Category: Payson

I do so many fantastic things as a father that it’s difficult for me to pick a favorite, such as:

• Laying around on various couches while researching my Fantasy Football team and eating Cheez Balls for hours on end
• Acting like I’m super helpful when I clear my own dinner plate
• Letting my kids pick the Netflix show they want to watch if I have absolutely no intention of staying awake
• Encouraging my kids to go outside when playtime gets a little loud, “so Mom can rest” and, “so Dad can avoid taking a sledgehammer to a large mirror in frustration.”
• Nodding meaningfully while Wendy’s helping them through the stress of homework and while I’m lost in thought figuring out what to eat for lunch tomorrow
• Turning the music in the car up so loud that I stop all possible threat of the children hurting their vocal cords while having fun, or communicating, or even looking at each other, so help me…

Anyway, so many fantastic things, but I think one of my favorites is Back to School Interviews. Every year around the time school starts, we ask our kids the same list of questions. The list doesn’t change much at all. The same questions, every year – What’s your name, What’s your favorite book, Who’s your hero, What are you afraid of, and so forth.

We do this because we like inventing traditions for absolutely no reason but upon which our children will place great meaning in their adult lives, and also because, when our children leave the house, we intend to splice all of their responses together for all of those years and ask them, in all honesty, how come they aren’t as cute and engaging anymore as they were when they were five?

Really, we love these things. Watching the change in them year over year is really fun, and gives us some idea about their progress, whatever that means!

So, without further ado, and for super funzees, here is Payson’s Back to School Interview from a few days ago, followed by his Back to School Interview from last year. 

 

Such a change.  So much unexpected from year to year. Same room, same kid, 12 months and 12,000 lessons apart.

I look at the bottom one and I see silliness and energy and a big fat bow tie and a kid who has the world on a string, and I look at the top one and I see the same kid, the same fun, the same zest for it all, mixed with a little more life experience and wisdom.  There aren’t a lot of seven year olds like that kid on top.

Little man, big world.

Can’t wait to see what he says in the 2018 version.

 

Bon Jovi. Scholar. Visionary. Wearer of Tight Pants. Describer of life. 

It felt like summer might last forever, like a Bette Midler concert or something. But here we are. Halfway there.

Pace is halfway done with the first eight months. Livin’ on a Prayer. Jon Freaking Bon Jovi. 

Induction-check. 

Consolidation-check. 

Interim Maintenance-check. 

Next comes the hauntingly named Delayed Intensification, which I feel like also describes eating bad Mexican food. Delayed Intensification, the phase of treatment, starts the first of September and will last two months. He will get treatment every week. He will get labs drawn every week the day before treatment. There will be times when his immune system won’t, you know, exist. He goes back on steroids, which before made him look like a recovering gambler living in government housing somewhere in New Jersey. He’s gonna be tired. And we are going back to treating everyone who comes within an acre of Payson like they have Mad Cow disease. We are sure there’s lots of good days coming, too. But we know there will be some sucky ones. Delayed Intensification. What can you do?

His treatment on Thursday last went swimmingly. Wendy took some pictures of the home health visit the day before. Or, more precisely, she had someone else do it while shewas busy being smothered on the couch while he was being worked on. The ultimate security blanket. And notice the mask – it’s because he doesn’t like the smell. Having first hand knowledge of the smells that don’t faze him emanating from two teenage brothers, I can only imagine the horrors of the odors of heparin and saline.

Treatment day at the hospital was good. Doctors and their ilk continue to be very positive about how he’s responded so far.  Payson also continues to try to keep all of his options open among the single female nurses on staff, wink wink nudge nudge. 

Wendy did a timelapse of getting the sticky stuff off this time. I hate the sticky stuff. If hating the sticky stuff was people, I’d be CHINA!

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Because it was the last treatment of Interim Maintenance, or perhaps to see what the human body is actually capable of enduring, or perhaps as a cruel joke, they sort of doubled his medicines. All part of the plan, I guess.  Other than the slight touch of nausea that sent barf cascading out of every orifice in his head, and two days of walking around with eyelids so droopy he looked like Sly Stallone, it went really quite well. He’s had so much energy and health this summer that it’s been a little easy to forget that Leukemia, in fact, sucks.  Good reminder for a day or two there. 

Up yours, Leukemia. 

He’s great now. School starts Wednesday. He’s going, at least for a couple weeks. It makes us so freaking happy that he’s well enough to start school. 

So Viktor Frankl, other than needing to buy a vowel for his last name, was pretty much perfect. He said this:

When we are no longer able to change a situation – we are challenged to change ourselves. 

What a fantastic thought. 

Something about being in the middle of deep water draws awareness out of you – awareness of fierce people around you who are doing their own pig kicking. We are constantly learning about people who surround us who are in the middle of their own adversity, in the middle of unchangeable situations, learning lessons like we are, lessons tailored just for them. 

What a blessing it is to be forced to change. We don’t like Leukemia, we don’t like counting days, we don’t like the fear of the unknown or the uphill road we are walking, but what a profound blessing it is to be challenged to change ourselves. Such depth and understanding and wisdom and patience and perspective to be gained when we have to. 

