A Washington State couple has made it their mission to share their late daughter's story after the little girl lost her battle with one of the rarest childhood cancers in the world in an effort to raise awareness in the hopes that it can one day bring about a cure.
Michelle and Cory Green first noticed something was off with their 6-year-old daughter Alivia while watching her play soccer.
"We notice her arm dangling a little bit, and that was the first symptom or sign that something's not quite right," Cory tells Inside Edition Digital.
They took Alivia to the doctor, where she was diagnosed with a pinched nerve. But it wasn't long before they noticed more things that weren't right.
"Something is definitely wrong, because she's drooling and she has zero movement in her arm now," Michelle says. "I had this dreaded feeling."
After several doctor's visits, officials ruled out a stroke and other medical conditions. Finally, Alivia was diagnosed with diffuse intrinsic pontine glioma. DIPG is a form of brain cancer that affects roughly 300 children a year in the United States between the ages of 5 and 10, according to the National Cancer Institute .
"And I just froze and was like, 'Is this for real? Is this really happening?'" Michelle says. "I didn't know exactly what they were telling me. I knew it was really bad. I didn't really know DIPG was terminal. I didn't look anything up until I got home, and that's when reality set in for me."
The next step was for the parents to explain to Alivia why she didn't feel well.
"We did explain to her that she had a bump in the back of her brain, back by her spine, and it was growing and causing pressure on her nerves and everything in her body. And that's why she's not able to move her body. And the doctors are doing everything they can to help her and get her movement back."
After extensive research and learning of the short lifespan of someone diagnosed with DIPG, Michelle and Cory weighed their options. They learned that there was no guarantee that radiation would help Alivia's condition. Others in the DIPG community who they spoke tooften said to instead just focus on the time they had left with Alivia.
"We were told, 'Go home and make memories,'" Cory says. "The worst thing that you could possibly hear is 'go home and make memories. I'm sorry, we have nothing that we can do to save your child. Just go home and make memories.'"
Michelle's sister, Melissa, who had just lost her child to cancer, encouraged the family to start treatment.Alivia began radiation in combination with a chemotherapy pill for several months.
"She was the bravest little warrior I've ever seen," Michelle says. "I was amazed by her. I was amazed by her strength through it."
Although doctors said radiation doesn't usually shrink a tumor in DIPG, an MRI showed that Alivia's shrank from the size of a lemon to the size of a pea.
"So at this point, we're like, are we looking at a miracle?" Michelle says. "Are we actually witnessing a miracle? This is so rare. I mean, what are the odds? That was a good day. That was a really good day."
Following that MRI, Alivia's movements improved. She played sports, could run and could do the splits.But a few months later, her symptoms returned. And, Michelle says, they came back more aggressively.
"The first thing that went was her voice," she says. "Her eye started turning in. I had noticed her arm started doing something.
"I was in the car crying, trying to figure out how to explain to Alivia that the bump is coming back. And I finally just took her on my lap," she says. "I told her it's DIPG and explained that and that other kids have it."
They restarted treatments and joined a clinical trial in Denver, Colorado. Because the family didn't have the finances to travel back and forth, their town raised over $18,000 for them.
"For that to happen was just another miracle in our eyes," Michelle says.
But Alivia's health slowly declined. She suffered a seizure, she required feeding tubes to eat, was in need of constant care, her limbs stopped moving and she became nonverbal.
"Our options were running out, but the doctors were trying so hard to help us," Michelle says. "I told my husband, 'We have to try. We're not going to just give up.' You don't want to believe that your child's dying, so you're doing everything you possibly can to save them, even though the diagnosis is terminal."
"Livy wasn't upfront and center anymore, she was no longer really there. She was pretty much gone at that point," Cory says.
After coordinating with doctors, Alivia was taken home to live her final days surrounded by family and loved ones. Alivia died on Jan. 2, 2023. She was 7 and her death came 15 months after her initial diagnosis.
"It was very peaceful and very beautiful because she didn't struggle," Cory says. "It was just instant relief. It was very peaceful. Of course, we were broken and crying, but in the back of our heads, we were also relieved that she wasn't in pain or suffering anymore."
Since Alivia wanted to be a police officer, their town's chief of police helped make her funeral extra special. During the ceremony, law enforcement gifted her family with a flag and gave Alivia a caravan through the town.
After Alivia passed, Michelle relied on her sister, Melissa, who lost her son, Bryson, to cancer years before.
"She was there every step of the way," she says. "It's such a horrible situation to walk through, but I'm grateful that I have her to walk through with it, and I'm not alone."
The family also researched to see if genetics could have been the reason why two children in their family died of cancer, or if it was purely coincident.
"We actually asked the doctor that, and it was completely unrelated," Michelle says. "Dr. Henderson said it's very rare for people that close to experience two totally separate childhood cancer diagnoses within that time span and have to go through it twice."
The parents say they are still grieving.
"It's like the whole world around you continues to go on, but you stop in that moment," Cory says. "I really miss the hugs after work. It was always the run-up to the door and the anticipation of coming home and her being right there. And 99% of my time after work was spent with her just hanging out. She was my Buggy."
Michelle now uses social media to connect with others in the DIPG community and to keep Alivia's memory alive. She also hopes getting the word out about DIPG will help find a cure.
"I don't want her to be forgotten. Her life mattered," Michelle says."We don't want any more kids going through this. We want a cure for this. We need help, we need more options. We just really want more funds. For Congress to push for more research, more availability, because these children deserve it."
Michelle and her sister have also started the " Bubba and Bug " foundation in honor of their children to financially support local families affected by cancer
Cory and Michelle say experiencing the death of a child is extremely difficult, but they stress that parents in the same position should make the most of the time their children have left.Don't take criticism about the decisions you do make, and make all the memories you possibly can while you're going through it, they say.
For more information on DIPG, visit Cancer.gov.
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