‘You know if there’s something wrong with your baby’: dad shares two signs of a brain tumor

“The optometrist and the GP said she was fine,” Rob recalled, but the Welshman knew something was wrong. When Lacey-Mae started screaming in pain, he and his partner Donna rushed her to an emergency hospital in Cardiff. “They said that if I hadn’t brought her in on time, she wouldn’t have survived the next day,” Rob shared.

Lacey-Mae was diagnosed with a brain tumor called pilocytic astrocytoma, which required urgent surgery.

“When she was first diagnosed, it was hard because we didn’t expect it at all, everything was like a fog,” said Rob.

“This first moment of diagnosis is like being hit by a freight train – we didn’t expect anything so serious.

“It was a whirlwind. We took her in and a couple of hours later she was on the operating table in the hospital room.”

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Young Lacey-Mae underwent surgery to drain excess fluid that had accumulated around her skull.

Horrifyingly, Lacey-Mae suffered a stroke that affected the left side of her body, leaving her unable to see properly.

Lacey-Mae’s mom was hospitalized for more than four months to help her recover and struggled through it all.

“It was such a blur,” she said. “We’re just trying to focus on each day and process whatever news we get as best as we can.”

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Over the past six years, her daughter has completed three rounds of chemotherapy, the current course of which is due to end in May 2023.

“In many ways, she didn’t have a normal childhood because she missed out on a lot, especially in the beginning,” Donna said.

Rob added: “If [Lacey-Mae] wasn’t as determined and hard as nails, I don’t think my mother and I would have survived.”

Describing chemotherapy as a “waiting game”, Rob worries that the tumor may return.

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“There is always a chance that something will go wrong,” he said. “It’s a ticking time bomb as we just don’t know if she will come of age.”

He reflected, “That’s what it is – we wouldn’t help her by thinking about it, so we’re trying to stay positive for her.”

Turning his thoughts towards the positive, Rob shared, “Lacy loves school and even when she doesn’t feel well, she loves to learn.

“The school is really great – they gave her support in learning braille and managing her mobility as well as other departments.”

Rob said little Lacey-Mae “loves learning Welsh which she practices with all Welsh speakers at the hospital in Cardiff”.

He admitted, “She’s helped us through a lot, she never sits or wallows.”

Rob admitted that he and Donna knew they needed to pull themselves together “for her.”

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