Payson helped out with the 2020 Festival of Trees! As part of it, he recorded this rad bit with the Music Therapy team at Primary Children’s Medical Center. Tasty, tasty vibes.
Payson got to be the virtual host of the Primary Children’s hospital groundbreaking in Lehi!!
Wendy Inkley is the best. She’s just the best. She was asked to write a little message to Children’s Miracle Network sponsors for Mother’s Day, and this is what she banged out.
Dearest Children’s Miracle Network supporter,
I am Wendy Inkley, the mother of a survivor of Leukemia. In fact three years ago today we got the scary news that my son was likely going to die. No they didn’t ever say that, but it’s where my brain went; I thought I was going to lose my sweet six year-old Payson to a big, scary disease called Leukemia. Turns out my brain was wrong. What a gift!
Speaking of gifts, shortly after he was born, Payson gave me the best Mother’s Day gift when he eventually breathed efficiently enough for him to get out of the NICU. When I finally got to hold him, two long days after arriving, I realized what a gift he was. I cry now just thinking about that joy. Would I have known such joy without that loss? All I know is that moment was a tender, sacred gift. Unforgettable.
Now to the gift of which you have been a part. Seven years after that sweet moment, my Payson celebrated his golden birthday, turning seven on the seventh of May, 2017. He celebrated that birthday in the care of incredible healthcare workers at Primary Children’s Hospital. He had the gift of restored life; the promise of health that had temporarily been taken from him.
A thank you doesn’t suffice for what part you’ve played to provide such a gift. I could not have provided that for him. I gave him life once but could not give him that again. That’s where you came in. So. Thank you.
Once again it’s Mother’s Day and I will never celebrate this special day without appreciating each life I was able to bring to this world. Thank you for caring for my little ones. Thank you for believing that each life is worth fighting for and for filling in where so desperately needed. Happy Mother’s day fellow life-bringers. May you know of your importance in this beautiful world. YOUare MY gift this year.
It’s been three years since Payson was diagnosed with leukemia. May 3, 2017.
I’m sort of at a loss for words about all of it right now. I don’t if that’s because of how the world is changing in the present, the situation that so many are dealing with in real time, and how relatable but foreign the suffering and struggle is. I mean, in some ways, I think suffering is universal, and everybody gets it to some level. But in other ways, it’s all so personal, so unique, so unfathomable to anyone else.
But the point is this, Payson ain’t suffering now. He’s thriving. He’s strong, he’s sparkly, he’s so full of energy and excitement. He’s smart, he’s compassionate, he loves making people laugh. He craves time with friends, he’s connected in special ways with each of his siblings. He’s curious and creative. He’s one of the most content humans to ever exist on planet earth. Payson is such hopeful, tangible evidence that light follows darkness.
I think it’s odd, and almost unnerving what I’ve forgotten. So many soul-excavating times, so many days I wanted to fast forward six months, so many bartering sessions with God – these things that come back in flashes when there’s an anniversary or when an unexpected photo pops up or when I’m having a conversation that triggers something.
But also, I try to remember. I really do. Because, dammit, that was some experience we earned, and I want to always be worthy of the lessons that I learned watching Payson do his thing.
So, a couple thoughts on this third anniversary of when the whole world ended for us and a new one began.
The first is, Payson doesn’t look like this anymore…
He looks like this…
Light follows darkness.
The second is that this moment…
…and literally thousands of others like it, the countless times Payson and our family have been provided for and thought of and served – these moments, this charity, has been and continues to be inexhaustible. And they wouldn’t have happened, not like this, without leukemia. So many people are better because of the selfless and undeservedly kind ways they’ve served this kid. They’ve humbled us. Our tribe has expanded and deepened in ways we couldn’t have fathomed three years ago.
Light follows darkness.
And last, as Payson said this week in a conversation with Wendy and Dr Fluchel during a tele-checkup, “If I could choose to go back and not have cancer, I wouldn’t. I mean, I got to go on that cruise!”
It’s all perspective. All the pain and worry and missed playtime and bald head and barfy nights and beautiful days spent sleeping indoors and battles with sticky stuff and scary hospital times, all of that is fine, because of that sweet four days on the Disney Dream. Just awesome.
Here he is, on that Make-A-Wish cruise, dancing in the rain, watching the fireworks:
Dancing in the rain, watching the fireworks.
So, I guess the point is this – May 3, 2017 was the worst day of my life. And also, the light that has followed that darkness is indescribable.
Let’s kick this pig.
The hospital where Payson recurved treatment, Primary Childrens Medical Center, is part of the Children’s Miracle Network (CMN), which is an organization dedicated to fundraising and supporting children’s hospitals throughout the country.
Each year, the different CMN groups around the country choose a Patient Champion to sort of be the face of the organization at events and activities. For 2020, they chose Payson as the Patient Champion.
This means that he will go to a lot of events, shmooze the crowd like the total glad-hander he is, speak a few words mostly aimed at getting laughs and phone numbers of the cute ladies in the room, sing Eye of the Tiger, grab a handful of popcorn shrimp, and blow out of there.
We are so freaking excited to have him participating in such an impactful way. This is a group that raises millions and millions of dollars. It’s impossible to describe how much they help families like ours, and lots of others.
Anyway, one of the first things he got to do was film a tour of the hospital for sponsors. Evidently, one of the most frequent requests PCMC gets from donors is to take a tour of the facility. Also, it being a hospital, it’s not all that convenient for the like doctors and nurses and patients and everybody else to make way for the gawking well-doers. So, in an effort to give these incredibly generous people an inside look, they asked Payson to go up for a few days and film the tour as the tour guide.
You’ll hear lots more from us about this Patient Champion thing in coming months, and even about ways you can contribute, but, for now, here’s the sweet, sweet vid on the YouTubes.
And, in these crazy times, if you feel so inclined to give a few bucks today, you can do so by texting MIRACLE to 78619. It takes like 60 seconds.
LET’S KICK THIS PIG!
Payson was diagnosed with leukemia on May 3, 2017.
Our family decided last night, October 8, 2019, that Payson is done with his treatments!
It’s been 889 days. He’s been a cancer kid for 889 days, and today, for the first time since he was diagnosed, he’s not a cancer kid. He’s just a kid who doesn’t have cancer anymore.
A little background about why this decision was even possible:
At Payson’s treatment in August, we were told by the doctors that there were some new findings that impact his course of treatment. For a diagnosis like his, boys typically receive about three years of treatment, one more year than girls receive. Something about gonads and other male-intensive equipment that in the past has lead to a higher rate of recurrence among boys without the extra year of maintenance.
And, we found out in August that Payson is a girl!
Actually, not really. He’s still a dude, gonads and all. And this got weird.
Anyway, recent findings indicate that, due to more aggressive treatment at the beginning of therapy, the extra year for boys doesn’t seem to make much difference in the likelihood that the freaking leukemia will come back. So, for Payson, it meant the possibility of cutting short his treatment by about eight months.
They told us this news in August, recommended that he be finished now, but left the decision to continue or to stop entirely up to us.
AND LAST NIGHT WE DECIDED HE IS DONE!!!
So why, you ask, did it take so long to make this decision? Like, your child can be done with chemotherapy early. Why didn’t you jump on this as quickly and aggressively as you jump on the dessert bar at the Chuck-A-Rama?
This is a valid question, and I’m not sure I know the answer, other than that having a kid with cancer is hard. Sometimes there are emotions and memories really close to the surface, things you don’t really know are there, and these things pop up and smack you in the kisser at really random times, and it takes some time to work through them.
So, in the midst of this total relief and joy, there’s some other things mixed in that are unexpected and weird.
It’s weird that, somehow, in some impossible way, we look back on this thing with so much joy. Like, the excavation of our souls, the total helplessness, the loneliness, the fear, the darkness, the weight – somehow these things have dimmed with time. Sure, they flash back up readily and with abandon sometimes, but they haven’t endured. What has endured is this new level of love, appreciation, gratitude for this little kid, for his siblings, for all of the people who have rallied around us and been with us and carried us, for our faith in a plan and in a God who is with us. So, there’s a bit of mourning the end of this, somehow. A bit of something lost, something that’s defined us, something so important to our story. I can’t quite describe it, but somehow we’ll miss it.
It’s weird that stopping treatment makes it somehow seem less safe for Payson, like active maintenance felt proactive, and this feels vulnerable and passive.
It’s weird what you think about when you have to really consider that this thing might come back, and if you choose incorrectly, you might regret it with your whole entire soul.
It’s weird to be more concerned about the finances of the whole thing. Our approach has been to manage these things, keep up with what’s needed, but not have it be an added burden and stress. We’re doing fine, but now this feels more urgent and necessary.
It’s weird to find that you’ve acquired the most hope that you’ve ever had in the times that should be the most hopeless.
