AJ Peterson DIPG
AJ Peterson DIPG

(L-R) AJ, Alana, Amelia, and Aaden. Learn more about AJ and his family on their Facebook page, AJ Soars.

When Adrian and Angela Peterson got married, they were ready to buy a house and start a family. Coming from a big family herself, Angela says she told Adrian she was ready to start “having kids, kids, and more kids.”

Their first was AJ. Then 16 months later came Aaden.

“They were the best of friends,” said Angela. “Because the kids are still at a younger age, we hadn’t been involved in many sports just yet. So they would go to school, make friends there, come home and play with each other, and that was our daily schedule.

“So they didn’t go to friends’ houses. They played with each other. That’s all they had was each other. Of course their sisters (Amelia and Alana), but they bonded well with each other because they were so close in age.”

The Diagnosis

AJ was diagnosed with Diffuse Intrinsic Pontine Glioma in June of 2014 when he was just seven years old. He didn’t understand what was going on, but his parents certainly did.

AJ Peterson DIPG

Angela and AJ. You can learn more about AJ and his family at their Facebook page, AJ Soars.

“As adults, that is very, very traumatic,” recalls Angela.

The doctors gave them the dire prognosis and explained the protocol of radiation. The Petersons started treatment right away and AJ quickly regained the motor skills he had started to lose with the advancement of the tumor.

“We thought that maybe we’d be the lucky ones,” said Angela. “The lucky one percent that would outlive the statistics.”

Adrian and Angela each came from Christian families with deep faith. They relied upon that faith to get them through this situation and prayed that they would be granted a miracle and AJ would survive DIPG.

“We went to faith in God and our church,” said Angela. “Although the doctors gave us these statistics and these statistics are real, we still had faith that we would beat that statistic and we’d be that lucky one percent.

“I would say that we were 99-percent sure that AJ would be here today.”

DIPG Progression

AJ Peterson DIPG

AJ Peterson playing at school. Learn more about AJ and his family at their Facebook page, AJ Soars.

The Petersons took AJ back to school in August after meeting with teachers and administrators about his health.

“AJ was with us that day and he was just excited about going to school, but we had to sit and let them know what the doctors had said the possibilities were,” said Angela.

“We sat there and we talked and we were confident because we still had this mind-blowing faith that he was going to be okay. He was going to go to school, everything was going to be fine.”

AJ went to school for nearly two months before the symptoms started to return. On Thanksgiving Day, he complained of a headache and had to lay down and rest. The next day he was outside playing and stop because he had another headache.

“We baked cookies, gave them to the neighborhood kids and he just served everyone from our front door,” said Angela. “In my head I’m thinking, ‘He’s just having a bad day,'”

Unfortunately, the headaches and the bad days continued.

“Every day he started complaining of a headache and I was getting afraid,” said Angela. “We started seeing the doctors every two weeks, but if anything happened we would call them and let them know.

AJ Peterson DIPG

You can learn more about AJ and his family at their Facebook page, AJ Soars.

“To be honest, every two weeks he lost something. From November until February when he passed away. It started with the headaches and then we saw him limping.”

AJ saw a walker at CVS and asked for one to help him walk. Not even a week later, they had to call for a wheelchair and then a handicap sticker.

“Anything he wanted, anything that we thought would make it better, we got it,” said Angela.

Going Home

In January, the family took a Make-A-Wish trip to Disney, but things had progressed with AJ to the point that they barely went outdoors. AJ couldn’t lift his head because of the pain and had lost the ability to talk.

Being from Florida, the Petersons chose to stay home following the trip and family started to visit AJ.

AJ Peterson DIPG

AJ and sister, Amelia.

“They thought it was the last time they may see him so they were saying their goodbyes,” recalled Angela through tears.

“I think that’s what they were doing, but I never had that thought in that moment. I thought everyone was just coming to hang out, but after the fact I realized, ‘Oh my gosh, they were coming because they weren’t even sure if he was going to make it … they thought he was going to pass away at Disney.'”

Things were getting so bad at Disney that hospice had to visit, but Angela still hadn’t reached the point where she was thinking the worst.

“I always tell my husband I don’t know if I was in denial or what,” she said. “I don’t know what it was, but I was still taking it day by day like, we’re going to get through this.”

The Strongest Boy

AJ was surrounded by his family when he took his last breath just a few weeks following the Disney trip.

“I looked over at my husband and my husband had this huge smile and he was rubbing AJ’s chest and saying, ‘Oh my gosh, good job, I’m so proud of you,'” says Angela. “He just kept saying, ‘I’m so proud of you, you’re the strongest boy ever – I’m so proud of you.’

AJ Peterson DIPG

AJ after radiation.

“I think in that moment we were just happy that he was no longer in pain.”

Despite the finality of that moment, though, it didn’t hit Angela that her oldest child was actually gone.

“I thought he was going to breath again,” she cried, “I thought he was going to breathe again, but he didn’t.

“Even when the coroner came and said the time and everything, it still didn’t hit me. It hit me when the mortician came and my mom was telling me, ‘You don’t want to see this.’ That’s when it hit me. That’s when it hit me. When she carried him out.”

The mortician wrapped AJ in blankets and carried him like a baby out to the funeral car. She didn’t cover his face. Angela’s family wanted her to stay in the house, but she just couldn’t.

“I had to go out and see that he was okay,” she said through tears, “I had to see that she had him buckled in and I had to see that he was comfortable … although I should have known he was fine. I had to see it.”

After checking on AJ, she went back into the house only to rush right back out.

“I asked her if I could see him one more time,” she said. “I don’t know her usual protocol or how she goes about things, but she let me get back in that big, ugly funeral car and she let me hold him for as long as I wanted.”

A Purpose and A Plan

AJ Peterson DIPG

Learn more about AJ and his family at their Facebook page, AJ Soars.

Adrian and Angela had prepared their children as best as they could for the possibility of AJ’s death, but it was impossible for them to wrap their minds around it.

“(Aaden) screamed the entire time after they closed the casket,” said Angela. “He really didn’t get it. He just kept saying, ‘Why does he have to go in the box?'”

“These sweet, innocent kids,” she continued. “Why? They haven’t hurt anyone. They’re so sweet and innocent and I had to figure out a way to wrap my mind around it all to move forward. Although I still don’t fully understand why, what I’ve told myself over and over is that there is a purpose. There is a purpose, there is a plan.”

So many DIPG families have expressed that same conviction – that there has to be a purpose to come out of these tragic losses. One poem that resonates with many – the Carr family included it on the back of Chad’s Celebration of Life program – is The Brave Little Soul by John Alessi. The poem talks about suffering unlocking the love in the hearts of others.

For the Peterson family, that reality definitely came true.

“I was floored by the amount of love and support,” said Angela. “I can remember the overwhelming amounts of emails, messages, calls, flowers, food, boxes of things for the kids, care packages, tons of letters and cards for us all … so many people came out to just be there. I remember very clearly typing, ‘He is in heaven’ and many responding, ‘So sorry for your loss.’

“While I know it came from a good place, I typed up a quick status saying something along the lines of ‘AJ’s in HEAVEN … that’s NOT a loss … WE WIN! #ajsoars'”

Learn more about AJ by visiting his Facebook page, AJ Soars.