Erin's anxious wait
By Tom Larson
By Tom Larson
Erin Tanner bounces around her yard as any 9-year-old would after getting off a school bus on a beautiful spring afternoon. Watching the wispy, blue-eyed blond with the shy smile burn off a little after-school energy, it's almost impossible to make a mind grasp the reality that she's actually a seriously ill girl.
There are hints that Tanner needs help. There's the enlarged abdomen, the skinny arms and legs and the slightly sunken eyes that can dance and convey a weary sadness at the same time.
Then mom, Amber, talks about what her daughter has been through, especially in the last two years: gastrointestinal reflux and bleeding, the almost daily bloody noses, the nights with little sleep, almost constant itching and bruises all over her body.
There are the stories of trips to clinics and specialists, operations, endoscopies every two months, countless examinations, medications and encouraging news always seemingly followed by bad. Her kidneys are failing and, mom says, her pancreas and other digestive organs are working overtime.
Tanner was born with a rare liver disease called biliary atresia, and treatments have helped her pack a lot of life into her nine years. But now, without a transplant, it might be all the life she'll know.
"She knows the consequences if she doesn't get the transplant," says her father, Robert. "She doesn't understand the severity; she knows, but she doesn't. She treats every day like a regular day. She does what a regular 9-year-old does, and we try to make it as normal as we can. But you can't ignore what's happening."
Fortunately for Erin and her family, the Morris-area community isn't ignoring Erin's plight.
Beginning today, friends, family, classmates, teachers, her parents' co-workers and Thrivent Financial have organized a series of fundraisers to help offset some of the exorbitant medical costs and the expense of running a household that includes two other children while Erin waits on a transplant list.
Today, from 9 a.m. to 1 p.m., there is a rummage and bake sale at the Morris American Legion in Morris. Those wishing to help can bring baked goods, items to donate to the sale, or donate funds.
A spaghetti dinner is set for Thursday, May 21, from 5 p.m. to 7 p.m. at the Morris Area Elementary School cafeteria. Cooks, servers or donations are welcome.
The Stevens County Museum, where Erin's grandmother, Tina Didreckson works, has organized a finger food potluck for Thursday, May 28, from 5 p.m. to 6:30 p.m. at the museum.
Robert's employer, Westmor Industries, has a potluck scheduled for May 20, and the Erin Marie Tanner Fund has been established at Bremer Bank in Morris.
Transplant only option
For all her nine years, Erin Tanner has battled biliary atresia, a serious but rare disease of the liver that affects one in 10,000 children.
According to the National Digestive Diseases Information Clearinghouse, the cause of biliary atresia is not known, and treatments are only partially successful and it is the most common reason for liver transplantation in children in the United States and most of the Western world.
Erin was jaundiced as a baby, but when her condition didn't change after a month, she was diagnosed.
With no or an impaired bile tract between the liver and small intestines, bile builds up in the liver and cirrhosis begins.
She was treated at Children's Hospital until she was 3 years old, and then continued treatments through the University of Minnesota.
"She was OK until two years ago," Amber said. "Then she had a (gastrointestinal) bleed. She was throwing up blood and we had to get her to the hospital right away. If you ask her what she remembers most, it's that she got to watch DVDs on the ambulance ride."
Later, a surgical procedure to open the duct to rid Erin's liver of bile failed.
"The only option left is to do a transplant," Amber said.
Waiting for the call
Erin takes five medications in an attempt to keep her systems functioning, but she tires easily and can't keep up with her friends and classmates all the time.
She's been on active status on the U of M Medical Center's transplant list since late April. Meanwhile, Amber and Robert are tending to son Ethan, 6, and daughter Emma, 1, as constantly tackling the myriad details related to medical costs, insurance and what to do to keep the family structured if Erin undergoes a transplant, which could means months in the hospital.
Robert will stay in Morris to work, but should Ethan and Emma go with mom and Erin to the Twin Cities? Or should they stay with dad? Either way, child care will be needed and Amber will have expenses living away from home with Erin.
"It's so much we can't even comprehend what we're going to do," Amber said.
Amber had to leave one of her two jobs to take care of Erin, and Didreckson has been organizing the fundraisers and seeking donations.
The medical bills, insurance options and dealings -- what will be covered, what won't? -- often leave the couple dizzy.
"We didn't quit our jobs to live off benefits," Robert said. "We're trying to sell anything we have of value. It's going to be a lot for us, but at the same time we can't take away from the other kids."
One day, one
appointment at a time
The family initially thought Erin might be able to postpone a transplant until she reached her teens, but that's no longer a realistic goal. But they are confident they will get a call soon and they are thankful for all the help they're received from so many people.
"It's hard watching her, knowing the next day we could get the call and the next day she could be gone," Robert said. "It's very, very promising, but there's always doubt in the back of your mind."
"It's hard," Amber said. "I'll be washing dishes or doing a load of laundry and I'll just burst into tears. We take it one day at a time, one appointment at a time."