A three-decade journey that tested and inspired medical research

Rich Jr. with his father Rich Sr.

There are likely few people who understand the value of cancer research as well as Rich. His life was saved three times by discoveries in bone marrow transplantation that spanned three decades.

His journey began in 1991, when he experienced an unrelenting cough along with pain — sometimes severe — in his chest and legs. He was busy running a family business, and he pushed on, hoping the symptoms would resolve.

The pain — and some nudging from his concerned wife, Diane — finally led him to go to a local community hospital. Imaging and diagnostic tests revealed non-Hodgkin’s lymphoma, a cancer of the lymphocytes, a type of white blood cell. The lymph system is part of the immune system, and runs throughout the body to help fight infection.

“Cancer was the last thing on my mind. I was shocked,” recalls Rich, who was 39 at the time. His thoughts turned to his wife and two sons, one in high school and the other in middle school. He wondered if he would live to see his sons graduate from high school.

When chemotherapy and radiation therapy failed to eliminate the cancer, he somehow remained hopeful.

“I don’t scare easy. If the Lord wants me, I’ll go,” he says. However, he wasn’t giving up without a fight.

His doctor recommended he go to the Johns Hopkins Kimmel Cancer Center to explore clinical trials, research treatments aimed at advancing and improving cancer therapies, particularly for patients like Rich, whose cancers do not respond to standard treatments.

At Johns Hopkins, he met with Richard Ambinder, co-director of the Cancer Center’s hematologic malignancies (blood and bone marrow cancers) and bone marrow transplant program.

Ambinder

Ambinder recommended a new type of treatment called an autologous (self-donor) bone marrow transplant. A portion of Rich’s bone marrow — the factory that was producing the cancerous lymphocytes — would be harvested and treated with drugs to purge it of cancer cells. After treatment with high doses of a cancer cell-killing drug called cyclophosphamide to destroy his remaining cancer-filled bone marrow, his cleansed marrow would be returned by infusion. Free of cancer cells, the bone marrow cells could go to work repopulating a normal and healthy bone marrow.

It was a long recovery. He remained in the hospital for three months, but in time he was back to playing basketball and the other activities he enjoyed.

Ambinder and team kept a close eye on him, but it seemed as though Rich had overcome the cancer.

As the years went by, Rich and Diane were less focused on cancer and more on their growing sons and their activities. His goal of being there to see them grow up became a reality.

Then, after eight years of remaining cancer-free, Rich learned in 2002 that the cancer was back. He and Diane went back to see Ambinder.

“For me, the glass is always half full. My wife, family, friends and prayer were getting me through. All those things are important,” he says. “I asked Dr. Ambinder if there were any treatments he could offer me.”

What Rich and Diane didn’t know was that during the eight years Rich’s cancer was in remission, bone marrow transplant researchers were developing a new kind of bone marrow transplant.

Rich Sr. and Rich Jr.

Pioneered at the Kimmel Cancer Center, it was a type of bone marrow transplant called an allogeneic haploidentical bone marrow transplant.

The jargony words describe a new type of transplant developed with patients like Rich in mind, who do not have identically matching bone marrow donors. Many patients who needed bone marrow transplants could not get them, because they did not have bone marrow donors — typically found among siblings or less frequently from an unrelated bone marrow donor registry.

The “matching” part of the bone marrow transplant is important because it helps prevent a complication known as graft versus host disease (GVHD). In GVHD, the donor marrow — and the immune system contained within it — doesn’t recognize its new host, the patient. Instead, the donated immune system sees the patient as a foreign invader, much like a virus or bacteria, and unleashes an often-lethal attack against vital tissue and organs.

Since the start of the Cancer Center in 1973, researchers had been studying ways to overcome GVHD, and one of their major goals was to learn how to control it well enough to make bone marrow transplant available to every patient who needed the treatment.

Ongoing research at the Cancer Center found that cyclophosphamide, the same drug given to destroy the cancer-filled bone marrow before transplant, could be given after transplant to stave off serious cases of GVHD. Pioneering studies at the Center showed the drug did not harm blood stem cells, so they could repopulate healthy blood cells and bone marrow while also suppressing the donor immune system from attacking its new host.

Rich Sr.

