Craig fifth-grader undeterred by rare condition, chemo treatments
November 21, 2014
Nicholas Crookston doesn't look like he's sick.
The enthusiastic 11-year-old plays baseball and loves science experiments, history and camping.
A fifth-grader at Sandrock Elementary School in Craig, Nicholas also excels in the classroom.
"He's extremely bright," said fifth-grade teacher Kristin Allen. "He loves to be at school. In spite of all his health challenges, he wants to be here."
Since last April, Nicholas has been battling an unusual condition known as Langerhans cell histiocytosis. And in just over a year, the young man has endured 18 chemotherapy treatments, five MRIs and four PET-CT scans.
"He's been poked, he's been prodded, he's had a lot of blood taken," said his mother, Alida Crookston. "He's a trooper. He never complains."
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Nicholas' challenges began last year when he was diagnosed with central diabetes insipidus, a condition in which his brain can't produce sufficient antidiuretic hormones.
The doctors in Denver left Nicholas and his parents with the news that, while the life-long condition could be controlled with medications, it is usually secondary to something else, often a tumor on the pituitary gland.
An MRI in April revealed that Nicholas had a mass of cells growing in his brain. LCH causes Langerhans cells to build up in different places in the body, such as the bones, skin or lungs, forming something like a tumor.
LCH "occurs when the body accumulates too many immature Langerhans cells… a type of white blood cell that normally help the body fight infection," according to the Hystiocytosis Association website.
The condition is treated using chemotherapy. Nicholas began his year-long treatment program in Denver, traveling there with his mother and father, R.J., every Friday for eight weeks. He was then referred for another six consecutive weeks of chemo at The Memorial Hospital in Craig.
"He was missing so much school. You never think your child is going to be sick," Alida said. "And you don't expect in your budget to make nine trips to Denver in six weeks."
Nicholas' three younger siblings, Hannah, 8, Zachary, 7, and Emma, 4, stayed with friends during the trips.
"We were leaving the other three kids constantly," Alida said. "They were little and scared. All they knew is mom and dad are leaving every week with Nicholas and Nicholas is sick."
Without any extended family close by, the Crookstons relied heavily on their church community and other families during this time.
"We don't even have to ask — they call up and say, 'When's your next appointment?'" Alida said. "It would've been really hard if we didn't have our church family here and other families who have stepped up. They've gone above and beyond."
Nicholas now needs chemo only once every three weeks at TMH, and the family travels to Denver every three to four months for a PET-CT scan and to see his oncologist.
"We started telling the kids… when this is all over, we're going to try to go to Disneyland," Alida said. "That will be our goal when Nicholas is healthy again. We've never done a trip like that."
Alida is an active member of the Parent Advisory Committee at Sandrock, as well as a volunteer and a substitute teacher. Fellow PAC members wanted to do something to help the family and decided to launch an online fundraiser via Go Fund Me.
"People want to help but they don't know how," said Sandrock Principal Kamisha Siminoe. "At first I think (Alida) was a little hesitant, but that's why we decided as a group."
Siminoe and Sandrock PAC members are hoping to raise $15,000 for the family to help offset medical and travel expenses and to fund a celebratory trip for Nicholas and his younger brother and sisters to Disneyland.
"It was very hard because we've always been very independent," Alida said regarding the fundraiser. "I feel like, yes, this is a trial, this is a challenge for our family, for (Nicholas), but we are very blessed. There are other families with much bigger challenges. This has been the biggest challenge in our life."
Meanwhile, Nicholas' health is improving now that his chemo treatments are less frequent, though he still struggles with the side effects from chemo including cramps in his hands and feet, damaged reflexes, and neuropathy in his legs — nerve damage which causes pain.
And though the chemo appears to be helping, it hasn't yet eliminated the tumor in his brain. Nicholas will also likely deal with repeat episodes later in life.
"It has been getting smaller on top of my head but they found another two on my spine," Nicholas said.
The young man is not easily discouraged, however. He was part of a winning baseball team over the summer — even in the midst of weekly chemo treatments — and went hunting with his dad on horseback in the fall.
"I kept on smiling whenever I jumped over the ditches," Nicholas said. "I'd just had a treatment, but I did okay. It tired me out."
The family has embraced the challenge as an opportunity to learn strength and compassion, Alida said.
"We have to look for the bright side in everything we face," Alida said. "If you dwell too much in the worry and unknown, you'll go crazy."
Nicholas appears mostly unphased by his trials, diving with gusto into his history books at school and looking forward to next summer's camping and hunting trips with his dad.
"I think that kids in his position really have something to teach us, especially adults, if we're willing to learn them," said Allen. "It's such a great family, and I feel really lucky to have him in my class."
For more information or to support the fundraising campaign, visit http://www.gofundme.com/fzbzvk.