Warriors for Princess Piper

$75,950 of $350,000 goal

Raised by 632 people in 15 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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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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Please read the most recent update from Carrina:

“I used to hate the wind. I would describe it as my least favorite weather element, totally lacking in virtue. It always seems to show up at inopportune times, like when you’re ready to play at a park, or happen to be wearing a skirt. But now I draw new associations. The wind has become Piper’s call, and the call of her steadfast warriors.”
“We are feeling a lot of things at 14 months post-diagnosis. Grateful, of course, but it’s a complicated place to be. The word tentative has never felt so appropriate. The slightest change in Piper can send our minds on a downward spiral. Is that a new symptom? Was she doing that yesterday? Does she seem more tired to you? The reality is DIPG is a progressive disease. At some point, the answer to all our fear-based questions will be yes. We are relieved that Piper continues to fight, and still does so with joy, and with a wonderful quality of life. But while I’m thankful for the past 14 months, it will never be enough. I want her to turn 5, then 6, then 96. I want her forever. That is the miracle we pray for every day.
Like our state of mind, the wind is multifaceted too. It can be as innocuous as a breeze, or suddenly transform once-invisible air into something powerful, noticeable. It can push great ships across even greater distances. It can move deserts, change climate patterns, and wear down mountains. Alone we may not have enough to make the whole world stop and address DIPG, but together our voices are commanding.
Last month we had the great honor of attending the International Symposium for Pediatric Neuro Oncology in Denver. So many intelligent and accomplished doctors, nurses, and researchers in one spot. It was inspiring to hear some of the latest discussion on DIPG. But what was generally presented as a timeline for a treatment breakthrough is 10 years. Statistically that means as many as 3,000 children will die from DIPG in the USA between now and when that illusive cure arrives. Think of how many voices will beg for hope between now and 2028?
Many have asked what comes next with Piper’s treatment. The answer is “not enough.” It has been 95 days since she completed re-radiation, and 53 days since her last MRI. That means it has been 95+ days since we started talking to our medical team about ONC201, a new drug being developed to target the highly-aggressive K27M gene mutation that Piper and many DIPG patients carry. Likewise, it has been 53 days since we started the process to receive this drug on a compassionate-use basis. Our first attempt was denied with little explanation. Our team then recommended we write a personal letter of appeal. Thanks to Nelson and his law degree, we sent a 9-page letter considering and rejecting every possible reason for refusing to allow her to take the drug. This time it was enough to get approval, however the process to actually obtain the drug can take as many as 4 additional weeks. If all goes well, Piper will start taking the pill by the end of August.”
“ONC201 represents a glimmer of hope, but again, you can’t help but put this all into context. Should it take two months and an advanced degree to get a terminal child access to a drug that could help her? While 14 months of living with DIPG is better than 9 months (or less), it’s still a life interrupted and ultimately cut short – to the tune of ~78 years. Can you imagine if a food or manufactured product was causing this much hostile and unchecked harm to children? Do you think it would take decades to address and solve the problem? Why should brain cancer be viewed differently?
Think of Piper when the wind is high and welcome its disruption. We need every voice. Every word builds momentum, and eventually it will be enough to change the pattern.”
Words for the Wind, Part 2
by Theodore Roethke
The sun declares the earth;
The stones leap in the stream;
On a wide plain, beyond
The far stretch of a dream,
A field breaks like sea;
The wind’s white with her name,
And I walk with the wind.
The dove’s my will today.
She sways, half in the sun:
Rose, easy on a stem,
One with the sighing vine,
One to be merry with,
And pleased to meet the moon.
She likes wherever I am.
Passion’s enough to give
Shape to a random joy:
I cry delight: I know
The root, the core of a cry.
Swan-heart, arbutus-calm,
She moves when time is shy:
Love has a thing to do.
A fair thing grows more fair;
The green, the springing green
Makes an intenser day
Under the rising moon;
I smile, no mineral man;
I bear, but not alone,
The burden of this joy.
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Warriors for Princess Piper, if you haven’t already, please read the latest blog entry regarding Piper’s heroic journey. http://warriorsforprincesspiper.com/blog/
This girl, every day, throws her glitter into the wind and onto the world. The thought of her sticks with you. She teaches us to be braver, stronger, more compassionate, and to look at things from a new, less selfish, perspective. She shows us how to be hopeful even when we have trouble feeling out the path in front of us. She teaches those who have faith to hold onto it even tighter.
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$75,950 of $350,000 goal

Raised by 632 people in 15 months
Created June 19, 2017
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