Paynesville toddler battles leukemia

This article submitted by Linda Stelling on 12/6/00.

Alexxis and her dad Friday is D-Day for Alexxis Thielen. (Alexxis pictured in her hospital bed with her dad, Paul.) After 35 days of treatment, doctors will know whether she is winning or losing her fight against leukemia.

If the test results are good, it means they are winning the battle and doctors can lower her dosage of medicine. If the results aren't good, the family will have to decide on radiation therapy or, as a last resort, a bone marrow transplant.

The two-and-a-half year old, who moved to Paynesville a year ago, has been undergoing chemotherapy treat-ments for leukemia since Oct. 31.

"She didn't do anything to deserve this. She is a sweet humble soul. She needs to learn what life is all about," said Paul Thielen, her dad.

"We can learn so much from her. The struggles we go through aren't struggles compared to what she's going through," he added.

Alexxis was born with pulmonary stenosis, a heart condition which limits how her heart valves open and close. She also has low muscle tone and wears ankle braces.

Not a typical child, her family has had to monitor her health closely.

In late October, when bruises first appeared, her family thought they were caused by her bumping into things as she walked. But when the bruises did not heal and she started to have daily nose bleeds, they decided to call her heart doctor on Halloween before taking her trick and treating.

The doctor said the signs had nothing to do with her heart and that they should take her to their local doctor in Paynesville.

The Paynesville doctors did a quick check at the clinic and drew blood samples. Forty-five minutes later they drew another blood sample which confirmed the first test. Alexxis had an unusual high white blood count and an enlarged spleen which pointed to leukemia.

"We were told to go home and pack some things for Alexxis as we had a half hour before she would be taken to the University of Minnesota Medical Center," said Paul.

"Doctors have told us if we hadn't gone to the hospital at Halloween, Alexxis would be dead by now," Paul said.

The doctors feel she only had leukemia two to three weeks before being diagnosed with acute lymphoblastic leukemia. "It is a quick moving leukemia," he added. Acute lympho-blastic leukemia is a fast acting disease of childhood.

At the university, Alexxis underwent a bone marrow biopsy and a spinal tap. The biopsy showed 98 percent of her bone marrow was affected by leukemia. The good news was the spinal tap showed leukemia had not reached her spinal column or brain.

"The doctors took her almost to the point of death to kill the leukemia cells," Paul said. Alexxis was given a strong dose of chemotherapy for two days. Doctors want to get the leukemia count in her blood to below five percent. They have not succeeded yet.

Someone from the family is with Alexxis at the hospital 24 hours per day. She has been in isolation for 14 days to prevent infections.

Family members take turns entering isolation to monitor Alexxis for temperature increases, wiping her down with a cold cloth, or giving her cold baths.

When we first went down to the university, we didn't think Alexxis would be there more than a week, he added.

The family has been staying at the Ronald McDonald House.

Alexxis has been receiving physical and occupational therapy daily. Her dad explained that the steroids she has been receiving have made her irritable. On those days her older brother, John, 4, is the only person who can get her to do therapy. They make it a game and she imitates what he does.

About three weeks ago, Paul was able to take her outside for a walk. "That was a big day for her," he said. She was bundled up in his coat as she didn't have any winter clothing at the hospital.

Paul said Alexxis has been in pain all her life so she has no concept of what life is like without pain. At present, her mouth is full of sores, making it difficult for her to talk. She uses hand signs to indicate what she wants. Mostly she says no-no-no to everything because everything hurts, he added.

The family hopes Alexxis can come home for Christmas, even if for only half a day. "That would be the best Christmas present we can have this year," Paul said.

Paul said his employers have been very understanding in letting him have time off as needed to be with his daughter. To supplement his insurance and to help with mounting family expense as they travel back and forth from the university, the Church of Our Lady at Manannah is hosting a benefit breakfast for Alexxis on Sunday from 10 to 12 a.m.

An Alexxis Thielen Trust Fund has also been established to help the Thielen family. Anyone wishing to contribute can send a donation to the Community First National Bank, Paynesville.

Alexxis' 16-year-old brother, Tony, has made a web page for his sister: The website helps keep friends and family members informed on her condition.

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