Losing a child, no matter the circumstance, is a seismic event for a family. Losing Piper to DIPG felt like the end and the beginning of virtually everything. Like a natural disaster, it was total destruction and reduction, a low point, from which nothing remained, save a barely beating heart. There was no going back to what was before.
As we approach five months without Piper’s precious light, we resolved to rise from the rubble, gather up the pieces, and try to do what she would have done – – make this experience count. We felt the best way to continue her legacy was to officially join forces with The Cure Starts Now, and the more than 40 chapters they have assembled worldwide. By creating a Colorado chapter, we honor all that Piper was and continues to be, while shedding light on DIPG and the irreconcilable funding gap that has persisted far too long.
We remember her as a girl whose magnitude of character left you wondering how such a tiny body could possibly contain so much. Even if you only met Piper once, you would recall how she made you feel, something she said, or the outfit she was clad in that day. She captivated everyone, she left a lasting impression. She harbored a purposefulness, a sureness that made me feel she knew more than we ever will.
She taught us all, and we hope this chapter allows those lessons to be carried on the same wind that carried her name across states and oceans while she battled, and beyond. We hope the work we do continues to contribute meaningful change to the world of pediatric brain cancer, and that in the not so distant future, we will celebrate that hard-won cure together.
As many of you know, Piper loved a good story. She could often be heard saying “once upon a time…” Seems there is no better place to start. She would know.
Shortly after Piper’s diagnosis, she began asking for another baby. I can’t remember exactly when she started asking for a brother specifically, but it had been an ongoing conversation for many months before she died. She wouldn’t ask “if,” but “when,” her brother would be here. She explained repeatedly that she already had a sister – who sometimes drove her crazy – so she’d like to try a brother. I explained repeatedly that it wasn’t like ordering a costume from Amazon. Babies took time. Babies took effort and required sharing. Unsurprisingly, she remained undeterred.
As for me, it took nearly a year after first hearing the words “terminal cancer” to even consider the idea. I was wounded and still raw. The illusion that I was in control of my life had been taken away. I was reticent to have any more of my heart exposed to a world I no longer trusted or understood.
But Piper’s persistence was a force more powerful than fear. Our eventual decision to try again was not a reaction to Piper’s diagnosis, but a lesson learned from it. In a way that only she could, she showed us that love, and those we share it with, are the only things that truly matter. We decided that more of that – not less – would be our way forward.
Tragedy shows the world for what it is, a place where wonderful and horrible things happen. Things can happen at any time to anyone. No exceptions for those self-described as blessed. No exceptions for good people, bad people, old or young. Really, this has always been true. It’s just easy to forget. I find that when you choose to keep living and trying even after tragedy reminds you, you live in a truer state.
But after several months, it seemed a baby was not in the cards. We wanted so badly for Piper to know she would be a big sister again, to share some existence. As the months grew more challenging, and Piper needed more and more of us, the idea faded from view. Then, when least expected, it happened. A reminder that good things can surprise you too. I like to imagine Piper took her persistence for a baby all the way to heaven, her first official request. I like to imagine this was her gift. Her way of saying “keep going, I showed you how.”
When baby comes in July, his or her arrival does not restore us to a family of four, it makes us a family of five. Piper will always be our firstborn because children are not interchangeable, and they certainly aren’t replaceable. Harlow is excited for the role of big sissy, but she will always be the middle child (and as a middle child myself, I say that as a compliment). Our love for Piper will be our guide. And just as Harlow does, baby will grow up saying her name.
“Others, fewer these... had desired reunion with something they couldn’t
have defined, but which seemed to them the only desirable thing on earth.
For want of a better name, they sometimes called it peace.”
–Albert Camus, The Plague
Our search for peace and understanding is as recurrent as the number of seconds in a day. I imagine this feeling – of having to consciously breathe – will not waiver for a very long time. I wouldn’t expect it to. In simple terms, we miss her. Constantly.
Memories of Piper are the bookends to my day. My last thought each night, my first thought every morning, followed closely by the acknowledgement of her absence beside me. As I walk through the early motions of my day, the gaps fill in, the context refocuses, and I begin to feel the familiar hurt grab hold.