It’s weird to feel a pressure to back up all of your talk to pay it forward, to really show charity to other people in the perfectly incredible ways that you’ve been shown charity.
It’s weird that you wonder if you’ve learned what you should, if the growth to your character and compassion is equal to the sacredness of the opposition you’ve encountered. Am I who I should be because of this? Is the family? Is Payson?
So, lots of navel gazing. Unexpected thoughts and feels that I guess are just part of another chapter in the journey.
When they first told us he could be done, we were pretty dead set against it. We had a plan, his treatment has gone so well, why screw it up? Then it hit us that, duh, if you have the opportunity to relieve your kid of having a bunch of weird medicines with whacked out names shot into his body for the next eight months, you should probably jump on that. Duh. Like, I’ll be there’s never been a person who, on their deathbed, said, “I wish I would’ve given my kid more chemo when he didn’t really need it!”
Still, it was a change of plans, but we started to consider it. Took it to prayer. At some point we realized that Payson needed to be a part of this, and actually what he felt was the most important thing, so we included him more.
Last night he sat down, wrote out a list of the Pros and Cons, took some time to think and pray about things, we talked about all of the relevant things and most of the irrelevant things, and then we decided together. It was a very special night.
I was so proud of him, for his honesty, for his openness, and for being so brave. He had to face some stuff that I didn’t realize he felt. He’s afraid of getting poked with needles after he gets his port out, he will miss going to the hospital because the nurses and doctors are his friends, he likes feeling special and this has made him feel special, he’s afraid the kids at school won’t be kind to him anymore if he doesn’t have cancer, he’ll miss the people that have done and continue to do incredibly thoughtful things for him, he’ll miss the special times with his mom on treatment and sick days.
I’m not sure I’ve ever given enough thought or weight to what this experience has been for him. What he’s endured. He’s been such a champ, such a rock, so consistently awesome, that I’m not sure I’ve ever counted the cost for him. It was eye opening and heart breaking and inspiring. They told us from the beginning that they can cure the cancer, that our concern should be for what kind of kid he was after the cancer was gone. It think he’s doing good.
So, we don’t know what the immediate future holds. Pretty soon here, he’ll ring the bell. The next step is probably getting his Iron Man port out. It’ll be weird to have him with just two nipples again, but we’ll manage. Beyond that I think it’s checkups with decreasing frequency, and then at some point they’ll tell us that he’s in the clear and no more likely to get leukemia again than anybody else is.
He’s got some really awesome opportunities to contribute with the Children’s Miracle Network coming up, and we’re so excited about that. We’ll keep the Let’s Kick This Pig audience totally informed about those shenanigans.
He’s in fourth grade. He’s small for his age. He’s got a rad group of friends. He’s his siblings’ hero. He’s in a couple of plays. He moves too slow when doing his jobs, and it takes him forever to put on his shoes. He loves Arby’s. And, for the first time in the 889 days since May 3, 2017, he doesn’t have to take any medicine for cancer.
He makes me believe.
Let’s kick this pig!
Well, that was a once in a lifetime hootenanny. Holy cow.
I have three thoughts.
1. There aren’t words to accurately express how we feel about Make-A-Wish. Those people are simply heaven sent. Even for a kid who is doing great and has such a promising diagnosis, this trip was overflowing with hope and meaning and every feeling imaginable. We can’t ever say thank you enough for their charity and generosity, but we are gonna do our damnedest to pay it forward.
2. The thing that matters most, the only thing that really matters at all, is your people. Your tribe. The constants. The answers to your questions. The faith to your doubts. The light in the darkness. This trip made me want to love the heck out of my tribe, to send back more than I get, to never take any of them for granted for a second, and to give myself most to the people who are closest and most true.
3. This video here is one of my favorite moments in a trip fuller than a tick with favorite moments. It was pirate night, and Disney kept hyping the show and fireworks up on top of the ship at 10:45pm. We made our way up there, with pretty much everybody else, and the place was packed. The pirate show started, and just before the fireworks were going to launch, a freaking downpour hit. Deluge. People scattered for shelter, dogs and cats living together, mass hysteria, and our family got split up, all of us looking to get out of the monsoon. I found a spot, turned to look back outside, and there were maybe 10 people left out there. Among them, this little nine year old cancer kid, jamming to the pirate music and watching the fireworks in the downpour, totally loving every second. Glorious. We all rushed back out with a few other brave souls and partied in the rain. I’ll never forget the five Inkley kids, dancing in the rain, watching the fireworks, just living the moment. Payson has been through it, but they’ve all been through it together. What a great freaking moment, a tiny moment that captures what we’ve tried to do the past couple years. Dancing in the rain, watching the fireworks.
Up yours, Leukemia. Let’s kick this pig.
Payson sang Eye of the Tiger on the radio this morning. We are currently taking applications for groupies.
He’s going to be on the KSL 1160 again at 2:00 this afternoon and on KSL TV at 3:00. Hopefully more singing. And perhaps some clogging.
Here’s a link if you’d like to donate to Primary Children’s Hospital!
Let’s kick this pig!
So, Payson has been invited to help KSL during their 2019 Give-A-Thon on May 21. This thing will raise money for one of the most magical places on earth – Primary Children’s Hospital.
Primary Children’s is a sacred place. It’s frightening and humbling, and also so full of hope and fight and triumph and the absolute best group of humans to ever take the Hippocratic Oath.
So, on the 21st, Little Man will be on the KSL radio and TV talking about his experiences at Primary Children’s, how much the place has meant to us, and how many of the nurses he’s tried to date.
Here’s a promo thing that he recorded for the Radio a few weeks ago.
Our family has been the most supported group of people in the history of people who need support. We’re so grateful for this opportunity to contribute to something that will help so many more families like ours and kids like Payson.
So, if you want to get involved, you can hear Payson on the radio and see him on TV on the 21st, and, if possible, you can donate. We hope you can contribute, even just a bit. Here’s a link for more information about this whole thing.
The 21st also happens to be Payson’s parents’ 20th wedding anniversary. We wish he would have considered that before he got Leukemia. In any case, this is a pretty great way to spend an anniversary. Sure glad he’s around to spend it with us!
Payson got diagnosed with Leukemia on May 3, 2017, and the world hasn’t ever been the same.
Like, the stars shifted. The whole world is different. Every single thing changed. In my mind, somehow there wasn’t anything before May 3, 2017. The pictures on our wall and the people around me and my life full of so many memories better than I deserve tell me that I’m wrong about that, but somehow, I don’t remember. Not really. A whole new way of experiencing this thing we call life started that day.
I think one thing lost, that I miss and don’t think about much, was the care-free way we used to live. The quickness to laughter. The ability to shrug things off. Dancing through life. I cherish those times. On that day, everything got harder. Just, harder. I’ve forgotten what it truly feels like to be on top of the world, totally in control and alive and unstoppable. I’m not sure that’s ever coming back, I’m not sure it ever could, and it’s OK. But I miss it. Continuing on when there’s always just a hint or a tiny tiny shadow of something weighty, that’s kind of just the way things are.
All of this sounds really angsty and navel-gazey and written by somebody who wears really dark eyeliner and listens to too much Depeche Mode. There’s also so much that we’ve found. Meaning and purpose and focus. Depth to our souls that I wouldn’t trade for all the happy-go-lucky in the world. It’s just that, lots of times, something sparkly is lost in the exchange of experience for knowledge.
Life, for all practical purposes, just keeps moving on. Like, Payson’s just a kid. He’s got a thing. He’s dealt with stuff that sucks. But he’s a kid. He wakes up. He does his thing. He complains about going to school. He does chores around the house. He gets moody. He plays the piano, he performs in plays, he plays soccer. He has lots of opinions. He’s too loud sometimes. He finds things funny that are so impossibly stupid that no person with a fully functional brain should even entertain with a single thought, but he laughs until he cries sometimes.
Visits to the hospital are just part of the routine, pills every day are just what we do, visitors washing their hands upon entry into our home with a Bill Murray in What About Bob? intensity is just how it is.
Life keeps going. In one direction. And there’s not a damn thing we can do about it.
And really, our family is so fortunate. You don’t spend much time in the cancer fraternity without starting to thank the Good Lord for things you never thought it would be possible to be grateful for. So many have it so much worse. That’s always part of the thought process, this new, more acute awareness of suffering and trial that surrounds us. We don’t take any of it – our situation, our support, Payson’s progress – for granted. We know how lucky we have been.
So, with life just continuing on, with Leukemia just part of the fabric of our family, how in the world is it possible to sum up the 730 days since every single thing changed? How to possibly capture the excavation in our souls? How to express the journey?
Maybe just three things to try to capture the range of this seeming never-ending thing – (1) a super dark time, (2) a super bright time, and (3) the two most important lessons so far.
And also, this day we experienced right after he was diagnosed. Whoooboy, that was a day! RIP Deer.
