Za’Nii’s Relentless Recovery
Za’Nii is only 9 years old, but she’s already been through more than most individuals would in a lifetime.
Around the time Za’Nii was 2, her mother Amber began noticing slight irregularities with the way that she walked and sat. Though Amber did bring this up on multiple occasions with Za’Nii’s primary care provider, she was told that these were minor issues that she’d outgrow in time. But still, something didn’t feel right.
“We went to multiple doctors and received a variety of diagnoses or theories about what was going on, but overall, everything kept coming back normal,” Amber says. “It’s hard as a parent to explain that you just know something is wrong, but it’s even harder when no one can tell you what to do about it?”
Eventually, Za’Nii was examined by a spine specialist in Chicago, Illinois and an MRI was performed. What was revealed was that Za’Nii had a pilocytic astrocytoma, a form of cancer and brain tumor that was applying significant pressure on her spine. Though the news was devastating it did provide some solace, as at least now there was plan.
Za’Nii began a rigorous course of chemotherapy to attempt to slow the spread of her cancer, but these treatments proved to be ineffective. Ultimately, the only option was surgery and while the surgery to remove Za’Nii’s tumor was effective, it left her paralyzed from the waist down.
A Leap of Faith
Za’Nii has made significant progress since that very difficult period of time and Amber says that looking back on it now, is surreal.
“I can’t lie, I don’t know how we made it through all of that to get to where we are today. But a big part of that was when I decided to move us to Minnesota,” Amber says. “We are tremendously thankful for the care we got in Chicago that saved Za’Nii’s life, but in the years that followed we just felt like we needed more support. I had read about the outstanding medical facilities in the Twin Cities and kind of just made up my mind that Minnesota was where we needed to be. To move our family was definitely a leap of faith, but one I’m very happy that we made.”
Za’Nii Visits Gillette
While Za’Nii had put cancer in the rearview mirror, she had also developed neuromuscular scoliosis and kyphosis, two spine conditions that were negatively affecting her posture and quality of life.
Upon arriving in Minnesota, Amber brought Za’Nii to Gillette Children’s to meet with spinal surgeon, Tenner Guilluame, MD.
“The curve of Za’Nii’s spine was clearly trending in the wrong way. We had tried a brace to see if it would slow the progression of the curve, but once again it seemed that surgery was the only option,” Amber says. “It wasn’t easy as to prepare for the surgery, Za’Nii had to have her spine straightened over the course of four weeks through Halo traction.”
Halo-Gravity Traction is a multi-stage process where a surgery is performed to attach a metal ring to a child’s skull using small metal pins. Then, using a pulley system over a period of weeks, weights are applied to gradually straighten a child’s spine. This process typically lasts 1-2 months and culminates in spinal fusion surgery.
“While we were understandably nervous about another surgery, every aspect of the care we received at Gillette up to that point made us feel confident,” Amber says. “Four weeks is a long time for your child to be largely immobilized, but the staff at Gillette and Dr. Guillaume made us feel like everything was going to be OK.”
“After her Surgery, she was a different kid”
Following surgery, there are certain physical goals that hope to be accomplished, but some of the things that can’t always be accounted for are the other positive benefits that follow.
“Every bit of progress matters. It seems obvious and maybe it is, but you don’t always know how the physical health of your child can affect their mental health,” Amber says. “Za’Nii was always an outgoing kid, but I noticed a big change in her following her surgery. She could sit up straighter and communicate easier. She had a lot of friends before, but she has more now.”
While Za’Nii will likely continue to need care in the coming years, Amber feels as though they’ve turned a major corner after her surgery at Gillette.
“Za’Nii has had to wait for a lot of stuff to happen for her, and too long in most cases. She has had to learn how to do things in different ways than other kids, but because of that, her excitement for everyday things is infectious,” Amber says. “She loves to do basically anything: Art, drawing, painting, going to the mall (she definitely loves shopping). I try not to treat her differently than anyone else and I encourage her two brothers to do the same. Our journey has been a long road, but it’s the one we’re on. During the pandemic, I actually wrote a book about it, and I look forward to people being able to read it soon.”