WICHITA, Kan. (KSNW) — A Wichita family knows first-hand how much St. Jude Children’s Research Hospital does to help children fighting rare cancers. Peter and Melissa White’s little girl has rare brain cancer, and St. Jude is giving her a fighting chance at surviving it.
When Adele White was a baby, she appeared to be healthy like her three older siblings. But when she was about 14 months old, something odd happened.
“She had fallen down and just barely bumped her head,” Melissa said. “When she stood up, her smile was crooked, and she just had such a personality that we really thought she was just making a face.”
When the crooked smile didn’t go away after a couple of hours, Melissa took her to her pediatrician. The doctor said it was probably a virus and to come back in a few weeks if it was still there.
“We are such a chill family,” Melissa said. “I would say we’re freakishly healthy, which I guess God was saving the really big stuff for us because no one’s ever sick.”
The really big stuff turned out to be a brain tumor. After Adele’s condition did not go away, the couple took her back to the pediatrician, then to a neurologist. An MRI revealed the truth.
“Went back to neurology, and sure enough, they came back and said your daughter has a mass or something that shouldn’t be there,” Melissa said.
The cancer is Atypical Teratoid Rhabdoid Tumor (ATRT). Melissa said only about 20 new cases are diagnosed worldwide every year, and the survival rate for children under the age of three is about 10%.
Doctors in St. Louis performed brain surgery. Adele then underwent almost a year of treatment, including chemo and proton radiation.
But an MRI eventually showed the tumor was changing, and Adele was having a relapse.
“At that point, Children’s Mercy said, you know, there’s nothing else. We have nothing here. There’s nothing else anywhere except for St. Jude,” Melissa said.
“Peter and I looked at each other, and we’re like, OK, we’re going to get to Memphis, like whatever we need to do, we’re gonna get there.”
Melissa was pregnant with her fifth child, but the whole family packed into a vehicle and drove the 10 hours to St. Jude. They arrived around 10 p.m.
“They just welcomed us with open arms,” Melissa said. “They were so loving, like from the very first minute we walked in the door.”
“So that very first visit when we went we, she started a new trial drug that was only available at St. Jude,” she said. “It didn’t even have a name. It had a bunch of letters and numbers.”
Melissa and Adele stayed for several weeks so that Adele could get daily blood draws.
“There was a lot of testing when she first began this drug to make sure that it was not going to affect her.”
St. Jude does more than take care of the patient.
“They feed you. They house you. They cover transportation,” Melissa said. “We drove, and they told us on the phone, they said, ‘By the way, make sure you go to patient services, and they’ll cut you a check for gas.”
She had been told that families never get a bill from St. Jude, but she did not realize so much was covered.
“It’s incredible, and it’s humbling,” Melissa said. “Adele’s been a St. Jude patient for eight years. We’ve been flying back and forth. In the beginning, for two or three years, we flew every month to Memphis, stayed there a couple days, flew back. She had MRIs. She had EKGs. She had lab draws. She’s followed by endocrinology because she had radiation to her spine. She had neuro-psych evaluations ’cause she had full brain radiation, which can affect cognitive abilities.”
She said that is why the donations to St. Jude and fundraisers like the St. Jude Dream Home Giveaway in Wichita are essential.
“The people that are buying these tickets are literally helping cover our plane tickets. They’re helping cover life-saving medicine that she literally couldn’t get anywhere else,” Melissa said. “It’s very humbling because they’re really helping us to keep our daughter healthy.”
Adele is now 10 years old and has finished third grade. The treatment and checkups continue.
“She takes a pill three weeks out of four every month, and then she gets MRIs on a three to six-month basis,” Melissa said.
“She’s considered stable. She continues to take this trial drug. They call it chemo. It’s a targeted drug that specifically attacks her tumor and those cells versus her whole body.”
Melissa said that St. Jude is worth every cent that people donate.
“They use their money so wisely, and some charities you’re not really sure, right, or you’re scared that their CEO makes millions,” she said. “You can just look at my family and literally see exactly where your money went.”
Click here to reserve your ticket for the St. Jude Dream Home in Wichita. The tickets are available through 3 p.m. June 1.