Born: October 19, 2008
Diagnosed: June 30, 2015
Died: February 16, 2016
– Brave – Fighter – Creative – Fashionable – Silly –
Just six short months ago, the world turned upside down for the Huffmans. Avery, then six years old, was diagnosed with DIPG. Her parents, Brandon and Amanda, chose to tell their older two children, Alex, 12, and Cade, now 10, about the diagnosis, but not the prognosis.
“We were still reeling from the prognosis and we didn’t want to throw all that at them at once,” said Brandon. “We waited until after her radiation was done.”
Despite holding back that bit of information from their children, Alex – a 4.0 student – deduced what was going on.
“She’s the kind that knows how to go on a computer and Google DIPG,” said Brandon. “She’s already saying, ‘I’m going to medical school and I’m going to figure out how to treat children with cancer.’ So this is kind of driving and motivating her studies.”
The Huffmans also have four-year-old Addison.
“She has no concept of what’s going on other than her sister who was normally healthy — that she shared a room with, that she’d play with all day, every day — is in a wheelchair and is sick and doesn’t feel well,” said Brandon.
It’s a reality no child should ever face.
Then there’s Avery herself. Known as the stubborn, strong-willed one of the family, Avery’s willingness to hold her ground when she wanted something only grew stronger when she began her fight with DIPG.
“If she can’t go out at recess and play on the monkey bars, you better have her wheelchair out there right next to the monkey bars,” said Brandon. “She’s going to be sitting there with her hand on it. She’s going to show you, ‘Well, I can still get on the monkey bars somehow. I’m still going to have recess, I’m still going to have PE.'”
Avery possesses the same quality as many other children fighting this horrific disease: she has never complained. Despite being wheelchair-bound within five days of her diagnosis on June 30, 2015, no one can tell Avery she can’t do anything.
Whether it’s riding rides at Disney or going to school with her friends, Avery is going to do what she wants to do, no matter what.
“If she’s going to keep fighting every day, we have no choice but to keep fighting,” said Brandon. “We can’t sulk if she’s not sulking. It’s really pushed us and motivated us.”
A Turn for the Worse
Brandon and Amanda have known the awful reality of DIPG since Avery was diagnosed. To cope with that reality, they looked forward to small milestones as the new year approached.
Avery’s seventh birthday (October 19), their Make-A-Wish trip, visiting family in California, Thanksgiving, Christmas, New Year’s Eve and New Year’s Day – each represented a goal to focus on.
The reached each one.
Then as they were tucking Avery in after a magician-clad New Year’s Eve party with friends and family, she complained of a headache. Brandon and Amanda had to keep her out of school the following week because she was too weak to get out of bed.
“We had to up her dose of steroids, she skipped her Avastin treatment because she’s too weak to get out of bed,” said Brandon a week into the new year. “So we’re set for the MRI at the end of the month, but there’s almost that feeling like, ‘Do we even need an MRI?’ because we kind of know.”
A Sudden Recovery
Brandon, a national recruiting writer for Scout.com, and Amanda, a former marketing professional, have chronicled Avery’s journey along the way. Even their older children, Alex and Cade, have contributed to the family’s blog.
On January 12 – nearly two weeks following the New Year’s Eve headache – Brandon and Amanda penned this update:
Tuesday Morning Update – This morning we were given the results of Avery’s fifth MRI. Unfortunately, they were not favorable.
The tumor that started this all has grown. In addition, one of the nodules that was found in November on her scan then, has now grown substantially. It was tiny in November, but has now joined the initial tumor to do its damage on Avery.
So essentially, Avery now has two tumors she’s dealing with.
On top of that, she now has hydrocephalus, which is the fluid buildup that has caused her the extreme headaches.
Tomorrow morning, Avery will undergo a procedure to alleviate the buildup of fluid and pressure, with the hopes that it will minimize the symptoms that have built up over the past two weeks – the headaches and nausea.
Our hope is to be out of the hospital by Thursday and by Friday at the latest.
Avery doesn’t want to be here. We don’t want to be here. She wants to be home.
Once she’s home, our goal is for her to rest and be comfortable for as long as possible, which we’re hoping is a long, long time. There is no immediate timetable on anything yet (so please don’t ask), just taking this process one step at a time.
The idea of Avery undergoing a procedure like this is nerve wracking, but we want her to be comfortable and in as little pain as possible, so she’ll go through with it.
She’s asked all morning to see her “big sister” so this afternoon, Alex, and Cade, will likely come to the hospital to see her and spend some time with her.
In the meantime, she’s resting comfortably in the hospital, and has only complained minimally of any head pain and no nausea.
She has made it clear she wants to go home, and that is the goal, to get her home sooner rather than later.
Once we get her home, we’ll monitor her before we begin home care, which we will likely do for the next few months.
Please pray for peace, stamina, rest and comfort for Avery, Amanda and I and for Alex, Cade and Addison.
Please pray for wisdom for the doctors.
Please pray for comfort and a quick and effective procedure tomorrow, on the surgery side, but with the results we want to be accomplished.
Our hope continues to be, and will ALWAYS be, in the Lord. He is good.
Please, keep on praying.
-Brandon and Amanda
An Unexpected Recovery
After a rough few days following successful surgery, Brandon and Amanda were met with an unexpected surprise.
“Amanda and I were talking about something, and commenting about Addison doing something crazy, forgetting that Avery was listening,” wrote Brandon, “and then we heard her start laughing at what we were talking about, which of course, made us laugh more, which in turn had her laughing even more.”
The following day – six days after the surgery – he wrote, “Today was another ‘up’ along this road. That makes it two days in a row for Avery where she’s felt better, she’s laughed more, spoken clearly, felt well enough to eat solid food and spent time smiling and making goofy faces for pictures.”
These are two parents thankful for this unexpected, positive time with their daughter. Thankful for smiles, laughs, thumbs-up, and silly faces. All just six months after diagnosis, when their world turned upside-down.
A Family Fight
Despite having every reason to quit, Avery has not lost her silly, strong personality. She continues to make her parents and siblings smile while fighting this fight in which she is unfairly over-matched.
But she isn’t the only one fighting. Just as other DIPG families make it their mission to change things for those who will come after them, so will the Huffman family.
“I want to serve a purpose for lives to be changed because I never want another parent, another family, to hear the words that we heard,” said Brandon. “Those words … not that your child has cancer, (but that) nothing can be done. In my lifetime, I want parents to be able to hear, ‘But this is what we can do about it,’ and that there’s a chance.”
Avery’s big sister, Alex, also has a gift for writing. Wise beyond her years, she wrote the following after her sister’s surgery:
Here we are 6 months into Avery’s cancer treatment.
It has not gotten any easier.
But God is still with her.
He will be with her till the end of time.
I was reading my Bible the other day, and I found an amazing verse: Psalm 46:5 God is within her, she will not fall; God will help her at the break of day.
Cancer is not a joke.
I have heard people at my school joking around as if it’s funny.
When I told someone that it wasn’t funny, they said: “Oh they’re boys, it’s fine.”
But it isn’t fine.
No, it isn’t fine. None of this is fine. Not the ridicule, not the pain, not the fear, not the prognosis, not the unfair way in which a young life is being treated on this earth. None of it is fine.
But the Huffman family — like the Carr family — is vowing to make a difference.
“The day she was diagnosed my whole future changed,” wrote Alex. “I want to go to the University of Washington and go to medical school to become an M.D. (Medical Doctor) and an D.O. (Doctor of Oncology). I want to study cancer and find a cure.
“I figured out what I wanted to do with my life before I even started sixth grade. Avery was diagnosed and God made a good situation out of it.
“He is good.”