ACTION.
“You may never know what results come from your action.
But if you do nothing, there will be no result.”
-Gandhi
This photo is from my first visit with Piper and family in July 2017. This is Piper, the Princess. We are the Warriors, not only for her, but for every child and family impacted by DIPG.
I want to say a big thank you to everyone who has followed along with these posts for the last 29 days, and anyone in the future who sees a post and searches for more information. Thank you to everyone who has messaged me or brought up Piper and DIPG in conversation this month. Many thanks to all those who have purchased a bracelet or made a donation as a result of awareness related to these posts. Your help will move research closer to a cure. Thank you to Mary Scharrenberg at www.quietstrength.org for connecting photographers with families who have gone through what your family has, and for connecting me with the Waneka family. Thank you to Logan for organizing the color run yesterday for your birthday, and spreading the awareness and raising $3500+ with the addition of another bake sale today. You are making a difference, Logan. Thank you to Children’s Hospital for permitting me to document the journey of Piper’s family while on the campus. Thank you to The Cure Starts Now and Defeat DIPG for all the information on your websites and allowing me to use it to help readers understand more about this brain tumor and the impact it has on so many children and their family and friends. Thank you to Kristi King for putting together these incredible bracelets for Warriors for Princess Piper, packaging them so beautifully, and sending them out. You have such a huge heart to be creating these visual reminders of Piper and the Warriors connected to her, while simultaneously helping raise funds for her and DIPG research. A big thank you to my family for making this a part of your lives as well. Most of all, thank you to Piper, Harlow, Carrina and Nelson for trusting me with telling your story. You all are forever a part of my life and have changed me forever. Princess Piper, you have inspired action in so many people. You are an exceptional human being with an amazing sense of humor, an awesome imagination, and such incredible strength and resilience. It is an honor to be one of your many Warriors.
CHOOSE TO MATTER.⠀⠀⠀⠀⠀⠀
When Piper's father met Logan's father, he said that they are not going to count the days, but instead, make the days count. This morning, Logan had a Color Run for her 12th birthday. Instead of a birthday party, she decided to #choosetomatter and wanted to raise money for The Cure Starts Now in order to fund research for DIPG. Instead of receiving gifts, Logan would only accept donations. Piper and family were the guests of honor to Logan’s Run. Well over 100 people now know about DIPG, donated money, and will share this information to keep spreading awareness and funding research. This celebration and awareness has had a ripple affect. One bake sale by Logan and friends has raised $600, another bake sale is scheduled for tomorrow, plus, what was raised earlier today. All these efforts have raised over $3200! Many of Logan's friends are now talking about giving up their birthday parties in order to Choose to Matter. Piper has inspired warriors to act, and so has Logan. They are both extraordinary girls. Happy Birthday Logan, you made today count for a lot.
Post for Day 28 to raise awareness for DIPG.
TEMPORARY BENEFITS.⠀⠀⠀⠀⠀
"Chemotherapy: In the past 30 years, DIPG patients have participated in more than 250 clinical trials...None of these studies have shown any benefit in either the likelihood of survival or the median length of survival.
Radiation: It is part of the standard course of treatment for DIPG patients...For roughly 70% of DIPG patients, radiation causes the tumor to shrink, which provides relief from many of the symptoms associated with DIPG. The benefits...are only temporary. Even for those patients whose tumors shrink during radiation, the treatment does not increase their chances of survival, and the tumor begins to grow again within months...Radiation therapy typically extends a patient’s life by about 3 months." -from www.defeatdipg.org
"Today we met with the radiology team at University, and discussed all conceivable trial and compassionate use options...As we keep saying, there are not many options for DIPG, and everything on the table is in the earliest of stages. Meanwhile, there are a few things we do know. Piper responded well to radiation and Avastin, and it bought her an amazing quality of life. So that’s what we have decided to do. We feel it is the best choice given the awful hand we have been given. It is something we can start immediately, and won’t impede our most important mission in this life: making Piper happy. She has worked too hard for anything less."
