Now, just over two months after Alidiah’s life-threatening diagnosis, Simpson said she and her family are still trying to adjust.
“It’s turned our whole life around,” Simpson said. “Until you have a kid who has cancer and a brain tumor, it’s really hard to explain. She’s a special little girl, and it’s just really affected us all really hard.”
Prior to her daughter’s diagnosis, Simpson said Alidiah was exhibiting some worrisome symptoms, including slurred speech and difficulty balancing, walking or feeding herself. She was diagnosed on June 5 with a highly aggressive brain tumor called diffuse intrinsic pontine glioma, or DIPG.
According to St. Jude Children’s Research Hospital, DIPG starts in the brain stem, which connects to the spine and controls breathing, heart rate and many nerves and muscles. There is currently no cure for DIPG, and the survival rate is very low.
Surgery to remove these tumors is often not possible because of their location, Simpson said. The only treatment options available are radiation and chemotherapy, neither of which is usually successful long-term.
For the past two months, Simpson and her family have been in Memphis, where Alidiah has been receiving treatment at St. Jude. The family returned to the Tri-Cities on Aug. 1, the first time they have been home since the diagnosis.
So far, Simpson said, Alidiah has received 30 rounds of radiation. She and her family will return to Memphis at the end of this month, at which point Alidiah will start her first chemo treatment.
In the meantime, Simpson said she wants to give Alidiah anything she wants, including a pool party they’ve been planning for the past few weeks.
“If she does OK and she’s up to it, we are still going to do it,” Simpson said. “That’s all she’s wanted the whole entire summer.”
Simpson is also tasked with catching up on bills, which she said have piled up since they were last home.
“Right now, I’ve got probably $20,000 in medical bills, but that was before she got to be a St. Jude’s patient,” Simpson said. “We’re just really trying to get caught up with our house bills, because we’ve been gone for two months and we haven’t worked for two months. We’re just trying to stay ahead of ourselves before we go back again (to St. Jude).”
Simpson said she recently received a donation from Gunnings Baptist Church in Blountville. The family is also accepting donations through a GoFundMe page, which can be found by searching for “Alidiah Simpson GoFundMe” on Google. People can also donate at any local Waffle House location.
Simpson said she’s going to continue trying everything to make sure Alidiah is comfortable and enjoys her time at home.
“I’m just trying to make sure that whatever she wants, she’s able to do, because her prognosis is not very good. The doctors told us to make sure that we’re able to spend every minute with her and try to do everything that we could with her that she wants.
“That is our biggest goal is just making sure that, it doesn’t matter how small or how big it is, if she wants it, we try to do it.”