(1) The dark time was in November of 2017. He was in a phase of treatment called Delayed Intensification. He was bald. He was pale. He was puffy. People would see him who hadn’t seen him in a while, and their breath would sort of catch in their throat. He was so weak that we setup a little hangout spot just inside our door where he’d collapse as soon as possible into pillows and blankets, where he didn’t have to go up any stairs to go throw up in the bathroom. And, even in the middle of throwing up, he’d be talking about what he was hungry for. His counts were non-existent. He had no immune system, by design. He had very frequent hospital trips for treatment, and home health visits most of the days that he didn’t go to the hospital. He battled the sticky stuff way too often.
One night during this phase he started to run a bit of a fever, which is a very not good thing. I remember just this uncontrollable need to just run away, to just disappear, shut everything down and bury myself away and just wake up whenever it was that Payson would be OK. I remember making my way outside as fast as I could, and just walking. Wandering. It was a bitter cold, clear night, and I remember watching my breath as I walked around the park by our house, stopping at random to look up at the stars and feeling their eternity. I remember the cold, totally unrelenting and scary and uncontrollable. I remember the weight of the helplessness, the feeling that nothing would ever be OK again, that we’d never know anything else but that exact point in time. I remember questioning why anything at all mattered, why anything in the whole world meant anything. That despair stuck around for awhile. I think I did a good job of hiding it. But it was tangible, and real, and I’ll never forget what it felt like, that night I was closer to darkness than I’ve ever been.
(2) The bright time was June 2, 2018. Payson’s baptism. His hair was back. His schwerve was back. His little hangout spot was long since abandoned. He had a hawtt little leisure suit. He still talked about his cravings all the time, but not while he was barfing. That day, he was surrounded by a giant group of the most loving people, people who had prayed and served countless times during the previous year. He approached it all with his usual uncanny mix of childlike awesomeness and grown-up wisdom. It felt like a milestone.
I remember the overwhelming feeling when it was time to confirm him and give him a blessing. I’ve never felt anything like it. The light in the room, the totally overpowering feeling of love and perspective, the undeniable peace, the strongest whisper of people that aren’t still with us, but are still totally with us. The brightness of that moment was the absolute answer to the darkness of the moment that night in the park. It was a new chapter, and a promise that, no matter what, no matter what, Payson was OK. Things were OK. We were going to be OK.
Finally, the two most important lessons so far:
The first most important lesson – People are the thing. They really are. The only thing. Our family has experienced this indescribable web of support and kindness and encouragement and love. Two years later, and it doesn’t stop. We are absolutely shamed by the goodness of so many.
People we’ve known and cherished always – old friends and best friends and family – have shown up for us, time after time after time.
People we haven’t known long have become part of our clan, permanently part of our souls. They are tangible evidence of God’s love for us.
And people we didn’t know at all before this whole thing started have become significant to us.
The people around us are the most important thing.
The other most important lesson – Hope! The absolute undying energy and life that exist in the concept and reality of hope.
Hope didn’t end on May 3, 2017. Hope began that day. Because without despair, there is no hope. Without fear and dread and questions and doubts and anger and helplessness and loneliness, without all of these fundamental things that are part of being a human, there is no hope. Hope is empty without all of its opposites. It only matters in opposition.
And because of hope, all of the opposites are OK. We control so little. We spend our lives on things that are so silly, so temporary. We worry about so much, but so little really matters.
There is hope. No matter what happens, no matter what, there is hope. And hope is enough.
Let’s kick this pig.
May 3, 2017
It was a sunny, beautiful Spring day. At about 8:00am, I was working on lights for Shrek Jr at CenterPoint Theatre. We were getting close to finished, I picked up my phone, and I had five missed calls and three texts from Wendy. The last text said:
“Please call me. This could be very serious.”
I called her, she was sobbing and asked me to come home. She sounded so pained. I asked her what was up, and she said let’s talk about it when you get here. And I asked again, “What is going on??”
“Payson might have leukemia. Come home.”
I don’t know how I stayed upright. I don’t know how I made my way to my van. I don’t know how I drove home. I do know that, in that two minute drive, I had Payson gone and buried and I was picking out cemeteries and funeral directors and who would speak at his funeral.
I got home and we collapsed into each other and we wailed for a while. She told me about her conversation with Payson’s doctor, this page of scribbled, frantic notes, the necessity of us going to Primary Children’s Medical Center immediately. She asked me to go get Payson at school.
It wasn’t a surprise that something was wrong with him. He’d had months of random pains, at different places all over his body. Muscles or ligaments or joints or something. The first time, we thought it was another kidney stone. Then, we thought it was a snowboarding injury. He had been to the doctor two other times. They thought maybe pleurisy, maybe arthritis? Wendy took him in on May 2nd because he couldn’t walk up the stairs anymore. He was pale and tired, but mostly he just hurt.
I remember walking into the office and asking them to page him down. I remember the mindless smalltalk, covering up everything with nothing. I remember seeing him in his backpack, carrying his lunch. I remember wanting to squeeze him and rewind everything and relive the almost seven years he’d been around. I remember walking out of the school, this beautiful Spring day, with this happy little kid who was almost done with first grade. I remember holding his hand, cherishing how it felt in mine, cherishing that he had such a great school to go to, wondering why I took that for granted. I remember him telling me about his day, wondering why he was getting checked out. I remember letting him sit in the front seat on the drive home (up yours, Leukemia!).
I remember our conversation with him at home, where we sat in the front room and told him we needed to go to the hospital so they could figure out what’s up, and how they were going to make him better, and could he please believe us so we could also believe us? I remember being overwhelmed by how strong Wendy was talking to him, how much love she had for him, how much that love seemed to overcome the impossible fear and weight of that moment.
On the way to PCMC, we, of course, stopped for Chicken McNuggets. This is what you do when you think your kid has cancer. It’s also what you do when you don’t think your kid has cancer.
I remember pulling into the parking garage, seeing spaces marked as for “Bone Marrow Transplant Patients Only,” wondering why that had never hit me so hard before. I remember walking in to that big, beautiful, terrifying, heartbreaking, hopeful building, and wondering how familiar we would become with it. I remember them telling us to go to “Hematology,” and Wendy being so offended that the clinic actually says “Cancer.” She’s like, that can’t be for us.
I remember the feeling in that little clinic, a little bald kid pressing the button to open the door and exit like he was way too familiar with the place. I remember going to a room with toys on the walls, trying to distract ourselves. I remember a parade of doctors and nurses, each of them unique and gentle and strong. I remember wondering why I was so desperate to trust them. I remember Dr Fluchel (who ended up being Payson’s main guy) coming in, checking things out, and asking Payson if he could feel his testicles.
I remember Payson’s reaction: “That’s kind of awkward, but ok!”
I remember being there a couple of hours, running labs on his blood, confirming that he had leukemia. I remember looking at Wendy and realizing our life just changed in ways we couldn’t even start to comprehend. I remember them telling us it was the good kind of leukemia, that treatments were very effective, that the outlook was possibly very good. I remember thinking how odd it was to be grateful for a better kind of cancer.
I remember needing to leave, to go tell our kids. I remember talking to Wendy for 90 seconds out in the main hall, hugging her, telling her everything she means to me, sharing the fear of having to tell our people about this, hoping that she understood how this unthinkable thing seemed OK because she was in it with me.
I remember getting to my van in the parking lot, sobbing for minutes and minutes, dreading the conversations that I’d be forced to have, the people I love whose lives I was going to add a burden to over the next few hours. I remember wondering if it was real.
I remember short conversations with my mom, with my dad, my siblings, my people. I remember apologizing to them, feeling so sorry for having to tell them this. I remember feeling the despair that the world was changing for other people, too.
I remember wondering how I could possibly tell my other kids about this, wondering what words were the right words. I remember wanting to fast forward three years, to see how they all were, to see how they’d borne this thing, to have some perspective that I could give them. Wondering if there was anything in the world I could do to shield them from this, to preserve their hearts, to avoid some of the hardest lessons of being alive. I remember gathering them around our kitchen table, telling them that Payson had leukemia. I remember their immediate reaction, the terror and fear and sadness. I remember the sound of the crying, just sitting there in a giant group hug in our kitchen, just clinging to them, the reasons life is so good, the answers to all of my doubts, I remember promising them things that I wasn’t sure of myself. I remember telling them that, no matter what, we are in this together, no matter what, and that’s all we can do. I remember telling them they are stronger than they realize, and they are going to learn it.
I remember them asking if we could say a prayer, and asking if we could go see Payson immediately.
I remember getting to the hospital, seeing Payson settle in so quickly, learning how to order room service and being amazed that he could have jello whenever he wanted.
I remember watching reality sink in for us, and realizing so early on that life never stops.