Godspeed to all of you out there doing your thing, being challenged to change yourselves. Keep on trucking.

We continue to experience the benefit of remarkable charity in the freaking rock stars that comprise Payson’s village. Not a single day goes by without an act of kindness from somebody. Four months in, and we’ve been absolutely full immersion baptized by love – new people who’ve shown up for us in stunning ways, the closest friends who make things feel ok just by being around, and the best, kindest, most generous families since 1950s sitcoms. Every day. Thank you. 

So, it’s been a great summer. An amazing summer. A summer we will never forget and a summer we would never choose to have again, but a summer we will be grateful for always. 

A couple things from the end of summer. Payson went boating with his best friend. 

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He also opened a savings account. I was shocked at how many shekels he had saved up. And I asked him for a loan. And he turned me down. Typical. 

And he had the cousins all nighter, which is a tradition that happens every summer wherein the cousins all try to stay up all night to prove that they can be unmanageably lazy and raunchy for three days thereafter. This is a tradition that needs to die as quickly as Bill Cosby’s reputation. 

And then he went boating with more friends, and then crashed like the average American’s belief in their political leaders. 

Summer-check. 

OH, WE’RE HALFWAY THERE…

PS. Payson’s having an auction. You’ve probably heard. If you haven’t, check it out and spread it around like a farmer spreading manure. Or something. 

Payson’s Auction Info and Stuff

The Good: Pace had an awesome visit for his treatment on Monday. Really good numbers, Doctor was very encouraged with how Pace is responding to treatment, and there was a visit from a therapy dog. 

The Bad: He also got knocked out cold again, either because he was sassing his mother or because they had to stick a needle in his back to treat his spinal fluid. But he woke up fast!  Which, I don’t know, I think I’d prefer to stay out cold awhile, but Wendy was excited he was up so quick. But she’s a morning person. 

The Other Bad: His snaggly, nasty, graying front tooth still ain’t coming out, even with encouragement through boredom at the hospital. 

The Ugly: The sticky stuff. It’s the worst. You could literally bind a wing to a 767 with the sticky stuff. It took 40 minutes to take off this time. It’s pretty much like if you dipped both hands in gorilla glue and then pressed them together really hard for five minutes, and then wrapped them in a roll of duct tape, and then tried to gently separate them. It’s the worst. 

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The Good News: Pace has one more treatment this phase, and then he gets two weeks off, and then he’s officially halfway done with this weekly visit stuff. Just four more months. Of course, the last four months have been so long it’s like watching Ghandi all day every day, but progress!

The Better News: Brigham got home after almost a month away. 

The Best News: PAYSON GETS TO GO TO SCHOOL!!

School starts August 23. His numbers are great. He gets to go. Word. 

There will be times in the next phase, frighteningly called Delayed Intensification, that are gonna totally suck. Just totally. We are expecting this. He won’t go to school those times, and the remarkable people at his school are gonna help teach him at home when needed.  However, in those times that only moderately suck and in those times that are actually pretty freaking good, Pace will be in school. 

This is fantastic news for lots of reasons, but two seem most important. The first is that Payson is in Chinese immersion in school. Half of every single school day he is taught in Chinese by a teacher from China. Believe it or not, this is slightly difficult to replicate at home, mostly because we don’t speak Chinese, and we are not from China. I have been to China a couple times, but my only takeaway was I’m grateful for Pepto Bismol. 

So the only way we know how to immerse Payson in Chinese outside of school is to go to Panda Express, and that’s one of the worst things to which you can expose someone with a compromised immune system, second only to the music of Bette Middler. 

Anyway, Payson going back to school will keep him immersed, which is great news because then he can come home and act like he’s better than us when we try to help with homework and also ridicule us incessantly when we try to pronounce the name of his teacher. Blessings!

The second, more important reason we are happy about Payson going back to school is because he needs it. Back several decades ago when he was diagnosed, one of the first things we were told is that they know how to treat Leukemia, his health is gonna be fine, but how’s he going to come out of this as a human being?

We’ve thought so much about that.  What’s this experience going to teach him about himself, about life?  Will he become selfish and entitled, which is totally natural when everybody you meet cherishes you like they should cherish everybody they love?  Will he get lazy, learn ways to shirk responsibility, and use not feeling well as an excuse?  Will he be better or worse because of this?

It’s such a tricky thing, one of the reasons we feel like first time parents. Like, sometimes he really doesn’t feel well. Sometimes, getting carried up the stairs is the only way to get him upstairs. Sometimes he watches the siblings do their chores from the couch. 

But we think that maybe one of the reasons he’s doing well in his treatments is because his life is pretty normal. He’s had, for a bald kid, a pretty normal summer. He’s just living his life, a normal kid, every day. We know he’s feeling good because this is how he acts doing chores:

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He’s the youngest, so he’s always spoiled, but it feels good to tell him no. It feels so good to tell him no, just like normal. Weird. 
So anyway, school feels like normal. It will hopefully continue this idea for him that this is life, and there aren’t any special rules. Garbage happens, sticky stuff is sticky, and that doesn’t mean you get to call timeout. Keep on trucking.