-April 17, 2018 Update from Piper's parents.
Post for Day 27 to raise awareness for DIPG.
STRUGGLE.⠀
"Unlike many brain tumors, a DIPG tumor cannot be removed through surgery. Attempting surgical removal of a brain stem tumor would likely cause severe neurological damage and could even be fatal.
Surgery is not an option for two reasons. First, because the pons is located in the center of the brain, a surgeon could not get to the tumor without damaging the surrounding portions of the brain. Second, even if the tumor could be accessed, total removal would be impossible. A DIPG tumor is not a solid, well-defined mass like some tumors. Instead, the tumor cells spread out between the healthy brain cells. Because the tumor cells could not be entirely removed without also removing the healthy cells, even if surgery were performed, the remaining cells would continue to divide and the tumor would soon return."
-www.defeatdipg.org
Photo take March 2018, as Piper was struggling to recover from sedation after her MRI.
Post for Day 26 to raise awareness for DIPG.
MIND BOGGLING.⠀⠀⠀⠀
"No one knows what causes a child to develop a DIPG tumor. Some cancers are caused by particular genes that a person inherited from his parents, but there is no evidence that links DIPG to any specific inherited genes. Other cancers are caused by environmental factors (such as smoking or exposure to chemicals or radiation), but there is no evidence that links DIPG to any environmental factor.
Recent research has suggested that DIPG tumor formation may be linked to brain development... The theory that DIPG is linked to brain development is also supported by the fact that DIPG most often occurs during middle childhood (ages 5-10), a period in which the brain develops significantly."
-www.defeatdipg.org
Photo take February 2018. Piper wanted to go with her dad to pick up dinner, and they made yet another fun adventure, full of laughter and joy, out of this ordinary task.
Post for Day 25 to raise awareness for DIPG.
NOT STABLE.⠀⠀⠀
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"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..."
-www.warriorsforprincesspiper.com/blog Today's Blog Post by Piper's Dad
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Photo taken at Children's Hospital 6 weeks ago, the last time they found out the tumor was stable, before it wasn’t any more.
Post for Day 21 to raise awareness for DIPG.
PRESSURE.⠀⠀
*As the aggressive DIPG tumor begins to grow, it puts pressure on the nerves that control the essential bodily functions regulated by the pons. Children with DIPG commonly experience double vision, reduced eye movement, facial weakness or asymmetry, and arm and leg weakness. They also have problems with walking, coordination, speech, chewing, and swallowing. As the tumor progresses, it also interferes with breathing and heartbeat, which ultimately results in the child’s death. (www.defeatdipg.org)
Photo taken at Children's Hospital in February 2018 at the end of another long morning for a four-year-old and her family. These DIPG/cancer facts, along with quotes from Piper's parents' blog are not meant to turn you away, but rather to help you brace for the fight that these kids need you for. By knowing these horrific facts, we know better what we are fighting for and how much strength is needed.
Post for Day 23 to raise awareness for DIPG.
Post for Day 21 to raise awareness for DIPG.
*1 in 285 children was diagnosed with cancer in 2014. (Coalition Against Childhood Cancer)
*For some cancers, the medical advances have been extraordinary. For example, the survival rate for children with acute lymphocytic leukemia has increased from less than 10 percent in the 1960s to nearly 90 percent today. (www.defeatdipg.org)
*A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago. There is still no effective treatment and no chance of survival. (www.defeatdipg.org)
#warriorsforprincesspiper can help change this last fact.
Photo taken in February 2018. Mom and Piper were giggling and goofing between a late lunch and having a sweet. This family will carve out the joy whenever and wherever they can. It is amazing to be in their presence and be able to experience what they have and what they give. While sitting here, Piper's mom was talking about how the family was getting anxious to go on another adventure and get away from their day to day. They all needed to be home for the previous weeks so that Piper could recover, but they were ready to travel for a change of scenery and just focus on family and fun, just the four of them.
