She was dying. Now she’s not and that’s cause for celebration.
So Stella’s parents, Joe and Elizabeth Arde of Gilroy, threw the 28-month-old an Easter Sunday party to celebrate the one-year anniversary of the liver transplant that changed everything.
“She’s doing great; she just had her one-year checkup and they took away two more of her medications and now she is only on two, she is really doing great,” Joe said.
And she’s eating, said her mother, who saw Stella so dangerously thin before surgery that doctors force-fed her through a tube in an intense effort to stabilize and strengthen her before a donor liver was found.
Stella’s liver problems began shortly after birth and escalated until a related illness began to quickly sap her body of oxygen—a fatal condition without a new liver. So serious was it that Stella jumped up the waiting list for a transplant at Lucile Packard Children’s Hospital.
“We noticed the [good] change as soon as she got out of the operating room, her color was different,” Joe said of Stella, whose plight was reported by the Dispatch last year.
Doctors warned that things could go bad at any moment; they did.
Twice shortly after surgery, Stella showed signs of rejecting the liver. Re-admitted to the Packard hospital, Stella battled persistent fevers while physicians monitored elevating markers in her blood and conducted biopsies.
“We were so worried about rejection and it freaked us out; we learned it’s not something that happens overnight. It happened gradually,” Stella’s dad said.
Elizabeth Arde said, “I was scared. I was afraid more than anything that instead of it helping her we could lose her. You don’t know, you are aware it could happen but you don’t realize it could happen that soon.”
Put on massive doses of steroids, tiny, curly-haired, doe-eyed Stella was hospitalized for several days each time, then went home with anti-rejection medication while her blood was monitored closely,” her father said.
Ultimately, the rejections were “minor,” and there hasn’t been another since June, three months after the transplant, he said.
In addition to fewer medications, her hospital appointments now are scheduled at three-month intervals.
Now she is talking and eating, growing at a normal rate and gaining weight. She hasn’t needed oxygen tubes since shortly after the surgery.
There are some downsides to the anti-rejection medications. She must take them for life, cannot eat an hour before and after meds (taken twice a day) and they make her more susceptible to colds, her parents said. They also must be diligent about washing her hands to help prevent illness or infection.
Joe empathizes with his daughter. They share a bond that he says better prepared him to deal with Stella’s crisis and kept him optimistic.
He was stricken with Hodgkin’s disease at 17 and his parents, too, made countless trips between Gilroy and Stanford to get the care he needed.
During his illness, he had his sperm frozen; the sperm that helped create Stella stayed that way for 24 years.
“I was at Stanford for a month straight when I got my bone marrow transplant and I really appreciate what my parents did for me back then,” he said, adding they all helped one another stay strong through Stella’s ordeal.
“We could not have done what we did for the last two years without each set of parents,” he said, referring to John and Trudy Arde and Zeferino and Josefina Ramirez, all of Gilroy.
Joe said Stella’s immune system will get stronger and that “apart from medications every day, theysay kids with new livers grow up to have a relatively normal life.”
It’s something never far from the family’s thoughts.
When someone remarked to Elizabeth that the transplant had given Stella another 10 years of life, she was taken aback.
“That was a shocker to me,” she said. “It made me think we have to enjoy her every minute. I am hoping for many, many years but there is always that risk of rejection.”
As was the case when her daughter’s hold on life was so precarious, Elizabeth still turns to her faith for strength—because she has seen it work, she said.
Soon after doctors pushed Stella up the donor list, a liver became available, but not for the dark-eyed Gilroy tot.
“The morning we got the call, that liver had been specifically for another patient,” Elizabeth recalled. “Because that patient was not stable enough for surgery, they had to contact the family that lived closest to the hospital and we were the closest; it really was a miracle.”