Payson isn’t special. I mean, he’s remarkably special, but he isn’t special. This nonsense can happen to anyone. Having a disease like this doesn’t make him special, and we don’t want him to think he’s special because of Leukemia. 

Just like the rest of us, his character isnt formed in the ugly freaking sticky stuff moments or even in this broader pig kicking adventure. His character is formed in the choices he makes every single day.  So what he learns and becomes through this thing, through normal every day experience and choice, now that can make him special. 

In other news, I think the count for acts of kindness and charity we’ve received is somewhere in the zillions. We are surrounded by the best people in the history of humans. True to that, our amazing friend Holly is putting on an online auction for Payson on August 24th and 25th.  She also bought Payson an amazing collection of pigs to kick:

All the auction stuff will be listed on Instagram (@letsauctionthispig) and people will bid using their phones. She’s got about 40 items lined up so far, but she’d love to have 100 or infinity or whatever.  She’s looking for products and services and gift cards and vestibules and domiciles and accoutrements – really anything at all that people might want to bid on. So, if you’ve got something you want to donate, word up. Or if you’ve know businesses or whatever who might want to donate, word up.

Get in touch with Holly at hreid@cptutah.org if you’ve got the sweet hookups. 

There’s a page about the auction on this very website doohickey here: https://letskickthispig.com/auction/

As always, it’s weird asking for help. Meh. Thank you for the remarkable support and love we continue to receive every day. 

And finally, I think Payson is discovering the true joys of baldness – having women attracted to your head, as a canvas, a beacon, a scratchpad, whatever. Attention is attention. 

And also, hairpieces. 

Well, we are still doing this thing. Kicking pigs and such. I swear the whole history of the Universe could have occurred between May 3 and today. May 3 was so long ago there were cro-magnon families in our neighborhood back then.  But we are still doing this thing. 

Payson is three treatments through his five total treatments during Interim Maintenance. He’s 59 days into his treatment. Things have gone pretty much according to plan. 

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For this phase of treatment, he gets blood taken and tested the day before his actual treatments, to make sure his body can tolerate what they are gonna shoot him up with. Home health. Home is where the health is. Home health is not just for your grandma anymore. And for some reason, when I hear “home health” I think of tasty white breads. 

But anyway, last week his labs from the home health visit were low. When I say low, I mean his immune system was suppressed. He was “neutropenic,” which is Greek for “super duper Hawtt but unable to fight off even the mildest of infections without outlandishly expensive hospital stays.”  So they delayed his treatment two days. He went in Friday, and his numbers were back up, he was “unneutropenic,” which is Greek for “word I just made up,” so he got the full chemo special – vincristine and methotrexate out the wazoo. Or in the wazoo. Whatever. Took it like a champ, as always. 

Next treatment is on August 7th. It’s a lumbar puncture (back poke) day, so they’ll put him under and treat his spinal fluid with medicine again. This will be the eigtth time he will be put all the way under in the last 60 days. They keep treating and testing his spinal fluid because Leukemia sometimes shows up there and the medicine he takes orally or gets through his Iron Man port doesn’t reach there. So they keep putting him under. Like masters of the Vulcan neck pinch. 

He’s still taking all of this like a total rock star, maybe even like Meatloaf or something. But, full disclosure, he’s learning that it’s not fun. This weighs on him more than I realize. He’s tough and resilient and amazing, but we are starting to see it wear on him. He woke up sad on treatment day. He understands what’s coming at appointments and there’s parts he dreads. If he told us more of what he thinks, I’m guessing he’d be wondering why so much of this, why for so long, especially when he feels pretty good.

So, it’s the Dog Days right now. The treatments aren’t bad. He’s not tired. He’s a pretty normal seven year old. Sure, he’s weak, and he’s slow, and he walks funny. He hasn’t spent a single night away from home, other than in the hospital, all summer long. He’s not a glowing specimen or childhood vigor, but he’s doing ok. And every day is another day done, another step forward.

This all reminds me of the old Sunday School lesson about forgiveness, where you hold something not heavy out in front of you with one hand, and for a while you don’t even feel it. And then it starts to get uncomfortable. And after a few minutes you break into a sweat and your whole body hurts and it’s excruciatingly and you start to wonder why the hell you go to Sunday School anyway. I think it’s a little like that. Very few overwhelmingly hard days. Like, cancer itself bites the big one, this whole thing sucks, but individual days, individual treatments, individual challenges, even the super sticky stuff they have to put on his skin, nothing is too hard. 

But it’s all so freaking hard.

Thing is, there’s not a damn thing you can do about it. Like, once Payson was diagnosed, this was the road. This is it. You want a healthy kid again? Here’s the road. Walk it. 

But thinking in reverse and living in envy of other people and other kids and other summers is totally stupid. Like the philosopher Jerry Sloan said, “You can’t play the game backwards.”  I’m sure when he said it there were at least two offensive punctuations included, but you get the drift. 