Post for Day 21 to raise awareness for DIPG.
BUILD SOMETHING STRONGER.⠀
"When faced with something like DIPG, you have no choice but to brace yourself and fight. You hold on to each other through the gusts. You remain vigilant. But it’s not enough to be strong. You have to believe too. You have to believe that good will prevail somehow, and that breakthroughs are on the horizon.
Fairy tales like the three little pigs and the big bad wolf are used to convey lessons in an easy-to-digest format. The fact that kids are dying from brain cancer every day, and will continue to die, is not a palatable topic to most people. But as we prepare to close out 2017, a year that saw little more advancements to DIPG than the last forty, we have to find a way to face this hard truth.
My hope is that Piper’s smiling, innocent, brave face can convey an important lesson the same way a cautionary tale can. Right now, pediatric cancer research and treatments are nothing more than a house made of straw. We already know that outcome, so let’s do the right thing and grab some damn bricks already. May this great need tug at hearts until we’ve collectively built something stronger for our children, and fast."
-from www.warriorsforprincesspiper.com/blog November 2017 Blog Post
Photo taken in February 2018. Dad was holding on to Piper and her little sister so that mom could not haul them off to pretend jail.
Post for Day 19 to raise awareness for DIPG.
PLAYING AND BATTLING.⠀
*Brain cancer is the most common cancer causing death in children and adolescents aged 1–19 years.
-Data from the National Vital Statistics System Data Brief No. 257, September 2016
This photograph was taken at our first session together back in July 2017. Piper and her mom had a quiet moment together in between this feisty little girl's busy schedule of picking flowers, laughing at funny noises, pretending to cook a meal, drawing or helping her little sister. All those normal things a three year old girl does, even when she's battling a brain tumor.
Post for Day 18 to raise awareness for DIPG.
"People say Neddy and I are to credit for her resilience through this. But we know her strength is all her own, and was there long before her cancer. If we are to credit for helping her live, then we credit our phenomenal family, friends, and community for creating support so strong it feels like a tangible object. Something we can rest our tired heads on, or hide our faces and cry in. We have been carried forward through so many selfless acts of kindness. We have never known so much humanity, and we’ve learned that love often comes from where we least expected it to.
Strength-giving realizations like these, and fear-inducing questions like what comes next, will continue to occupy our minds regardless of these MRI results. But I have to believe we are not ready to talk about the end yet. Piper, like every other kid (with or without cancer) is her own person, with unique cells and an individual spirit. She is our only real barometer, and even at this stage, she’s chasing away the clouds and calling for sun."
-from www.warriorsforprincesspiper.com/blog March Blog Post, written's by Piper's mother.
Photo taken in March 2018. Piper was being prepped in the radiology area of Children's Hospital for her MRI.
Post for Day 17 to raise awareness for DIPG.
"Thank you for the outpouring of love and support yesterday. My heart was pounding out of my chest all day. It felt like June 12 all over again. We were overwhelmed with pain. Piper has come so far in 10 months and we simply hoped for more, as all DIPG families do. But after a sleepless night, I somehow feel a renewed conviction and purpose.
Today we met with the radiology team at University, and discussed all conceivable trial and compassionate use options with her doctors at Children’s. As we keep saying, there are not many options for DIPG, and everything on the table is in the earliest of stages. Meanwhile, there are a few things we do know. Piper responded well to radiation and Avastin, and it bought her an amazing quality of life. So that’s what we have decided to do. We feel it is the best choice given the awful hand we have been given. It is something we can start immediately, and won’t impede our most important mission in this life: making Piper happy. She has worked too hard for anything less...Please keep hoping and praying for our girl. She has already changed the world for the better."
-Social media update post by Piper's parents on April 17th, 2018.
Photo taken at Children's Hospital after Piper's MRI back in March. Piper falls asleep in her dad's arms, while both parent's wait to meet with the doctor and learn the results from the MRI.
Post for Day 17 to raise awareness for DIPG.
