This was in the Leander Ledger and the Cedar Park Citizen papers. There was a different title and picture for each paper, but same story.
Fun run for Jaylie — helping a little girl’s struggle with brain cancer
Wednesday, July 27, 2011 | | 1
By Rachel Ingram
In the week following the event, Jaylie will begin six rounds of chemotherapy that will last until early next year. Instead of starting kindergarten this fall, she will be in and out of the hospital as she completes her treatment.
“That’s when it can get scary,” said Jaylie’s mother, Kajsa Nielson. “She can get really sick and her counts will go way down. (The doctors) said if she stubs her toe, they want to know. It will be tough.”
Less than four months ago, Jaylie went to an ophthalmologist because she had started seeing double and her eyes — first her right eye, then her left — kept turning inwards. At first the doctors thought it was an eye condition that could possibly be fixed with glasses or surgery. When they dilated her eyes, they saw there was swelling behind them, and thought a tumor could be a possible cause.
Jaylie immediately went to the Dell Children’s Medical Center for an MRI. By 10:30 that evening, doctors told Kajsa, her husband, Kip, and Kajsa’s mother that Jaylie had a large tumor on the front, left side of her brain.
“It was quite large in the picture,” Kajsa said. “There was no doubting it. It totally turned our lives upside down in a split second.”
Two days later, Jaylie went into brain surgery. It was a success – the surgeon removed the entire tumor and Jaylie dodged the major side effects of not being able to talk or move the right side of her body for a while.
“The first thing she did when she woke up was talk, and we saw her move her arms and her legs,” Kajsa said. “It was a happy moment.”
But there were still ups and downs following the surgery, and after a biopsy, the doctors found that the tumor was a rare and aggressive cancer called a Supratentorial Primitive Neuroectodermal Tumor, or sPNET.
Neither Kip nor Kajsa has had a family member with a similar illness. The cancer is not genetic and there is nothing they could have done to prevent it. Kajsa and Kip have experienced their own daily ups and downs.
“It feels like a dream, and we’ll wake up and everything will be fine,” Kajsa says. “It’ll be a life-long struggle; doing radiation on children this young — on their brains — is quite damaging.”
Last week, Jaylie finished the last of 31 radiation treatments. Before the treatments started, the family went to the JW Marriott Hill Country Resort in San Antonio and visited Sea World. At the end of the treatments, they returned to Sea World and, thanks to a generous employee, got a special behind-the-scenes look at the amusement park. Sea World has also donated four one-day passes to be raffled off at the 5K and Fun Run.
If all continues to go well with chemo, Jaylie will finish mid-February and be able to catch the end of kindergarten sometime between March and May. Kajsa is hoping she will be cancer free and only have to go in for scans every two or three months.
A lot of good has come out of the bad, and Kajsa has been amazed by the community support, even from people she doesn’t know.
“It’s definitely the worst thing (that has happened) in my husband’s and my life, but we’ve seen so much good come from it and have met so many people that have done so many wonderful things for us,” she said.
She has also been touched by Jaylie’s optimism. When she and Kip had to shave Jaylie’s head, they were prepared to embrace her and tell her how beautiful she still was. But they got a surprising response when Jaylie approached her reflection in a mirror.
“She went to the mirror and just smiled and said, ‘I look good bald,’” Kajsa said. “She’s loved it every day after that.”
One of the most important pieces of advice Kajsa has for other parents who may find themselves in a similar situation one day is to have a support system.
“Try and find a support system because you can’t do it alone,” Kajsa said. “There’s too much to do. If I didn’t live by family, I would probably have to move to live by them because it would be too hard.”
Luckily, Kajsa has her parents and three siblings nearby. Her sister-in-law, Corey, has been her go-to girl and often fields inquiries and offers to help the family. Two of Kajsa’s friends came up with the idea of a 5K and have worked together to make it a bigger event than Kajsa expected. They even have a star guest performer — Haeley Vaughn, an American Idol Season 9 finalist.
As the inevitable financial and emotional burdens of Jaylie’s illness have accumulated, Kajsa is increasingly grateful for all the help that has been offered to the family.
“I wish I could express my gratitude to everyone,” Kajsa said. “It has helped so much, and it’s hard to figure out how to let people know how much we do appreciate it.
To register for the Team Jaylie 5K and Fun Run or to make a donation, visit teamjaylie.org. For updates on Jaylie, read Kajsa’s blog at jaylienielson.blogspot.com.
(This one was in the Hill Country News)
Team Jaylie helps in 5-year-old's cancer fight
Posted: Wednesday, August 3, 2011 10:05 am | Updated: 10:10 am, Wed Aug 3, 2011.In April, the Nielson family of Cedar Park took 5-year-old Jaylie to the eye doctor because she was having vision problems. What they believed would result in prescription glasses for their little girl actually ended up in ER doctors discovering a brain tumor. Jaylie recently had brain surgery to remove the tumor and was diagnosed with supratentorial primitive neuroectodermal tumor, a rare and aggressive form of cancer. Jaylie will begin six rounds of chemotherapy this month that will last until early next year, in addition to the radiation she receives on her brain and spinal cord five times a week. Instead of going to kindergarten in the fall, she will be in and out of the hospital as she completes her treatment.
Besides the constant worry of Jaylie's progress and health, the Nielson family is continuously having to pay costly medical bills for Jaylie's treatment. That's why local residents and friends united to form Team Jaylie to help raise $25,000 to be used toward medical costs. The main project of Team Jaylie is a benefit 5K and one-mile fun run on Aug. 13 at Southwest Williamson County Regional Park, 3005 County Road 175 in Leander. Runners and walkers of all ages and abilities are invited to participate. The family-friendly 5K and associated activities begin at 7:30 a.m., and end at 10 am. Registration for the event is currently taking place at teamjaylie.org. Haeley Vaughn, an American Idol finalist from Season 9, will perform at the event.
Anyone who wants to help Jaylie fight back against her cancer is invited to make a difference by donating online, participating in the event, or signing up to volunteer at the event this week. Heather Jim, event coordinator, is a Leander resident and childhood friend of Jaylie's mother, Kajsa Nielson, who was moved to help the Nielsons because she herself is a mother of two young girls and would want the community to step up and help if she were going through a similar situation.
"Jaylie's been so strong throughout all this and you wouldn't know she had cancer besides the fact that she has no hair. She's still has her same funky, fun personality and it hasn't changed her at all," said Jim. Team Jaylie has already raised $18,777 of it's $25,000 goal but Jim encourages those interested to continue donating online.
"They should still be able to donate at teamjaylie.org. She'll battle this for the rest of her life. They'll always have medical bills for this."
To follow Jaylie's progress or to donate, visit visit teamjaylie.org, jaylienielson.blogspot.com, or join Team Jaylie on Facebook.