This monumental breakthrough, the culmination of decades of research, had the potential to revolutionize bone marrow transplant, but Ambinder was honest with Rich and Diane. The new treatment was unique to the Kimmel Cancer Center, and at that time, had only been studied in animal models. It was such a radical approach, many other cancer centers were reluctant to believe it could work. Bone marrow transplants without fully matching donors were simply unheard of at the time.

At a crossroads and battling lymphoma for the second time, the weight of choosing which treatment to pursue was overwhelming. Rich and Diane had done their homework and reached out to several other major cancer centers throughout the country. Experts at these centers had different recommendations.

“We could not decide,” remembers Diane.

Rich Sr., Richard Ambinder and Rich Sr.’s granddaughter, Emily. Emily celebrated her birthday by asking for donations to the Kimmel Cancer Center for research in lieu of gifts. The framed photo in the background is of bone marrow transplant pioneer George Santos.

A few months passed as they contemplated their options. Still unsure which way to go, they woke up one morning to the news that The Johns Hopkins Hospital had been ranked #1 in the U.S. by U.S. News and World Report.

The decision was sealed. “It was a no-brainer,” says Rich. “You look for that miracle, and we felt like that was it.”

They went back to Ambinder and asked if the treatment he told them about was still available.

Ambinder explained to them that the ability to control GVHD meant that less-than-perfect matches could now be safely used. Since children are always half-matches to their parents, Rich’s oldest son, Rich Jr., healthy and now 25 years old, could be his bone marrow donor.

If the cancer had come back just a year earlier, this treatment would not have been an option, but now Rich was making history among the first to receive the Kimmel Cancer Center-pioneered half-matched transplant.

Today, hundreds of half-identical bone marrow transplants have been safely performed at the Kimmel Cancer Center, and the approach is now widely accepted, but in 2002, the researchers had just begun to move it from the laboratory to patients.

This time, Rich also benefited from another advance unique to the Kimmel Cancer Center. A nurse-developed and run inpatient/outpatient center opened in 1995, just a few years after his first bone marrow transplant. It moved bone marrow transplantation to a largely outpatient treatment. Rather than spending three months in the hospital as he did in 1991, Rich could live at home in the suburbs of Baltimore with his wife and family and return to the Cancer Center for care as needed.

“I breezed through; no issues.” That’s how Rich remembers his half-matched bone marrow transplant. Although, wife Diane is quick to point out that he never complains.

A few years went by following the half-matched transplant, with Rich Sr. returning to the Cancer Center for regular checkups to monitor for any sign the cancer had returned.

“You hold your breath,” says Diane. Every cough, ache or pain causes concern. Then, they heard the words they prayed for from Ambinder: “We think you’re cured.”

For several years, things returned to normal for the family.

Then, in 2019, Rich Sr. was faced with another serious medical condition. This time it wasn’t cancer. Instead, he learned his kidneys were failing.

Rich Jr., who donated his bone marrow — and as a result, his immune system — to his father was, therefore, a perfect match. With the bone marrow transplant, father and son now had the same bone marrow, so their immune systems were identical.

Ambinder suggested they consider a kidney transplant, and Rich Jr. offered a kidney without hesitation, but Rich Sr. and Diane would not even consider the idea.

They didn’t know if Rich Sr. would even be approved for a kidney transplant given his medical history, but, if he was, they agreed their son as the kidney donor was not an option.

It was hard enough to watch her husband, who overcame cancer twice, face another medical challenge. Diane could not bear the thought of her son, a husband and father of three daughters, putting himself at risk.

Rich Sr. agreed. “Our minds were made up,” he says.

Instead, Rich Sr. began dialysis, a process that uses a machine to do the job of the kidneys, filtering the blood. He was referred to the solid organ transplant team at Johns Hopkins, and was approved for a kidney transplant, pending a kidney becoming available.

Rich Jr. and his wife, Cynthia, were not taking no for an answer, however. They had done their research, and paid a visit to Rich Sr. and Diane, prepared to persuade.

“They would not let it go,” Diane recalls. “We didn’t know what to do. I was worried about my husband and my son.”

Encouraged by the information Rich Jr. and Cynthia presented, showing risks of kidney donation to be extremely low — a fraction of a percent — combined with the realization that Rich Sr.’s health was declining, they were now open to the kidney transplant with their son as the donor.

