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Tuesday, June 2, 2015

Alta family hopes for one more miracle for their 'miracle baby'

Friday, June 26, 2009

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Cherishing Every Moment - Libby Linke shares a moment with her 2 year -old-son Zailin. Photo by Jennifer Nelson, Storm Lake Pilot-Tribune.
ALTA - AJ and Libby Linke of Alta are praying for a miracle to keep the beloved little boy they didn't think they would ever have.

"I was told I couldn't have another child," says Libby, so when son Zailin was born, it was a joyous miracle.

But recently, the active 2-year-old was diagnosed with Pontine Glioma - a cancerous brain-stem tumor, which they were told is likely to be terminal.

"I don't know if we can still hope for a miracle. We could have a miracle. We do have a miracle," Libby says.

She says she and her husband won't be able to have any more children because she underwent a hysterectomy due to medical reasons.

On May 15, Zailin was in the bathtub when he slipped and fell, hitting his head. Libby says there were no signs of any injury, but then Zailin began vomiting. She assumed he had just gotten upset from falling down, but her husband suggested they take the little boy to the emergency room to be sure.

Doctors decided to take a CT scan and discovered a tumor, originally thought to be at the base of Zailin's brain, but later discovered to be in his brain stem. They don't know for certain, but doctors think that Zailin may have been born with the tumor and it has just grown slowly.The tumor is in an area which controls many automated functions, and doctors say it is inoperable. Libby said that some children who are diagnosed are given only 18 months to live, and adds that when she talked to the doctor, the doctor's expression said to her, "You should have known."

Discovering that her son was sick was a fierce blow, and it was made even worse by the realization that there may be nothing the couple can do, except perhaps buy their small son a little time. The situation is, said Libby, "a mother's worst nightmare."

The young mother was torn - knowing that she could research the medical situation online, but, on the other hand, not ready for the harsh reality she might find there.

Libby, a stay-at-home mom, says that, despite their worry and fear, she and AJ are happy in a way that the tumor was found, because they have been able to cherish every moment they have with their little boy.

Libby is also grateful that the doctor decided to run the CT scan on Zailin, as other doctors have since told them that in many cases, if a parent called a doctor in such a situation, they would probably have been told that they didn't need to see a doctor.

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Mother and son time - Zailin and Libby Linke do some bonding. Photo submitted.
Libby said that neither she nor her husband ever saw any symptoms of the illness with their young son. Occasionally, Libby said, Zailin would point to the back of his head and say, "Ow," but she was never able to find any bumps, or any other reason to be concerned. She said that Zailin has also had some speech delays, "but," she reasoned to herself, " he's only two."

In late May, Zailin had a port surgically inserted in his chest to enable him to receive chemotherapy treatments, and he has been going to Omaha Children's Hospital once a week for 12 weeks of treatment. Another MRI to check on his progress will be done some time between his eighth and 12th week of chemo, and Libby Linke has been told that, in the best case scenario, the MRI will show that the tumor had shrink with the treatment. She was also told, however, that in the worst case scenario, treatment may not do anything, and the tumor could continue to grow. "It's a waiting game," she said.

Libby said that the one thing that keeps her going is her family - knowing that they need her, and that she needs them, too. The family members are grateful for each other , and the shared support they are experiencing.

AJ and Libby have a 4-year-old daughter, Alleriah, and Libby said, "I have Allie to think about. We have to watch our emotions and watch what we say around her. (She) knows her brother is sick and is taking special medicines, but she doesn't understand the extent of the situation. She's only four - you can't tell a four-year-old (something like) that."

The experience has certainly been life-changing for the Linke family in many ways, including the necessity of borrowing a car from Libby's mother to enable them to get back and forth to all of their son's medical appointments.

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Full of life - Zailin Linke appears to be a happy, healthy 2-year-old. Photo submitted.
One thing that helps keep the couple going, however, is watching Zailin romp around and play like a typical 2-year-old.

"He doesn't seem sick," said Libby. "We wonder how long it's going to last.

The realization is just sinking in."

The family is waiting, praying, and cherishing every moment spent with Zailin. "He's the sweetest little boy. If he sees you're upset, he'll come over and give you 'lovings'," said his mom.

Zailin's grandparents are Paula and Tim Aronson of Alta, Chris and Diana Niehaus of Correctionville, and Lynn Linke of Storm Lake. His great-grandparents are Russ and Dee Haubrich of Fonda, Mary Niehaus of Fonda, Oliver Aronson of Albert City and Leonard and Arlene Nielsen of Newell.

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Baby Otters .
A Carnival benefit for Zailin is scheduled to be held from 3 - 7 p.m. on Sunday July 26, at Chautaqua Park in Storm Lake. Hamburgers, hot-dogs, beans, chips, and ice cream will be served for the cost of a free will donation, and there will also be a lot of games and activities, plus face painting and tattoos , from 3 - 7 p.m. Tickets are just six for $1 for a fun - filled afternoon for the whole family that will also go to support a good cause.

Anyone wishing to help out should contact Jeni Marshall at 712-200-3753, or email her at Jeni9198@hotmail.com. A fund has also been set up at Metabank, and donations should be made out to "Otters for Zailin Linke," or to Paula Aronson.

A 'Caring Bridge' web page for Zailin can be found at www.caringbridge.org/visit/ottersforzail.... "Otters" are mentioned in the web address because, Libby said, her son was fascinated by the otters he saw at the zoo.

Otters, she said, represent laughter, curiosity, truth, and patience - characteristics which, his mother said, describe little Zailin perfectly.



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