A long road to recovery

Wednesday, April 7, 2010
Rica's Snoey's nurse, Pam Kangas, starts the transfusion of Jared's bone marrow. At 3:30 p.m. Feb. 11, the fluid needed to restore the Mountain Home woman's life began flowing into her body. (Courtesy photo)

Her family called it the "bag of life." Drop by drop, the life-saving fluid flowed from the sterile, plastic bag into a line connected into a vein near Rica Snoey's heart.

For Rica, the red-tinged liquid represented a second chance at living a normal life that eluded her for nearly 20 years. It meant no longer fearing a simple handshake or being around someone with a cold.

Her only fear now is what happens during her long road to recovery. Expected to take another several months, Rica has already battled complications made more troublesome with a recent infection. However, they're the expected battles she must face to finally beat her lifelong fight against a rare blood disorder.

"She came down with every side effect you could imagine, even the ones that affect only 1 percent of patients," according to Rica's mother, Amanda Snoey-Holladay. Her mother took a break while cleaning the family's temporary home in Ann Arbor, Mich., to reflect on her daughter's fight for life.

When she was just three months old, Rica was diagnosed with Chronic Severe Congenital Neutropenia, a rare blood disorder affecting approximately one out of every 100,000 people in the United States. The disorder attacks specific white blood cells known as neutrophils which defend the body against bacterial infections. In fact, 75 percent of newborns diagnosed with the disorder don't live to see their first birthday.

Fighting the disease meant a transfusion of bone marrow. Last year, Rica got the break she needed when tests proved marrow from her brother, Jared, was compatible.

In January, Rica took her fight to the University of Michigan Comprehensive Cancer Center in Ann Arbor -- home to the nation's leading experts in fighting the rare condition. To prepare for the transfusion, doctors needed to kill all of her existing bone marrow using what Rica described as "super-intensive chemotherapy."

The procedure was a crucial first step to keep her body from rejecting her brother's life-saving marrow. However, she faced several setbacks taking that first step.

During her chemotherapy and radiation treatments, Rica developed several complications due to her sensitivity to medications. At one point, she had a stroke-like seizure -- a side effect from the multiple medications she needed during her recovery.

"That day was very hard to go through, as well as many of the others," her mother added.

The initial treatment was brutally hard on Rica. She lost all of her hair and fingernails along with 30 pounds in body weight as a result of the chemotherapy and radiation treatments.

And that was just her first battle.

Rica's next fight started the morning of Feb. 11 when doctors extracted Jared's bone marrow. It took six hours to extract the 1,274 milliliters of marrow from his hip bones, which included drilling into the bones to get at the elusive fluid.

With the marrow filtered to remove bone fragments and other impurities, the "bag of life" began pouring into Rica's body three hours after her brother's surgery. It took another 5 1/2 hours for the last of the marrow to flow into her system -- less time than the doctors expected, her mother said.

Doctors expected Jared to take up to two weeks to recover from the medical procedure. However, aside from some stiffness in his legs, the teen was up and walking within two days -- a full week ahead of schedule, his mother said. Two weeks ago, he began competing with the school's track team.

"His recovery was so fast that even the doctors were impressed," Amanda said.

"I would do it again without thinking about it," Jared added. "I am glad I could help my sister."

Despite the teen's contribution to his sister's recovery, Jared feels his sacrifices come nowhere close to the ones made by Rica and the rest of the family.

"I don't feel like I did very much," he added. "There has really been no change for me other than the house, school and people."

Rica's road to recovery, however, may take months to a year. Complications and infections remain her biggest threats to date, according to her mother.

Jared's healthy bone marrow met resistance while trying to graft itself into Rica's bones, known as graft-versus-host disease. A common complication in bone marrow transplant patients, it's similar to "a brother and sister arguing," Rica's mother said. In this case, the argument is whether his marrow can take control and finish its job.

Large doses of steroids helped slow the disease to give the marrow time to graft, Amanda said. However, Rica developed a viral infection during the treatment, causing doctors to reduce the steroid treatment, which caused the graft disease to resurface.

"It's not an unexpected problem," her mother added.

Rica reached a milestone of sorts March 2 when doctors released her from the hospital. For the next several months, she will live in Ann Arbor close to the hospital. Her condition remains so delicate that doctors prohibited her from living anywhere outside of a three-minute drive from the hospital during this phase of her recovery.

The news boosted her spirits since she no longer needs to sleep in uncomfortable hospital beds, Rica said.

However, her condition still remains fragile. She ended up back in the hospital March 26 when her blood platelet levels dropped too low. Even a small scratch could prove dangerous since the lack of the blood-clotting agent would keep the bleeding from stopping. Rica needed a blood transfusion to bring her platelet count back to healthy levels.

"It's a normal thing" the family's had to adjust to during her recovery, her mother said.

Resigned to remain indoors until doctors give her the "all clear," Rica keeps family and friends in Mountain Home posted on her progress. She uses different online forums to post regular updates. The 20 year old speaks volumes about her son, Tavien, who spoke his first word ­-- Mom -- a week into her recovery.

"Life is so precious. I didn't realize that before my transplant," Rica said on Monday. "In more ways than one, it has changed my life forever. Without Jared, my mom, the rest of my family or anyone else that has helped us, I wouldn't have the opportunity to have a long healthy life."

Spending time with her son and reading the letters of support and messages of hope she receives from family and friends, continue to help the 20-year-old maintain her energy and raise her spirits while she recovers.

"I wish I could personally thank every single person that has ever helped us get here and those who still give their continuing support," Rica said. "Being so far away prevents me from doing that, so thank you from the bottom of my heart. Thank you for helping me to realize how important life is... and for helping my family and me get to a place where a miracle happened."

"One thing that would keep us going is counting each and every day as a day of her new life," her mother added. "Rica was a caterpillar with her blood disorder that went through her chrysalis stage of chemo, radiation and grafting and has now evolved as a beautiful butterfly."

On Monday, Rica and her family celebrated the 53rd day since the bone marrow transfusion. At the earliest, Rica and her family would return to Mountain Home in July.

Even if all goes according to plan, Rica knows her treatment is just the beginning to a long road to recovery. Along the way, she could face various complications, including a chance of developing leukemia -- a side effect linked to this type of treatment.

Rica, like her younger brother, has one thing that helps -- a stubborn streak that makes her unwilling to quit. It's one thing that helped her through her recovery, her mother said.

"She simply will not give in," Amanda added.