September is the month when parents, families, patients, survivors, and advocates ask the world to “Go Gold” in support of Childhood Cancer Awareness.  It’s just 30 days of the 365 in a year.  Truth is, we do this every day, but September provides the platform for concentrated effort.

Like many others, this September I shared statistic-filled posts, informative videos, personal accounts, and made a plight to fundraise.  I believe we made an impact, and I’m proud to say Piper’s Warriors came through to raise $4,560 for The Cure Starts Now.  Thank you! It cannot be said enough; these dollars are vital. Independent efforts like this are the only thing we have to combat the horrifying funding gap.  These dollars are the only reason research moves forward.

Love and support poured in from across our community.  A thousand dollars from Piper’s bracelet initiative, a thousand dollars from the Cherry Creek Bruins softball fans, a thousand dollars from “Piper Day” at Victory Love + Cookies. Piper even had a 10K swim across Horsetooth Reservoir dedicated to her in the name of DIPG research.  There were countless individual donations, exceedingly generous donations, repeat donations.  The Castle Rock Police and Fire Departments surprised Pip with a parade of vehicles, balloons, and gifts to show their support of her.  I want to call out a few individuals here, but I won’t.  I’ll simply say that many kind people made this month shine.

The spotlight on childhood cancer could not have come sooner. Every day of September carried increasing reminders of DIPG in our lives. Piper’s cheerful disposition was disrupted again and again by frustrating limitations.  She’s justifiably upset.  She’s understandably weary.  She asks questions for which there are no answers. The last 60 days have taken a heavy toll.

While Piper remains on the ONC201 study, she’s beginning to struggle with the capsules.  If her swallowing declines further it will prevent her from participating.  Before this point, Piper’s still-present abilities provided the counterweight we needed to withstand. But the arrival of Pip’s worries que our own. The deepest fears we set aside 15 months ago in order to live are knocking on the door, reminding us they haven’t gone.

Much like the changing seasons, transformation is at hand.  It’s a delicate state.  Impermanent.  But that’s what makes it sacred. Piper is something gold, someone to behold.  This experience has shown her truth.  She is innocent, wondrous, deserving. We want her more than we want life for ourselves.  I cannot conceive of a future without her, and yet I know we cannot ask more of her. Not even nature can hold on to its golden leaves.  No matter how beautiful they are.

I hope this update won’t be read as a loss of hope or faith, but an admission of reality. Hope is our currency and always will be. But denying this reality does not make it untrue. Only righting the problem can do that.  That’s why we must share truth, as we did all September long.  We have to acknowledge it, however difficult, so we won’t lose sight of the need.

Nothing Gold Can Stay – Robert Frost

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.