"Piper knows she has “an ouchy in her head.” She understands it has caused the difficult changes in her body, and means she has to take pills every day, and visit the doctor so much. But she does not realize that we cannot yet cure DIPG. She believes she can do anything, and that anything is possible. I feel fiercely proud of the warrior we have raised, while simultaneously my heart aches for her. She believes the world is better than this.
Each day, and each new adventure, serves to remind us that life is amazing. This world is imperfect, it can be excruciating at times. As humans, we are easily distracted from what matters most, but together we can also make it better. We thank all the #WarriorsforPrincessPiper for being the good to balance the bad, and for recognizing that you have the power to use your voice for change."
-from www.warriorsforprincesspiper.com/blog April Post.
Post for Day 15 to raise awareness for DIPG.
I don't have an image that I want to use today. Instead, I have reposted her father's update after this morning's MRI.
Post for Day 15 to raise awareness for DIPG.
*Every two minutes a child is diagnosed with cancer.
-from www.stbaldricks.org
Photo from December 2017, Piper's 4th Birthday Party. Piper had been in her mom's arms, or her dad's, for most of the party. She wasn't feeling her best and they wrapped her in dad's fleece to keep her warm. Towards the end she explored and ran around. For a moment, she laid down in front of me and we gobbled up pretend worms from the floor.
Post for Day 14 to raise awareness for DIPG.
"The power of community should never be underestimated...Our community is something we always had but never understood until Piper’s diagnosis. But every day since then, our community has shown up, for her, and for us. Now we understand.⠀
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When we were strapped for a venue, my sister used the power of community to ask for help...United Elite Cheerleading offered their spacious gym. The Enchanted Paintbrush offered...to paint faces. MICI Handcrafted Italian prepared 20 delicious pizzas. Jenny’s Haute Cakes created a work of art...Victory Love + Cookies baked up 80 amazing treats...All of these people, all of this help, was given free of charge. Given by good people because they care; because they saw our plight and wanted to support Piper. But help is such a small word – what these businesses gave and what we received was so much greater than that.⠀
The side effects of Piper’s chemo may have kept her from fully enjoying the day like she would have pre-DIPG, but nothing can keep this ray of sunlight down for long. Having this party meant the universe to her. That nearly 100 people made her celebration part of their Saturday was pure magic.⠀
Additionally, this month {December 2017} we were able to raise just over $4,000 dollars for The Cure Starts Now, so they may continue to fund critical cancer research...⠀
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Piper may not entirely understand this at four years old, but that contribution to research is her gift to other children. None of this would have been possible without our community-turned-Warriors working together toward a common goal. One that presently brings a smile to Piper’s face, but in the future, brings about long-ignored change for children with DIPG.⠀
Thank you with everything we have for supporting Piper, a girl certainly worth fighting for."
-from www.warriorsforprincesspiper/blog December post
Photo taken at the end of Piper’s 4th birthday.
Post for Day 13 to raise awareness for DIPG.
*Brain tumors are the most common solid tumor in children and comprise approximately 25% of childhood cancers.
*Brain tumors are now the most common cancer and cause of cancer-related death in children less than 15 years of age.
-from www.thecurestartsnow.org
These words are facts. This image is the truth of what these children and families endure. Here is another image from Piper's blood draw (February 2018). Mom held on tight to her pain stricken daughter, while dad enveloped both of them. We can't look away from childhood cancer. We can all do something small to be a part of something bigger. Awareness and donating - those are two of the answers right now.
Post for Day 12 to raise awareness for DIPG.
"As we prepare for Piper’s 4th birthday party, one I refuse to accept could be her last, I have been thinking a lot about how to celebrate in the context of cancer. We have more to celebrate than ever before, but this year our joy is indivisible with DIPG. The two cannot be separated. But just like you need dark to appreciate light, our unimaginable circumstance allows us to distill what matters and appreciate the magnificence of life."
-from www.warriorsforprincesspiper.com/blog
Photo take after Piper's birthday party in December, while she was playing with her cousins on the gymnastic mats.
