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.
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.
After you go to sleep and wake up is phrase we use to describe “tomorrow” in our house. Once Piper learned to talk, she spoke mostly in questions. Her inquisitive mind was constantly searching to understand. She was always asking what we meant by tomorrow, and when exactly tomorrow would be here. So we resorted to using something more descriptive. Also, Pip generally likes to take the long route when it comes to words. Why say just one, when you can use eight?
I’ve been thinking a lot about the routine of time and the dependability of days following nights following days, and so on. We know with a kind of certainty that Earth, and most of the lifeforms it harbors, will experience tomorrow. But for us, every day of the last year has been an exercise in uncertainty. We live on an island of hope, surrounded by miles of uncertainty, teeming with unspeakable outcomes.
We like to tell children and new graduates “your whole life is ahead of you,” but the minute you enter the world of DIPG, that statement becomes untrue. Instead, every day is one less on your life’s journey. It may sound morbid, but I have come to think it’s a more honest way to view the world. It demands that today matters. What happens today gets filed in the record of your life, it counts, and it should be a day you are proud of. Or at the very least a day you learned from. Procrastination or the idea of tomorrow as a re-do is the easier way to live, surely. But when has what’s easy ever been the answer?
Last week, Piper’s MRI results felt like desperately-needed provisions being airdropped to our island of hope, making life possible for a while longer. The re-radiation she endured with a smile kept the tumor progression at bay, with subtle improvements over her last scan. Twelve months into DIPG, this is the elusive positive outcome families hope for. It suggests we’ll have a little more time. On average, a few months. With that time, we are deeply grateful to carry on as we have been: making every day one that matters and pressing onward in our search for beneficial treatments that might extend that timetable.
With the guidance of leading doctors in this field, fellow DIPG families, and our oncology team at Children’s, we have drafted an application for compassionate use of ONC201, a new compound being used in a Phase 1 trail. ONC201 targets a specific histone mutation (K27M) that was detected in Piper’s tumor. Rather than enroll her in the official study, which would require us to be treated outside of Colorado and stop the Avastin infusions that greatly help her, we feel pursuing off-trial use will allow Piper’s quality of life to come first.
We are proud to say Piper’s Warriors contributed more than $8,500 to The Cure Starts Now through various fundraisers and events in May and June, so we can keep researching this disease. Our dream is that someday — maybe not after we go to sleep and wake up — but soon, children will be offered curative treatments for DIPG. Then families won’t have to live on an island of hope, while navigating health insurance and government bureaucracies, just to get access to medicines that may (or may not) extend their child’s life.
Thank you to every person who has followed Piper’s story over the past year. Thank you to all who have prayed for us, who have supported our awareness efforts, and to all who have shown us love. We have not reached this milestone alone. We see you, and we want you to know you made a difference in our lives by simply caring. Here’s to many, many more tomorrows together.
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.
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.
* * *
Ten days ago, we were at Sea World eating breakfast with the orcas thanks to the amazing people at Brave Young Hearts. The next day we walked through the San Diego Zoo looking the wrong way through binoculars and trying to find pandas. We laughed in the breeze at the sea lions in La Jolla, then ate ice cream with too many sprinkles in Legoland. We had fun, and Piper seemed okay. Like we had reason to believe she would be ours for a while.
But two days after we returned to Colorado, a routine MRI revealed that her tumor is growing rapidly and has spread to her cerebellum. The doctors advised us to stop giving her the chemotherapy drugs we thought were working, and which we fought so hard to get. They used the word “progression,” which every DIPG parent fears. “Piper’s tumor is progressing, I’m so sorry.” “She’s in progression, so we’ll see if there are any clinical trials she might qualify for.” “Because her disease is progressive, you can expect another 1-3 months.”
I wonder when they’ll find a better word. Progress means to make things better, and none of that is happening. There is not a single curative treatment option for children with DIPG. No drug has ever been identified that can slow it down. And all of the clinical trials are Phase I, meaning they’re not even aiming at efficacy.
We’ve elected to give Piper 10 more radiation sessions and re-start her on Avastin in the hope it will give her more time. So far, they’ve been the only things that have helped her. Regardless, there’s nothing else out there with greater promise.
As I watch her sleeping next to me, my heart aches with how perfect she is, and how I cannot feel whole without her. It aches with how much she deserves better.
Surrounding us is what can only be described as the greatest support system. Hope and prayer are given freely and appreciated deeply. Yet, it’s complicated. In the same breath, I feel like the luckiest mother and also the unluckiest mother ever. We have so much and so little, all at the same time. So much love, so few answers. So much will, so little control. We have experienced the best and the worst of this world.