This is one of my favorite quotes, by Richard L Evans:

Life moves in one direction only – and each day we are faced with an actual set of circumstances, not with what might have been, not with what we might have done, but with what is, and with where we are now- and from this point we must proceed; not from where we were, not from where we wish we were – but from where we are.

So, you walk the road. It’s heavy, it feels eternal, and there’s absolutely no end in sight. Just keep going, even though it’s heavy, because what else can you do?  And you add to that weight an increased sensitivity to the people around you who are struggling, and an authentic empathy that’s earned only through real adversity, and a fear of new words like neutropenia and old words like fever, and you end up with the longest summer in the history of humans. Such lessons, so terribly unwanted but so appreciated. 

So anyway, here’s Payson when Mac wanted to lick whipped cream off his head:

And here he is partying on Pioneer Day at Snowbird, enjoying the Alpine Slide and the Bungee Trampoline just like our Mormon pioneer ancestors:

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And here he is ripping down the bowling alley slip ‘n slide:​​

​And chilling with besties:

And schlepping shave ice to vulnerable neighbors who don’t understand how healthy he is:

And schmoozing Bella on her birthday:

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And with that, my training is complete. I’ve now officially become a Mormon Mommy Blogger. A bunch of pictures with a on sentence description. It’s over. Put a fork in me. I can already feel your attention waning like when you try to read a novel by Charles Dickens. I’m sorry. I’ll do better. 

It’s the Dog Days. 

This is the worst part of every treatment:

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They have to put the stickiest substance known to mankind on his skin, over the port access, every time he gets treatment. They do this because, I don’t know, they don’t want him bleeding all over everything and they actually want the chemo medicine to go inside his body. They’re such downers sometimes. 

It’s not all sunshine and roses, this Leukemia, but even at the worst part of every visit, you can see what kind of kid this is. Teflon. Like, imagine your least favorite part of going to the doctor – the mammogram, the jellyfinger, the string of brutally honest insults – then imagine having that looming over you every week. That’s Payson with this sticky stuff. And he does it every week. Stud. 

He also has pretty weak muscles still, like he takes stairs real slow, pushes on his thighs as he ascends each step. He’s started walking with a little bit of dropfoot, which is a madeup name for some side effect of the vincristine medicine he’s getting where his Achilles tendon tightens up and his heels don’t touch the ground. So he ends up walking like the lady in those Prancersize videos, which isn’t all bad. 

They want us to keep after him and help him stretch out his Achilles and walk on his heels and all kinds of stuff. It sort of reminds me of the physical therapy I had after I had ACL reconstruction in my knee, and now my leg bends like the hind leg of a giraffe, so I don’t know what to think. 

Another fun side effect of the vincristine is that it effects his fine motor skills some, so it takes him as long to button a shirt as it would take me if my hands were on fire and I was wearing boxing gloves. At first, as usual, I got snippy with him because holy cow you’ve been obsessed with buttons since you were six months old so why in the name of Dr Seuss is it taking you a fortnight to button your shirt and please focus and stop being a moron. And, yet again, the doctor says this is part of his treatment and I am the world’s most stupidest dad.  Good thing kids are resilient. 

Also this week, the home health nurse didn’t have the stuff to access his port at home, because why would a home health nurse have the implements to effectively administer home health? So, Payson got blood drawn the old fashioned way – whiskey and leeches. Or maybe a needle, I don’t know, because he freaked out so much that he created a vortex of memory loss and shame. In any case, because he gave blood like a soldier, he was rewarded with a swimming night at Layton Surf & Swim. 

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You see, his immune system numbers  are pretty good, but we really wanted to put them to the test, see what kind of extreme threats he is capable of fighting, so what better place than the Layton Surf & Swim, the swimming pool equivalent of licking 600 other people’s iPhone screens. But, to ward off infection, he did dress like aquatic George Mcfly, and it worked. No infections. Also, no dates. Shocking. 

Pace also went to Get Air indoor trampoline park, which is where you go in 2017 if you are nostalgic for the odor of a bowling alley in 1984. Brigham actually took Pace on a man date there, just the two of them, and he couldn’t figure out why everybody was staring. Like, why in the world would the average person be staring at two bald kids all alone at a trampoline park?  It sort of sounds like a major fail for the Make a Wish people. Regardless, Payson had a blast working on his sweet ninja moves. 

Also, in perhaps the best news of the week, Payson painted Wendy’s fingernails. We have no idea why, but out of the blue he requested the pleasure of using his innate beautician skills on his mother. And, wow, is he good. Wendy’s nails are stunning, like the Before picture in a nail fungus cream commercial. 

In the worst news of the week, Wendy took Payson and the crew to Chik-fil-A for “Trade Your Dignity for a Free Chicken Sandwich Day,” wherein he dressed up like a cow and waited in an hour long line with a bunch of other cheapskates in heifer attire in exchange for a $3 sandwich. Yay. 