The wholeness that was present even as Piper fought (especially as she fought) has gone missing. Our love for one another was magnetic. She pulled the matter of our days into something that resembled structure, her presence was a constant force, and in turn our direction unquestioned. We held tightly to our shared purpose. Now, our souls feel lost. As if our physical bodies are left searching for the half of our hearts that died with her.
The fact that living with what feels like a knife in my chest is survivable, but DIPG is not, is something I will never understand. In these long days without her, some hours are kinder than others. My thoughts wander in all directions like a forgetful bird from branch to branch… sometimes I land on agony, sometimes hopelessness, sometimes disbelief, sometimes numbness, sometimes stinging anger, and sometimes – briefly – peace.
When I picture Piper, whole, in paradise, able to be the child she truly was, I do feel immeasurable peace. It allows me to see around my own pain to the mercy that she suffers no more. Although, some days I never get past wondering why she got sick at all… the odds, the smallness of a single errant cell, the ill-fated genius of our bodies. I find peace in imagining our reunion, where she answers all the questions that weigh on me. I find peace in the archives of our memories, where I can recall exact moments and hear her euphoric giggle in my ears. Watching Harlow develop into a simultaneously similar and distinctive personality brings me peace. The fact that Piper’s warriors still grow in number, still continue the momentum she built to raise awareness, to fund research, and to support other families, brings me peace.
But through it all, the inconceivable missing and longing for her is always, always there, like a very heavy coat I can’t seem to remove. It can’t be removed, because I’m still so cold.
After Piper was diagnosed, I hated hearing that her death from DIPG was unavoidable, an eventuality I had to accept. I could not bear to hear it, even if I understood it. Now I feel just as hostile to the thought that I will never again in this life hold her, kiss her, or put her in another costume. I know it is so, I watched her light fade from me. But the very idea seems impossible. Like she’s only out of reach, not gone from this world. These are the thoughts that leave me feeling lost and directionless. Because the world just feels so empty without her in it. That life can and does go on will never feel right or just.
Piper desperately wanted to be five. It seemed to her to carry an authority that four could only allude to. As we prepare to face what would be her 5th birthday without her, the age she assumed would promote her to grown-up liberties like not holding hands in parking lots, operating the oven, choosing to drink only “brown soda,” or maybe even inhabiting a house of her own, I can’t say I’ll be strong. I’d give absolutely anything to be planning her party instead of bracing for a typhoon of heartache. Everywhere I look I see things she would have loved, or things we would have loved surprising her with. No, I can’t say I’ll be strong on December 18, or December 25, or any of the endlessly hard days ahead. But I can say I’ll keep seeking peace.
Knowing without question that Piper left this world better than she found it is perhaps the greatest peace this situation can offer. Knowing that we were present to hold Piper’s hand through every trial of her life is strangely comforting too. When it comes to the profound grief of losing a child, time is no remedy, it’s merely a measurement. I could live a million lifetimes and still ache for Piper. But I’m hopeful time will soften the edges of our hurting, until eventually our longing brings only warmth.
With love, from Mama:
She went by many names: Piper the powerful, Pretty P, Pip Pip, Pipes, Princess Piper, Sissy, and Little Dove. Her life on this Earth was extraordinary. From the moment of her birth, she rose to the occasion of living. She was vivid.
The only thing that could dull her vibrancy was DIPG, so she left for a place illness could not touch her beautiful brain – a place cancer does not exist. After all, heaven is the only place she could go where she could ever be loved more. In her almost 5 years, she inspired untold numbers of people with her singular and irreplaceable nature.
I will miss so many things. Her wild laughter, her confidence, her curious mind, the way she loved us – telling us countless times a day. How she inspired Harlow. I will miss our impromptu songs with made-up lyrics, her way of starting sentences with “I have a great idea…” and ending them with “wasn’t that a great idea…”, or “let’s pretend” followed by “just say yes Mama.” I love how she said words like “grabity”, “soupcase” “complainments” and “wallypop”. Her appetite for everything, especially food, was insatiable.
