Burleson baby has spent half her life fighting brain cancer

Kaelyn Hazelwood hasn’t known much about life beyond the poking and prodding, the feeling bad and the parade of strangers, many in white coats, who are trying to help.

Her parents, Kristin and Derek Hazelwood of Burleson, are happy that their 8-month-old daughter is on the backside of her rigorous treatment for a rare brain cancer, a disease that has kept them at a Tennessee hospital since early September. And they’re thankful for the successes along the way.

But there are still many more steps to go.

“It’s been a roller-coaster ride,” said Derek Hazelwood, 32, a nurse who is working on a master’s degree to be nurse practitioner. “I want to take her home right now. But we just try to do the best we can.”

Even after all the treatment, Kaelyn is still more than a month from going home.

Born April 10, Kaelyn had a typical first four months. In August, she developed lumps on the right side of her head, and Aug. 22, after she became lethargic, refused to eat and starting vomiting, Kristin rushed her to a nearby hospital. The diagnosis was gas, Kristin said, and they were sent home.

But the next morning, Sunday, after Kaelyn’s symptoms persisted, they took her to Cook Children’s Medical Center in Fort Worth.

“A CT scan showed a mass in her brain,” Kristin said. “They had to remove [the mass] before they could do the pathology to find out what kind of brain tumor it was.”

After an 11-hour surgery to remove a golf ball-size tumor, doctors diagnosed Kaelyn with choroid plexus carcinoma, a rare, aggressive cancer that represents 3 percent of brain tumors in children, according to the websites of Dana-Farber Cancer Institute and St. Jude Children’s Research Hospital, both recognized specialists in childhood cancers.

Kaelyn left Cook after 13 days to join a clinical trial at St. Jude in Memphis, where she underwent chemotherapy and, later, radiation treatment.

Living on the road has been wearing down the family.

“At first it’s so overwhelming, and now it’s become so routine and normal that I just want to go home,” said Kristin, who like her husband is a native Oklahoman, although she has lived in the Fort Worth area since she was a kid. “I miss Texas. I don’t like Tennessee at all. We’re ready to go back home and see friends and family.”

Expecting a mound of medical bills even though the family has insurance from Derek’s job, Kristin sought help from the crowdfunding website GoFundMe.com. The account, created Aug. 26, has topped the $18,300 mark thanks to 210 donors.

Kristin said they have used only “a few thousand dollars” of the donations so far, trying to be conservative. Her husband, who works at a Dallas-Fort Worth hospital chain, took paid family leave the first several weeks after moving to Memphis and has since been on unpaid leave. They said his employer has notified them that his job is not guaranteed if he’s not back on duty by Wednesday. He’ll make the deadline, they said, to preserve his health insurance for the family.

For weeks they have been getting by on Kristin’s job as a graphic designer for PartnerComm Inc. in Arlington, which, she said, has allowed her to draw part-time pay since Kaelyn’s birth without having to work.

“We’re really trying to hang onto it, because when we go home, that’s when the expenses are really going to come,” said Kirstin, 27, a first-time mom. “We’re hoping to use it to get us through 2016.”

Kaelyn’s projected return home at the first of February still depends on her third MRI, set for mid-January, finding no evidence of disease, like the first two did.

But an exhaustive medical regimen will follow her home. It includes going back St. Jude’s twice for chemotherapy, then it’s oral chemo at home, and then focal proton radiation treatments, followed by more oral chemo at home. If all goes as planned, Kaelyn can start living a normal life by October.

Still, she’ll have to continue developmental therapy to catch up with what infants her age are doing. She has to regain some physical skills lost because of the surgery, but also because the cancer has increased the size of her skull beyond normal for her age — a normal side effect of that cancer — making it difficult for her muscles to adapt to the added weight.

“It took months to get her to eat from a bottle,” Kristin said. “At 6 or 7 months, she should be able to sit up without assistance. She’s 8 months old and hasn’t done that. But it’s hard to make physical progress when you feel like crap all of the time.”

Derek looks forward to doing things other young families do, like taking Kaelyn to a Disney theme park, when she’s a little older.

“We’ve got a supportive family, a supportive church,” he said. “We just want to do everything we can to help her to live a normal life.”

For Derek, normal includes fishing. “I love fishing,” he said, adding he’d like to get Kaelyn interested. “Absolutely, as soon as I can. I’d like to have her do it all.”

Family, friends and church have already softened the grinding medical experience, turning out in reliable streams during the stays at both hospitals. At least 20 loved ones stayed for the full 11-hour surgery at Cook Children’s.

The Hazelwoods are planning to find a way to help others in similar situations “once we get through this,” Kristin said.

The assistance she’s seen ranges from emotional support to financial help, including setting up charitable tax-exempt accounts, to simple care packages, she said.

“There are groups that have ways to help,” she said. “The hope is, once we’re done, we can pay it forward.”

This story was originally published December 26, 2015 at 4:42 PM with the headline "Burleson baby has spent half her life fighting brain cancer."