Meet Mooresville’s WylieRae Henson. A 3-year-old fighting a brain tumor.
WylieRae was diagnosed with a brain tumor at six months old.
MOORESVILLE, N.C. (WBTV) - WylieRae Henson is a 3.5-year-old now. She lives in Mooresville.
Three years ago—at the age of six months—she was diagnosed with a brain tumor out of nowhere.
“Prior to that day, she wasn’t missing any milestones and we didn’t suspect anything,” her mom, Amanda Henson said. “Her pediatrician noticed that her head was big and referred her to a pediatric neurologist. But the doctor wasn’t super concerned. Neither were we. My husband, Nic, has a big head so it seemed normal. Nic took her to the appointment with the neurologist by himself as I was working. That’s how unconcerned we were.”
“It so happened that WylieRae started showing concerning neurologic signs, during the appointment,” Amanda said. “The neurologist sent my husband across the street to Novant Health Hemby Children’s Hospital. They did a quick MRI which showed a tumor on her cerebellum and recommended immediate surgery. I, meantime, had just left work and still didn’t know what was going on. Nic told me to hurry up: Our baby girl was undergoing brain surgery.”
Can you imagine leaving work to that message?
After the surgery, Amanda and Nic were told WylieRae had a 10% chance of survival.
However, part of her biopsy was sent to St. Jude Children’s Research Hospital in Memphis for review. There, they found something different. Doctors changed their tune and said said if WylieRae had a high dose of chemo for ten months, her chances of survival would increase to 50%.
“We had to try!” Amanda said. “We went to Memphis in September 2019, for a week to start treatments. We then returned home to do most of her treatments through Hemby. During the next many months she went through blood and platelet transfusions, and suffered difficult side effects from the chemo with lots of nausea. But, the tumor was shrinking. It was good news: In February 2020, her tumor was shrinking.”
Then, COVID hit. The world shut down. Healthcare limited who could come in and out of hospitals.
This meant WylieRae’s entire family had to go to Memphis and stay at St. Jude there from April 2020 to June 2020.
It was easier and more safe, Amanda says, to have those with compromised immune systems stay in one place. By September 2020, WylieRae was declared NED (No Evidence of Disease).
“We thought we were done,” Amanda said. “Eventually we got PT, OT, and speech therapy set up and were on our way. Until…her post treatment scans in January 2021. We learned she had a new tumor on her left side.”
This time, the family opted for surgery along with six more planned cycles of chemo. WylieRae and her dad stayed at St. Jude in Memphis, and Amanda traveled back and forth because she couldn’t leave her job (she’s a family physician in Mooresville).
“It is hard to leave your baby behind to undergo such poison while fighting cancer,” Amanda said. “She ended up with neutropenic fevers and infections every cycle and we lost count of how many blood and platelet transfusions. After the fifth chemo cycle, it took her little body two months to recover, and her doctor at St. Jude told us that long recovery, was her body telling us it couldn’t handle anymore chemo.”
Luckily, WylieRae’s scans in September of 2021, again, were NED. But then, scans this past January showed another tumor. A small one. Radiation was recommended.
“WylieRae underwent 30 sessions of radiation and had to be sedated for all of them,” Amanda said. “The first 20 were full brain and spine. The last ten were brain and localized more to her tumor area. We were told if this didn’t work, we’d exhausted all options.”
Are you still following this story timeline? This all happened to this little girl over the past three years. So where does it stand now? We’re not sure.
Her radiation ended in April 2022. Scans showed that spot lessened in density. But until scans at the end of this August, no one will really know if it worked. Also, these drugs take an effect.
WylieRae has gone through PT, OT, and speech therapy all during her chemo and radiation, but at three-and-a-half, isn’t able yet to walk or talk. She is vocal with making noises and can communicate some, but isn’t able to express how she feels.
“That makes it hard to know what she needs,” Amanda said. “She is behind in many areas, but almost always has a smile on her face. And, she’ll make you laugh! She brings us joy everyday.”
In honor of their daughter, Amanda and Nic started a 501c3 non-profit called WylieRae’s Love.
“We want to give back to others going through this hardship,” Amanda said. “Our mission is to help children under the age of three who are going through the burden of cancer treatments. We found there wasn’t much for her age group (diagnosed at six months old) and we want to provide loveys, blankets, adaptive clothing, age-appropriate toys, resources for parents, etc.”
Go to http://www.wylieraeslove.com for more.
We know you still have lots ahead, WylieRae. But please know you’re being thought of by many you don’t even know. Grateful to hear your remarkable journey (thank your mom, please, for sending our way).
The Good, the Bad, and Always Real. Welcome to #MollysKids.
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