If I could share some wisdom we’ve gained through her illness it might simply be “don’t take life for granted”, but sometimes that seems like human nature. So instead, I’ll ask that when you start taking life for granted, remember Piper. Her bravery, her smile, her strength and her joy. Let her story correct your compass. Let her remind you to be grateful. Let her remind you of your own power to make an impact for others.
I want to share recent memory, one I will remember as a turning point of sorts. It was a warm afternoon in early September, and Piper and I were playing outside. She had lost the ability to walk independently only weeks before. She insisted I let her walk in the grass. Walk withoutholding her. She had done so well in her walker the previous two days that she believed she was getting stronger.
I knew I couldn’t talk her out of it, so I stood behind her and let go briefly. She attempted one step, but stopped short, and fell almost face first with her arm taking the brunt of the impact. I was cautious, expecting her to fall, and I still wasn’t ready. I wasn’t prepared for how quickly her body gave.
Immediately I scooped her up and held her in my arms. She was in tears. She said she was mad. We sat and talked a minute.
She asked me why she couldn’t walk anymore.
I said it was the ouchy in her head that caused the trouble.
She said, “when can we take the ouchy out?”
I explained that it didn’t work that way, but that I wished it did.
She said, “when will I walk again? I used to be able to walk.”
I said I didn’t know, but that she was so strong, and that we were proud of how hard she was trying.
She said, “when am I done with my cancer?”
I said I didn’t know, but that we were trying our best to make her feel better. I assured her that none of it was her fault.
She said, “how did the ouchy get in my head?”
I said nobody knew yet, not even her doctors, but we were trying our best to help. That it was why we asked her to take the little white pills each week, and the little green pills before that.
She said, “why don’t they know?”
I explained that doctors haven’t been able to do enough experiments with ouchies like hers, but they hoped to understand soon.
She sat quietly in my arms like she was trying to add it all up. I asked the next question.
I said, what is the most frustrating thing: not being able to walk, or not being able to use your right hand, or your left eye not working like it used to, or having to try so hard to talk and eat?
She thought a minute then said, “the most frustrating part is not knowing why the ouchy is in my head… I want my doctors to know.”
Can you imagine? Please try. I know you can.
My life’s greatest privilege is being Piper’s mother. A mother’s love is unbreakable, and in this case, full circle. I held her first, I held her last.
I think of our stay in the hospice facility just weeks ago. I watched her sleep. The room was so still. I stared at a picture of a flower garden on the wall. It reminded me of the stock art on the walls of the labor and delivery room the day Piper was born. Only then I was excited-nervous. That day I was sad-nervous. I saw the bright owl print cooler bag I bought to keep Pip’s baby bottles cold when we were out and about. But inside now were her liquid narcotics. My eyes wandered to the blue and white striped bag slumped on the floor. It was a baby shower gift I received with joy… a lovely diaper bag for my impending motherhood. It was now filled with haphazardly packed toiletries, only this was no hotel. Outside her room a group of sweet women sang, as I imagine they often do for those who find themselves there. They sang “love transcends all time. It is the voice inside the heart that never stops singing.”
I think of Piper’s birth as the pain I was willing and honored to bear to bring her to into this world, the price all mothers must pay. Comforting her as she died was never something I could foresee, yet it was just as much my duty, my honor. Through the anguish of that experience, I realized it was a price I would pay again and again if given the chance.
Please join us in seeking answers to Piper’s questions.
Because nothing will change unless we change it. And even at four years old, Piper knew this. Our last great adventure together was a trip to Chicago, and as we neared the security check point, I told her we needed to throw away her disposable princess cup. She was indignant, you might even say pissed. She demanded an explanation. I said those were the rules if we wanted to get on the airplane. I’ll never forget… she looked up at me from her wheelchair and said, “well, then I’m going to change the rules.” And I know she will.
We are forever changed by Piper’s life and fight with DIPG. What we ask that you allow yourself to be forever changed too. Each of us can help carry her mighty legacy.
