It’s one thing to understand that Diffuse Intrinsic Pontine Glioma (DIPG) exists, it’s another thing entirely to see what it leaves in its wake.
February 16, 2017 marks one year since Avery Hayden Huffman passed away after a seven-month battle with the disease. A painful, difficult year for her parents, Brandon and Amanda, and siblings Alex, Cade, and Addison.
Alex, 13, and Cade, 11, shared their thoughts on Facebook Live this week about their sister, Avery, and how difficult the last year and a half has been.
To hear Alex express guilt because she had to leave the room for Avery’s final moments and Cade say he struggled seeing his sister’s “dead body” is truly the horror of DIPG. Cade recalled his baby sister, Addison, looking for Avery and having to tell her over and over that she was in heaven.
The burden placed on parents and kids left behind is heavy and, with no viable treatment plan or cure, is inevitable with DIPG. It’s what the Huffmans are fighting so hard to change.
“People have to understand how severely underfunded DIPG research is, DIPG treatment is, how little coverage it gets,” said Brandon. “We hear about kids that have DIPG, but it’s called a ‘brain tumor.’ Obviously it is, but that’s how it’s identified and described to the general public.
“Brain tumors get treated all the time. They get worked on. We have to make it known that there’s this specific kind of tumor, how lethal it is, and what it does to the kids and to the families.
“We must spread that awareness so it’s not just looked at as, ‘Oh, they’ll bounce back. They’ll be okay.’ No. Historically, no one has bounced back. Nobody has been okay. People need to know just how lethal and vicious DIPG is.”
The Avery Huffman Defeat DIPG Foundation
Considered “rare” by the medical community, DIPG is diagnosed within 300-400 kids nationwide each year. The suburb where the Huffmans live, however, has seen five or six kids diagnosed within the past six years.
“Unfortunately, our community knows much more about DIPG than they ever cared to,” said Brandon. “I’ve had people that I coach with that live on the other side of town, their other kids were in school with a girl that passed away in 2010.
“The wife and mom of a dad that I coach with work with a family who lost their daughter four years ago to DIPG. Then, literally five miles from where we live, another family lost their daughter to this in 2011. There are two families up in Seattle. Then a boy diagnosed last December 2016 went to the same middle school that my oldest goes to.”
“Even though we’re a chapter, I still feel like we’re on our own island out here because we’re just in a different region than the other two chapters,” said Brandon.
“Up here, we’re able to really get that word out even more and people are responding to it as a result.”
The Huffmans have pushed on in the name of DIPG awareness and raising research dollars, but they live through daily sorrow without Avery. They talk about her every single day and — in many ways — are only able to get through tough times by remembering their spunky girl.
“That’s honestly what made Christmas manageable for us: the fact that, if Avery knew we weren’t going to celebrate Christmas, that we weren’t going to decorate the tree, that we weren’t going to watch Christmas movies, she would have gone crazy on us,” said Brandon.
He recalls a special story from Avery’s last Christmas when she was watching A Christmas Story.
“They go to the Chinese restaurant to get dinner after the dogs eat their turkey,” he said. “Well, she looks at me and says, ‘Dad? Can we go get Chinese food?’ I said, ‘It’s Christmas Day, Avery. There’s no way that any restaurants are open.’ She’s said, ‘Well, can we go to Panda Express?’ I said, ‘Again, there’s no way. It’s Christmas Day. There’s no way Panda Express is open.
“She looks at me. ‘Can you check?’”
Of course, he did. After a couple of rings, he started to tell her it was closed when someone picked up. They were open until six.
“She gets this huge grin on her face,” remembers Brandon. “We ended up driving to Panda Express to get Chinese food. Now it will be tradition because she said, ‘Oh, we should do this every Christmas.’
“Of course, in our hearts and in our minds, we knew that would be the only Christmas we would do that with her.”
Another way Avery’s family has remembered her is by nurturing her beloved pets. Their dog, Coco, had a special bond with Avery, and she had a rabbit, Hoppy Jumpy.
“We adopted a new kitty on her birthday, which is something she always wanted,” said Amanda. “What is worth mentioning is that Brandon never really loved animals. Since Avery’s passing, though, Coco has taken a very special liking to him and vice versa.
“Avery would get such joy out of that. Coco and her were buddies.”
Deriving Strength from Avery
Brandon and Amanda derive strength from Avery’s special place: her bedroom. They set up the Avery Huffman Defeat DIPG office in her room so they could be surrounded by memories and treasures of their girl.
“This gives us strength each day as we fight for a cure,” said Amanda, “and I think it’s a pretty special way that we involve her.”
Avery is the family’s constant motivation, helping them get through the toughest of days.
“We can still talk about her, and people are still affected by her,” said Brandon. “Everybody says that the first year is the toughest, but I don’t believe that for a second. I feel like the farther away from being with her we get, the harder it becomes.
“We’re a very busy family, and I think that keeps us from really being down in the dumps all the time. We have a lot of distractions. But you also have those times where there aren’t any distractions. You sit and realize how overwhelmed you are. ’Oh my gosh, now I don’t have anything to distract me — this is our life. This will be our life for the rest of our lives.’
“Those are the hard days to stomach.”
What You Can Do
When it comes to DIPG, there are so many things you can do to make a difference. Remember, every cure started somewhere!
- Vote for Coach Beilein in the Infiniti Coaches Charity Challenge to win $100,000 for DIPG research. All winnings are going directly to Michigan Medicine’s accelerated pediatric brain tumor initiative.
- Share this and other stories about DIPG to raise awareness around the need for research and funding. Dollars flow toward the loudest voices.
- Donate to The ChadTough Foundation, which is focused 100-percent toward DIPG and pediatric brain tumor research.
- Become a ChadTough Champion or a volunteer!
As always, thank you for being ChadTough!