Praying for their little miracle
By Phyllis Moore
Published in News on January 20, 2011 1:46 PM
Abby Keen, right, a freshman at Southern Wayne High School, sits with her mother, Deon, in their Goldsboro home. Abby, 14, was diagnosed last year with primary scerolsing cholangitis and is in now on the list for a liver transplant.
Most days, Abby Keen is content to come home from school and cuddle with her miniature dapple dachshund Oakley.
The puppy has become a confidante of sorts for the 14-year-old who until last year was an active, energetic dancer, cheerleader and softball player.
That was before life "changed in a second," said her mom, Deon Keen, a registered nurse at Wayne Memorial Hospital.
"We had noticed that her tummy was a little bit bigger, but thought it was because her exercise was different," Mrs. Keen said.
Several years before, her husband and Abby's father had died from liver cancer only a few months after being diagnosed. Abby was 9 years old.
"During that time, Abigail had had some pain, but we had related that to grieving," Mrs. Keen said. "Months passed and they diagnosed her with three duodenal ulcers and they were treated successfully."
In the fall of 2009, a checkup showed that Abby's spleen was enlarged. That was followed by months of tests, hospital visits and a stay at the Children's Hospital at UNC-Chapel Hill.
"We just had test after test, saw 28 to 30 physicians," Mrs. Keen recalls. "They found she had cirrhosis of the liver, but they did not know the cause.
"Over a period of weeks, everything declined; she got worse. We were in the hospital off and on for two and a half months."
At one point, Mrs. Keen was given a choice of three hospitals for subsequent treatment. She opted to go to Children's Hospital in Pittsburgh, Pa.
"They started testing and discovered that she had primary scerolsing cholangitis, a very rare liver disease found in children. It is normally seen in men 35 to 50," she said.
The diagnosis changed everything.
"Abigail was a softball player, cheerleader, head of the Christian Club at (Grantham) school," her mother said. "She had to stop cheering, she couldn't do stunts any more, they would not let her play softball any more because of any potential problems. Her life did a complete 180."
Abby's weight had gotten down to 90 pounds and she was having difficulty eating, prompting doctors to consider a feeding tube.
She wound up being hospitalized in Pittsburgh from Thanksgiving 2009 until mid-December.
Doctors hinted at the possibility of a transplant early on, but it became a more distinct possibility as tests became more conclusive.
She was placed on a transplant list last March.
The transplant team told Mrs. Keen her daughter could be moved up the list if there were exceptions -- such as the white count and hemoglobin being on the low side. Removing her spleen was another option mentioned.
"No. 1 for people who need a transplant, they only want to do one surgery and hopefully that's a transplant," Mrs. Keen explained. "Also, they prefer in children not to remove the spleen unless it's absolutely necessary."
The news dealt a heavy blow.
"I can tell you that when I found that Abby had cirrhosis of the liver and that transplant was imminent and being in the nursing field and always hearing stories about people -- children diagnosed with cancer or any devastating disease -- I always thought, 'I can't even imagine what they're going through,'" Mrs. Keen said. "When the doctors told me, in my heart, in my mind, the fear, the devastation, I can't even describe it. Our life as we had known it, was changed in a second. ..."
Before the latest turn of events, they had moved to Goldsboro to be closer to Mrs. Keen's job. Abby continues to go to school with her friends, at Southern Wayne High School, where she is a freshman.
Now Mrs. Keen is weighing all the options, including whether she will have to sell her house as the prospects associated with the transplant loom large.
"She may have to be in the hospital three months, or nearby, to allow for follow-up appointments, etc.," she explained. "But doctors believe that with Abigail being so healthy otherwise, the earlier that she can be transplanted, the more quickly she can return to a more normal life.
"They give you a score, with 40 being a maximum. Abigail's score as of November is at a 30, when they moved her up on the list with exceptions."
So these days, she and her daughter have to "stay ready."
"When we get the call that a liver is available, we have approximately six hours to get there (to Pittsburgh)," she said.
Fortunately, community support has been remarkable, Mrs. Keen said.
"In all of this process I have been responsible for trying to arrange flights," she said. "There are some people locally that fly. We have six or seven that have volunteered to fly us so we don't have to worry about going to Raleigh."
It's difficult to explain what they are going through, and Mrs. Keen said she doesn't expect people to understand.
But some sense of normalcy is their optimum goal.
"She just likes being close with her girlfriends, hanging out, just not treating her like she's sick, not sitting around and thinking about it but just being able to do their things," she explained. "Abigail is a very modest young lady but her faith and my faith and my family's faith, that's what's gotten us to this point."
Because of Abby's situation -- not a candidate for a partial liver transplant, it has to come from a donor -- it brings up the issue of organ donation.
"It's a gift, a very precious gift and we're definitely sensitive to the struggle that it could be for someone and even for Abigail -- she has gone through that struggle of knowing that someone's life will end so that hers can begin," Mrs. Keen said.
The Keens admittedly went through some valleys, at times not knowing if they would ever laugh again.
But for the first time, Mrs. Keen said, she feels hopeful, at peace.
They are making preparations and taking the necessary steps to ensure Abby's health. From the medications she's on to exercising and watching what she eats, the teen is preparing for when the call comes that a match has been found.
"We're believing that God already has all that worked out, He knows the date and time," Mrs. Keen said.
"I have gained strength from watching (Abby). The fact that she can stay focused on making the grades that she does, that she has the determination that she does to beat this thing and to keep going, I'm very honored to be her mother."
Fundraisers will likely be planned to help the family with pending expenses, and efforts have already been organized by colleagues at the hospital, including the sale of gel bracelets at the hospital gift shop. The Abigail Susan Keen transplant fund has also been set up at First Citizens Bank.
The main thing they would especially appreciate, though, is prayer.
"People have been so wonderful already," Mrs. Keen said. "In Wayne County, outside of Wayne County, across the state, prayers have been prayed. And for people, if their child complains of something and something doesn't look right and feel right, do not hesitate to take the child to the doctor."