they hadn’t heard a word on his progress three hours later, Helen knew her husband was in trouble.
In the operating room, Williams found that Joseph’s largest tumor was so massive, it spanned 10 inches long. Once removed, it would fill a large bucket. But first, he would have to cut into multiple organs to detach them from it.
“The mass was just stuck to everything: The pancreas, colon, spleen, posterior body wall,” he recalled.
Williams had never seen anything like it, though he expected the complication ahead of time. To deal with it, he asked assistant professor Omeni Osian, MD, interim chief of cardiothoracic surgery, to assist in the surgery.
“The tumor was in close proximity to just about every vital structure you have in the abdomen,” Osian said. “We were taking turns getting the tumor free and holding pressure to stop the bleeding (from organs the tumor was being removed from).”
Neither surgeon had significant experience in removing the colon and pancreas. Thankfully, UF Health Jacksonville is the one hospital in the region with a Level I trauma center, where a team of general and specialized surgeons is always ready to step in. So in the middle of the surgery, Williams asked associate professor of surgery J. Bracken Burns Jr., DO, MS, to join them. With his assistance, they were able to spare Joseph’s colon and part of his pancreas.
When they reached Joseph’s spleen, they found that the tumor was bonded too deeply with it to salvage the blood-filtering organ. Burns immediately performed a splenectomy on Joseph.
Once his spleen and left kidney were removed, Joseph began bleeding heavily. The three surgeons worked for hours to stop the bleeding and keep Joseph alive. Twice, they had to resuscitate him.
“At one point I found myself holding pressure at multiple points of bleeding while the other two worked. He almost died in the operating room, and I’m still surprised today that he’s with us,” Osian said. “It shows you what the human spirit – and collaborative work – can do.”
Williams said Joseph was the sickest patient he had ever treated.
“Nobody thought he was going to live through the night. If he had gone anywhere else, I don’t think he would have,” he said. “He started out with a private urologist. If they had needed a thoracic surgeon or a trauma surgeon, they wouldn’t have been able to get there in time.”
“All we can do is pray”
When Williams finally returned to the waiting room, Helen knew what he was about to say by the look on his face.
“He told me, ‘At this point, all we can do is pray. He is a very, very sick man,’” Helen said.
Years ago, she and her husband promised to stay by each other’s side during trying medical situations like this one, and Helen planned to keep her word. For the next four months, she spent each day at her husband’s bedside in the hospital. She kept a daily journal about his care, and there was a lot to write about.
During his stay at UF Health Jacksonville, Joseph lost more than 100 pounds. An estimated 10 to 15 of those pounds came from the seven tumors that engulfed his kidneys. He also lost both kidneys, his spleen, his gallbladder, half of his pancreas and at least one of his adrenal glands. Living in the intensive care unit ( ICU), almost the entire time, he went through nine surgical procedures, came close to death several times, relied on a ventilator to breathe and had to relearn how to eat and walk. He started dialysis treatments, which he has to continue for the rest of his life. But he was alive, and that was a shock even to the team who took care of him.
“I did not expect him to survive. A lot of places wouldn’t have given him a chance or even been willing to do the surgery in the first place,” Burns said.
Virtually everyone who worked in the ICU had a role in Joseph’s care during his stay. Williams checked on the Baileys even on his days off. Burns saw Helen so often, he joked that she was on the clock more than he was. And Osian figured out that an antifungal medication would finally stave off a massive fluid buildup in Joseph’s lungs that he had been battling for months.
“I always knew so much was invested in my husband. Everyone was pulling and rooting for him and doing everything they could,” Helen said.
She became especially close with the nurses who tended to her husband.
“I will never forget them. They told me to take it hour-by-hour and day-by-day. If they saw any little sign that he was better, they told me to keep me encouraged,” Helen said. “I can’t say enough about the ICU. Everyone was skillful, knowledgeable, compassionate, and they showed a genuine concern.”
Osian said Helen, lovingly dubbed Mama Bailey by the staff, was a “rock” throughout the process.
“The patients usually aren’t awake through the toughest parts, so it’s the family that has to endure the worst. Most in that situation give up or get frustrated. But she never wavered. She saw us fighting for him,” he said.
Helen would later say it was the toughest time in her life, but she knew she had to stay strong for her husband and for all the family, friends and church members who were supporting them.
Home at last
After an unheard-of 126 days in the ICU, Joseph finally left the hospital to begin therapy at Brooks Rehabilitation. When he finally went home, he’s not ashamed to admit that he “cried like a baby.”
The Baileys later returned to UF Health for a follow-up visit, and Joseph met a number of people he couldn’t remember taking care of him. One of them was Burns, who dropped his telephone in the middle of a call when he saw Joseph walk through the door.
“He grabbed us and hugged us and kept saying, ‘You’re standing! You’re standing!’” Helen said. “He told us we made his day.”
Helen made a point of giving back to the staff, too. She and her family treated the day staff to a feast, and then they returned to treat the night staff to another feast. Helen said it was the least she could do after all that was done for her and Joseph.
“I don’t know how it happened that they got all these people in one place, but there are just layers and layers of tender love and kindness. It wasn’t just the doctors, nurses and physician assistants, but it was also environmental services, the clerks, the physical therapy team, the speech and respiratory therapists, the PCAs and the LIFT team. They all made sure we were taken care of.”
A blessed man
Now back home, Joseph said his clearest memory of his long hospital stay is having Helen at his side.
“My highlight was seeing you walk through that door every day,” he told her recently while they were sitting in their living room.
“I had no desire to be anywhere else,” Helen said. “He is not just the man that I love. He is my best friend. We can talk about everything.”
Helen said she missed Joseph’s voice so much during his stay in the hospital that she would call home several times a day just to hear him speak on the answering machine.
“She puts on a granite façade, but she’s really not that tough. She’s in love,” Joseph quipped.
The Baileys regularly return to UF Health Jacksonville for doctors’ visits and treatments. Since he no longer has kidneys, Joseph has to receive three to four hours of dialysis three days a week.
“He’s still considered a sick man –,” Helen began to explain.
“—but I’m a blessed man,” Joseph cut in, finishing her sentence. “Even with all the limitations I have, I’m very, very fortunate. We are both forever grateful.”