DONATE LIFE ORGAN DONATION AWARENESS-UTAH-A SECOND CHANCE AT LIFE: LIVER TRANSPLANT CHANGES OUTLOOK FOR TWO CHILDREN
"You have to have a lot of patience," Tracy Smith-Lahrman, Arizona's mom, said of his life-long medical challenge. "You spend most of your time worrying."
Meanwhile, in St. George, Annie Rowan was a healthy 6-year-old who loved to sing and dance. In January her mother noticed her eyes and skin were turning yellow. The problem increased and within a matter of days she was in the final stages of acute liver failure with no known cause.
"When Joe (Rowan) called me to tell me the news, I was in complete shock and disbelief," said Michelle Rowan, Annie's mom.
The answer to these two different stories came in the form of one similar procedure - a liver transplant performed for Arizona in Salt Lake City and Rowan in Seattle.
"These two little kids are literally changed forever. They know they're lucky to be alive," said Randal Chase, Annie's grandfather. Chase still lives in St. George, while his daughter, Michelle, and her family moved to Washington state just shortly before Annie's illness.
Both families are still reeling from the magnitude of the experience and while such an extensive procedure comes with myriad ups and downs, at the moment both children are doing well and the families are grateful to have them on the road to recovery.
"Obviously it's devastating," Chase said of the first downward slope on his family's ongoing roller coaster experience. "You have a sweet little child who suddenly is ill for no apparent reason. It's a real crisis. Then there's this feeling of being blessed because the organ transplant came through so soon. Then come the crushing costs."
Doctors still have no idea what caused Annie's illness but in her case, the transplant came just in the nick of time.
"She got on the donor list on Monday and by Thursday they were doing surgery," Chase said. "Probably another couple of days and she would have been gone."
Arizona's time on the waiting list was longer, but when the family got the call that a liver was available, they were ready to go. "You just go into action mode," Tracy said. "You just try to get him there as soon as you possibly can."
In both Arizona's and Annie's cases, family and friends were prepared to donate a portion of their own liver to save their child, but in the end they each received a liver from cadaver donors whose families they have never met.
"I think it's such a great thing. It's a selfless thing that a family did," Matt Smith-Lahrman, Arizona's father, said of the donor.
Arizona's surgery started at 10 p.m. on March 30 and lasted about seven hours. He was released from the hospital on April 23.
"The only thing I know is that I've been sedated a lot of times," Arizona said.
For him, the hardest part of the whole ordeal was, "everything," but "mostly the pain."
He's not in as much pain now and said he "kind of" understands what is going on with him, but "not totally."
Keeping Arizona in the loop is one of the many challenges his parents have faced.
"He's more aware of things than we give him credit for," Tracy said. "I think we forget to treat them as adults or include them in the whole (process)... Everything is about him but he doesn't get to discuss what's going on. He's more out of control than the adults because he has to put his faith in our hands, doctors and parents, that we're doing the right thing."
In Annie's case, Chase said he's seen a maturity in her and an understanding about life, and death, that most children do not have.
"When this little one says her prayers she is always saying 'thank you for allowing me to live,'" Chase said. "That's not the perspective a 6-year-old usually has."
The biggest problem now is going to be each child's ongoing care and the costs associated with the ordeal.
Although the costs of an organ transplant vary based on the organ and the hospital doing the surgery, an average cost for a liver transplant is around $300,000, according to the Children's Organ Transplant Association. Even with health insurance - which often pays around 80 percent for such a procedure - the family is left with at least $60,000 to pay, not including the lifelong medications and other costs like housing and transportation during the child's hospital stay.
"The financial burden is huge," Chase said, adding that his daughter's family has an added degree of difficulty because they moved away from the St. George area shortly before Rowan became ill, so people in this area may not be as apt to donate to their cause. At the same time, the family doesn't know many people in their new home so donations there could be affected as well.
"It's a challenge but what are you going to do? You find a way," he said.
Both the Smith-Lahrmans and the Rowans have teamed with the COTA - an organization dedicated to assisting families of children organ recipients with the fundraising aspect of the process.
"We do the best we can to avoid having a child not be listed (on a transplant list) due to financial concerns," said Lyndsi Bennett, development specialist with COTA.
When a family turns to COTA for assistance, COTA sends a representative to their community to train anyone who is interested in being on the fundraising team. They offer suggestions and help but ultimately the money raised is dependent on the community.
COTA also offers reprieve from some of the usual tax laws associated with this kind of income because "funds are raised for COTA in honor of the patient and 100 percent of all funds raised are available for transplant related expenses," Bennett said.
Without support from COTA, the Kurt Oscarson Foundation and the Ronald McDonald House Charities - where Matt, Tracy, their 6-year-old daughter Lucy and Arizona have been staying, Matt doesn't know what they would do. He and his wife also count themselves fortunate to still have jobs, even with all the time they've spent away.
Matt is a professor of sociology at Dixie State College and Tracy works part time at Eddie Bauer.
"Everyone has been more than kind as far as letting us take time off," Tracy said.
As for the future, the Smith-Lahrmans and the Rowans are taking things a day at a time, grateful for the time they've been granted with their children and the support they've received from family and friends.
"It's strange being on the other side of the transplant because you spend so many years working toward the transplant ... you have to completely change your way of thinking," Tracy said. "You can't really say what is 'normal life' ... but it would be nice to have a more stable schedule (in the future)."
Chase said Michelle has struggled through the experience but he's proud of the way she's come through it all.
"She's (Annie) alive. You start with that and you're grateful," he said.