10/25/2011 By ERIN MATHEWS Salina Journal
Aryanna Nagy, a 9-year-old Lindsborg girl, might require a bone marrow transplant before she can get back to being a full-time fourth-grader at Soderstrom Elementary School in Lindsborg.
“She just wants to go to school,” said her mom, Jakki Nagy. “She wants to be a normal 9-year-old girl.”
It’s been a month since McKenzie Haynes, a junior at Salina South High School, had a bone marrow transplant at Children’s Mercy Hospital in Kansas City, Mo., and her mother, Kathleen Haynes, said her recovery is going well.
Both girls suffer from rare but similar blood disorders, and in both cases the best hope for a cure may come from a bone marrow transplant.
That is what makes a bone marrow registry drive being held at Aryanna’s school this weekend in Lindsborg so important, members of both families said.
“We’re so thankful the school is doing this,” Jakki Nagy said of the bone marrow registration being conducted in her daughter’s honor. “It’s pretty great. I love our community.”
Kathleen Haynes said she would also encourage participation.
“Everybody needs to get over and get ‘er done,” she said. “I would jump in a heartbeat if some child needed my right arm at this point after all these people were so willing to help my daughter. It’s an amazing thing.”
The drive will be conducted from 10 a.m. to 4 p.m. at the school at 227 N. Washington. If Aryanna feels up to it, she will be there to serve lemonade.
Registration process easy
The procedure is simple, involving a swab taken from the inside of the cheek, which is then sent for DNA analysis and entered into a global donor computer registry. There is no cost to donors, although donations are being accepted to cover the approximately $55 in costs associated with registering each possible donor.
Bone marrow could be used to treat blood cancers, anemias, genetic disorders and other life-threatening ailments.
“Some people have months or years to find a donor, and some have weeks,” said Erika Toto, donor recruiter for DKMS, the world’s largest bone marrow donor center. “This is a very big-time game for a lot of people.”
She said the more donors that are registered, the more likely a match can be found. currently, six out of 10 people who need a bone marrow transplant never receive one.
“What’s so empowering about this is with all the training, science, and technology these doctors have, the one thing it comes down to is finding a match,” she said. “So many people are prevented from having that second chance because they can’t find that one hero in waiting to save them.”
For anyone who would like to register but can’t come in person, a kit can be ordered from getswabbed.org to complete registration by mail.
Potential donors must be between the ages of 18 and 55, in general good health and be willing to donate should their marrow be matched with a person who needs it.
The donation process may be accomplished one of two ways depending on the patient’s needs, Toto said.
The preferred method is a blood transfusion, but for some patients an actual bone marrow graft is necessary. the marrow is harvested through a hollow needle from a hip bone while the donor is under general anesthetic.
“There’s no drilling, no spinal tap, no breaking bones,” Toto said. “It usually takes one to two hours.”
For girls like Aryanna and McKenzie, a bone marrow donation could make a life and death difference. the two girls, both of whom were active and athletic, began developing symptoms their families couldn’t explain in April.
Bruise leads to diagnosis
For Aryanna, it was a large, dark bruise on her back that she was unaware she had that prompted her mother to take her to see a doctor.
“It was softball-sized, and black as black gets,” Jakki Nagy said. “She didn’t even know it was there.”
When her blood was drawn, the number of platelets, which aid in formation of blood clots, was well below normal, Jakki Nagy said.
After seven days of testing at Wesley Medical Center in Wichita, Aryanna was diagnosed with Idiopathic Aplastic Anemia, a disorder that affects one person out of 2 million a year, her mom said.
Her infant brother was tested to see if he might be a match to Aryanna’s bone marrow, but he was not. her parents, who plan to be the first two people in line Saturday, have been told that they are unlikely to be matches.
“If I don’t match her, maybe I can help someone else,” Jakki Nagy said.
Aryanna had been an active tomboy who was in the middle of soccer season when she was diagnosed. She also played softball and basketball, and all three of her city recreation league teams were coached by her dad, Zach Nagy.
“She’s not real thrilled with being a girl,” Jakki said. “She wants to play football, and we tell her she can’t. She’s not my girly girl.”
But for now, contact sports are out of the question.
Aryanna’s family decided in July to try an experimental horse serum treatment before resorting to a bone marrow transplant. the treatment has been difficult, causing symptoms like joint pain, headaches, nausea and hives, but it does seem to be having some effect on her body’s production of blood platelets, Jakki Nagy said. Just how successful the treatment has been won’t be known for several months.
