Countdown to a new liver, new life begins
Stacey Vogl faces a litany of tests in the hope of donating part of her liver to her 10-month-old daughter, Addison.
01:00 AM EST on Tuesday, January 20, 2004
PORTSMOUTH -- If all goes well it will be close to her first birthday when Addison Vogl comes home.
She will have spent the majority of that first year in hospitals. There will have been five eight-hour chemotherapy sessions. She will bear the scars of three major surgeries.
And Addie will have a healthy liver.
In what they hope will be the final chapter in the fight to save the 10-month-old from a rare form of liver cancer, the Vogl family left yesterday for Baltimore's Johns Hopkins Hospital, where doctors will perform the operation intended to give Addie a future.
"I'm more afraid now that it's right here," said Addie's mother, Stacey, an hour before leaving Newport State Airport on a plane ride donated by her husband's employer. "But [Addie is] still happy. She's not getting any more chemo."
At one time the cancer surrounding her daughter's liver was so large it turned Addie's belly button partially inside out. The family thought it was a hernia before a myriad of tests revealed it was life-threatening hepatoblastoma.
Since the diagnosis, doctors at the oncology ward of Roger Williams Hospital have been able to reduce the size of the tumor significantly. But the cancer has retreated around a major blood vessel that complicates any attempt to remove it without removing the liver.
Tubes have been feeding Addie for months. She vomits several times a day. But despite being small for her age, Addie looks like a happy, healthy baby.
She likes toys with mirrors. She sucks a blue pacifier. And she laughs often.
Doctors at Johns Hopkins will not attempt to remove the tumor unless they have a replacement liver ready in the operating room.
Testing will begin today to determine whether doctors can use part of Stacey's liver for the transplant. The hospital has already given her an itinerary for today's compatibility tests:
8 a.m. blood work and an EKG
9 a.m. meeting with hepatologist
10 a.m. meeting with clinical psychologist
11:30 a.m. meeting with social worker
12:30 p.m. meeting with living donor related surgeon
2 p.m. 3-D CAT scan of the abdomen
3 p.m. chest X-ray
"And those are the easy parts," Stacey said.
If preliminary tests show a match, doctors have planned a liver biopsy next week for Stacey. Addie's surgery would likely be soon after.
Doctors told Stacey they're confident they could find another living donor in a week or so if she is not a perfect match.
Since Addie's story first appeared in The Journal, the family has been contacted by several Rhode Island residents who offered Addie part of their livers if necessary.
"If it's not me, they might look at other living donors who have written in," Stacey said.
Either way, Stacey said the family isn't coming back to Portsmouth until after Addie's operation.
Stacey left her job to be spend all her time with her daughter soon after the diagnosis, while her husband, Mike -- an airline pilot who lost his job shortly after Sept. 11, 2001 -- recently got a job at a mortgage company, though he'll spend at least the next month or so with the family in Baltimore.
The family has received thousands of dollars in donations to help with medical bills and living expenses since Addie's story became public. A fundraiser sponsored by the Newport Polar Bears on New Year's Day contributed more than $5,000. At another fundraiser on Saturday the family received $1,000 from a single donor.
While the dinner event was being prepared, an anonymous woman "in a black Volvo with blonde hair in a ponytail" dropped off the money.
"There was no name, no way to thank her," Stacey said. "I still feel like I need to say thank you."
While in Baltimore, the family will stay at the Ronald McDonald House, which offers families of seriously ill children a place to stay at little or no cost during treatment.
If Addie's surgery is successful she will spend at least three weeks at Johns Hopkins to recover, assuming there are no complications.
And despite the inexpensive accommodations at the Ronald McDonald House, Stacey will spend the majority of those nights sleeping in a chair next to her daughter's hospital bed, as she has spent countless nights since their ordeal began.
The family has set up a Web site -- www.vogls.com -- with regular updates on Addie's progress.
To contact Steve Peoples phone 253-1200 or e-mail speoples(at)projo.com