Looking at the big smile on seven-year old Za’Nii’s face, it’s hard to imagine this little girl has been through so much. Five years ago her mom, Amber, noticed Za’Nii seemed a little too comfortable with her head always leaning to the left side.
“That worried me, and also because she walked “a little weird, even for a two year old,” recalled Amber. Their doctor had Za’Nii go through physical therapy for a year, but Amber said she wasn’t doing any better. After x-rays, more physical therapy, and several other medical opinions, she was sent for an MRI at age six. Results revealed that Za’Nii had a pilocytic astrocytoma brain tumor, which had already traveled part way down her spine.
Za’Nii was admitted immediately so a biopsy could be done. After a week in the hospital, they returned home.
“Despite trying to take care of all of this, I tried very hard to keep my job, so my mom – who is a CNA – would come over and help out with the kids while I was at work,” Amber explained. “She never called or texted me at work, so the one time she did, I knew something was wrong.” It was. No matter how hard she would try, Za’Nii could not make herself walk.
A new MRI showed her tumor had grown aggressively, and it left Amber with a new choice to make. Za’Nii could have surgery to try to relieve pressure from the spinal cord, or she could begin chemotherapy to see if the tumor would shrink. They chose to go ahead with surgery. Afterwards, Za’Nii had no feeling in her legs and began an in-patient rehabilitation program, which included learning to use a wheelchair. Chemo treatment was also started.
“During rehab, they began giving her chemo through an IV,” recalled Amber. “Her next MRI showed it was not working, and her tumor had actually grown. She was also on steroids, and they made her gain a lot of weight.” Eventually, Za’Nii’s chemo was changed to a newer, trial version in pill form, which Amber can administer at home.
“The chemo trial started about 9 months ago, and her tumor is shrinking. She is off the steroids and her weight is back down. She is getting her strength back, her nerves are coming back – she feels a little of her legs, and they are moving a little bit on their own,” Amber shared. But Za’Nii still has to use a wheelchair to get around.
Although she recently was approved for a power wheelchair, she can only use it at home and school, because the family car does not accomodate a wheelchair. According to Amber, this requires a lot of love and patience.
“We use her manual chair when we go anywhere. I have to transfer her out of the chair to the car seat, then back into the chair when we get there. I’m not complaining, because I would do anything for her, but you just don’t realize the amount of patience you need until you are in this situation,” Amber said.
While all of this was happening, Amber had to leave her job, because caring for Za’Nii is full-time. Which made finding the money to get Za’Nii to the hospital for treatment, even more difficult.
“Last year, after a really long hospital stay, I went to leave the parking ramp. I put the ticket into the machine to pay for it and it was over $600! No one warned me about this! I asked the attendant if there was someone I could talk to about it, so a social worker came down and covered most of it with vouchers, thankfully.” Amber shared. “She then talked about a foundation that could help us with these expenses, and introduced me to Compass to Care.”
Amber and her family want you to know how much your help means to them.
“Thank you! We appreciate everything you do. I know at the end of the day people have their own lives. I hate to ask for help, but without it, I wouldn’t be able to take my daughter to all her appointments so she can get better. Thank you so much!” said Amber.
Your donation to Compass to Care will help kids, like Za’Nii, travel to cancer treatment.
Positive Attitude
Amber’s positive attitude has carried over to Za’Nii, who always wants to help others.
“Her personality, even though she’s been through a lot, keeps a smile on her face. I tell her, when Mom gets back on her feet a little, then maybe we can help the next person,” Amber says.
In the meantime, Za’Nii is surrounded by other positive examples, including Amber’s mom, who helps when she is able. Amari, Za’Nii’s 10-year old sister, says “Za’Naii has to come first,” and tries to be attentive to her needs. The school has also been very supportive, working with Amber to design a plan that helps Za’Nii make the most out of every school day.
Here’s hoping Za’Nii’s future is full of fun and adventure!
Your donation to Compass to Care will help kids, like Za’Nii, travel to cancer treatment.