Love, pride and respect conquer T cell lymphoma for married couple

July 7, 2016 | by City of Hope

Breakthroughs - Rob Kipper and Craig Prater Rob Kipper (right) and his partner Craig Prater. Photo: Rebecca A. Mendelson

Effective treatment for cancer means more than a great set of doctors and facilities. It requires a culture that recognizes and values how the support of those closest to a patient can play a major part in recovery.

Rob Kipper and his partner Craig Prater experienced this firsthand when a health crisis challenged their domestic tranquility more than a decade ago.

Sometime in 2003 or 2004, Rob developed a rash under his arms and down his legs that refused to go away, no matter what remedies doctors prescribed. The condition got so severe over the following year that he would scratch until he bled.

Eventually, Rob’s lymph nodes became so activated and swollen that he could no longer put his arms down or turn his neck. “It seemed like we didn’t even know who he was, because he was so deformed,” said Craig. 

A pathologist friend of theirs in Palm Springs, California, where the pair was living at the time, strongly suggested that Rob see an oncologist. “At that point, they did a biopsy and couldn’t determine what the problem was,” said Rob. “So they sent me to City of Hope.”

In September 2005, Rob entered City of Hope, where he underwent several weeks of tests, including bone marrow biopsies, which finally revealed the culprit: T cell lymphoma, Stage 4. Rob was immediately given daily chemotherapy treatments, first to reduce the lymph nodes and then to prepare the body’s immune system to receive a bone marrow stem cell transplant.

“The doctors said, ‘We are going to destroy your body, and we’re going to slowly put it back together,’” said Rob. “And they did.”

Rob was eventually sent home while an appropriate stem cell donor was sought. Craig, Rob and Rob’s brothers weren’t fitting candidates, unfortunately, but a match was finally found in Texas through the national Be the Match registry.

In April 2006, Rob received a bone marrow transplant and then spent three months at City of Hope recuperating. It was not an easy time, as Rob spent the first few weeks in a semi-comatose state while his body adjusted to the new stem cells. To help ensure he received the support he needed, City of Hope made accommodations for Craig to be nearby at all times.

“They created a bed for him inside of the room with me,” said Rob. “Craig was my caregiver through all of this. He was there 24/7 – never left my side.”

It was during that tough period that Rob had a profound, chance encounter. When he was finally well enough to leave his room, he shuffled into the observation lounge on the sixth floor and encountered a man sitting there. “He was looking at me, and he said, ‘I was where you were, and it will get better,’” said Rob, full of emotion while telling the story. “And with that, he took me down to an exercise room that he had donated to City of Hope.”

The freely given support of this fellow survivor, a complete stranger, was incredibly moving to Rob at a time of great vulnerability. “Everybody at City of Hope, we’re all on the same level,” Rob said. “I don’t care if you’re a multimillionaire, or you don’t have two nickels to rub together, they’re all treated the same way. Each person helps each other, even in the waiting room, sitting for blood draws or whatever. Everybody is looking out for each other. It’s a unique and wonderful place.”

When he was well enough, Rob was allowed to go home, though for a while he returned twice a week for monitoring under the care of Ryotaro Nakamura, M.D., associate professor of hematology and hematopoietic cell transplantation. These days, he still visits City of Hope periodically for checkups with Behrouz Salehian-Dardashti, M.D., associate professor of clinical diabetes, endocrinology and metabolism, and he gets looked over by his oncologist annually.

“This April was 10 years for me, and I’m doing great!” said Rob, who was originally told he would have just five years to live if he did not treat the condition aggressively.

“His only challenge now is just getting old,” joked Craig, who is now a patient at City of Hope himself. A history of prostate cancer in Craig’s family means that doctors measure his elevated PSA numbers every quarter to try and detect early any advancement toward cancer. “My PSA keeps climbing, but I’ve had a number of biopsies and they’re still saying it’s OK, so I’m just keeping my fingers crossed,” said Craig. “See how boring my story is compared to his?”

Rob and Craig’s story, boring or not, may have had a happy ending, but it also took place in an especially meaningful context. A self-described “Air Force brat,” Rob was born in Albuquerque, New Mexico, and lived all over the world before settling in Kansas City, Missouri, where Craig was born and raised. The two met there in 1969 and have been together ever since – a remarkable 47 years – living for a long time in Palm Springs, where they finally got married in 2014.

When the couple attended City of Hope’s annual bone marrow transplant reunion this May, they saw a poster inviting patients to walk with the hospital’s Pride in the City diversity resource group for lesbian, gay, bisexual and transgender (LGBT) patients and their families at the LA! PRIDE parade in West Hollywood. Though Rob, now 67, and Craig, 70, were hesitant, they decided to get involved because City of Hope had shown their union such respect back in 2006, regardless of their legal status.

“We come from a generation where we could be shot on the curb, fired from our jobs and all those kinds of things for being gay,” said Craig. “We signed up to be a part of the parade just to show our support for City of Hope. There can be a certain discomfort for gay couples, not knowing how doctors are going to accept it. It’s a very nerve-wracking thing. We’d like for other gay couples to know, whether you’ve got all the legal papers or marriage status, City of Hope could really care less. We could not have been more accepted. It was perfect.”

So Rob and Craig, who now live in San Diego, participated in the parade while riding in a convertible as honorary City of Hope patients. They were part of an effort to bring the Be the Match registry to the attention of LGBT community members, who, as of this year, are finally allowed to get bone marrow testing, donate stem cells and save the lives of more people like Rob.

“We could do a commercial for City of Hope,” said Craig, still grateful for the compassion and respect they were shown. “They are off the charts as far as we’re concerned about how they took care of both of us during that period of time. They’re awesome.”

***

If you are looking for a second opinion or consultation about your treatment, request an appointment online or contact us at 800-826-HOPE. Please visit Making Your First Appointment for more information.

 

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