I remember leaving the hospital, being so not hungry yet feeling the carnal drive to go to Hire’s and consume all of my feelings. I remember sitting around the table there with my four oldest, sitting in silence, our imaginations running wild. I remember it taking forever for the freaking food to arrive. I remember starting to eat, starting to talk, starting to laugh. I remember missing Payson.
I remember getting home, laying in bed, texting with Wendy, being too tired to sleep. I remember, even then, this overwhelming feeling of peace, of gratitude.
I bargained with God 1,000 things that night. And I thanked him for as many things as I could remember. And I knew my life wouldn’t ever be what it was.
It’s difficult to believe that only a year has passed. It’s been impossibly long. I’ve spent a lifetime sitting outside, drinking TaB and smoking animals on the Traeger.
I’ve spent a zillion moments being overwhelmed and humbled and shamed and uplifted by the raw kindness around me. It’s impossible to be thankful enough for it all, for everything. The way we’ve been loved and cared for and shielded and sustained.
I’ve spent a million hours laying on the front lawn, looking up at our big maple tree.
I’ve spent a thousand nights watching my kids sleep, dreaming about their future, trying to make sure I’m getting it right. Our whole family got diagnosed with this thing, all of us placed into a category. We’ve done our best to not be defined by it, and in lots of ways I don’t think we’ve been aware enough of how other people see us because of this thing we are sharing. But, we are a family with cancer. Now let’s do something about it.
I’ve spent a hundred days worried about Payson’s temperature, about his blood counts, about how often he’s peeing, about how many times he’s barfed, about his weight, about his paleness, about the loss of his muscles, about his chubby cheeks, about his bald head, about the sores in his mouth, about his medicine, about his funny walk, about every single of the 70 zillion germs in the world.
I’ve spend every week cursing the Sticky Stuff and wanting it to take human form so I can huck a hatchet at its nether regions.
I’ve spent 52 Sundays, about half of them being angry or hurt or just plain pissy with my wife for no reason. I don’t know why Sundays have been so hard on us. Like, Sunday is supposed to be the best day, the gratitude day, the lovey-dovey half hour of quiet time after church heck yes day. But every Sunday, for some reason, either Wendy or I would wake up aching for a fight or craving to be left alone or just trapped in a glass cage of emotion, or whatever. We aren’t like that. We are never like that. And we’re so stupid that we’d never relate it to the fact that, you know, sometimes it’s hard when your kid is sick. So, we’ve gotten really good at talking about our feelings, way better than I ever wanted to. And, we’ve gotten so good at being grownups and not totally freaking out about super important things like why we don’t want to share our chicken strips sometimes.
I think I’ve learned something about compassion, about the kind of person I want to be.
I’ve learned about accepting help, even when it’s awkward and embarrassing and makes you feel weak.
I’ve learned about cherishing my people, about wanting to be my best for my best.
I’ve learned about how few things matter. So many things don’t matter. Almost everything doesn’t matter.
I’ve learned that the things that matter, they matter the most, and they always should and always will.
I’ve learned that we get to choose how we feel about the lessons we learn.
I’ve learned that even a fat man can put on 30 extra pounds by eating his feelings all the time.
I remember a few days after Payson was diagnosed, while he was still in the hospital with Wendy, I was home with the kids. It was early in the morning, still dark, and I couldn’t sleep. I remember sitting in our front room, mindlessly looking out the window, lost in the overwhelming sadness, totally unsure of the future. As I sat there, very lightly over the mountains, there was this outline of purple, almost imperceptible, but stunning. I watched as that purple became blue, as the blue started to become orange and red, as the sky above turned from black to gray to clear blue. And then suddenly, the sun rose, just the very top of it peaking over the mountains, and I was blinded by it’s brilliance. Immediately, everything was bright and clear. Everything that was dark was gone. I’ve never watched a sunrise like that.
I was so grateful the sun came up that day. And it keeps coming up. Every day for the last 365 and every day for the next four years until he’s out of the woods, and then every day after that. The sun keeps coming up.
Payson turns 8 in four days. He’s finishing up second grade, with the kids who missed him the first half of the year. He has crushes on girls. He plays with his older siblings’ friends. He’s the shortest boy in his grade, but he’s friends with the tallest. He does his chores. He’s in plays, he’s obsessed with basketball, he’s tan and he’s strong. He runs every day. He’s getting baptized on June 2nd, and every person in the world is invited to come celebrate with him.
In all of this, in everything that’s happened, this vortex of pain and heartache and fear, this overwhelming outpouring of pure love and kindness and humanity, in the middle of all of this is this little seven year old kid who is entirely unaware of what an inspiration he is, of the mountain of support that sustains his family, of what kind of lessons he teaches, what kind of hope he gives. He’s just him, doing his thing.
And the sun is up.
Let’s kick this pig.
Things dumber than apologizing for not blogging for awhile:
Things that help you get chicks:
1. Seersucker suits
2. Pink bow ties
Little man is doing great. He goes to school all the time, his hair is verdant (Spanish for green), he can read on like a second grade level even though he was only in first grade last year, he takes like a bakers dozen of pills every day, and he continues to just milk it all the time.
He’s had a couple of fevers – one that hit 103 at the hospital that freaked us out like the movie Contagion, and one that was just a slow burner that only freaked us out a little like the movie Coraline. Fevers are bad. But he continues to be amazingly healthy, particularly for a kid with a life threatening illness.
Also, we freaked the neighborhood out when the amazing people from the South Davis Fire Department came for a visit and let him check out the truck. Evidently, having a firetruck and two ambulances show up at your house with sirens and lights a blazing tends to raise concerns among neighbors when you have a kid with cancer, almost like maybe something is wrong and it’s not just rad people being kind. We are nothing if not thoughtful.
Life is pretty normal right now. There’s a few moments of concern and fear that remind us of what we are in the middle of, and there’s lots of moments of joy and love that make us wonder why we want to bite Payson’s face off because he’s so awesome. I hear that’s due to evolution. Doesn’t make sense to me, but, you know, science!
Speaking of science, this one time a few years ago we bought and consumed a Halloween Whopper from Burger King because we heard rumors about what the human body does to such things. And yes, green. Science!
But anyway, the point is that Payson’s cousin Whitney is home from her mission. For 18 months, she’s been giving ’em hell in South Korea, which is the Korea that’s obsessed with Hello Kitty, not the Korea that’s obsessed with gray military uniforms. She was over there selling religion from door-to-door when Payson got diagnosed, and she’s kept up on things through email and the spiritual and physical edification of the Let’s Kick This Pig blog.
Anyway, Whitney spoke about her mission in church today. Of course, we went, because we are Mormons who love meetings and also because they were offering free food like soup and hotdogs and lemon bars at their house and all we had to do was bring a tray of vegetables and we could eat as much as we wanted.
So anyway, the point is that Whitney slayed it today, and she quoted this scripture from the Good Book which reminded me that this scripture existed:
Phillippians 4:13: I can do all things through Christ who strengthens me.
Her point was that the scripture doesn’t promise that Jesus will take things away, will change our circumstances or our situation or our trials. But he will take our weak things away, change us, strengthen us so our trials make us who we are supposed to be.
I like that thought very much. I never want to forget the lessons, the challenges, and the strength of the last 10 months.
So, Sunday thought. Now go out there and eat a Whopper. For science!
Items On the Completed List
28 chemo treatments
19 home health visits
11 full knockouts
20 hours of battling the sticky stuff
100,000 hairs lost
5 trips on the stairs
0 full days of school
30 in-home visits from teachers
50 glorious puke sessions
3,000 hand washings
2,000 weenus bumps
1 million cravings
999,999 cravings satisfied
1 seven year old boy moving on to Maintenance
Items On the To Do List
Next is a phase called Maintenance. It lasts for 28 months. It will include daily chemo pills at home, some rounds of steroids at home, monthly visits to the hospital for treatments, quarterly back pokes at the hospital.
Life should start to return to some kind of normal. His energy should start to come back, so he can go to school all the time. His hair will grow back. His body might, like, put on some muscles or something. His parents will learn to say no again. He won’t sleep as much as he wants all the time. It’s almost like he’s going to be a teenager. We’ve already inquired about getting him some part time work at McDonald’s. He’s been a taker for seven and a half years now, it’s time to pull his own weight.
After Maintenance, right around his 10th birthday, he has two more years where he will still be evaluated on a regular basis. He’ll officially be out of the woods on his 12th birthday. Meaning that, at that point, he’s no more likely to get Leukemia again than anybody else.
So, 232 days in the woods so far. 1,593 more to go. Most of the 232 have been great days. Most of the 1,593 left will be the same.
Up yours, Leukemia.
There’s this amazingly cool guy named Collin Kartchner. He’s one of them Instagram celebrities. Not the celebrity Utah needs, but the celebrity it deserves right now, or something.
He’s like the raddest dude ever, and he’s got this huge social media following, and he doesn’t use this to schlep stuff and make fat stacks. He uses it to do kind things for other people, and he does this simply because he can.
