Sunday benefit will aid toddler with pre-leukemia
HERON LAKE -- Little Alexander Fest sat on his mother's lap Friday morning, a dimpled grin stretching across his face and a sparkle in his eyes. He clapped his hands and waved at his guest before being moved to the floor to play with some of his favorite toys.
Like any other 10-month-old would do, he put the brightly colored pieces in his mouth to inspect them.
On the outside, Alex looks like any normal toddler, except that he's a bit small for his age. He should weigh about 18 pounds by the time he's a year old, but at 12 pounds, 7 ounces, his mom, Kim, says there's no way he'll gain the five and a half pounds needed to reach his normal weight in the next two months.
"He's been the same weight for a couple of months now," she said. "He's getting taller, but he's not filling out. He's still wearing 0- to 3-month clothes."
On March 26, Alex was diagnosed with Monosomy 7 Myelodysplasia. Monosomy 7 means his seventh chromosome is missing its pair; the Myelodysplasia is the result of abnormal cells. Normal stem cells produce dysplastic, but Alex's abnormal cells do not. At this point, his condition is labeled pre-leukemia, and a bone marrow transplant is imminent.
"If he doesn't have a bone marrow transplant, or his cells turn into this type of leukemia, it's hard to cure it," said Kim. "They don't want it to turn into leukemia."
When that could happen is unknown -- it could be weeks, months, years or perhaps never.
"Usually it's found in 60- to 70-year-old males," Kim said. "It's so rare that they don't have exact answers."
The pre-leukemia diagnosis, while it does chart a course of action, still doesn't explain Alex's slow growth rate. In their first meeting at the University of Minnesota Medical Center in late April, Kim said doctors performed numerous tests on the toddler -- all of which, so far, have come back negative for other disorders.
Alex's slow growth was first noted when Kim was 25 weeks pregnant. At that point, she was asked to return for weekly ultrasounds. When he was born at 39 weeks, weighing five pounds, 11 ounces, Kim said he had no visible health problems.
At age 2 months, Alex had hernia surgery, and at three months, he spent a week in the hospital as doctors tried to find out why he wasn't gaining weight. He's also endured chronic ear infections over the course of the past 10 months.
"He's seen a gastroenterologist, geneticist and hematologist," Kim said, adding that Alex was fitted with a feeding tube for two weeks, but he kept pulling the tube out. He now takes a special calcium supplement to help meet his nutritional needs.
With the family still waiting on the results of one test, Kim said the next step may be a gene test.
"They want to make sure they have the right thing planned out," she said. "I'm worried that we're going to take all this time to figure it out, and then something will happen with the MDS (Myelodysplasia). It's just a horrible waiting game."
The Fests are hopeful a bone marrow transplant will cure Alex's MDS, but because it is so rare to find it in such a young person, doctors "don't know," Kim said.
Because it isn't recommended for parents to donate bone barrow to their child, Kim and Levi had their other three children tested. Their oldest daughter, Alison, age 6, was a match, as was their four-year-old son, Nickalous.
"You're lucky if you have one child that matches ... we were very lucky to have two," Kim said.
Alison, a kindergartener, will be the donor because she is the oldest.
"She's scared, but she knows if she doesn't do it, Alex could die," Kim explained. "She will go through a pre-week of tests, and the day of the transplant they'll sedate her and extract (the bone marrow) from her hip. It's usually an in-and-out thing.
"They say younger kids bounce back faster than older kids or an adult," she added.
While Alison may have to stay overnight in the hospital following the procedure, Alex is in for a longer ordeal. He will need to complete many more tests and take chemotherapy treatments prior to the transplant to wipe out the existing abnormal cells. That is done so his body won't fight off the transplanted cells, Kim explained.
Once the transplant is completed, Alex will remain in the hospital for a minimum of 80 days. Then, he will have daily check-ups.
The entire process means the Fests will need to be near the U of M Medical Center for three to four months. There is a Ronald McDonald House, on-campus apartments and nearby hotels for the family to stay, but Kim is hopeful their two other sons, Nickalous and Cooper, age 2 1/2, can be cared for by family.
"We're still trying to figure out where the other kids will go," she said. "(Levi) drives truck, so that's all up in the air. He's the only one with the income, so he has to be working."
The Fests own LK Transportation, and Kim does the bookwork, in addition to being a full-time mom.
Their extended family has organized a benefit for Alex and his parents from 9 a.m. to 2 p.m. Sunday at the Heron Lake Elementary School. A pancake breakfast will be served for a free-will donation, and numerous items have been donated for a silent auction.
Those unable to attend Sunday's benefit may donate funds at any Wells Fargo Bank, under the Alexander R Fest Donation Trust. Supplemental funds will be provided by Thrivent Financial for Lutherans.
Daily Globe Reporter
Julie Buntjer may be reached at 376-7330.