Post for Day 11 to raise awareness for DIPG.
"Although months of science had gone into discerning which drugs would work to treat Piper’s disease, our health insurer refused to pay for them on the grounds that they were experimental and investigational...As a reminder, there are no drugs FDA-approved for the treatment of DIPG. We were crushed when we learned this, followed by the news that the drugs would cost $35,000 per month if we were to pay out of pocket.
Fortunately, I am an attorney specializing in insurance coverage and litigation...I scoured through our 128-page policy to find that while it potentially excluded experimental and investigational drugs, it covered off-label use of FDA-approved medicines. Against this policy basis, I called the insurance company every day for a week to gather and present information, I conferred with other lawyers...and I met with Piper’s doctors and nurses to obtain medical articles and letters supporting that the medicines were safe and effective. After a second appeal, the insurer agreed to pay for the medicines. A relief no doubt, but the process cost nearly a month of Piper’s precious time...Piper began using Panobinostat, taken in the form of two capsules three times a week, every other week. No small feat for a 3-year-old who practiced for an hour with M&Ms before she could learn to swallow pills. Pills that each cost $1,450...We hope that Piper’s fight, and in turn, our struggle to obtain science-based treatment for her, paints a picture of the difficulties pediatric cancer families face every day.
...So, in addition to caring for our child by day, and trying to maintain hope and normalcy, we were forced into a secondary fight in the off hours. Without the specific knowledge we were fortunate to have, we might not have this opportunity. That needs to change. Because in the world of DIPG, hope must be nurtured. Once you find it, you can never let go of it."
-written by Piper's father at www.warriorsforprincesspiper.com/blog
Post for Day 10 to raise awareness for DIPG.
TREATMENT.
"After Piper was diagnosed, we were presented with two up-front clinical trial options. We elected to participate in a phase zero study which entailed giving her one dose of Gemcitabine, a well-known chemotherapy drug, just before her biopsy, to see if the molecules could pass the blood/brain barrier (BBB) and reach her tumor. The BBB has proven an impenetrable fortress in countless trials before, but to everyone’s surprise the drug got in and was equally dispersed throughout her tumor tissue. But, given the early stage of research, we were told this wasn’t a viable therapy we could consider for Piper, as factors like dosing and side-effects were still untested... With the genetic information obtained from the University of Michigan study, Piper’s care team will pursue a personalized treatment plan. We reasoned that if obtaining biopsy tissue and genetically testing it represents the newest technology in the world of DIPG, we should use what we learned. While this is not presented as a “cure” (a word decidedly avoided in these cases) it goes beyond just controlling symptoms. It aims to fight Piper’s tumor using a duo of chemotherapy drugs believed to represent her best chance. Unlike trials, this gives her the freedom to continue on Avastin in lieu of steroids (greatly improving her quality of life) as well as stay in Colorado for her care.
If we are successful in our insurance negotiations, Piper will start treatment this month, along with physical therapy to encourage her body to reclaim its independence. We are in uncharted territory. But it’s what we have – and its more than some families ever get. For our part, we will continue to “enjoy our time” and use it to laugh together, research like hell, advocate in between, and hope and pray that this treatment works for Piper."
-from www.warriorsforprincesspiper/blog (October 2017)
Photo taken at Piper's therapy appointment in February 2018.
Post for Day 9 to raise awareness for DIPG.
WARRIORS.
"Many small people, in small places, doing small things can change the world."
~Eduardo Galeano
That's what a warrior is. That's what we are all doing by sharing, donating and buying a bracelet. Be a Warrior for Princess Piper. Be a Warrior for her family. Fight for a cure for DIPG in a small way and you have joined the fight to save a child and to provide hope for a future. A Warrior gives hope and Princess Piper needs us to fight.
Post for Day 8 to raise awareness for DIPG.
HELP.
Nothing in this new reality makes sense. It’s a place where opposites rule and decisions – what few we have in this mess – must be made quickly.