So, he did this party/fundraiser for Little Man and Brooke and William (a couple other amazing cancer kids). It was a big old shinding with foods and games and gifts and Mormon cocktails and music and fun. As part of the leadup, he took Payson and Brooke on the old television with him to talk about it and allow Payson to flirt with afternoon news personalities at KUTV. It blew Pace’s mind.
The day of the actual party was a treatment day for Pace. It was actually a back poke day, so he got knocked out around noon, and the party was in the Utah County at 7:00. He slept the afternoon away, got in the old family truckster, and made his way down to party like a rock star. He ended up having some slight nausea at the party, by which I mean he barfed five times while he was there. But he lasted an hour, he met some amazing people, he was hooked up with some remarkably generous and meaningful gifts, and he felt a freaking tsunami of love from a bunch of strangers who chose to be nice to him, simply because they can.
It’s impossible to adequately thank Collin for this, just like it’s impossible to thank so so so many other people who have been kind to us, simply because they can. All we can do is feel unworthy but completely grateful, and look on in awe that so many get that Payson is worth it and worth everything. And we can pay it forward.
December 21st is the shortest day of the year, the day with the least amount of light. It marks the point in time when the light starts to return. For thousands of years, people celebrated it as the victory of the sun over the darkness. Christians took that tradition and added the advent of Christ to the celebration, the idea of light coming to the earth, the surety that light overcomes darkness.
Christmas means more to us this year. Light and hope and goodness and the idea that darkness will come, but light will follow darkness. Always always always. And, when the light returns, it will mean more because of the darkness.
Merry Christmas, everybody.
What It Can Become
Right now feels like a checkpoint in this whole experience that our family is sharing. We don’t celebrate, really. I don’t think you ever really celebrate with cancer, not until it’s totally over. You count days, you feel relief, but you never celebrate, because you never ever know what tomorrow is bringing. But right now feels like a checkpoint, a time to reflect on what’s happened and to gear up for what’s coming.
“It’s not about what it is, it’s about what it can become.” – Dr Seuss
I freaking love this quote. Like, I don’t think I really get it, it’s sort of like “if you can balance a tackhammer on your head, you will head off your foes with a balanced attack.” But I freaking love it, anyway. Like, nothing is what we think it is, it’s all just experience, and we make sense of it in retrospect. We create our stories not on what actually is, but what we choose to think about what is and how it fits in to what has been. We exist in narratives, and everything can become for us something so different than what we think it is in the moment.
Here’s what Leukemia has become for me:
- Watching suffering that I’d choose to endure 1,000 times before I’d want to watch Payson endure it once.
- Being taught toughness at a level that I didn’t think could possibly exist.
- Learning that the goodness of other people is staggering and boundless.
- Understanding the impossible, relentless weight of heavy things.
- Accepting the hard facts of life – that this whole thing is temporary, it’s indescribably hard sometimes, there aren’t satisfying answers to every question, and we control so little.
- Deepening everything I feel – good, bad, sucky, euphoric, joy, pain – all of it more meaningful.
- Embracing the reality that the most profound learning and growth are a result of opposition. There’s no other way.
- Refining my faith in God as a matter of hope and trust and faithfulness, and the idea that most prayers don’t change circumstances, but the best ones change us.
- Resolving to never be the same, to never be consumed by the meaningless drivel that has so often consumed my heart, to live with clarity and focus, to be the awesomest version of myself.
- Having two new heros:
On May 3, if you asked me what Leukemia is, I’d have said that it’s the worst thing that ever happened to us. If you ask me today what Leukemia has become, I’d say that it’s one of the best things that could have ever happened to us.
Life is about three things – what you experience, what you learn, and who you love. That’s all you take with you.
Well, we hope you all had a great Halloween!
I don’t know how Mormon Mommy Bloggers do it. They churn out fluffy content day after day after day, even when they have nothing to say. They can do 10,000 words on a conversation with a stranger in the Costco parking lot. I stand in awe. I can only imagine the guzzling of Mt Dew Black Label that must happen to fuel the fingers.
Me? It’s like, uh, writer’s block? Five weeks without an update on the blog? I’m sure the lives of so many have been empty without these decidedly non-pithy updates on a bald seven year old’s life.
But sometimes, it’s like, what else is there to say? If you’ve read this exceptionally wordy blog over the past months, you’ve kind of got the gist of the story. Payson has Leukemia. It totally sucks. He’s doing great. We’ve learned a zillion things. We are still doing our best to live. He’s in the final phase (Interim Maintenance) of this active treatment part of the journey. He has four more hospital visits, including today, November 30. As of January 4th, Lord willing, he’ll move on to the Maintenance phase of his treatment – less frequent visits, less shockingly low numbers of good stuff in his blood, back to school full time, back to being told “no” on a more regular basis, less nachos from Maverik. Payson is rad, his people are rad, the world is good even amidst the worst stuff.
However, it also feels like updating this blog is a necessary part of the journey, like sharing some details of the experience matters because so many people have shared the burden of the experience with us. So, confoundit, we are gonna keep updating this thing as long as this little person has to go to Primary Children’s Medical Center and get shot up with stuff to keep him living. And, since it’s been five weeks since the last update, this one’s probably gonna be a doozy. If you read all the way to the end, I salute you. You’re a more patient being than I.
So, I read A Christmas Carol every year. It’s the best. It’s probably less total words than this blog post, although some of them are pretty weird. I love it. I’ve got a couple quotes from it that I think are applicable to Payson and his crew right now:
“It is a fair, even-handed, noble adjustment of things, that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humour.”
I cannot look back on the last seven months with anything but gratitude. I know that’s so weird. I wouldn’t wish it on anyone, and I wouldn’t ever want to live any moment of it ever again, but it’s been an amazing time of refinement and growth and perspective. And among the weight and darkness, there have been so many moments and days of joy and all the best things. It’s the opposition that really teaches us, and the crappy stuff makes us more able to experience the good stuff fully.
And Payson has become this incredible little man, this mixture of perspective and experience and childhood and annoying and scared and remarkably wise. He’s the epitome of laughter and good humour in the face of adversity. He shames me with his toughness and his faith, his hard-won seven-year-old understanding that disease and sorrow do not define us. Keep your chin up. Work hard and do your best. Face your hard stuff, it’s ok to be scared and sorrowful, but don’t wallow in it. Life goes in one direction, and there is absolutely joy in the journey.
I look back through pictures to include in these posts, and I’m always overcome with the laughter and good humour I see in them. Makes me think that things, even hard things, aren’t as hard as we think when we are stuck in the middle of them.
“But you were always a good man of business, Jacob,’ faltered Scrooge, who now began to apply this to himself.
Business!’ cried the Ghost, wringing its hands again. “Mankind was my business; charity, mercy, forbearance, and benevolence, were, all, my business. The deals of my trade were but a drop of water in the comprehensive ocean of my business!”
We continue, seven months after diagnosis, to be overwhelmed by the charity of others. It’s the greatest blessing of this whole thing. It’s so easy to get caught up in business and all the stuff we worry and fret and wear ourselves out with – our business. And so little of it matters. Mankind is our business, which has been shown to us by so many.
Like, for example, lunches delivered on looooooong treatment days:
And pig kicking pictures designed by rad neighbors:
And audiences willing to watch Payson get labs taken to give him support:
And chocolate caramel pies:
And trick or treat deliveries:
And “Let’s Kick This Pig” signs hung in front windows:
And visits from new baby members of the clan:
And pigs, so many pigs:
“I have always thought of Christmas time, when it has come round, as a good time; a kind, forgiving, charitable time; the only time I know of, in the long calendar of the year, when men and women seem by one consent to open their shut-up hearts freely, and to think of people below them as if they really were fellow passengers to the grave…”
On November 6th, our friend and brother Scott Montgomery passed away. He was part of our family in a lot of ways. He died suddenly and peacefully, and we were wholly unprepared. His loss will be felt by all of us for a very long time.
Scott’s brother told me that Payson was one of Scott’s heroes, that Payson’s example was a source of hope and pride for him.
The whole experience of losing Scott is another hard lesson in a year full of them. We can’t quite make sense of it, we can’t quite believe he’s gone. And yet, even in the face of that great loss, there’s this fragile but unbreakable thread of hope, and this impossible to describe peace. Scott lived his life. He was an example of so many good things. There’s nothing that will fill in the hole that his passing left in the world.
The big lesson is that Leukemia, while scary and sucky and gross, isn’t the only thing in the world that’s scary and sucky and gross. There’s no guarantees for anything. And scary and sucky and gross is temporary, while mercy and love and joy are forever. But love your people today, like right now, because today, like right now, really is the only time you have.
We love you, Scott Montgomery. We will never forget.
And now, meaningless holiday stuff!