With the ups and downs of Rich Sr.’s long journey, he and Diane knew to expect the unexpected, but even they could not have anticipated the unimaginable COVID-19 pandemic that was now gripping the U.S.

With the kidney transplant set for the Spring of 2020 — the height of the COVID pandemic — Rich Sr. and Jr. sequestered themselves at home. Despite taking every precaution, Rich Sr. became sick with a respiratory illness. It wasn’t COVID, but he became so ill, Diane had to call an ambulance.

Rich Sr. was taken to a community hospital near their home. His doctors told Diane that her husband’s heart was functioning at only 20%. He went into cardiac arrest three times during his hospitalization, and Diane begged the doctors and nurses to let her stay with him. COVID restrictions prevented it, however, and Diane returned to their home.

Hours later, she received a call from the hospital to tell her that Rich Sr. fell and fractured his leg. It was a spiral fracture, wrapping around his thigh bone like a corkscrew. The injury required surgery, but his heart was too weak to endure the operation. The best doctors could do was to immobilize the leg with a cast that went from his foot to his hip. Worse still, his kidney transplant was postponed until his broken leg healed and his heart became stronger.

Finally, after treatment for a urinary tract infection, which was likely the cause of the fluid buildup that led to his heart issues, and after 10 days in a physical rehabilitation center, Rich began to regain his strength. For the next nine months, however, he remained on dialysis as his leg healed.

In early November 2021, Rich Sr. was cleared for the transplant. Rich Jr. had also completed full medical testing, and was cleared to be his donor.

A date for the kidney transplant was set: Jan. 5, 2022. As the date approached, the family considered everything that could interfere with transplant. Their past experience had shown them how quickly things could change. The possibility of a snowstorm seemed to be the most likely obstacle. Rich Jr. called Johns Hopkins and was reassured that there were steps in place to ensure medical care continued, even amid a snowstorm. “If you can get there, we’ll be here,” he was told.

Despite the family’s preparations and precautions, Rich Jr. tested positive for COVID, leading to another 60-day delay for the transplant surgery. The waiting was grueling for the family, who had already endured so much.

At last, on April 12, 2022, Niraj Desai, director of kidney and pancreas transplant surgery at Johns Hopkins, performed the kidney transplant. With a healthy, new kidney, Rich Sr. began to feel an improvement almost immediately. For Rich Jr., it took a bit longer to recover as his healthy body adjusted to functioning with one kidney.

Rich Sr. refused to leave the hospital before his son, and Diane remained by both of their sides, facing an almost unthinkable burden of seeing her husband and son recover from surgery.

“I was so scared, but the nurses were comforting. They got me through it,” she says.

Finally, things were moving in a more positive direction, and now Rich Sr. was not only benefiting from decades of research, but he was also the inspiration for a new discovery.

Most patients who receive organ transplants must remain on immune-suppressing drugs for the remainder of their lives to prevent organ rejection. However, since he and Rich Jr. had identical immune systems as a result of the bone marrow transplant, Rich Sr. did not require anti-rejection therapy.

Research at the Kimmel Cancer Center was exploring the benefit of combining half-matched bone marrow transplant with live-donor kidney transplant to spare patients the immune-suppressing risks and other side effects of lifelong rejection therapy. Rich was also among the first to have a combined bone marrow transplant and kidney transplant.

Bone marrow transplants have become so safe that, today, patients who require a solid organ transplant and do not have cancer may receive a bone marrow transplant solely to prevent the need for organ rejection therapy.

One of the beautiful things about translational — bench to bedside — research is that the patient is both contributor to and beneficiary of the science. Often, the benefits are realized by patients who come later. Rich and his family know things could have gone very differently. It was not lost on them that patients they had come to know did not survive their cancer battles.

Their enduring optimism throughout this circuitous journey is a testament to the strength and power of a loving family, an unshakable faith in miracles and, as they are quick to point out, a complete confidence in their Johns Hopkins medical team.

Rich Sr., now 70, looks back on his three-decade medical journey with nothing but gratitude, a broad ear-to-ear smile giving testimony to his unbroken spirit.

“We are so blessed. It amazes me every day. I have to pinch myself,” he says. “Johns Hopkins has a piece of our hearts. We are their biggest cheerleaders.”