A six-hour ambulance ride later, Collin said, left him feeling exhausted, lost and unsure what the family was even up against.

“There were tests, blood work; it was pretty exhausting right at first,” he said.

Aiden was in for surgery to relieve the swelling on her brain, six weeks of radiation and a clinical trial treatment. She also was given a subcutaneous port that she nicknamed “Buddy.”

She responded well to the treatment, and kept most of her hair despite the radiation, something many of the other pediatric patients at St. Jude weren’t able to do.

The two biggest DIPG symptoms Aiden had exhibited, the vision impairment and the temper issues, improved with the treatment.

But when they got home, the Tauntons received a call from the doctor at St. Jude telling them, “not to bother to come back,” Collin said, because the other patients in the clinical trial just weren’t showing results, and the trial was being discontinued.

That’s when Collin started searching the Internet for anything, any answer. Because DIPG is relentless, time was of the essence.

“Any alternatives — essential oils, whatever — you name it, we were looking at it,” Collin said. “You have your back in the corner, looking for your only hope.”

Megan’s mother, Debbie Paul, had joined a number of Facebook groups for family members of children with DIPG, and through one of those groups — “Princess Kiara’s Dream” — she learned about a doctor in England, Dr. Steven Gill, who was pioneering DIPG treatments.

“He was doing an experimental treatment while still raising funding to take it to clinical trial,” Megan said. “Radiation is usually the go-to thing for DIPG, but it is only temporary — it will shrink it, but it won’t stop it to where it is no longer growing.”

DIPG is resistant to chemotherapy treatments because of where it is positioned in the brain — using traditional methods, the amount of chemo needed to affect the tumor is toxic to the rest of the body.

Gill’s method bypasses this by placing an anchor port near the treatment site — Teddy — and robotically placing microcatheters directly into the tumor along pathways mapped using 3D images.

The treatment is pumped exactly to the site it’s meant to reach, killing the tumor cells without poisoning the rest of the body.

Even with successful treatment, the tumor will always be there with a risk that it will come back — maybe one year, maybe 10 years, maybe never.

But that risk is so much better than doing nothing at all.

The Tauntons reached out, speaking by phone with the researchers to find out what they were doing and had their records sent from St. Jude to the clinic in Bristol.

After they were accepted into the pre-trial studies, the Tauntons learned Aiden would not be the first DIPG patient to receive treatment using Gill’s method, but she would be the first to receive the given medication, an existing product that has treated other diseases and has shown some success in lab animals.

Since the diagnosis in October, Megan had given birth to Ronnie Anne, who is now nearly 5 months old. Even though they could take their 2-year-old son Rustin with them, going to England for treatment meant leaving the baby with family. That was the second time Collin saw Megan cry.

In England were the initial days — the zoo, the aquarium — which also included yet another MRI to track progress. Though medical professionals are usually frank about DIPG, that day — April 1 — was the first time the Tauntons were given a timeline for the worst-case scenario — “two to three months if left untreated.”

“The tumor had really grown and changed in shape,” Collin said. “It almost looked like a tooth.”

Teddy was placed; the micro-catheters delicately positioned; treatment began.

“Because the catheters are so small, it takes hours to pump the medicine in,” Collin said. “But the longer they can pump the more medicine they can get in there.”

The first day Aiden started showing signs of left-side facial paralysis, the result of one of the four catheters being a fraction too close to a nerve. Treatment stopped after four hours.

The second day treatment lasted 12 hours, the third day between five and six hours after the catheters were repositioned.

Aiden received the treatments without complaint, perhaps in part because Megan has always made it a point to be honest with her about what is happening and why it is needed.

While the Tauntons haven’t told her the full seriousness of what DIPG could mean for her, they said they’ve never felt like she shouldn’t be told as much as possible.

“She has gotten to where she doesn’t shed a tear when they have to access a port,” Megan said. “She doesn’t question it. She knows we have to do it, and we do it.”

The only side effect she experienced was some weakness and trouble walking, the result of extra fluid being pumped into an area of her brain that is already squeezed.

“When I saw her having that trouble, I was ready to hang it up, but (the hospital staff) are assuring us that this is normal,” Collin said. “They would unhook her, she would get a night’s sleep and wake up normal.”

That ability to feel as normal as possible is one of the blessings of the treatment. The directed infusions mean that chemotherapy doesn’t get into the rest of the body, so once Aiden is rested, she doesn’t feel any different.

“She has the heart of a lion,” Collin said. “It can be aggravating sometimes, but it takes some of that fire, that heart, to get through some of the things she has. She’s a tough character — and she’s a lot tougher than Daddy.”

After three days of infusions and a couple days of rest, the Tauntons returned home to wait.

Life at home

Even with DIPG ever looming in the background, life at home is normal.

In fact, sometimes it’s so normal that Collin said he can hardly think about it at times.

“It’s hard to sit and dwell on it because she is doing so great,” he said. “Unless we have a doctor’s date or an MRI, it sort of goes into the background. As bad as the diagnosis is, there are a lot of parents who have to look at their kids being messed because of what the tumor has done, and we haven’t had that.

“The kids go outside, they play, they climb and jump and squabble until you go out there and break it up.”