Halloween – Payson carved a pumpkin. His pumpkin carving skills are not what one would describe as “award winning.” However, the company was stellar, and the pumpkin seeds, while a total PITA to prepare, were super tasty.
We didn’t think he’d be up to trick or treating, but he ended up being jazzed about it, so we went out. He got seven full sizers in an hour of work. He chose a Snickers every time, which is totally ludicrous because everybody knows that a Snickers is the super healthiest of all of the candy bars and therefore partially gross. It’s basically a meal replacement bar. But he got seven, and, with his remaining energy, he came home and bartered with Bella’s friends like and Egyptian camel farmer. He ended up with eight full sizers. That’s a week of lunches.
The costume was Fester, because, you know, he’s bald. Most people thought he was a ghost or Voldemort, and to them we say, “get some culture, you mouth breathers.”
Thanksgiving – Pie breakfast with 20 pies and like a million of the best people who all dutifully washed their hands at the aggressive request of the Lady of the House and her loyal Farmboy.
Pace also went down’t the grand opening of the new Hale Center Theatre in Sandy, called the Taj Ma Hale.
Also, we spatchcocked a turkey on the smoker, which sounds and looks completely inappropriate, but I swear to you it’s worth the judgement of others and self shaming.
We also went and saw Wonder, which, whooooooooboy… That show totally wrecked the Lady of the House and her loyal Farmboy. I swear I never used to cry until this year, but I almost needed an IV of fluids after gushing like Iguacu falls for 90 minutes watching that show. Payson was unaffected, and had enough hydration left for a shot in front of a Christmas tree after the gig.
Christmas – We continued our Cyber Monday tradition of buying a Christmas tree and eating super healthy cancer fighting foods at Pace’s Dairy Ann. Yes, we still buy a live Christmas tree every year. We do this because we are not robots who have lost their humanity and are satisfied with the false affection offered by emotionally shallow metal and plastic fabrications of trees.
Payson created a lovely sunset (Chalk on Canvas, 2017) for his cousin Lydia. He also helped tie a bunch of blankets for Primary Children’s, which I think he did just because he thinks he might end up with one of them, but whatever.
Also, it’s almost time to go sing Christmas songs to members of the greatest generation. This was a Sunday morning rehearsal. These kids better not screw it up! We’ve got Christmas cheer to spread, Dammit!!! (sorry Wendy)
So, this rad guy Collin Kartchner, he has like a zillion Instagram followers, and he does kind things for other people just because he can, and he’s one of those people who you’re not sure you want to meet because you don’t want to be reminded how uncool you are in comparison. Anyway, Collin is doing this rad fundraiser for Payson and a couple other cancer kids on December 11, and he’s doing it because he’s kind and he can. It’s an incredible thing for a total stranger to do. You can see more details on Collin’s Instagram, if you so desire. And this is Payson doing his best Collin Kartchner.
And finally, do you see this fuzzy stuff right here? This is hair. Growing back in. On his head. Up yours, Leukemia!
Payson Dale Inkley was diagnosed with Leukemia on May 3, 2017. 169 days ago. He’s five and a half months into the first eight months of his treatment.
It’s been an unfathomably long, heavy road. It is absolutely impossible to describe what this experience has been for him, for his parents, for his siblings, for his family, for his friends. There’s a weight and a heaviness that’s undefinable and constant, and it hits harder and lingers more severely at random times. There’s also so many good days, and some moments that are breathtaking in their joy. Wendy said the other day that, in some strange way, this feels like a privilege. The suckiest privilege you can imagine, but still a privilege.
I was thinking this weekend about what I’ve learned from this thing. I think the single greatest thing has been a rediscovery of all the lessons I’ve ever learned, but with greater depth, more meaning, increased humility. I’ve never ever been lower than the past five and a half months. It’s not easy to be happy. This thing has changed the way I see the world, made it impossible to be carefree, forced more awareness of suffering and the relentless adversity that’s part of every life. But it’s also brought focus, clarity, commitment to living better. It’s deepened my ability to love. It’s also forced me to rethink my priorities, to stop caring about all of the absolutely meaningless stuff I used to fill my mind with. There’s so little that really matters. So little – the experiences you have, the things you learn, and the people you love. And that’s it.
Payson has shamed us all with how he lives through this. He teaches me every single freaking day, and I couldn’t possibly find the words to say all the good things I think about him. He’s always been special, unique, everybody’s favorite kid that’s not their own kid. Maybe the clearest thing I can say about how I feel about him is that he’s worth it. The unrelenting treatments, the mile long parade of medicines, the threat of the unknown, the sadness of watching suffering, the unspoken feelings of unfairness, the uncountable prayers, the tsunami of kindness, the thousands of sincere cheerleaders, the boundless charity, every single cent that people have contributed, he’s worth it. It strikes me sometimes that 30 years ago, or someplace in the world even today, he probably wouldn’t be with us. I will never take the people I love for granted, never again ever.
The rest of this post is just going to be about Delayed Intensification so far, the short term plan, and the longer term plan. It’ll be essentially the Franklin Day Planner of Payson’s treatment. Sharpen the saw.
So, he’s five and a half months through the first eight months. He’s a little more than halfway through Delayed Intensification, which, as a phase, sucks as much as the movie Hocus Pocus. In the past four weeks, he’s had days where four hour naps were the norm, where going outside was a chore, where mouth sores forced him to take controlled substances to be able to eat, where pains in his back and legs prompted calls to the hospital. It’s been an adventure. Again, never a complaint, he just does his thing, not always with a smile, but rarely with a frown, and never with a complaint.
Last weekend, he had four treatment days in a row – one at the hospital, and then three at home. For those treatments, we decided to keep his port accessed, meaning that the Sticky Stuff stayed on his body for four days while he had tubes hanging down from his port. He walked around for those four days like Quasimodo. He also didn’t really want to turn his head, so to look to the side he’d turn from the waist like Batman. So, Batman Quasimodo for four days, which, come to think of it, would kill as a Halloween costume.
This weekend, he’s got four more straight treatments, all at home, if things go well. The first was today, then every day through Sunday. We decided to not keep him accessed for these treatments, because Batman Quasimodo, while awesome for one night of trick-or-treating, is no way to live. So he’s gotta be brave to get accessed and deaccessed four days in a row.
After that his FINAL TREATMENT OF DELAYED INTENSIFICATION is scheduled for November 6. After that, he has five treatments over two months during the last phase of this part of treatment, called Interim Maintenance. Of course, everything is subject to change, as always, because you just never know and if there’s one thing Leukemia thinks is that he’s the boss of everything and there’s not a damn thing we can do about it. So, plans could change, but that’s where we’re at right now. And also, up yours, Leukemia.
After the final phase, there will be an assessment of some sort, and then a plan will be finalized for the next period of treatment, called Maintenance. This will last about 28 months – the phase, not the assessment. There will be daily pills, steroids sometimes (yay for peanut butter edamame!), monthly visits to the hospital for chemo and checkups, and quarterly back pokes with the full knockout treatment to make sure Pace stays humble.
During Maintenance, life should resume some kind of normalcy, other than, you know, cancer. His hair will grow back, he might be able to run without looking like Gumby, his body will remember how to grow muscles, he will go back to school, his parents will remember how to say “No” to him, and he’ll stop getting all kinds of sweet hookups all the time. He’ll be a normal kid again.
Our approach to his treatment has always been to take it as it comes. The doctors and nurses are amazing at giving us as much information as we can handle, enough to help him through things, but never so much that we end up at the State Liquor Store, buying our weight in 80 proof libations. Or whatever you’d say if you knew what you were talking about when it comes to liquor. I’m not much of a drinker. Yet.
So, Wendy does thoughtful things like encourages Payson to write in his journal. She’s weird like that. Soooooooooo irrational. I mean, he has cancer. Even healthy kids don’t want to write in their journals.
But anyway, here’s what he had to say today about how he’s doing. (Water spot courtesy of his dad, who has terrible fine motor skills. However, in my defense I was trying to do the dishes. Trying.)
He also went a talked to the Viewmont Girls Soccer team this week, as part of their retreat before they just dominate in the state playoffs. They wanted a super Hawtt bald person, and Britney Spears circa 2007 wasn’t available, so Pace was the guy. This was his whole message:
“Do your best and don’t give up.”
And one other thing. He drew this thing with chalk for his aunt Michie. He’s super proud. Regular Einstein, or one of those other famous artists.
Delayed Intensification sucks. Mouth sores and tiredness and bad numbers and such. But in the midst of it, he’s the same unspeakably awesome kid just being a kid and doing so much more than just getting through things. So many great days, and every day is a day closer!
Up yours, Leukemia!