The happiness that once came easy is now a decision we choose to make each day. Our lives have been turned upside down, kicked in the dirt, lifted back up, stretched thin, pieced back together, and so on. We have ups, we have downs. No two days are the same, and no single day is taken for granted.
We have met the uncertainty the only way we know how – with unwavering possibility, and a healthy dose of adventure. Since last June, we have made a grand tour of our home state of Colorado, taken a Wish Trip to Disney World, a special birthday trip to New York City, and up next: sunny San Diego, thanks to the wonderful people at Brave Young Hearts. This trip commemorates the nearly 10 months that Piper has fought DIPG – and fought hard.
We travel the week before Piper has her 5th MRI, just 42 days after her last scan. On March 5th, her MRI showed a stable tumor overall, but things can change very quickly with DIPG, especially at this stage. Piper’s pons was measuring about 1.5 mm larger than in December, but it also appeared less active. Because these tumors are diffuse and not solid, it’s incredibly difficult to gauge using imaging. The December MRI was also taken while Piper was on Avastin, a chemo drug that can alter MRI results, while the March scan was not. So, the hope is that the next scan will provide a better comparison and allow us to plan future treatment accordingly.
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. Special thanks to Roese Photography for your art and advocacy this month, and to The Cure Starts Now for featuring Piper’s story in your recent annual gala.
Your prayers and love have carried our family for 10 long months, and God willing, will continue to carry us indefinitely into Piper’s future.
Every day, questions and realizations that frighten and strengthen me enter and exit my mind like a busy train station. As I write this, our house is filled with the sound of two little voices, singing, playing, and imagining together. I can’t help but helplessly wonder how long we will have that complete joy. As much as we live by the tenet to focus on today, it’s hard not to think about tomorrow.
March 5 is day #266. It’s also the day Piper goes back to Children’s Hospital for her fourth MRI. It has been 90 days since her last scan. The process will be familiar, but no easier. We will hold her hand as they put her under. We will kiss her baby cheeks before crossing the long hallway to the waiting room. We will sit breathlessly for an hour. When they call us back to her recovery room, her peaceful face will jolt awake, followed by 30 minutes of disoriented crying. When she calms down it will be time to take the elevator to the 7th floor – a sort of second-home for children with cancer and blood disorders. But that is where my assurances end. While this scan will be performed like every other, its results are far less predictable. Statistics tell us this is the part of Piper’s story where we begin to talk about the end. Statistics are what DIPG families are given when we should be given facts, treatments, answers, and hope. Statistics be damned.
At nearly nine months post-diagnosis, Piper has had some of her best days yet. She plays with her cousins, she pushes the kiddie cart at the grocery store, she twirls in the living room, and she belly laughs daily. Her body is still weaker on her right side, and her left eye skews her depth perception and affects her vision, but she persists. Despite fatigue, and the side effects of her chemo, she approaches her days like she always has… with curiosity, creativity, and happiness – albeit with moments of justified frustration.
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.
Valentine’s Day is just around the corner, and Piper knows it. She calls it “Heart Day,” which is totally adorable in itself, but not half as much as her preparations for what everybody else considers to be a tertiary holiday. Hand-crafted receptacle for all the cards she plans on receiving? Locked that masterpiece down last month. Candy for you, me, and everyone we know? Got it three weeks ago. A royal selection of hand-curated Valentine’s Day cards to ensure a bespoke and timely holiday greeting? Got that too. In fact, it seems there is little left to be done but to spread the treasury of love she has saved up for us all.
While it might seem that such great lengths are simply the whims of a four-year-old girl who likes to shop and craft, I have come to realize they are not. Stop to consider what Piper has been through. 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. In response, she has undergone 5 weeks of an occupational therapy program where we literally wrap up her left hand to remind her to use the right. She takes three kinds of chemotherapy drugs, endures regular blood draws, and has a compromised immune system and essentially no platelets. We tell her she has to get poked so the hospital can interview her blood in a laboratory and ask it what’s going on inside her body. This almost always wins a smile, before tears resume and we have to hold her down while she pleads with us to protect her. On top of this, she is nearly 8 months into the 6-to-9 months her doctors gave her to live. But for Piper, exceeding expectations is nothing new. So, as we have since the beginning, we hold tight to hope. Hope that her body continues to respond to the medicine, hope that she continues to be happy, hope that she is the 1%.
The fact that Piper has any love left to give is amazing. The fact that she has so much is deeply beautiful and full of meaning. It serves as a reminder that we all have goodness, and kindness, and love to give all the time. No matter what happens to us. No matter what is taken from us. No matter how bad it gets. Even when we think we can’t.
