Article from Carmel Valley News

Students, community rally behind Solana Highlands firstgrader and encourage everyone to‘LIVE LIFE TO THE MAX’
By Janice Coy

Students at Solana Highlands Elementary School who are learning about caring as part of the Six Pillars of Character program have had the opportunity to participate in a hands on manner by showing their support for a fellow student with cancer.

First grader Max Mikulak is battling a recurrence of neuroblastoma (NB). The six year old was first diagnosed with the cancer, which attacks the bones and their marrow, three years ago. His initial treatment killed all evidence of the disease, but last fall, a bone scan showed new spots of it on his spine.

Max is currently taking an oral form of chemotherapy and is able to regularly attend his first grade class where he is taught by Lisa Sturt.

Max’s mother, Melissa Mikulak, said the boy’s teachers have been very supportive of him and the family. This fall, Sturt asked the family if she could spearhead a fundraiser for the Magic Water Project, a non-profit organization that funds clinical research trials for patients with NB.

As part of the fundraiser, the school sold orange reminder bracelets embossed with “LIVE LIFE TO THE MAX” for a suggested donation of $5 each. Sturt said $10,707 was raised, and 1,379 bracelets were sold. Orders for the bracelets were closed out last Thursday, but Sturt said donations could still be made to the Magic Water Project at http://www.magicwater.org/.

“With September being Childhood Cancer Awareness Month,” Sturt said, “we thought this would be a tremendous opportunity to show Max and the Mikulaks how much we care.
Sturt said classes at other schools are participating in the fundraiser as well, and Solana Highland families are “spreading the care beyond our community” by sending bracelets around the country and abroad.

“The outpouring of generosity and kindness has been overwhelming and there’s not a child or family that deserves it more,” she said. “The Mikulaks are always smiling and positive. They find the good in each and every situation.

“They have learned that each moment is precious.”

Andy and Melissa Mikulak have lived in Carmel Valley for five years with Max, their 8-year-old daughter Hannah, who is in third grade, and their 2-year-old son Nicolas.
Mikulak describes the caring as incredible and heartwarming. Last year, she said, Max’s kindergarten teacher, Ms. Wietz, also spearheaded a fundraiser for the Magic Water Project and raised $10,000.

“It’s a really, really great feeling to have so much support,” she said. She stays positive, she says, because “it is simply the only way to get through a crisis, especially with children involved.”

Mikulak, said finding out about the cancer’s recurrence was “even more shocking” than the initial diagnosis.

“What you learn is that NED (no evidence of disease) doesn’t mean your child is cured,” she said.

Mikulak said it was Max’s pediatrician who first suspected that he had NB which was later confirmed by a oncologist at Rady’s Children’s’ Hospital. His symptoms included a low-grade fever that lasted for about a month, constipation and pain in his legs that caused him to limp.
“When we would go to pick up Hannah in kindergarten, he would ask me to carry him, “ she said. “Eventually, he would lie in bed and couldn’t even get up to go pee.“It was horrifying.”

Mikulak said it is not known what causes NB, but research has shown that, while it is not genetic, it could be triggered while the fetus is growing nerve cells.

After his initial diagnosis, Max underwent chemotherapy and a stem cell transplant.There was no evidence of the disease afterwards.

“There is no treatment protocol for recurrent NB,” Mikulak said. “There is no cure for it, so there’s no real protocol.”

When the spots on Max’s spine multiplied, the Mikulaks decided, with the oncologist, to follow a treatment of 11 rounds of high-dose chemotherapy. Max lost his hair and had to miss 40-50 days of kindergarten last year because the chemotherapy suppressed his immune system. At the beginning of the summer, a bone scan showed that the cancer had shrunk.

“Last year he was completely bald, and sometimes he would have to wear a mask to school,” Mikulak said.

Despite his absences, his kindergarten teacher kept him a part of the classroom by visiting his kid-friendly blog with the other students. Max’s Web site is http://www.mikulak.org/. Mikulak said the teacher also came to the clinic where Max was to do homework with him.

“With the oral chemotherapy, his blood doesn’t get blasted, so he is able to participate in activities,” she said. “There’s actually fuzz on his head which is exciting.

“He goes to class every day. His mental health is just as important in helping him get through this so we allow him to do whatever activities he can.”


Anonymous said...

What a great article about you and your son! Sounds like you are blessed with teachers and a community who are so supportive!

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