Herald JournalHerald Journal, July 18, 2005

A too-young expert on leukemia

By Teresa Jagodzinski

Most 9-year-old girls know a lot about princesses, horses, and dressing up, but very few know much about leukemia.

But Angie Volness knows about all of those things.

Volness is the daughter of Paul and Laura (Fasching) Volness of rural Cokato, formerly of Winsted.

At the age of 2-and-a-half years, she was diagnosed with acute lymphoblastic leukemia, which is the most common form of leukemia found in children.

Two years and two months of chemotherapy followed the diagnosis, and she was in remission for one year, before she relapsed.

She underwent a successful bone marrow transplant July 17, 2001 at the age of 5 years with marrow donated by her brother Jake, 7.

Tests taken after the transplant showed that all of the new cells were Jake’s, which is what the transplant was supposed to do.

“If any of Angie’s cells had shown up, the possibility of another relapse would be greater,” Laura explained.

Luckily, only a few problems were encountered after the transplant.

A catheter, which was inserted into Angie’s chest to give her medication and IVs while she was in the hospital, became infected about 60 days after the transplant.

After being hospitalized for two weeks and put on antibiotics for the infection, the catheter was removed and a PICC line was put in her arm instead.

Getting Angie to take six different medications two to three times a day for 100 days after the transplant was also a problem.

“She really didn’t like to take the medicine,” Laura added.

Because her immune system wasn’t very strong, she couldn’t go back to school until six months after the transplant, to prevent her from being exposed to germs that her body couldn’t fight off.

“Missing half of her first grade year was hard,” Laura explained, “She didn’t have the interaction with her classmates and teacher, and she didn’t have things repeated to her throughout the day as is done in the classroom.”

Her twin sister, Bailey, brought her homework home to her, and Angie did it at home.

“Rosie Hertel, her kindergarten teacher, was a big help in coming to our house to tutor her,” Laura said.

“At the start of second grade, she struggled to keep up with the other kids, but I think she does OK now,” Laura added.

Angie will be entering the fifth grade next year.

“The teachers at Holy Trinity have been good with giving her the extra help when she needs it,” said Laura.

The most noticeable physical side effect is the loss of hearing in one ear.

“When she was diagnosed, she had an ear infection and her counts were so low that they couldn’t fight off the infection, and she lost her eardrum in one ear,” Laura explained.

But, the prognosis for the future is good.

“Every year further from the transplant date without problems or a relapse, the less chance there is for a relapse,” Laura added, “Now, she is four years past the transplant date, and after five years, she’s considered cured.”

She has a checkup once a year at the University of Minnesota where the transplant took place.

“It involves taking blood counts, height, weight, and every two years, a bone density scan,” Laura said.

At last year’s checkup, the doctors weren’t concerned about the leukemia coming back, but more about the side effects from the treatments she had.

This could include growth, school, and anything else.

The Volness family is thankful for all of the support they have received from family, friends, and the community, especially with the benefit that took place a few months after the transplant to help with the medical costs.

“We were truly blessed to be part of such a great community,” Laura said.

They also were helped out by many organizations that aid cancer patients and their families.

The Make-a-Wish foundation granted Angie’s wish to go to Disneyland and meet Cinderella, and Give Kids the World in Florida gave them a place to stay while in Florida.

“Our family had an amazing experience in Florida because of these two organizations,” Laura said.

St. Jude Children’s Research Hospital and the Ronald McDonald House have helped them and many other families with all of the work that they do for cancer patients.

The Volness family knows these organizations are the reason so many children are surviving childhood diseases, so they continue to support these organizations so that other patients can benefit from them like Angie did.

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