Piper may be young, but we can all learn something from her Heart Day fervor: There is never a bad time to care about another person, and there is no circumstance which can bar us from elevating the human experience with compassion and solidarity. For as long as we are able to breathe, we can say “I love you.” For as long as we are able to hear, we can listen. For as long as we can lift our arms, we can embrace somebody who needs embracing. And for as long as we can put Hello Kitty tattoos into cheap, tiny Valentine’s Day cards showcasing cute little puppies, we can and should cover them with princess stickers and affix them to a box of chalky hearts in an expression of the goodness we have to give. We will all be the better for it.
Happy Heart Day.
Before DIPG, we wouldn’t have considered taking two young children to New York City in the winter with absolutely no plan. But I suppose we can thank DIPG for approximately one thing: it pushes aside unimportant hesitations, makes you consider more than just what’s sensible, and creates a space where you can act on a dream. One of Piper’s big dreams was to see what she calls “The Statue of America”. And that’s how our adventure started.
Despite hurdles like weekly doctor’s appointments, having to pack a full arsenal of medications, and the holiday travel rush – we said yes. We knew it would be physically exhausting and mentally challenging. But it didn’t matter more than telling Piper something exciting was going to happen, instead of just when she was due for her next chemo dose or blood draw.
Serendipitously, we were contacted by a kind stranger named Jennifer Majuta on the day we finally resolved to book a flight. As it turns out, in addition to being a seasoned flight attendant for Southwest Airlines, Jennifer is also a children’s book author and lives just up the street from us. She generously offered us guest passes to fly standby, and spent countless hours researching routes and walking us through the process. The day of our trip, as many as six Southwest employees greeted us at the gate, bearing gifts and smiles, and offered to carry our bags on the plane as Piper boarded first. Among the gifts was a Southwest teddy bear Piper aptly named “pilot bear,” and a book titled “Come Fly with Me” written by Jennifer. It was the perfect way to get her excited about the magic of travel.
Thanks to C. Roese Ramp, the talented documentary photographer we were introduced to early in this journey, we were put in touch with Tova Friedman, a NYC-based photographer, just days before arriving. On our first afternoon in the city, Tova graciously offered to meet us at the American Museum of Natural History so we could have the greatest of gifts, photos of the four of us together.
The next day we embarked on a chilly ferry crossing to see our muse, Lady Liberty. The expression on Piper’s face when she finally looked up to see the statue was worth every. single. hassle. Pure awe. It was as if we took her on a rainbow ride to see a unicorn. If only we could give her that too.
We also made stops at the 9/11 Museum, which reminded us that great tragedy is part of a shared human experience. Bryant Park brought us holiday cheer, The New York Public Library warmed us up again, and the sky brought us snow just in time to see the tree at Rockefeller Center.
It wasn’t the trip we would have taken before DIPG, instead it was the trip we took in spite of it. It was hard at times. It was unforgettable. It was all for Piper, but it was a dream come true for all of us.
The power of community should never be underestimated. You see it all across the world, every day. People helping people overcome natural disasters, violence, disease, the list goes on. 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.
When we were strapped for a venue, my sister used the power of community to ask for help. She posted our request on local forums and within hours we had people at the ready, offering help although they had never met us.
United Elite Cheerleading offered their spacious gym. The Enchanted Paintbrush offered time and great talent to paint faces. MICI Handcrafted Italian prepared 20 delicious pizzas. Jenny’s Haute Cakes created a work of art I never imagined possible. C. Roese Ramp lent her unparalleled photography skills to document the day. Victory Love + Cookies baked up 80 amazing treats to send home with guests.
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 we were able to raise just over $4,000 dollars for The Cure Starts Now, so they may continue to fund critical cancer research. On Giving Tuesday, we started a campaign in Piper’s name that generated $2,535 dollars in four days. That figure included 20% of Warrior bracelet sales to-date, which amounted to $1,000, including the largest single order from Meadows Family Dentistry who, in addition to being great people and a great practice, generously purchased bracelets for their staff. Victory Love + Cookies donated 100% of store proceeds last Saturday, raising an impressive $689. They saw more traffic that day than they did before Thanksgiving. And for Piper’s birthday party, another $778 was donated.
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.
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.
The party will take place three days before Piper crosses the six-month mark of her diagnosis. We didn’t know what this point would look like, but thanks to her determination and access to precision medicine, she fights on. She has good days, even great days, where it is possible to forget cancer for a moment. Her encouraging last MRI gives us every reason to keep hoping, something we truly thank God for. There is still much to battle in the months ahead, but we do it with renewed determination.
When we talked about how Piper wanted to celebrate her birthday this year, her response was “a big party.” So, a big party she’ll get. But this year, we had the help of a village. Thanks to the compassion and generosity of people in our community (many of whom we have never met) Piper’s day will be special beyond her wildest expectations.
I sincerely look forward to standing beside her band of Warriors to celebrate the gift of this birthday.
Arvada, Colorado, USA