|
Aplastic Anemia News - Return to News Menu
Tests indicate transplant rejection
By Joline Gutierrez Krueger
Tribune Reporter
March 8, 2005 - Eight-year-old Kailee Wells is losing the battle against a rare blood disease after tests indicated her body is rejecting a bone-marrow transplant she underwent six weeks ago.
"As I understand things, rejection usually means a death sentence," her mother, Linda Wells, said Saturday in an online journal the Albuquerque family has kept since Kailee's transplant Jan. 25 at the Children's Hospital of Wisconsin in Milwaukee. "To me it feels like a death sentence with an appeals process."
Doctors have already suggested a second bone-marrow transplant - soon, she said.
They've also advised the family to make the most of the time left.
"We are told to 'enjoy her,' 'think quality time,' 'let a friend come over,' 'let her enjoy being home,' 'help her to enjoy her big sister's coming visit,' 'you have to weigh the risks of catching a virus against her quality of life,' blah, blah, blah," Linda Wells said. "We had to do all that before, but at least then we had the fantasy of the transplant being the cure."
LEARN MORE ABOUT KAILEE
www.kaileegetwells.com
Kailee was diagnosed with severe aplastic anemia three years ago. Her story of courage and her parents' determination to find a bone-marrow donor match and a doctor to save her life have won hearts across the globe, including in China, where Kailee was adopted.
Linda Wells moved with her daughter to Milwaukee a year ago to be closer to Kailee's doctors and the hospital where she underwent blood transfusions with increasing regularity. Kailee's father, Owen Wells, has continued to commute to and from Albuquerque for his graphics business. He returned to Albuquerque just last week because it appeared Kailee's recovery was going well, Linda Wells said.
Kailee also had made enough progress to be discharged from the hospital 1 weeks ago.
But last week, DNA and other tests confirmed the marrow graft was all but gone, and Kailee's body was not making the sufficient amount of blood cells, Linda Wells said.
Kailee's most recent blood platelet count was 12,000 - far fewer than the normal count of 150,000 to 450,000, she said.
Kailee has grown pale, weak and nauseated and requires more morphine for the pain, she said. Still, Kailee remains as defiant as ever and has already told her parents she is willing to undergo another grueling bone-marrow transplant, Linda Wells said.
" 'Yes,' " she said her daughter exclaimed when asked about another transplant. " 'I want to be done with this stupid aplastic anemia.' "
Because the first transplant included weeks of conditioning with a relatively new combination of chemotherapy, radiation and other treatments, Linda Wells said it's still possible doctors could find the right mix to save her.
The Wellses say they have not given up yet. But the strain is obvious.
"So, while some say we are at square one, for me, we are at a place behind square one," Linda Wells said.
100 reasons to celebrate
8-year-old reaches milepost of survival although bone-marrow transplant failed
By MEG KISSINGER
mkissinger@journalsentinel.com
May 5, 2005 - Kailee Wells giggles as she hangs upside down from her hospital bed. After a few minutes, her mother scolds her to sit up straight.
Kailee Wells, 8, doesn’t let severe aplastic anemia slow her down as she waits in a Children’s Hospital room for a platelet transfusion Thursday. "That's enough of that," says Linda Wells.
If Kailee feels lightheaded these days, it's not just from monkeying around. The 8-year-old girl has been through a dizzying ordeal in her battle against severe aplastic anemia, a potentially deadly disease that attacks the body's blood system. Thursday marked the 100th day since her bone marrow transplant, a procedure that failed, despite the family's near two-year search for a donor.
"High five on Day 100," says David Margolis, the doctor at Children's Hospital of Wisconsin, who is coordinating Kailee's treatment, as he slaps her palms.
Thursday's milestone is considered medically significant because a number of aplastic anemia patients die within 100 days of their transplants.
"The fact that Kailee didn't die is significant," said Margolis.
Kailee got to take out the intravenous tubes that had been providing extra hydration since her transplant on Jan. 25. She says she won't miss the sound it makes, similar to a camera clicking.
Margolis says Kailee's case is not the best he's seen in the 50 or so cases that Children's Hospital has handled in the past 10 years. Nor is it the worst.
International attention
Kailee needs regular transfusions these days, but she appears relatively healthy.
"One picture is worth a thousand words," says Margolis, noting that Kailee is able to play with other children and do many of the same things other kids do.
Kailee's case has drawn international attention because of the family's worldwide search for a bone-marrow donor. Linda Wells traveled twice to China looking for a match, generating media reports of her quest.
Kailee was born in China and adopted by Linda Wells and her husband, Owen Wells, when she was a little over a year old. The day of her fifth birthday, Kailee had a high fever and was diagnosed with aplastic anemia a few days later. The family moved to Milwaukee from Albuquerque, N.M., nearly two years ago so that Kailee could be treated by Margolis, who is considered one of the world's leading authorities on the disease.
Though the transplant failed, recent tests have given some reason for hope.
A biopsy last week showed some improvement, but Margolis says only time will tell if Kailee's condition will improve on its own or if another procedure - possibly another transplant - is called for.
Linda Wells says she knows that it is important to stay focused on the tiny details of her daughter's condition and try not to get discouraged at the big picture.
"We are supposed to look at the moment," she says. "But I slip constantly."
Friends, family donate
Meanwhile, family and friends continue to donate platelets and whole blood. Noelle Northey, Kailee's second-grade teacher at Atwater School in Shorewood, has been donating platelets about every other week, a somewhat painful procedure that takes roughly three hours each time.
This being Teacher Appreciation Week, Kailee wrote Northey a card saying, "Thank you for letting me live."
Kailee is back in school most days. She missed more than two months
The Wellses are planning their first trip to Albuquerque in more than a year today. Kailee's new dog, Tillie, a Yorkshire terrier, will go along.
"Every day that we have, is big," says Linda Wells. "The littlest things are big to us."
|