This is what Delayed Intensification looks like:
And it looks like this when you’re having some pretty spicy unhappiness about getting your port accessed, so your dad says if you can do it without crying at all and staying totally calm he’ll buy you anything in the world, thinking you’ll choose nachos from Maverik and instead you choose a giant freaking teddy bear at Costco:
So many great things, even in a low point of this whole treatment. A couple of hard things – some pain in his legs that freaked us out a little but is no big deal, a tiny fever that made us react like his brain had fallen out of his head, and lots of shakiness and steroid-fueled spaziness. Probably no school for the next four weeks or so, his numbers are expected to be pretty low, and he will feel weak. But every day is another day.
So much good, too.
Wendy wrote this on the Facebook and Instagram today. It’s perfect:
“We rarely get to go back and relive a phase in life. But I feel like this phase of chemo has given me a second chance at the phase where you take naps with tired little ones and don’t get much on the to do list done in a day. This time around I have a different perspective. I’ve learned so much having raised my kids to this point. I miss the days where I don’t leave the house and we bake pumpkin chocolate chip cookies together. I wouldn’t wish cancer on anyone but I think I can say that in some ways what we are going through is SO good. So sweet. So deep. I love my people differently now. We are five months into a fight the Inkley’s didn’t want and wouldn’t trade what we’ve gotten for anything. We have a family creed and one of the lines says Inkley’s stay to the end. It can mean lots of things like staying to help clean up after a party or staying to the very end of a football game. But we are staying to the end of this experience with cancer. Together. And -today- we love it.”
Guys, don’t get cancer. But if you do, make sure Wendy Elmer Inkley is your mom. She makes everything ok, even Delayed Intensification.
A year and a half ago, Payson was in a production of The Pirate Queen down’t the Hale Centre Theatre. To describe it as an amazing experience is the understatement of the century. Because of that and his super sultry looks, the Hale folks asked Pace to come and be the model for a Christmas Carol for their 2017 Christmas show. He’d be the face of Tiny Tim that people would see on signs and playbills and, if he was really lucky, the side of a bus.
So, last summer, he went in, put on some raggedy clothes that were actually much nicer than anything in his closet, wrapped his leg with a splint and grabbed a little crutch, and then modeled the heck out of it. It was 15 minutes of sass and pouty and sickly but plucky child, and then he ate some crackers and cheeses, and blew outta there. Somebody asked him how it went, and his only reply was, “50 bucks!!!”
Well, because of that we started chatting about maybe the whole Inkley clan going out for the Christmas Carol show this year and doing our best to not embarrass the family. And then Pace got diagnosed and plans changed and we thought no more of it. We’d get excited texts every so often from people who’d see his face on the banner hanging in the Hale lobby, and that was it.
Well, now Christmas is getting closer, the Christmas Carol has been cast, and it’s gonna start rehearsing, and we’re seeing his face more. It’s a little tender, because we were gonna try to do this show together, and we can’t. A reminder of some of the costs of dealing with Leukemia. Regardless, we are blessed, just some unexpected things remind us of where we’re at.
Then last week, Wendy had this thought about how Payson is Tiny Tim right now. A happy, irresistible kid who is a light for lots of people, who teaches by his attitude and resilience and endurance in the face of enormous challenge, and who is getting through things because of the generosity and charity of the people around him. It reminded me of two quotes from Christmas Carol:
“It is a fair, even-handed, noble adjustment of things, that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good humour.”
“Mankind was my business; charity, mercy, forbearance, and benevolence, were, all, my business. The deals of my trade were but a drop of water in the comprehensive ocean of my business!”
So, we’re so happy that, in a small but super appropriate way, he’s the face of this show with this message in this exciting time for so many people connected to the Hale and their first Christmas in their new digs. Someday, we’ll all do that show together. But for now, we’ve got our own Tiny Tim to chill with at home.
God Bless Us, Everyone!
Back in the day like four months ago, if you would have asked us what’s the hardest part of having Leukemia for Payson himself, we probably would have guessed it would be the hair loss or the weakness or the roid rage or the one or two evenings of endless barfing or the weekly visits to the hospital or the limiting of some activities or the tiredness or just not being a normal kid for awhile. But that’s not the worst part, not for Payson.
The worst part is the Sticky Stuff. Satan’s Saliva. El Escupir Del Diablo. Les Crucher du Diable. Or something.
See, he’s got this port under the skin on his chest, just below his right collarbone. He likes it because it makes him look like he has five nipples. And also it allows them to take blood from it or to give medicine through it, and it essentially bypasses the need to get an IV inserted every single visit – it’s like a permanent IV. It’s saved him so much heartache and pain, but everytime they access his port to take blood or give medicine, they cover it with a sheet of the Sticky Stuff. They do this, I believe, because they are in league with some immoral supervillian who draws his life force from the tears of young cancer people, and also maybe partly because it prevents infection.
So, they use the Sticky Stuff all the time, and evidently it not only prevents infection, but also every molecule of it adheres to your skin cells, kind of like Lipsense or perhaps a tatoo given by an artist with a very heavy hand. So, having it removed is as simple and painless a process as an early western settler being scalped by Native Americans.
We’ve tried many things to remove the discomfort of having the Sticky Stuff removed – lotions, liniments, pure spring water, really expensive sprays, the sweat of fairies, a fifth of whiskey, even, in our furthest extremity, the advice of some Doterrorists. We’ve consulted nurses, doctors, other cancer people, well meaning know-it-all acquaintances, the Dalai Lama, and, even with that accumulation of human wisdom, we couldn’t ever seem to get it right.
No matter what, it ended up being Payson’s worst part of having cancer. He’d go in for a treatment visit, they’d inject his body with as much ridiculously strong radioactive medicine as he could tolerate, it would make him weak and sick, and the only thing that he worried about was getting the Sticky Stuff off.
The amazing people at PCMC are so awesome with him, and they make sure that, in all of his treatment, he’s involved. The end of every treatment day was 40 minutes of him crying and stressing and trying to be brave as he took off the Sticky Stuff himself, without much help, because that’s what he wanted. It just kept getting worse, his fear and dread of the Sticky Stuff. And all of these remedies we tried didn’t seem to help, and even the smell of them would make him gag like Lloyd Christmas when he found out Harry was dating Mary Swanson. So, Pace would fight through it, because what the hell else can you do?, and his mom would watch the whole damn thing and get so frustrated she’d want to punch an entire herd of Circus Clowns, and then he’d leave even the smoothest treatment day feeling a little bit beaten down, and then the countdown in his head would start to his next encounter with the Sticky Stuff.
So, last visit, his third in seven days, Wendy reached “to hell with it” phase, which is a very dangerous phase to reach for someone with a bachelor’s degree in Recreation Management and Youth Leadership. We brainstormed and plotted and came up with some super innovative ideas. The night before treatment, we called Payson into our bedroom, and we briefed him on our three-pronged battle plan:
- Coconut Oil
- A well-placed mirror
- An extravagant $3 shopping spree at Dollar Tree if the Sticky Stuff was removed within 10 minutes
He evaluated our plan, took a moment to consider, and then said he’d be OK with it if it was $5 instead of $3. The Art of the Deal.
So, next day, before the Sticky Stuff was adhered like molten lava to a parched landscape, Wendy applied enough Coconut Oil to his skin to lube up Dwayne Johnson at a bodybuilding competition. At Sticky Stuff removal time, the Child Life specialist provided a super reflective mirror so Payson could better see what he was doing as he broke the chemical bond between his body and the Sticky Stuff, Wendy continued to apply Coconut Oil like she was trying to hydrate a beached whale with salt water, and the siren song of lead paint-infused plastic products from Dollar Tree focused Payson’s rage against the Devil’s Spit.
And, nine minutes and zero tears later, victory!!!
Turns out, Coconut Oil isn’t just for pretentious cross-fitters to put on their cauliflower toast for breakfast.
The celebratory visit to Dollar Tree resulted in a golden skeleton head, some hardened candy corn flavored cotton candy, a pair of foam shackles, a hacky sack, and cinnamon scented air freshener. And, of course, the celebratory feast was nachos from Maverik. To the victor go the spoils.
Up yours, Sticky Stuff. Up yours, Leukemia.
This is how Payson dressed after church today. It has nothing to do with anything other than to say that he pretty much always dresses in some, uh, creative ways, and his accessorizing rarely has a grand overall theme or guiding vision. Today, he’s in a beach hat, a pineapple polo, jeans, and blue camouflage rubber boots with no socks. I guess maybe, Florida, we are with you, or something?
So anyway, our family does plays. We do these plays because we are desperately starved for attention and we base our own sense of self worth on what other people think of us while we stand up there and dance around and sing our faces off. It’s very important.
Payson, as a member of our family, also does plays. He does them because his parents are desperately starved for attention and also if he didn’t do plays then how could he possibly ever become a famous star of the silver screen and acquire such wealth that his parents could own several Mediterranean islands?
So, his most recent play was Seussical. Seussical is a very popular musical based on the famous children’s books of, as you would guess, JK Rowling. Payson played such popular Rowling characters as The Grinch, The Man from the Circus, and Han Solo.
