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Marrow transplant recipient gets second chance at life

Rose Alvarado has never met the man who saved her life.

Rose, of Kansas City, received a marrow transplant in early August, almost four years after she was diagnosed with Myelodysplastic Syndromes (MDS) cancer. Defying doctors’ prognoses that she would only live a few months to a year, she had been matched with a stem cell donor. Her husband, Mike, says the family was told very little about the donor – only that he was male, 32 years old, likely lives in Western Europe, and was a 100-percent match.

The unidentified man was one of several people whom Rose has never seen in person, but who contributed to her victory over cancer. It’s a happy ending to a story fraught with the physical, mental, spiritual, and financial pain that those diagnosed with cancer know too well.

Some might have been on hand at the Sept. 9 marrow donor registry drive, which took place at the Hispanic Chamber of Commerce of Greater Kansas City. The drive was sponsored by Be The Match, an organization dedicated to raising awareness about the importance of becoming a marrow donor. After all, the life you save could be that of a person who lives down the street or on the other side of the globe, according to Jackie Daniels, Rose’s daughter.

“It makes me proud to be a part of today because somebody gave my mom a second chance,” Daniels says, her voice choked with tears. “It gives us a chance to give back to people who have given us so much.”

That giving is especially important in the Hispanic and African-American communities, according to LaGail Chisholm, community engagement representative for Be The Match.

“People of color all across the board need to get on the registry,” she says plainly, adding that the greatest myth regarding getting tested is that it is painful. Nothing could be further from the truth, she adds.

“That’s one of the barriers,” Chisholm says. “They’re afraid of the process. They think it’s painful. The technology (for testing) has come so far now that 85 percent of the time, you’re giving stem cells like you’re giving plasma or blood.”

When you sign up on Be The Match, the organization sends testing kits straight to your home. Take a quick oral swab of your mouth, send it back, and that’s all it takes, she says.

Mike says his wife was one of the fortunate ones.

“You never expect to go through something like this, and there is a need (to sign up for the registry), especially in the Latino population,” he says.

As for Rose, though her transplant was a successful one, the effects of her second cancer diagnosis has sent ripple effects throughout her family since her diagnosis in 2013. Through consultations with multiple doctors from St. Louis to Kansas City, losing her hair, enduring chemotherapy treatments, and other treatments, however, one thing kept Rose motivated to beat her illness.

“I think it’s her grandkids that keep her going,” Mike says. “When she was first diagnosed, all she kept saying was, ‘I don’t want to die.’ One doctor said, ‘Look, you’ve got a slim chance at making this.’ He gave her three months to a year, so we needed to start treatment right away.”

Three months turned into a year, and one year into two, and two into three. Rose’s late-summer transplant gave her renewed hope, but on the financial side of things, the Alvarado family needed help with the bills. Oh, the bills.

The family has insurance, but there were still the physician copays. The 16 prescriptions that needed monthly refills. The doctor’s visits. The visits to specialists. All of that in addition to regular home and utility bills, too.

Like many in her situation, some of Mike’s friends in the East Indian community set up a Go Fund Me page to help alleviate some of their financial struggles. They had tried before, throughout her first struggle with cancer, but with little success, raising only a few hundred dollars.
This time, friends and strangers alike rushed to their aid – and in a big way.

“I didn’t expect a lot out of it,” Mike recalls. “Suddenly, this thing just took off, and we had people we didn’t even know making $500 or $1,000 donations. We finally had $14,000, we had people donating through Paypal, they’d drop off envelopes with cash, and that generated another $5,000 or $6,000.”

The India Association of Kansas City came through with even more funds for the cash-strapped family when it sponsored the Kansas City India Fest, where merchants made jewelry, food, and henna tattoos, with a portion of the proceeds going to the Alvarado family.

“Last weekend, they presented us with a check for $7,000,” Mike says.

The financial help has been a blessing, but Rose still has treatments to endure as her body fights off viruses throughout her recovery.

“Her body is fighting the donor, which is normal,” Mike explains. “Once she got the transplant, she started on chemotherapy again to slow that process down and try to get it under control. The treatments are hard on her – the chemo, the drugs. There are times when she doesn’t know where she’s at or what she’s talking about. But she keeps saying, ‘I’m going to beat this. I’m going to do it.’”

Ramona Urbina, a nurse at KU’s Bone Marrow Transplant Clinic and a friend to Jackie, says she is confident that Rose will do just that.

“Rose is putting on a good fight with cancer … and going through this process, I know it is a very challenging time for their family,” Urbina says. “A lot of times, the patients have to be in isolation from the outside world. Your world is definitely changed.”

Both Mike and Chisholm say education is key to people of all communities.

“You can save a life,” Chisholm says. “You can give a mother back to her children. You can give children back to their parents.”

For more information on marrow donation or to request a test kit, visit www.bethematch.org.