As Piper did, may you see that the time to live is now. May you always find the beauty and silliness.
And may you always be left wanting more.
* * *
With love, from Daddy:
I’ve imagined myself rising up to this podium hundreds of times. I’ve imagined myself standing up tall, composing myself, and letting my voice fill this sanctuary with words of honor until everyone rose in applause to celebrate Piper. I feel like my entire life has led me to this moment. The tens of thousands of pages I’ve written in my legal practice. All of the courtroom appearances, all of the arguments, and all of the trials. All of the dinner toasts, all of the whispers to my girls, and all of the love letters have led me right here. To prepare me to use only words to describe something indescribable. To have only pages to covey what can only be felt.
If I stumble, please forgive me. And should you ever need forgiveness, you shall have it from me.
In truth, I started writing the story of Piper’s life when she was born. Silently gathering the moments that left me breathless and safeguarding them in my mind. Over the last 16 months, I’ve written this eulogy in my head dozens of times. Adding things here, removing them there, and starting over, and then over again. And I’ve struggled. Because the raw materials are too vast, and the subject too wondrous. What I’ve come to realize is that there are no words that would ever be good enough. And there is no way of honoring Piper that would let everyone know how much I love her, how much I admire her, and how proud I am to be her father.
So I’m going to tell you three things. I’m going to tell you something miraculous, I’m going to tell you a secret, and I’m going to tell you something amazing. And through these three things, I hope you get a glimpse of what I got to see. And I hope they change your life forever, as they have changed mine.
It’s difficult to say what a miracle really is. Even Webster himself doesn’t have the answer. On one hand, the dictionary defines a miracle as “an extraordinary event manifesting divine intervention in human affairs.” On the other, it says a miracle is “an extremely outstanding or unusual event, thing, or accomplishment.”
I don’t know which is right, or if either of them is, but throughout Piper’s cancer journey, I begged and prayed for the miracle of her healing. I prayed that she would be the exception to the statistics, and that somehow, because she was Piper, because she was too special not to exist, that she would be different. I never got that miracle. And as easy as it is to be angry (and I was angry), or to turn my back on the mysteries of the things I cannot reconcile with reason or justice, I can tell you that I witnessed a different kind of miracle.
Shortly after Piper was diagnosed, she had to have back-to-back surgeries on her brain and chest. She was in the operating room for hours, and when we got back to our hospital room we fell asleep in the bed. I remember waking up–it was probably one or two in morning–and I stared down at Piper. I remember noticing how deeply and peacefully she was sleeping. And as I looked at her, I saw that her skin was still orange with iodine where they had operated, and her hair was greasy and caked with blood, and I saw the sutures on her head and chest staring back at me like claws, and I started to think about what she had just been through, and what she still would, and I just started to cry. I remember feeling more despair in that moment than I have ever felt in my life.
And I don’t know why, or how, but right then—RIGHT THEN—Piper whispered, “I love you forever.” She didn’t open her eyes. She didn’t wake up. But she spoke those words, and I remember feeling like no matter what happened, we would get through it.
Remembering this moment has brought me comfort over the last 16 months, but it has also brought me insight. As we go through our lives, it’s easy to lose focus on what truly matters. Our jobs can be demanding, there are always more tasks to do, and something is always pulling at our attention.
Before Piper was diagnosed, and even thereafter, I struggled with these same things. But Piper said those words to me, “I love you forever,” because that’s what I said to her. If I can offer only one piece of parenting advice, it’s this: children learn only by example. Every day before she went to bed, I would say “I love you forever.” Her mama did too. It took two seconds. It was easy. And oftentimes I thought it was lost on her. But it was also the most important thing I did every day. Because when the time came for Piper to face difficult things, and when the time came for her to pass on, she knew that she was loved.
And knowing that someone loves you can provide all the comfort you need in this life. I know it does, because when I needed it, in that dark moment at the hospital, she gave it back to me.
I also promised that I would tell you a secret. And it’s not nearly so profound as the miracle, so don’t get your hopes up.