And finally, his hair has started to grow back. But not all the follicles, more like maybe one in 50. If we let his hair grow out now, he’d look like when one of the kids gets surprised or scared in a Charlie Brown cartoon. So, we are now shaving our mostly bald kid’s head to keep him bald. Thankfully, I guess, medicines in future weeks will cause his hair to fall out again. It’s the little things that count!

And, for the sappy end, some thoughts about the maple tree in our front yard. It’s a remarkable tree. It wasn’t planted by anyone. There’s a park five doors down with trees like this, and one spring about 10 years ago a seed ended up in the yard and planted itself, and now it’s this amazing, beautiful, frisbee-eating, shade-intensive tree. 

I’ve laid under this tree maybe 30 times in the past 10 weeks, just looking up and appreciating how it grows, the number of leaves, the remarkable idea that it all came from a single seed that planted itself not long ago. 

It reminds me of how full this planet is of goodness, how rich and deep and beautiful nature is. How much our very existence is blessed and how much we are sustained without any effort on our part. 

It also reminds me that no matter what I worry about, no matter what I stress about, no matter the bitterness of worst case scenarios that I create in my imagination, there’s just some things I can’t control. And, whatever comes, trees like this are gonna keep growing, and the sun is going to keep coming up, and I’m going to be changed by watching the toughness and resilience and indescribable wonder of a seven year old bald kid with cancer. 

Hippies have some stuff right. 

Interim Maintenance is not just something you do to your car every 15,000 miles. It’s also something you do when your body just craves medicines with pretty names like Vincristine or robot sounding names like Methotrexate every 10 days.

Treatment day was good. In fact, according to Payson, it was the best treatment day ever. He said that with a little too much excitement maybe, but at this point we are just looking for  wins, quality be damned. 

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His next treatment is in 10 days. During this Interim Maintenance phase, the treatments are count dependent, sort of like old Sesame Street episodes. So, we will have home health people out the day before each treatment to lecture us about saturated fats and to take his labs. They don’t expect his counts to be down necessarily, but every treatment escalates and they won’t give him the next one if he’s low. 

Also, in non-hospital related news, we went up to Silver Lake in Brighton on Sunday, along with approximately two-thirds of the population of the State of Utah. It was lovely, in a crowded way. 

After that, Payson attempted his first sleepover with cousins since he started treatment. He came home about 11:30pm, after having suffered the indignity of trying to sleep in a 1984 Tioga RV. I don’t blame him for his offense at this garish lack of class on the part of my sister’s family. 

Really, though, he’s never come home from a sleepover before, never had a problem with it. He really likes his mom right now. We all do. But I was proud of him for even trying. 

Also, due to all of the cravings and the unending supply of curly fries, Payson finally ripped through the bed of our old tramp. So we swapped it out for one we found on KSL Classifieds for $100. Super trustworthy, and it’s got the big springs, so you get a LOT more air with this one. It’s almost like we can’t get enough of the hospital! We welcome injuries!  We love painful dislocations and rust poisoning! We have no fear!  We maxed out our deductible weeks ago!

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Also, yesterday we celebrated Indecision Day here in America, a centuries old tradition wherein we honor the legacy of Ben Franklin and his seeming total inability to decide on an appropriate hairstyle. Like seriously was he bald? Was he growing out the backend for Locks of Love? Make a decision, dude.  Known as “The Father of the Mullet,” Franklin’s legacy lives on, adorning the heads of countless Americans in areas of the country where the chewing tobacco industry still thrives. 

On Indecision day morning, Payson had the awesome experience of going to a parade, wherein he sat for 90 minutes in 90 degree heat to watch a three mile long caravan of dance studios and dentists throw a few dozen pieces of saltwater taffy. Yay for that. 

Afterwards, we smoked some meats, lit some fireworks, and busted some glow sticks. I think we’ve got a spicy mixture of repressed feelings and pyromaniacs in Centerville, because our neighborhood felt like the Battle of Antietam. 

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In the immortal words of Orrin Hatch, the first United States senator constructed entirely of vulcanized rubber and recycled metals, “America rocks!  It’s totally cool!”

Finally, I am happy to report that, on his fourth fishing outing of the year, Payson finally caught some fish. Actual fish. Real, stinky, slimy fish. Seven of them. 

The reasons for his success are:

1. His father wasn’t there,
2. He actually used a hook and viable bait, wherein on two previous outings he either didn’t have an actual hook or he was using Powerbait that had the consistency of powdered Tang. 
3. His Uncle Rod was there, and he knows what the hell he’s doing. 
4. Because his Uncle Rod smells like fish. 

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Summertime is summertime, even when you’re kicking pigs. 

Day 55 since Payson was diagnosed with Acute Lymphoblastic Leukemia.

I remember on that day, as we were sitting in Exam Room 9, after the doctors came in and confirmed that Pace had cancer, they left, and we were alone – me and Wendy and Pace – and I told Wendy that our life just changed.  And it did.  Our life changed on May 3, 2017, and it will never be the same.

Every single day since has been heavy.  Every one.  However, there are glimpses of joy all the time, there’s days that are mostly sunshine, there’s lots of just life as usual.  And there are days that are the worst of my life, made even worse by the realization that I can’t even really identify why they’re so dark, so full of despair .  Leukemia sucks.  It just does.

