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Childhood brain tumor: being near bright screens was making my son sick

Vivian, a 55-year-old mother from Sydney, claims that even before her son’s condition was identified, she sensed a significant problem. She tells Kidspot, “I guess it was mother’s instinct, there wasn’t really anything I could pin it on – occasionally he’d drift out. “Jack acquired little tics in kindy, but one of his buddies also did, and I believed he’d grow out of it,” said his mother.

When Vivian brought him to the doctor, the physician advised a psychologist; however, the latter concluded that no underlying problems existed. I tried vitamins, naturopaths, you name it; I was desperate, going to numerous physicians and specialists, Vivian explains.

“MRI wasn’t required, they said to me,”

Then, events started to get worse. Absent seizures began to occur in him, but no one understood what they were at the time. Jack was made to sit in front of the class, in front of white screens, which only made matters worse because he was getting in trouble at school for not paying attention and daydreaming.

“Teachers believed Jack was simply being mischievous. He began whining that the white displays and bright lights were hurting his eyes. He used to remark, “Mom, I’m trying to be a nice kid. Do I have to sit in front of the class?” after returning from school. Vivian was done. I demanded an MRI even though I’d previously been informed it wasn’t required after asking a few times.

“They discovered a tumor the size of a matchbox.”

The nine-year-brain old’s had a massive tumor, the size of a box of matches, according to the MRI. “We were stunned and heartbroken beyond belief. We had sought the advice of so many experts once I had processed everything, she adds.

They eventually received a diagnosis because of Vivian’s determination to stand up for her kid and stubbornness to give up. We were instructed to immediately proceed to Westmead Children’s Emergency. Jack was in need of medications to lessen the inflammation so that doctors could do the life-saving operation, so he didn’t leave the hospital for over three weeks.

In an effort to calm him down, we told Jack he had a small lump on his head that needed to be removed. The nurses called it “roid rage,” she says.

The wonderful news was announced by the surgeon.

Vivian was cautioned by the doctors that the procedure was risky. “I said, “What could possibly go wrong?’ believing it would affect his vision. Death, the surgeon responded. We were pacing outside during the procedure, and soon the neurosurgeon emerged and declared, “All gone, all good.” May I give you a hug? I said. He grinned, so I did.

But then, a year later, the unthinkable occurred. Cancer returned. Jack was eager to play soccer the following morning on Friday night, but in the early hours, he started throwing up and experiencing severe headaches. He was returned to Westmead by Vivian.

The only clear indicator that it was back, she says, was that he had been twitching a little bit some nights while sleeping. She wanted to think everything was well. We were in for a fight this time; the physicians were perplexed as to why the tumor had returned given how uncommon it is for this sort of tumor.

After doing a preliminary exploratory operation, they found that Jack’s brain and entire spine were covered with cancer. Because there were little fragments of cancer all throughout, Vivian claims that the disease was incurable. I was inconsolable because I had waited so long to have my lovely baby; he is my everything, and I couldn’t bear to lose him.

Chemo didn’t work,

Also, Jack’s brain had swelled, which was crucial. Although Jack was using powerful painkillers, no one could help him, according to Vivian. Time was running out, and Jack’s condition was worsening quickly. He received normal chemotherapy, but it didn’t work, leaving him confined to bed and unable to move. Every week lumbar punctures were necessary to lessen the swelling since, without them, the pressure on his brain would cause him to lose his vision.

Jack once questioned his father, Alex, “Are I going to die?” “Mate, of course not,” Alex responded. “It’s incredibly difficult to try to reassure a youngster that everything will be fine when it’s clearly not,” explains Vivian. “He understood how ill he was.”

“Jack is now 15 years old, which is a huge blessing for us.”

Jack participated in the research project Zero Childhood Cancer. According to Vivian, some of the worst instances of pediatric cancer are admitted to the program. Yet she maintains that every child should have the chance to participate.

In order to make the treatment strategy more specific, scientists on the program discovered the genetic abnormality that was fueling his cancer’s development. Three weeks later, the genetic code was deciphered by researchers, and a new therapeutic strategy was put into practice. He had to take a mixture of these two medications. Vivian recounts, “Jack was losing ground when all of a sudden there was this remarkable turnaround.

Moriah Ballard
Moriah Ballard
Moriah Ballard joined the KPRC 2 digital team in the fall of 2021. Prior to becoming a digital content producer in Southeast Texas and a Houstonian, Moriah was an award-winning radio host in her hometown of Lorain, Ohio and previously worked as a producer/content creator in Cleveland. Her faith, family, and community are her top passions.


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