In November, Tiarah Lewis was home from work with a mild case of COVID-19 when she noticed a small bump on the head of her 4-year-old daughter, Kaziyah.
“She plays very rough, right. So, I didn’t think too much of it. She probably bumped her head or something jumping around,” Lewis said.
However, on Dec. 23, after Lewis was permitted to return to work – she’s a cashier at Durango’s Home Depot – she noticed Kaziyah had a bruised eye “like a black eye.”
“I was like: What’s going on?” Lewis said.
She took Kaziyah to Pediatric Partners of the Southwest.
Doctors at Pediatric Partners asked Tiarah to take her toddler to the emergency room at Mercy Regional Medical Center for imaging.
“They were really hesitant to say anything for sure about what was going on. From there, we just never went home,” Lewis said of her night in the ER.
About 1 a.m. Christmas Eve, Kaziyah and Tiarah were on a plane en route to be examined at Children’s Hospital Colorado in Aurora.
On Christmas Day, Kaziyah was diagnosed with neuroblastoma, a rare form of childhood cancer that commonly arises around the adrenal glands in the abdomen and develops and spreads around immature nerve cells in several areas of the body.
Neuroblastoma most commonly affects children 5 or younger.
Children’s Hospital wanted to begin treatments immediately – telling Tiarah her daughter was considered “high risk” for neuroblastoma.
Tumors have been discovered around Kaziyah’s brain, heart and abdomen. Doctors believe the original tumor began in Kaziyah’s abdomen and has since metastasized.
Kaziyah faces 15 months of treatment that will include chemotherapy sessions, bone marrow transplants using her own stem cells taken during the last round of chemotherapy, possible surgeries, radiation treatments and immunotherapy.
Since Christmas, life in the Lewis household has been upended as Tiarah concentrates on rounds of chemotherapy treatments for Kaziyah at Children’s Hospital.
Tiarah’s oldest child, Caeden Wright, 13, has been staying with his father in Iowa. Her eldest daughter, Ny’Laela Lewis, has been staying with her best friend in Las Vegas.
Tiarah is planning for her mother to come to Durango after Kaziyah’s fourth round of chemotherapy to help with her children as the family reunites.
“Literally, the last time my oldest kids saw me was when I said, ‘We’ll be right back. We’re just running to the doctor.’ Because that’s when I thought I was going to go to the pediatrician and come right home,” Tiarah said. “Now, this has gone through Christmas, New Year’s, her birthday, Valentine’s Day and pretty soon it will be St. Patrick’s Day.”
Last week, Kaziyah finished her third round of chemotherapy.
Neuroblastoma is so rare, Kaziyah must be treated in Aurora at Children’s Hospital Colorado. Her chemotherapy rounds last anywhere from 10 days to 15 days. The fourth round of chemo is slated to start Thursday.
She’s being treated with the chemo drug cisplatin, which must be given intravenously. The side effects can include nausea and vomiting; low blood counts; kidney toxicity; low magnesium; low calcium and low potassium in the blood; and hearing loss.
After her last chemo session, Kaziyah threw up 12 times in one day. Tiarah said she also has noticed Kaziyah has lost some hearing in her right ear.
“This would be hard for a grown person to endure much less a 4-year-old, and she’s a new 4. She just turned 4 on Jan. 17,” Tiarah said.
Tiarah must give her daughter shots of a blood thinner, Lovenox, 12 hours apart each day, but through it all, Kaziyah has endured.
“She’s been very brave, very strong. I think she’s braver than I would be,” Tiarah said.
Tiarah said her employer, Home Depot, has been greatly supportive through it all.
The firm has a program called the Homer Fund to financially help employees in need, and it has agreed to allow her to take a leave of absence to deal with Kaziyah’s 15-month treatment regimen.
Home Depot employees regularly bring food for her and Kaziyah when she’s in town between chemo treatments.
Home Depot’s corporate media relations office declined a request from The Durango Herald to talk with managers and employees at the Durango store.
Everyday expenses haven’t stopped as the family deals with Kaziyah’s illness.
Tiarah’s 2008 Honda CR-V needs a brake job, something she needs to attend to promptly, as the vehicle is needed to get over the three mountain passes to get to Aurora.
The hardest day for Tiarah came after Kaziyah’s first round of chemotherapy.
“Because of the texture of her hair, it ended up kind of clumping. She has very thick, coarse hair. So it ended up almost like it was starting to dread,” she said. “And so I just thought instead of trying to brush it, we’ll just help it along. So we just cut it.
“She’d never even had a haircut. It was her first.”
parmijo@durangoherald.com
Help available to families with severely ill kids
Given the rural nature of Durango, a support network has emerged to help families like Tiarah Lewis’ with expenses that come in dealing with children with complex medical conditions.
Dr. Kelly Miller, a pediatrician with
Pediatric Partners of the Southwest
, who helps coordinate services for families, said the first option is to keep children close to home – something that’s become more practical with the rise of telemedicine.
Unfortunately, for the most severe medical conditions, like the neuroblastoma Tiarah’s daughter, Kaziyah, is battling, telemedicine cannot replace in-person medical treatments.
“Her burden of disease and the complexity and intensity of her chemo is best done at Children’s Hospital,” Miller said.
More common forms of childhood cancer, leukemia and lymphomas, can be treated at Mercy Regional Medical Center, Miller said, and that helps reduce travel to the Front Range.
Economic support for families in Southwest Colorado is also available.
The Durango Derailers
raises more than $50,000 a year to help support families with travel expenses, providing prepaid cards for the costs of gas, hotel stays and meals.
AeroAngel
and aviation charity based in Denver, and
Angel Flight
, a similar service based in Tulsa, Oklahoma, can be used for non-urgent trips scheduled to the Front Range.
Colorado families served by Medicaid can use
IntelliRide
for car rides to their medical appointments.
Southwest Colorado is also graced with an anonymous donor who gives grants of up to $5,000 to families with children suffering from serious medical conditions, Miller said.
Anyone interested about services offered to families with children suffering from complex medical conditions can call Miller at Pediatric Partners of the Southwest at 375-0100.
parmijo@durangoherald.com
To help
Several online venues are available to help financially support the Lewis family as Kaziyah battles neuroblastoma:
, a GoFundMe page has raised $5,085 with a $10,000 goal.
, a Facebook donation page has raised $110 with a goal of $5,000.
, a wish list for Kaziyah on Amazon.
Tiarah Lewis also has a
Facebook page, Conquer Cancer with Zuzu
, and an
Instagram page Conquer Cancer with Zuzu
, where she posts updates about Kaziyah and her treatments.
People can also donate directly to the Lewis family using PayPal, Venmo, Cash App and Facebook Pay.
