A 10-year-old Vimy girl is selling her paintings to help send kids who have undergone brain surgery to camp.
Rachelle Zadunayski, 10, recently underwent surgery to treat a cyst on her brain, which inspired her to help others.
In August 2010, she was in a tube behind a boat when the rocking of the tube caused her cyst to burst, her mother Karen said. It would take more than two weeks before doctors were able to determine what had happened.
“After 18 days they had given her an MRI and realized that she had all that fluid on her brain,” Karen said.
The resulting ordeal gave Rachelle the idea to sell several pieces of her art collection as a way to give back to the Stollery Children’s Hospital, where she was treated.
In the summer of 2011, the staff of the Stollery 4D Neuro unit will hold their first annual Camp Neurosurgery at Camp He Ho Ha west of Edmonton. The camp is a chance for kids who have undergone brain surgery to meet and interact with others who have gone through similar experiences.
It also serves as a chance for the parents to get away from the medical aspect of their children’s lives for a while, Karen said.
The cost to send a child to the camp is $150, and Rachelle plans to sell her paintings to raise money to help send kids who otherwise could not afford to go.
“She’s adamant,” Karen said. “As stressed as I am, she’s adamant that she’s doing this art sale. She doesn’t care with or without me.”
Rachelle has a rare, congenital arachnoid cyst on the right side of her brain. Karen said only a small percentage of the world’s population have it, and many people go through their lives without knowing about it.
If it does rupture, it will often be in children, because they are often a lot more active than adults. In Rachelle’s case, the doctors believe the rocking of the tube she was in contributed to the cyst rupturing and leaking into her brain.
The leaking fluid contaminated Rachelle’s otherwise healthy cerebral spinal fluid, which then was not reabsorbed into her brain. This created a buildup of fluid, putting extreme pressure on her brain and giving her painful headaches, Karen said.
After an MRI determined the problem, Rachelle underwent surgery to relieve the pressure. Doctors drilled two burr holes in her skull, allowing nearly two cups of fluid to escape.
However, that was not the end of the problem. Four days later, Rachelle was still experiencing headaches, “so we knew the first surgery hadn’t worked,” Karen said.
The second surgery was more invasive. Termed a craniotomy, the doctors removed part of her skull to access the cyst. They created a canal behind the cyst to drain it. They also inserted a shunt that they can activate in case the problem flares up again in the future.
They were unable to remove the cyst because it is woven into her brain tissue.
Karen said the rarity of her daughter’s condition has prompted Stollery hospital staff to look at her in more detail.
“Since she’s such a rare case, they’re actually doing a case study about her,” she said.
This means there is regular followup and correspondence with the hospital.
“If we don’t call them at the Stollery once a week, they call us,” she said. “They’re wanting to see why she had these issues after surgery.”
Although Rachelle has experienced no physical or medical complications since the surgery, she has developed some personality and learning issues.
Karen said Rachelle in unable to comprehend much conversation because her brain is under so much stress. She said the Glenrose Rehabilitation Hospital tested Rachelle for listening and she scored a 6/100.
“If I were to call her at home and say can you do this and this and this and this, she has no clue what I’m trying to tell her,” she said. “Her brain can’t take all that information in.”
In addition, she is facing roughly a year and a half of recovery before her brain is healed and less stressed. This means Rachelle’s next year of school is essentially a learn-nothing year, Karen said.
The Glenrose staff will continue to follow Rachelle until she’s 18, as well as work with her schools to ensure she gets the help she needs.
One other outcome of the experience is she can no longer play any physical sports in order to protect her head. She has since started playing wheelchair basketball in Edmonton, Karen said, as a way to keep active.
Going through the experience was hard on the family, Karen said, but Rachelle handled it quite well.
“She was actually really good,” Karen said. “She was of course very scared, but the doctors at the Stollery tell the kids exactly what’s going to happen.”
As a girl, however, “she was very mortified when she saw herself after surgery and what she looked like” with her hair cut and the staples in her scalp, Karen said.
That being said, Rachelle has not been putting up with any guff, and has lost her self-consciousness about going to school with her shaved head and staples.
On the other hand, Rachelle’s parents and family were “terrified” of what would happen to her, Karen said, but credited the hospital staff for helping them through it.
Still, it was an adventure.
“When I look back and I tell people about it, they kind of look at me and say, ‘Wow, how did you guys ever do this?’ and, you know what, I don’t know. We just did,” she said.
As they move forward, Karen said this journey is one that has humbled the family. Never again will she complain about anything.
In fact, Karen said Rachelle’s 16-year-old sister Allison has taken a personal and practical view on what her sister went through.
“If Rachelle can survive brain surgery, I can survive high school,” Allison said.
Rachelle will be touring Westlock and area throughout February with her art. She will be at the chamber of commerce meeting on Feb. 8, the Hazel Bluff Hall’s performance of The Villain wore a Dirty Shirt on Feb. 20 and the Cultural Arts Theatre on Feb. 25 for the Figura Theatre performance.
Her artwork will also be set up at the Flower Shoppe, along with works from other local artists, from Feb. 21-28. Proceeds from the silent auction will go to help send kids to Camp He Ho Ha.