Where else can words like “progression” be words to fear? Where else can phrases like “enjoy your time” be the polite equivalent of “sorry we can’t help you”? Where else can children go from full of life, to a life celebrated in memory in the same year?
Every year there are new technologies and slick advancements – money poured left and right for mindless entertainment. But the world of pediatric cancer research remains sluggish and unchanged. Yet in our experience, people DO want to help and WISH they could do more. Trouble is, there seems little to be done until more doors open up, or alternatively, too much to be done with too few resources.
-from www.warriorsforprincesspiper.com/blog
Piper's sister, Harlow, fell and skinned her knee. Immediately Piper wanted a bandaid to help her little sister. She peeled the bandage from its wrapper, focusing on her job with her right eye. Harlow watched as her big sister lovingly placed the bandage over her raw knee. Piper then followed it up with a kiss right on top of the bandaid.
Bracelet sales are up, and more of you know about DIPG after this first week of telling Piper's story. That is success. That is compassion. That is knowing every little bit makes a difference. That is help.
Post for Day 6 to raise awareness for DIPG.
FIERCE.
DIPG affects the pons portion of the brainstem, rendering nervous system function impossible. Symptoms include double vision, inability to close the eyelids completely, dropping one side of the face, and difficulty chewing and swallowing. Unfortunately these symptoms usually worsen rapidly because the tumor is rapidly growing.
-from www.thecurestartsnow.org
The Waneka family doesn't always drink this much Gatorade, but when they do, it's Fierce! On this day in July 2017, there happened to be a lot of Gatorade in the fridge. Piper decided everyone was going to get at least one bottle, and then went to grab more. It's in the multiple sippy cups too. They seamlessly take turns humoring one another and it is a joy to be in their presence while they act silly, laugh and love one another, fiercely doing all these things in the face of DIPG.⠀
Post for Day 6 to raise awareness for DIPG.
TRUE LOVE'S KISS.⠀⠀
*Median Overall survival is less than 1 year, ranging from 8-11 months.⠀
*Approximately 150-300 patients are diagnosed with DIPG in the USA per year.⠀
*Median Overall survival is less than 1 year, ranging from 8-11 months.⠀
*Median age of patient with DIPG is approximately 6-7 years. ⠀
*Median Overall survival is less than 1 year, ranging from 8-11 months.⠀
*2-year survival is approximately 10% and 5-year overall survival is approximately 2%.⠀ -from www.thecurestartsnow.org⠀
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Does the repetition help make the point that you and I need to spread awareness and donate for a cure? We can change this. ⠀
Parents Nelson and Carrina mentioned "True Love's Kiss," and then Piper showed me what that meant. She grabbed each of her father's cheeks with her little child hands, pulled his face forward, and planted a big, sweet kiss on his lips. "True Love's Kiss" is no longer a reference to fairy tales and Disney movies for me... it is this moment right here.⠀
Post for Day 5 to raise awareness for DIPG.
FAR FROM NORMAL.⠀
Diffuse Intrinsic Pontine Glioma, or DIPG for short. These words came alongside others like “inoperable,” “incurable,” and “universally fatal.” The doctors said our beautiful 3-year-old would die from her brain tumor and that she might live 6-9 months if we elected palliative radiation, or just 7 weeks if we did nothing.⠀
We held hands and cried until there were no tears left. Then each of us broke the news to our parents. Life has never been the same since. We spent the next week in-patient with Piper, encouraging her to talk, chew, and slowly walk again. Her tumor was biopsied (something they only started doing in the last five years) and confirmed it to be grade IV DIPG. Every day since June 12, 2017, has been far from normal – even in the happiest of moments. Although our reality has been irreversibly altered, some changes have been positive. We understand as we never could have before that we should be grateful for each day. To take struggles one step at a time. To live for today. To love like there may not be a tomorrow.⠀
-from www.warriorsforprincesspiper/blog⠀
Post for Day 4 to raise awareness for DIPG.
