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Warriors for Princess Piper

$75,010 of $350,000 goal

Raised by 613 people in 14 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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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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Below is the latest blog from Carrina. Yesterday marked 5 years from when we lost Alex...and through our new babies born that year...together our family found light and hope. Piper has been that salvation for my sister—and for all of us—a bright beacon of hope and beauty in life...

“In April 2013, I learned I was pregnant with Piper. I remember being overcome with joy. At that point, Neddy and I had been married two years and together for 11. We always knew we wanted to be parents, but we also wanted to be ready. We decided to wait until he graduated law school and we had a house to call home. We were finally prepared, and the world was perfection.
Weeks later, on May 21, I got a frantic call from my sister as I headed to work. She told me an ambulance had been called for Alex, our younger brother. I drove to her house where we sat panicked and waiting for more information. Finally, her phone rang. It was my mom. While they spoke, I searched her face for answers…for a sign of hope. But after a couple minutes she looked up and said, “he’s gone.” Two short words to describe so much. Alex had bipolar disorder. He tried to take his life a few years before. We knew it was a battle for him, but he had come so far. My first thought was that he overdosed, accidentally, on the one of the many medications he took daily. But the reality is that life is hard. Life is hard, and people hurt. People hurt even when they try not to. Sometimes we don’t want to see, even when we think we are looking. At 26, my brilliant, compassionate, multitalented brother shot himself in his bedroom. I will always remember on that particular morning, the sun was shining gloriously. Birds chirped, flowers bloomed – a perfect spring day – except it was anything but. After the news, the sun became a hurtful sight. Like someone smiling at you while you’re being kicked.
Even as we laid my brother to rest, no one, other than Neddy, knew I was pregnant. It felt like a secret I wanted to protect from the unreality around me. Through the shock and sorrow, Piper became my salvation. She was the promise of better tomorrows. When we finally did share our news, Piper became everyone’s healing. She was born three days early, on December 18, 2013. From the moment she took her first breath, she was a reverie. So fragile and strong at the same time. I would stare at her endlessly, not believing she was real.
As the first grandchild in Neddy’s family, and the first granddaughter on my side – Piper had a charmed babyhood. She was constantly held, kissed, sang to, rocked. She had more clothes than any baby in the history of babies, I was certain. As she grew, so did our amazement. She was curious, contemplative, confident. She made every new stage look effortless. She was happy and thriving.
Fast forward to the present. We are now 11 months into a terminal diagnosis. Piper has already surpassed the average life expectancy for DIPG by two months. But her latest MRI tells us her tumor is progressing. Which generally means time is short, and the list of options shorter.
If you have met Pip, you know her imagination is the crown jewel of her many gifts. More often than not, when she plays everyone is given a role, and then scripted to her exact specifications. She takes great delight in directing silly mishaps. For example, we could be playing restaurant, hair salon, vet, or school, and she will say “pretend I’m gone. Ring the doorbell but pretend I’m not there.” Following her lead, I’ll knock, ring the bell, pretend to be disappointed and walk away, then suddenly she will appear from around a corner with a giggly grin and say, “Oh sorry I was just in New York” or “Sorry I had to take my daughter to school.” Then the game goes on… different every time, yet always full of Piper’s signature humor.
But I get stuck on those words: Pretend I’m gone. Every doctor, and every case we’ve followed the past 11 months, tells me that soon I won’t be pretending. Five years after I lost my brother, I’m now losing my heart. This cannot be. It should not be. But it is. And the more beautiful the spring days become, the more I worry. Only instead of being blindsided like I was with Alex’s suicide, or Piper’s diagnosis, we are acutely alert to our tragedy. We stare it in the face. All the facts and hard truths are laid out in front of us like a crumbling bridge. Every day we walk forward knowing that any minute the ground beneath could vanish.
I want nothing more than to keep pretending with Pip forever. She is still as fragile and strong as ever. But now what I think about with disbelief is how we got here, and that DIPG is real.”
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In a blink of an eye, everything changed. This morning Pip goes in for re-radiation. 10 days...10 days everyone is hoping will give all of us more time with our beautiful warrior...she is brave, she is strong, and if anyone can defy the odds and set a new bar, it’s her.
Nelson’s most recent words:
“Piper lies in the bed next to me, asleep. The sun has slipped through the blinds, and I can see her face next to mine. Her hair is tucked neatly under her cheek. Her long eyelashes lay motionless like so many blades of cut grass. Her lips are content, and soft, and everything about her is innocent. I concentrate, trying to absorb the moment so I can call on it when I need to remember her.
She doesn’t look like she has cancer. She doesn’t look any different than she did six weeks ago, when the doctors said her tumor was stable. What she looks like is beauty. Like she could wake up at any moment and I would know she never had cancer. Like it was just a bad dream, one where I wake up and hug her a little tighter and then quietly think about the close-call that didn’t happen. About the wisdom of learning how much I need her without having to feel the pain of losing her.
She stirs and grabs my hand, squeezing it for a moment before letting me go. I cry because I’m happy she’s still here, and afraid of when she isn’t. I cry because it’s not a dream.”

Warriors: please stay hopeful, please keep praying...there are still miracles that the limited scope of medicine and science cannot explain. Please continue to shine your light and love over this little girl so that the world can continue to see her, pray for her, and keep her fight going.
(Roese Photography) “True Loves Kiss”
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$75,010 of $350,000 goal

Raised by 613 people in 14 months
Created June 19, 2017
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