Warriors for Princess Piper

$77,770 of $350,000 goal

Raised by 660 people in 17 months
Created June 19, 2017
My sister said it best, "Devastation doesn't even begin to describe the news our family received..." A week ago, June 12, 2017, my sister, Carrina and Brother-In-Law, Nelson took my 3-year-old niece, Piper, to children's hospital for what was originally thought to be an ENT issue. An MRI revealed the symptoms were actually caused by a mass in her brain stem. She was diagnosed with DIPG, Diffuse Intrinsic Pontine Glioma, a rare and aggressive brain tumor that is inoperable and occurs only in children.  Following her confirmed diagnosis through biopsy, she will next undergo six weeks of daily radiation, which is expected to slow the growth to some degree. They say patients with DIPG live an average of 9 months after treatment, but it is a terminal brain cancer that effects just 200 children a year. Thank you all for the love and strength and support you've sent Carrina, Nelson and our family so far...keep it coming! They need every prayer they can get as this is absolutely going to require nothing short of a miracle for this beautiful little girl. ❤️ We are raising money not only to help with medical expenses but also to make sure her parents are able to fulfill Piper's hopes and dreams no matter how big or small without financial worry. Every single day with Piper matters, so we're helping however we can.
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We said our goodbyes to this sweet tiny angel last night. Grateful for the time we had with her, but she took our hearts with her. She was brave, and strong, and powerful...and she took her last breath knowing she would be greeted by God and he would walk her Home where other loved ones waited for her. Her glitter remains with us, all of us, and we will hold tightly to it until the day we can see her again in Heaven. Carrina, Nelson, she was strong and courageous for you and because of you. She couldn’t have asked for better parents to walk with her through this.

Words from her daddy this morning:

“The last thing she asked for was chocolate cake. The last thing she did was nod when we told her we loved her. She was was brave. She was strong. And she was not afraid.

It is with broken hearts that we rise this morning to let everyone know that last night, at 7:49 p.m., Piper took her last courageous breath. She was at home, in our arms, surrounded by family.

We had little warning that the day would be her last. She woke up early, as she often did, wanting to watch a cartoon and eat cereal. She was a little more sleepy than usual, but she was just as smiley and giggly as every other day. At noon we put her in the car to go to Children's Hospital for routine blood work, and as always, she ate more snacks and gave more giggles on the way. When we arrived, I picked her up and she fell asleep on my shoulder. I could feel her heart beating a little faster as I carried her to the seventh floor. When the nurse arrived to take PIper's vital signs, we had trouble rousing her and her breathing quickened.

In less than five minutes from when we left our car, Piper was on oxygen and a team of doctors and nurses were caring for her. They gave her morphine and told us it was time to start her on Dilaudid and Versed to make her more comfortable.

Piper wanted to be at home for her final moments, so we drove back to Castle Rock. As always, she gave us some more smiles, and she ate some more snacks on the way. It was as if she knew she needed to be home and had been waiting for us to get there. As soon as we carried her inside and held her on the couch in our arms, her pupils narrowed and her heart started pounding. Her breathing became fast, and shallow, and she was struggling to breathe before the hospice nurse arrived and administered IV Dilaudid. She smiled at us one last time before beginning her journey.

She was not in pain as her breathing became sporadic. We told her we would love her forever, and that she was the bravest person we knew, and that we were proud of her, and that she made us happy every day, and that we thought she was perfect . And she nodded in agreement, then squeezed our hands to let us know that she knew all of these things . . . . And when it was time to go, she knew it was the right time. And when she went, we thanked her for showing us what true love is.

She woke before dawn and passed when the moon rose to take its place in the sky. She squeezed every drop of sunlight from her last day on Earth.

Mama and Daddy love you little dove. Lead the way sweet girl. Then come find us.”

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We hold our breath in an effort to slow down time, and like delicate sand in the palms of our hands, we gently cradle the moments as long as we can.

Here’s the latest blog update from Piper’s mama...

“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 to 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 loose 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.
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An update from Carrina about the unimaginable journey:

As August began, so did subtle changes in Piper’s symptoms. Walking became more difficult, and her right leg struggled to keep pace with her left. Although wobbly, she could still get around, which meant we still had to remind her to slow down. But each passing day brought more decline in balance. At this point, hand-holding is a necessity even short distances, and she is unable to stand or walk unassisted. No four-year-old takes losing their independence lightly, so after several weeks we found a reverse walker in her signature pink to bridge the gap.
Alongside Pip’s mobility concerns came changes to her speech. Words are becoming more labored, annunciation blurry. The mouth secretions we noticed in the days before her diagnosis have returned.
The changes we saw creeping in over the preceding weeks were confirmed in her recent MRI. Piper’s tumor is growing, and it is affecting her cerebellum.
The benefits gained from re-radiation lasted about three months – nearly the timeline it took to obtain ONC201. Fortunately, Piper was still permitted to begin the drug. ONC201 comes in the form of two white capsules that require a two hour fast before and after dosing. Piper started her first three-week cycle on Aug. 20. After nearly an hour of coaxing, she reluctantly swallowed the pills. The second week went similarly. This week, however, Piper was unable to keep the medicine down. Protocol does not allow for re-dosing, so we await the start of her second cycle, and hope it’s more successful. While we don’t know what benefit it will have at this stage, ONC201 represents something to hang hope on.
As our team put it: mobility and speech may be declining, but these are not vital functions. It is impossible to predict which of Piper’s abilities will be under attack next, or at what rate. Every tumor grows differently. We pray her breathing, heartrate, and swallowing hold steady and allow her to keep fighting.
Even so, continued fight comes at a cost. The extended use of Avastin has caused Piper’s blood pressure to rise. Her labs also indicate it is beginning to put strain on her kidneys. We have started her on blood pressure medicine and will continue to monitor these changes.
Like the choice to re-radiate, the benefits of using these drugs outweigh the risks. Let that sink in for a minute, or ten. We are willing to compromise aspects of her future health in the name of the greater good… an outcome where we can stabilize the cancer and extend her life. Conversations about long-term damage, or the struggles of survivorship, are heartbreakingly absent from our appointments.
Lately, right before Pip drifts off to sleep in our bed, she’ll whisper, “mama, hold my hand.” I’ll stop what I’m doing and just grab hold. I need her hand as much as she needs mine. My touch reassures her, her touch refocuses me. When we hold tight we are stronger, even on this unsteady ground.
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September is childhood cancer awareness month. Please share Piper’s story and help us raise funding for more research. 4% is not enough for these brave children...they deserve our full attention!
Make some noise! Fight DIPG!

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$77,770 of $350,000 goal

Raised by 660 people in 17 months
Created June 19, 2017
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