Addy Joy Sooter is beautiful, energetic, stubborn, loud when she needs to be, and sometimes shy around strangers — everything a four-year-old girl should be in almost every way.

Addy Joy Sooter is beautiful, energetic, stubborn, loud when she needs to be, and sometimes shy around strangers — everything a four-year-old girl should be in almost every way.

The daughter of Carthage native Matt Sooter and Neosho native Chandra (Cole) Sooter is also battling a form of brain cancer that is usually fatal to children.

Hope turned to sorrow this week as Addy Joy's health took a dramatic turn for the worse.

After several months of infusion treatments in Mexico which seemed to be shrinking and controlling the tumors in Addy Joy's brain stem, this aggressive form of cancer, called DIPG, came back and, according to Matt Sooter, on a Facebook post on Thursday, May 10, had grown dramatically in his daughter's spine and brain stem.

“I know you've all been waiting for MRI results,” Matt Sooter posted on the Facebook page Hope for Addy Joy. “I wish I had better news. Addy's MRI shows that her tumor has spread. It has moved down the brain stem into the cerebellum which is likely what caused the need for her shunt. There is also a large mass in her spine that is placing pressure on her spinal cord from the C1 to C11 vertebrae. Our doctors here have no options for us, and it seems the treatment in Mexico is no longer working. We're out of options. We are shattered. Everything within us screams to keep fighting, but we've run out of weapons with which to do so. Addy is losing ground quickly. We don't know how much time we have her for so we're going to make the most of it. Thank you for your prayers.”

Matt Sooter confirmed he made the post in a brief telephone conversation with The Carthage Press. He said the doctors at the Monterrey, Mexico, hospital had sent Addy Joy and her mother back to their Rogers, Ark., home after installing a shunt to remove excess fluid on her brain.

He added another request.

“Encourage people to get mad about it,” Sooter said. “To call their representatives and demand that we fund cancer research for children.”

 

Devastating diagnosis

DIPG, or Diffuse Intrinsic Pontine Giloma, grows within the brainstem of its victim, affecting muscle control, breathing and other essential bodily functions.

According to the Facebook community, DIPG Support and Awareness, the cancer is inoperable and incurable and the chances for survival are less than one percent.

The page said children are typically diagnosed at ages 5-10 but it can affect all ages, including adult.

Ann Sooter, Carthage, Matt Sooter's mom, said Addy was one of the youngest children ever diagnosed with this cancer at two years of age in November, 2016.

In a story published in the Carthage Press in November 2017 about a fundraiser for the family, Ann Sooter said there were no treatments available from American doctors, but doctors in England in Mexico were working on experimental treatments that were showing hope.

Addy Joy was accepted into a program in a hospital in Mexico.

She went through seven treatments through April, then had to make an earlier-than-planned trip to Mexico earlier this week when Addy began showing unusual symptoms.

That's when the doctors found the new growths on her brainstem and spine.

 

Experimental treatment

The family held a pancake feed fundraiser at the Oak Grove School, south of Joplin in Newton County on April 14.
Chandra Sooter described the treatment to The Press at that event.

“It's a type of Chemo which is delivered through and intra-arterial method which goes in through her leg and takes the chemo medicine directly into where the tumor is, attacking the tumor within her head,” Chandra said. “They don't have the opportunity to do this in the States yet, they haven't figured out how exactly to get it in through the intra-arterial method, into the brain. So they're doing it in Mexico and it's really working well for her and for other children.”

The only treatment available in the U.S. is radiation, and that seems to work for a few months, but it also causes damage to healthy brain tissue and can't be used very often.

“She got really bad last year,” Chandra Sooter said. “At this point in time last year (2016) she couldn't walk, the radiation helped with that, it brought her back to walking again. We started noticing the return of symptoms in July when she was unsteady and started to stumble again. This treatment is bringing her back from that again, where we can't do radiation again because you have to wait a certain amount of time, this one is completely different and it works a different way. It's chemotherapy and it's working.”

 

Big costs

As Addy Joy played with her brother, Jackson, 5, and other cousins and friends on the stage of the Oak Grove School south of Joplin on April 14, Chandra said doctors were hoping to be able to space out the treatments from every three weeks to every eight weeks, then to every three months.

“We're trying to get to an every-three-month routine of maintenance treatments,” Chandra said in April. “It's a very aggressive tumor and we want to stay on top of it and not allow it to get a foothold. There are two other children who have been declared NED, no evidence of the disease. We're hoping to get to that point.”

The fundraisers are needed because the costs of the treatments in Mexico, and the travel costs, add up to about $30,000 each, none of which is covered by insurance since this treatment is experimental.

“To date, we've spent over $175,000 in the last four months,” Matt Sooter said in November, 2017 prior to the four treatments in 2018. “Our goal is to raise $340,000. We're over halfway there and it takes time. Hopefully this stretching out of treatments will help with that somewhat, but it's a huge massive goal.”

In December, coworkers at Mercy Carthage Hospital, where Matt's mother Ann Sooter, works, organized a fundraiser based on the Disney Princesses for the family.

Matt Sooter said the costs were straining the family's finances, but they were getting through with help from friends.

“We don't have the finances for this, we are completely reliant on donations and people's generosity. Insurance doesn't cover this either,” Matt Sooter said. “We'll do whatever we have to do to save her, we'll take out loans, we'll do a bake sale, car washes, whatever. We've done a lot already and we'll continue to do what we need to do to fight for our girl.”

The family has a fundraising page on the site youcaring.com. The Web address is www.youcaring.com/addyjoysooter.

They have also been updating a Facebook page called Hope for Addy Joy with photos, including pictures from her fourth birthday on April 28.

People can go there for more details.