So, while our life changed forever on May 3, 2017, it didn’t stop.  I remember on May 4, 2017, I woke up and was sitting on the couch in our front room, crying to myself and trying to make sense of things, and the sun came up.  There wasn’t anything special about that sunrise, no unique beauty or anything, but it’s the best sunrise I’ve ever seen.

Life continues on, and you go on with the rest of the world, negotiating each day, being more careful in what you say, more sincere in your relationships, less severe in how you judge others, broken in some unhealable way but also unbreakable in a very delicate way.  And all the time, through the darkness and worry and uncertainty, you learn new depths of love and new appreciation for compassion and new hope.  You learn authenticity.  You learn to value what’s valuable and wash away what’s not.

And you also talk about bodily functions waaaaayyyyyy more than is appropriate, but whatevs.

So now, we watch people that we love struggle with things, and it gives us perspective. For as serious as Payson’s deal is, there’s so much else out there that’s full of darkness and despair.  There are no comparisons, but we’ve all got stuff.  Everybody.  Perspective isn’t about saying you’ve got it better or worse than other people, it’s about saying you’ve got your stuff and you’re damned sure to be equal to it and you’re going to do your best to help other people be equal to their stuff too. 

Three things matter – the people you love, the experiences you have, and the knowledge you gain.  And that’s it.

So, up yours, Leukemia, but thanks for the unspeakably essential lessons for the 55 most recent days and the countless ones to come. 

Thanks, You Blowhard, But What About Payson?

Payson is so good.  He’s the happiest person in our house almost all the time.  He’s unfazed and he has sparkly eyes.  The last few weeks have been so good for him – so much energy, so many fun things, so many kind people continuing to provide so much support.  He’s been a pretty close to normal 7 year old for the last bit, and I love this little bald man so much that sometimes I swear I’m smothered by it. 

During the last week, he went and saw Brigham in a show, worked a friend over in Ice Cool, successfully begged another friend to make his favorite dessert, performed a show at summer camp, took a passing interest in the bills that have started rolling in, started trying to earn money by selling visitors gumbleballs from his gumball machine, flirted with girls 10 years older than him, and got his dance moves back. And he also went to Lagoon-a-Beach, which is a touch-and-go proposition for even the hardiest human, but we thought the promise of a tiny bit of summer fun was worth the surety of the resulting severe undercarriage rash and explosive diarrhea. Yay summer!

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Because people keep asking, here’s an update on Payson’s treatment so far and what we expect going forward if things continue to go well.

On Day 1, Payson started an active treatment schedule that looks like this:

Induction (1 month)

Consolidation (1 month)

Interim Maintenance (2 months)

Delayed Intensification (2 months)

Interim Maintenance (2 months)

So, he’s finished with Induction and Consolidation.  He’s through 2 months of an 8 month schedule with frequent hospital visits and chemotherapy.  So far, it’s been a visit every week.  For Interim Maintenance, starting next Wednesday, he will have visits every 10 days or so.  Five treatments, 50 days.  They expect his energy levels and immune system to be pretty good for a lot of this phase.

From what we understand, Delayed Intensification will be pretty intense, somewhat like Induction during the first month.  And then the last Interim Maintenance should be somewhat similar to these next two months.

After that, he’ll have pills he continues to take on the daily, and something like monthly visits to the hospital.  That will last until three years from his treatment starting, or May 4, 2020.  Then less frequent visits, less pills, until he’s officially free and clear at five years after treatment starting, or May 4, 2022.

Typing this all out sucks, but also, thank God and science for a treatment schedule that creates such promising outcomes.

Treatments start again next week, and we’ll go on giving updates here.

Also, we think our friends have questions that we never quite get around to answering, so we want to do a Mailbag blog, where we will answer the questions we know the answers to and make up the answers to the rest.

If there’s some question you have about this whole thing, or about my physique and exercise tips, you’re welcome to text it to me (801-859-7799) and we’ll answer it. No question is too stupid, other than the seriously stupid ones.  We feel like the more questions we can answer, the better for everybody to be more informed about this sucky thing, and the less we’ll have to answer in our super boring way when we run into you at WalMart!

Lots of uphill path ahead.  Thanks for sticking with us, for kicking with us.

Yo! Another visit today. For the fourth week in a row, they knocked him out, because momma said knock him out. After four straight weeks, he’s about had it with being cold cocked so they can stick needles in his spine. He’s ready for something else. 

Which is good, because he’s moving on to something else!  Well, technically he has six more days of Consolidation, but no more treatments. So, today is Day 49 of treatment, day 21 of Consolidation, but it’s getting as confusing as the Mayan calendar to keep track of. 

Next week is a week off. I don’t know what we will do with such freedom, but it probably will involve sitting around and also eating food. Maybe get the mail. Text some people. Make meat helmets. Luge lessons. And what was I saying?