In the meantime, Aryanna has to take medications to suppress her body’s natural immune response. with her immune system compromised, she can spend only partial days at school, and she must wear a surgical mask over her mouth in public, Jakki said.
On days she can’t get out, she has enjoyed being with her friends virtually, playing Sonic the Hedgehog live on her PlayStation 3.
Aryanna often is exhausted by her disease and the side effects of medications and the serum, but she has no dietary restrictions. for Halloween, her mom said they chose a costume that incorporates a surgical mask, and she will ride from house to house in a friend’s bus.
“Last year, she was a vampire; this year, she’s going to be a zombie doctor,” her mom said. “She likes scary stuff.”
Aryanna’s family has received financial support from several projects conducted by classmates and staff at Lindsborg schools.
Debbie Watson, principal of Soderstrom Elementary, said more than $2,000 was contributed in five days during a penny drive conducted to assist the family with medical bills that insurance doesn’t cover. A local business provided a $1,000 match.
Watson said each day of the drive, a second-grade class pulled a wagonload of coins to the bank to be counted.
“There were days it took several of us to lift the bucket and get it in the wagon,” she said.
USD 400 employees will provide volunteer staff for the bone marrow drive, which is being spearheaded by the school nurse, she said.
“The kids from pre-K on up all know who she is, and they’re really excited when she’s here,” Watson said. “She’s one of our kids. we try to take care of each other. That’s what we do.”
Fundraisers help with costs
Margo Lysell, who teaches at Smoky Valley High School, said a group of high school students is organizing a tailgate party before Thursday’s football game against Abilene to help defray the costs of registering potential donors during the bone marrow drive.
Krystin Vidrine, a senior, said the students also have sold bracelets and pins to raise funds for the drive. Vidrine, who is not yet 18, said she plans to order a kit online after her birthday.
“She’s a very nice, very sweet, very loving girl,” Vidrine said. “For how sick she is, it’s amazing how happy she acts.”
Seventeen-year-old McKenzie Haynes’ experience so far may provide some encouragement for the Nagy family.
Kathleen Haynes said a perfect match for her daughter’s bone marrow was found within 24 hours in a 24-year-old German man.
“There were six that looked really great, and two appeared to be perfect matches,” she said. “They were all strangers to us, but everybody was so willing and eager to get it done for us. when they found out there was somebody they could help they were more than willing to do it.”
McKenzie Haynes, who played tennis, soccer and basketball, was having a terrible time breathing in April when her family first realized there was something wrong.
“Just going up the stairs to her bedroom would totally wipe her out,” her mom said.
First asthma, then anemic
At first she was diagnosed with asthma, but by June, when nothing seemed to be helping her, she was taken to a doctor who recognized she was anemic.
She eventually was diagnosed with Refractory Anemia with Excess Blasts Type I, a condition that, if left untreated, can lead to leukemia, her mom said.
Kathleen Haynes said McKenzie’s post-transplant recovery is about two weeks ahead of where most patients are at this point and “that’s OK with us.” She said doctors had just informed her that the donated marrow was fully engrafted and had taken over production of blood cells in McKenzie’s body.
About a week ago, McKenzie was able to leave Children’s Mercy and check into the Ronald McDonald House. the family is expecting to spend about 100 days there, while McKenzie still visits the hospital for frequent testing.
McKenzie is still tired, her mom said, and it is likely to be six months to a year before she regains her full energy level.
Within days of McKenzie’s diagnosis, Kathleen said both she and her husband registered as potential bone marrow donors.
Marathon will benefit McKenzie
Also this Saturday, a marathon relay to benefit the Haynes family is scheduled at bill Burke Park. McKenzie’s Marathon Relay will have teams of four runners, with each running one-quarter of a marathon, or 6.55 miles, before handing off a baton to the next team member.
Registration costs $100 for each team; individuals who want to run the full route may register as a team for $100. Individuals who want to run only one leg may register for $35 each.
Registration is available online at active.com. Registration forms also are available at Humphrey’s Gym, 1125 Wilbre; Bennett Autoplex, 651 S. Ohio; Eagle Radio, 1825 S. Ohio, and Salina Running Company, 122 S. Santa Fe.
Registration deadline is Thursday.
“We feel very fortunate and have had the most amazing outpouring of support and love from our community and school,” Kathleen Haynes said. “It’s been unbelievably overwhelming.”
– Reporter Erin Mathews can be reached at 822-1415 or by email at email@example.com.
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