BLOOD DRAW.
She’s been under general anesthesia 39 times since June. She’s had brain surgery and lives with a port in her chest. Her left eye is permanently turned inward such that she sees double a lot of the time. Instead of going to the hospital once a decade like the rest of us, she goes weekly. She walks (indeed, runs) even though she struggles to lift her right leg anymore. She is losing more and more of the blonde hair she loves with each passing day. Nose bleeds of varying severity are a routine part of life. She was forced to become left-hand dominant when her right hand lost its strength and dexterity.⠀
-from www.warriorsforprincesspiper/blog⠀
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February 2018. Piper returns to Children's Hospital for a blood draw and you can feel the pain looking at this image, but no where near as much as Piper or her parents do.⠀
Post for Day 3 to raise awareness for DIPG.
THIS IS WHO WE FIGHT FOR.
#WarriorsforPrincessPiper want to show Piper that we care. We wear our sparkly pink bracelets to let her know that she is stronger than she could have ever imagined, and that we are all on her side. 20% of proceeds from bracelet sale profits will go to support The Cure Starts Now and their efforts toward curing DIPG. The remainder will go to Piper and her family to help her live like the princess she deserves to be.
~from www.warriorsforprincesspiper.com
In August 2017, just two months after Piper was diagnosed, I met Piper, Nelson, Carinna and Harlow at a park near where they live. Piper had been at the hospital earlier, and it turned out to be a long and tough day for her, and the entire family. Piper was exhausted. But for a few moments here and there, the laughter and joy would bubble up as everyone around her filled the air with humor and playfulness. I will say it again and again, Carrina and Nelson are the parents I am inspired by. They never stop playing with their girls and pulling the beauty and laughter out of every possible moment. When I've told Carrina before that I am in awe of their parenting she responds that it is because Piper has shown them how and made them better. I am sure this is true, but I'm also pretty sure they have always been tremendous parents.
Post for Day 2 to raise awareness for DIPG.
A BIT OF 4% IS NOT ENOUGH.
“Today, a child with DIPG has no greater chance of survival, and no new treatment options than did a child with DIPG in 1960. While almost every other form of childhood and adult cancer has benefitted from new treatment modalities and vastly improved survival rates over this time, DIPG has not. By far the biggest part of the problem lies with research funding. Of all the national funding available for cancer research, just four percent goes to childhood cancers, and DIPG gets just a tiny fraction of that four percent”.⠀
-from www.warriorsforprincesspiper.com⠀
This photo was taken during that first session with them last August. Mom and Piper are smelling the daisies they picked from their backyard and Piper laughs every time her mom says it smells like poop. Piper understands and enjoys her parents dry and sarcastic sense of humor, but peppered in that are the most hilarious poop and fart jokes. ⠀
Post for Day 1 to raise awareness for DIPG.
WE HAVE A STORY TO TELL YOU.
#warriorsforprincesspiper
I met Piper and her family in August 2017. The organization www.quietstrength.org pairs photographers with children who are battling pediatric cancer and I was put in touch with Piper’s mom. I spent 4 hours with the family and quickly fell in love with Piper, her sister Harlow and parents Carrina and Nelson. For the month of April, I’m going to share their story with you. I want you to learn about DIPG and be a part of the cure by reposting Piper’s story and becoming a Warrior for Princess Piper at the link in my profile.
And so the story begins: Piper’s world has changed forever. On June 12, 2017, she was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG), an inoperable and incurable tumor in her brainstem. DIPG is a rare and aggressive cancer that occurs only in children. It robs its child sufferers of their abilities to walk, talk, smile, and control all parts of their bodies before it prevents them from eating, drinking, and breathing. DIPG has always been, and continues to be, the most deadly form of cancer ever discovered. Kids with it live a median of nine months after diagnosis.
-from www.warriorsforprincesspiper.com
This photo was taken during that first session with them last August. Mom and Dad are helping a 3 year old Piper get her pajamas on.
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