Oh, yes, so on to Interim Maintenance, which sounds like something I need to do with my chest hair every so often. Next treatment is two weeks from today, and then Interim Maintenance lasts two months. Treatments will be 10 days apart in this phase, and all of the treatments are count dependent. So he will get labs taken at home the day before each treatment and they’ll make sure his body has recovered enough from the previous treatment to get injected with more Spidey serum or whatever the heck they call it. 

They expect his counts to be pretty good with the treatment schedule he’s on and how he’s responding. He should also be pretty good energy wise and immune wise and also smartass wise (sorry Wendy). He’s also looking forward to not only flirting with the nurses on treatment days, but also with home health nurses when they come to draw labs. We don’t have the heart to tell him everybody is getting paid to be nice to him. 

So, today Wendy took some video of the Treatment Day Experience, which is, at some point, probably going to be the name of an exhibit at a casino in Las Vegas. It’s so hard to know what to share, and what not to. We don’t want to make anybody sad, or hork your groove at all. But we also want to share this experience as much as we can, because then it’s less scary, more understood. But if you don’t wanna watch the video, don’t. You’re still our friend, as long as you keep giving us presents at Christmas. There’s nothing crazy or graphic at all, it’s just a day at the hospital. 

We did take out a couple of parts where he’s most sad. Nothing crazy, it’s just hard days up there. He’s amazing and resilient and worth it to the max. Also, he accidentally put on Bella’s pig kicking shirt today, so there’s some cleavage here. 

The care he gets at PCMC is remarkable. Every single person up there deserves a kiss on the face, yea, even on the mouth part of the face. And your love and support and unwavering and seemingly boundless kindness continues to lift us up far beyond what we deserve or could possibly expect. 

Every day is an eternity, and one day closer to the start of a new chapter. ​​

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Up yours, Leukemia!

A dad thinks one of his jobs is to teach his kids to be tough. For a long time, I thought I was failing with Payson.  This story and these pictures are from when he was four.

Like, he’s always been everybody’s favorite kid, other than their own kids. He’s charming and so content and as chill as Spicoli, and I can count on one hand the number of times I’ve been truly annoyed with him, which any parent can tell you is unheard of because one of the main jobs a kid has is to sometimes annoy his parents at every single freaking opportunity until they are ready to sell him to gypsies.

But, Payson wasn’t tough, at least not the way I wanted him to be. He wasn’t aggressive. He wasn’t even assertive. He wasn’t demanding. He’d never fight for toys in nursery. He’d let kids walk all over him. He was the kindest, most generous soccer player in human history. Even when he was madder than a hornet, he’d just kind of wilt in silence, never scream or hit or bite or punch. He’d cry and have trouble expressing why, and he never wanted to let me down. But he wasn’t tough.

So, I thought I wasn’t helping him, I thought the kids at school were gonna eat him up, I thought he was gonna be overwhelmed by the cruelty of the world and maybe go and live in a pacifist commune built in a giant redwood, or something.

Around the time, my sister had a foster kid named Armando. Cute kid. Thick skull. Mouth like a Greek sailor. I have no idea what Mondo had been through, but he had some scars.

We liked him, but I really wanted Payson to have just a little more Mondo in him. Mondo walked all over him like a new bride’s mother in law – took the best toys, the best snacks, whatever he wanted. And Payson never stood up to him. Not once. And I worried that I wasn’t teaching him to be tough, that the world was for kids like Mondo to get what they wanted, while kids like Payson became prey. Lord of the Flies, or something.

Well, one day at the zoo, it all came to a head. It was a hot day. So freaking hot. Lots of flesh out that day. Human flesh. Sunburned, glistening human flesh. Long lines at the drinking fountains. Close quarters in the reptile house <dry heave>.  It smelled like sweaty giraffe undercarriage everywhere. A perfect zoo day!

Well, Payson in his charming way had requisitioned some cotton candy, and Mondo wanted it, and for the first time Payson stood up to him and tried to keep it, so Mondo gave him the business and a big old slap and claimed the cotton candy like he was Vazco de Gama or something.

Payson came to me with tears, and I told him dad things – you don’t start fights but you can finish them, the best thing to do to a bully is bully them, somebody punches you and you have a green light, here’s an exhaustive list of submission holds – you know, tough guy stuff.

So, I told him to go back to Mondo and get his cotton candy back and take care of the problem once and for all. Punch him, push him, berate him, give him a nuclear wedgie, whatever was needed. I felt like Vito Corleone. Tough guy training out the wazoo.

I turned my head to brag to the other people there about my super tough advice, and I turned back to see that Payson had gone over to Mondo, given him his hat because Mondo was hot, and was sharing a water bottle with him and asking if the cotton candy could be both of theirs. Then they walked arm in arm the rest of the day, and Mondo never gave him another moment of the business.

It’s one of the best lessons I’ve ever been taught as a dad.

So I stopped worrying about making Payson tough. He had something else so much more real, so much more true, something I strive to have and fail miserably.

Payson will never be a Hollywood tough guy. He will never dominate at soccer. He will never take something from somebody that he wants, just because he wants it. Other kids will never cower in his presence. This is not who Payson is. But I wouldn’t trade him for the entire cast of The Expendables.