I’ve often thought that honesty is the highest form of moral development. It’s easy to tell white lies, or to hide things about ourselves, or to paint over our transgressions. Owning up to our mistakes, and seeking atonement, is often the most difficult thing our psyches are asked to do. Some adults never learn to be honest with themselves or others.
Piper didn’t have this problem. She was brutally honest. She didn’t like that my apparel lacked glitter. She didn’t like my car. She told me Chef Boyardee raviolis were better than my homecooked meals. (And Piper, if you can hear me, you were wrong about that last one. Flat wrong. But I know you weren’t lying, because you loved that garbage).
There’s one memory that sticks out about all others. Before Piper was diagnosed, she slept in her own room. But after that, she slept with us every night. And one night, more than a year into her battle, she had this look on her face like she just cut her sister’s hair off, or burned down the playhouse, and she leaned in close to Carrina and whispered, “When I used to sleep in my room, sometimes I would wake up at night and brush my teeth again.” And she said it like it was bad thing! Carrina just laughed and thanked her for her honesty. But I kept my mouth shut. Because had she asked me, I would have to have confessed that sometimes I NEVER brush my teeth, and that I ALWAYS lie to the dentist when he asks me how much I floss. I guess we can all learn something from our children.
I also told you I would tell you something amazing. And I will. Someone who has stood in my same shoes once said that watching your child fight cancer schools you in brokenness. And I’ve thought about that a lot. There isbrokenness in watching a child like Piper fight so hard and suffer so much. Your patience is broken. Your security is broken. Your dreams are broken. It can feel like everything is broken, and that you yourself might break.
But that is where my agreement ends.
When Piper was diagnosed, she was three years old and weighed just 25 pounds. Despite this, she endured 2 surgeries, 7 MRI’s, and 40 radiation sessions. She took a cocktail of powerful chemotherapy drugs, went under general anesthesia 60 times, and had to go to the hospital more than 100 times. She did all of these things while slowly losing her abilities to walk, talk, and use her dominant hand. And eventually, she lost her abilities to eat on her own, drink on her own, go to the bathroom on her own, and even hold her own head up.
And if you think that her ability to do all these difficult things while losing so much is the amazing thing I want to tell you about, it’s not. What’s amazing is that she did all of these things while still managing to smile every day of her life. Piper smiled at us until three hours before she died. It was one of the last things she chose to do on this Earth. She lost every function of her body, and suffered through unimaginable horrors, while still managing to find the beauty of living each day that was given to her. Her example can teach every one of us that there is ALWAYS a silver lining.
When everything around you feels broken, and when you are devoured by tears, if you look hard enough you will find something inside you that cannot be broken. It’s already there. It can never be taken away. And if you just hold on to it, there is nothing you can’t do.
Whatever good you think needs doing, do it. Whatever wrong you think needs fixing, fix it. Whatever obstacles stand in your way, crumble them like the dust they’re made of.
And should you ever doubt whether you have what it takes to keep going when everything around you is falling apart, think of my little girl, and let your voice ROAR. Then put a smile on your face, until everyone sees, and everyone knows, that you cannot be broken.
Posted by Liz Kotalik on Monday, October 22, 2018
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 brave. She was strong. And she was not afraid.
With broken hearts we share that on Friday, Oct. 19, 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.
Thanks to all who have expressed interest in attending Piper’s service. Anyone who wishes to attend is welcome to join us in celebrating her beautiful life.
Friday, Oct. 26, 6:30-8 p.m. — Vigil (this will be informal, an opportunity to share stories and pay tribute) Location: St. Francis of Assisi Church 2746 Fifth St., Castle Rock, CO 80104
Saturday, Oct. 27, 10 a.m. — Funeral service and reception Location: St. Francis of Assisi Church 2746 Fifth St., Castle Rock, CO 80104
Burial to follow at Cedar Hill Cemetary
880 E. Wolfensberger Rd., Castle Rock, CO 80109
*In lieu of flowers, we ask that you consider making a donation towards DIPG research at The Cure Starts Now using Piper’s tribute link: www.donate2csn.org/piper
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 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 lose 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.
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.
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.
Arvada, Colorado, USA