Six Months After Transplant, Astoria Boy Fighting The Odds

by Paul Menchaca

Western Queens Editor

March 11, 2004

Dakota Kwiecinski's health struggles continue, but now there is hope. The 3-year-old Astoria boy is six months removed from a stem cell transplant that saved his life, and according to his mom, Tristan Regnaudot, he is filled with energy and resilience. Dakota Kwiecinski

But Regnaudot knows that her son is not like most boys his age. Kwiecinski needed a transplant because he suffered from hemophagocytic lymphohistiocytosis, also known as HLH.

It is a disease that is more severe than leukemia, caused by an excess of white blood cells called histiocytes, as well as an excess of lymphocytes. When the Queens Chronicle first spoke to Regnaudot last July, chemotherapy had put Dakota's disease in remission, but she and her husband, Christian, knew they were racing against a clock.

A relapse was almost certain, and if it occurred before a stem cell transplant, there would have been little that doctors could do to save Dakota's life. A transplant came in September, from an anonymous umbilical cord donor, and was performed at Columbia Presbyterian Hospital in Manhattan.

Dakota spent three months in the hospital, suffering complications along the way. He takes a lot of medication, and one of the chief concerns is that his new immune system works so well it can almost turn against him.

"He's doing okay and the doctors think he will be able to come off some of the medications," Regnaudot said.

The transplant itself was not the major hurdle for Dakota, as it is for many organ transplant patients. It was actually the week leading up to the procedure, when he had to undergo intensive chemotherapy sessions, that was the biggest struggle.

"He was still somewhat alert, but he did get very sick," Regnaudot said. "Having to watch his immune system get wiped out was very hard."

According to the Histiocytosis Association of America, approximately 1 in 200,000 children are born with this disease each year in the United States. But HLH is an even rarer form of this disease.

According to Regnaudot, Dakota is one of 30 children who have been diagnosed with it in the past decade. Because the disease is similar to cancer, it is treated with chemotherapy.

However, unlike cancer, a histiocytosis disease can go into remission without any treatment.

Although the Regnaudots are overjoyed that Dakota received the transplant, for Tristan, the care can sometimes seem overwhelming. Besides being his mother, Tristan has become Dakota's nurse, educator and playmate, forcing her to make more sacrifices in her life than a normal mother.

"The social isolation is very hard because he can't be normal," she said. "He can't go anywhere without a mask on, so I'm a little bit worried about the developmental aspect."

She credited her husband with forcing her to leave the house and take part in things that she enjoys. She has joined community groups to participate in activities that interest her, and her mother visited from New Mexico for three weeks to allow the Regnaudots to go out together.

"We're very, very thankful," she said. "Because when you are at the hospital you see outcomes that are much worse. You see kids that are there for eight months, or who never come out. Sometimes you have to really try to remember what matters in life."

Regnaudot added, "After the initial diagnosis and then during the search for a donor, it's easy to be optimistic. But now it's hard to always be optimistic."

Dakota initially got sick in February of last year, first with a rash and then a 104-degree temperature. Doctors evaluated him but could not find what was causing his illness.

It was finally found out that Dakota was suffering from HLH, and that his white blood cells were attacking his brain and his liver.

Regnaudot said that she was "wowed" by the response from people who set out to help find Dakota a donor.

"New York has such a hard reputation, but it did not live up to it in our situation," she said.

She noted that Astoria City Councilman Peter Vallone Jr.'s office called the day after it learned of her son's condition. They still receive calls from his office to check up on Dakota's condition.

Residents in her building, who she does not even know very well, got together and paid a month's rent while the Regnaudots were in the hospital with Dakota. The American Indian community in New Mexico where Dakota, who is half-Navajo and half-caucasian, was born also responded.

The Navajo Nation held a big benefit concert for Dakota, and donor drives were held to try and find a match for him.

"This whole ordeal has awakened an activist spirit in me," Regnaudot said. "The need to donate, to support each other when we undergo a crisis like this. A lot of times there is not much of a support system in our culture."

Regnaudot also wanted to point out the importance of donating an umbilical cord, which has blood rich in stem cells. An organization called Cyrobanks International facilitates donations, which are free to the person making the donation.

"A lot of women don't know about this, but it has a chance to save a child's life," Regnaudot said.

Copyright © 1995 - 2004 PowerOne Media, Inc.

This article posted April 4, 2004.