He was in Seussical with Wally, Mac, Bella, and like 100 other kids from the CenterPoint Academy. The CenterPoint Academy is located at CenterPoint Theatre in Centerville, and Wendy and I help out running the thing because we like bossing people around. And also, because we have a key to the soda machine.
Anyway, once a year we throw a big shindig hootenanny of a show where all these rad Academy students get to rehearse all summer and then put on a big show on the Main Stage at CenterPoint. After they rehearse all summer, then they get the stage for one week to add all the lights, sound, costumes, sets, and then perform the thing. In one week. It’s totally insane and we’d stop doing it in a Chinese second if it wasn’t so awesome.
So, Pace spent his Labor Day at an eight hour tech rehearsal on the stage where Pace learned a bunch of new stuff and Pace’s dad somehow cut his own forehead with a vacuum cleaner. I swear I am not making this up.
Then the next two days were rehearsal days after school, Thursday was a treatment day, and Payson performed two shows on Friday night and two on Saturday morning.
Going into this whole thing, we were super concerned, yea, even skeptical, that this would all work for Pace with the current stage of his treatment. We were thinking it might be too much, that he’d be too tired, that his immune system would be too fragile. But, in true Inkley fashion, we ended up carefully weighing all of the evidence, taking the counsel of dedicated medical professionals, and throwing up our hands and shouting, “To hell with it. He will be OK!”
He handled the whole thing like a champ, he felt great when he needed to feel great, he changed blocking and choreography so, instead of holding hands as he’s been intensively trained not to do (seriously, if you see him, please don’t touch his freaking hands for any reason because you have cooties ok thanks) he touched his elbows to people instead. He calls this a weenus touch, and we don’t stop him for saying this, mainly because it’s hilarious.
So, the summer worked out, rehearsals worked out, tech week and performances worked out, and our plans for him remain intact – to eventually earn so much money in acting that people will hate him for no reason at all.
His Director for Seussical was our good friend Kate Rufener. She’s got a way with kids and a way with words and a blog to prove it. Take a second to read what she said about the summer, working with Pace and our other kids. She’s smart:
So anyway, Seussical was a win. Such a win. We keep trying to make sure he’s got as normal a life as possible through all this crapola, and this felt like a really awesome normal kid thing.
The doctors told us from the beginning that they can cure the cancer, but how the kid turns out is up to us. A billion zillion thanks to Kate and a dozen other amazing people for giving Payson something this summer to help him turn out alright.
Up yours, Leukemia.
Well, here we are. Delayed Intensification. Two days after Payson was diagnosed, a couple of doctors came into his room, and they had business on their mind. You could tell they had business on their mind, because they sidled into the room like very debonair ninjas, silent walking, yet smiling, intent on befriending you before slicing you open with their medical knowledge. After the somewhat awkward chit chat that consisted mainly of talking about Payson’s bowels, they got to the main event.
DELAYED INTENSIFICATION???? That sounds bad. Like something they try to slip in during the side effects portion of a Cialis ad. Immediately, immediately, I thought, I don’t like the sound of Delayed Intensification.
Wendy thinks it sounds like something from Tomorrowland at Disneyland, only if Disneyland was run by Jack Kevorkian. “Ladies and Gentlemen, welcome to Delayed Intensification! Please keep your arms, hands, and feet inside the vehicle for as long as you remain conscious…”
I think Delayed Intensification sounds maybe like something to do with a super excited 22 year old Mormon guy going on his honeymoon, without realizing how much time he’ll spend the first year of his marriage just hugging his wife in silence for hours on end while she sobs into his shoulder about some fatal error he didn’t realize he made.
Also, Delayed Intensification has the same initials as Danny Inkley. DI. The only other thing that also shares our initials is Deseret Industries. I’m not sure what the three of us have in common, but I’m thinking it has something to do with rashes.
So anyway, we haven’t really looked forward to Delayed Intensification. Doctors and Nurses and parents who’ve been through this have sort of generally referred to how things get a little harder in “other phases,” but they never really like to say which phase by name. It’s like the Voldemort phase of Leukemia treatments.
So with it being “a little harder” but “undefined,” we sort of used our “imaginations” to conjure up “worst case scenarios,” such as “Payson” becoming a “vampire” and eating our neighbor’s “cats” underneath a “full moon” while listening to “Celine Dion” and drinking “coffee.” An imagination can only take so much horror.
Well, here we are, DI, and the actual stuff we need to worry about seems a little less scary but totally and completely sucky – tiredness, lethargy, lack of motivation, a general distrust of the world and everything in it. All of these things describe Payson’s dad on most days when there’s not football on TV, so it’s like, OK.
Oh, and maybe, also, maybe just “a little nausea.”
That’s what we heard at the first DI treatment today – maybe “a little nausea.”
“No problem,” we thought. “We have a Taco Bell close, and we are no stranger to the Crunchwrap Supreme, so ‘a little nausea’ is right in our wheelhouse.”
However, have you ever heard of something called the Gallon Challenge? The Gallon Challenge is an age-old tradition practiced by Mormon missionaries on P-Day and other super bored people with nothing else to do, wherein an otherwise healthy person chugs a gallon of milk and then inevitably spews the gallon of milk out of every orifice in their head like a Play Doh Doctor Drill ‘N Fill. The healthy person must chug the milk within a 30 minute window, and then keep it within the confines of their own digestive tract for 60 minutes.
It’s impossible to accomplish. I mean, I’ve heard tell that some humans have been able to complete the Challenge, but I don’t believe it, unless they have four stomachs like a cow, which I think would technically make them not really a human anymore, but I’m no Bill Nye.
Anyway, virtually every non-bovine person who has attempted the Gallon Challenge can tell you in detail what it would feel like to swallow a handful of those dinosaur sponges that you used to take into the bathtub with you, and then have them activated inside your stomach. The milk expands like Oprah during her off phases. It’s uncontainable, like Taylor Swift’s new single, and the projectile nature of the partially curdled milk pouring from the head of a fellow healthy human is super exciting for even the most hardened of super bored Mormon missionaries.
Anyway, the point is, that since Payson has been home from his first DI treatment this morning, it’s become clear that part of his chemo today involved chugging a gallon of milk. He’s barfing so much I think he might create a new orifice somewhere on his head in order to relieve pressure. That might be cool, but it’s not really one of the side effects that we thought were included in “a little nausea.” But you live and learn!
Also during his treatment today, they knocked him full out again to treat his spine. They call it a Lumbar Puncture, which is another term I’m pretty sure they just made up. I sincerely believe that the nurses aren’t actually treating him while he’s under, but they are just tired of the flirting and tired of courtesy laughing. Why else would a rational person possibly need to knock out a seven year old kid nine times in four months?
Treatment from here on during DI is weekly for the next two months, except for this week he gets an extra treatment on Monday because the nurses don’t think he’ll be able to come up with a bunch of pickup lines in the span of four days, so they’ll be safe.
So, Thursdays are treatment days for the next eight weeks, but it’s all count dependent, so they take his blood a day before and make sure he’s up to it. If not, they delay him a week, and he has another seven days to Google “How can I get my cute nurse’s phone number?”
During this phase, he gets like five medicines, but I think the highlight is a new medicine that sounds like “Datsun Bluebird.” This fun new medicine is a red liquid that turns his pee red and may damage his heart. I’m not sure which of those is worse.
He also gets reacquainted with Asparaginase (which is known as the Asparagus of Cancer Fighting Medicines) and Dexamethasone (which is a steroid that makes him look like he’s a 65 year old retired public accountant with white orthotic shoes and a timeshare in Boca Raton). These two medicines are so great, so familiar, so much fun to have around, that nurses call them “Peg” and “Dex.” Awesome nicknames. Peg and Dex. Sound like a couple of old pals, right, Peg and Dex? A couple of people you want to go bowling with, a couple of folks that you take on trips with you because of their harmonies around the campfire, a couple of salt of the earth gems that don’t mind if you accidentally break wind in the car.
So, DI. Peg, Dex and the gang. Projectile vomiting like the chick in Pitch Perfect. Sleep patterns like a sloth in the summer. Here we are.
As we’ve watched these freaking hurricanes do unthinkable damage, it’s made me think a little of this DI thing. We’ve dreaded it since we knew about it, there’s nothing we can do to stop it, we’ve prepared as much as we can for it to hit, and we’re going to do our best to endure it. These massive hurricanes form far away, they move along at a ground speed of like 18 mph, other people rally to help, they intensify and threaten and bring totally impossible damage, and there’s not a damn thing you can do about it except endure.
I’ve never been in a hurricane, but I figure they hit, they leave a permanent mark, and somehow you’re better for having been through it. There’s always always always light on the other side and, someday, ocean breezes lazily blowing over a beach in paradise.
Prayers to all the people impacted by the hurricane. Let’s Kick This Pig.