And now I watch what Payson does every day with this stupid Leukemia treatment, and he shames me with his toughness. Every single day. He’s in the middle of chemotherapy, he goes to the hospital every single week, he gets prodded and poked and analyzed, he gets the stickiest substance on earth stuck to his skin and ripped off, he’s shaky, he’s weak, he doesn’t feel great, like ever, he’s inside when kids like him shouldn’t be, he’s always tired, he sleeps like a hibernating bear, he takes pills like a Melaleuca distributor, he’s lost his hair, he’s got an instagut, and HE NEVER, EVER EVER COMPLAINS. EVER. It’s just not who he is. He does his work, he keeps moving, and he remains totally defiant of changing or wilting or shrinking in the slightest.

Payson’s not a tough guy, but he’s the toughest guy I know.

So far, the letskickthispig.com experience has had male-centric authorship. Gross. I sit and write the blog and sort through pictures and Pinterest while Wendy operates power tools and eats rare roast beef and passes gas proudly. It’s our life, don’t judge. 

But today, Wendy wrote the blog. She doesn’t think she’s funny like me. The thing is, writing this thing it’s like real life where I try really hard and I’m zany and wacky and people get sick of me in three minutes, but they spend 30 seconds with Wendy and her authenticity and total awesomeness about every single thing makes them want to be her friend for eternity. 

Or something. Anyway, here’s Wendy’s play-by-play of today:

Today was treatment day. 

How does treatment day go these phase two days? Well, today I went in and Payson was asleep on the floor using my nice blanket. Huh. Then he wakes up to four siblings heading down to breakfast where he is served a nice helping of apple juice and chemo meds. Yay!

 

No food since he will be under anesthesia for a lumbar puncture. We put numbing cream on his port site an hour before his appointment so that he can handle the needle they’ll access his heart with. Cover that dollop with plastic wrap and throw on the Team Payson Tee. Then he has to take his last sip of clear liquids before we head out. 

Today we had a fun surprise on the way to Primary Children’s. My brother, Payson’s uncle Rod, works at the Utah state capitol as a K-9 bomb officer. Yesterday, as he and aunt Heidi brought us dinner, we mentioned that we pass his work site every procedure day. So he arranged to be outside training his dog at the time we would pass. What a surprise for Payson! Love you bro!

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Arriving at Primary Children’s we get to tell the parking attendant that we are here for oncology. Even as the word comes out of my mouth I can’t believe that’s what I’m saying. Oncology. 

We head to the fourth floor Hematology/Oncology clinic or Hemonc as we regulars call it. Sign in, sit down and help distract Payson so he doesn’t psych himself out about the nurses having to access his port when they call his name. 

Port access. This sounds kind of space age but it’s just putting a needle attached to tubing that allows them to take his weekly labs and administer any drugs needed for the day without having to get an IV each week. He will have it inside his body the next three years. It’s great. And terrible. Terrible because needles are scary and the tape they use to keep it secure is his nemesis. He hates sticky stuff so much. But they accessed him today with little whimpering and we were off to the next room. 

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Meeting with the doctor. We headed to room 8 where we have the coolest wall toy. Each room has wall toys and we’ve decided room 8’s is the best. A soccer game on the wall. We wait long enough for him to figure out how to have the goalie save the shots. I’m so proud. They tell us how his labs look which is quite awesome. Red blood counts are still a little low but apparently those are the slowest of the blood parts to perk back up after the blow of Leukemia. 

Today we had to address some pain he has been having. They were concerned enough after pressing on his belly to order an X-ray and, since he has had kidney stones, they also tell him to pee in a cup. Lucky! 

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Procedure time. After he sings to the clinic nurses at their request- we head down to the first floor for the x ray and lumbar puncture. 

X-ray was no biggie but it was causing us to cut it close for our 12:30 appointment with the lumbar puncture folks. So we talk about anesthesia as we walk. Payson requests they administer the sleepy drug slowly so it doesn’t hurt his throat. I love that he takes charge of his care-stud. She agrees to that request and we head in. They let me stay right next to him each time until he has fallen asleep. Today he is talking aloud right before he zonks out. He says it is starting to hurt his throat so she slows down. He goes quiet and then, in a high-pitched dreamy voice he says “Thank You!” And immediately his head falls off the blue doughnut pillow onto the bed letting us know he is OUT! We all died laughing. 

I now have 15 to 30 minutes to eat, or go to the pharmacy or to sit and chill in the lobby. Today I ran across the bridge the the University hospital cafeteria to hug a friend, but that’s another story. 

Time to wake up. Payson took a little longer waking up today for whatever reason. He wakes up hungry for salty crackers. He eats like 20. He also gets whatever he wants to drink. I guess they feel bad for making them fast until 2 in the afternoon. All for a good cause, right?! Then we are wheeled out to the car. But instead, today we head back up to see what the doc says about the x ray and cup of pee. Basically he needs to poop more. TMI? Payson probably thinks so. Sorry Payson. We are just glad he doesn’t have another kidney stone. Phew. 

Port de-access time. This has become the hardest part. Remember he hates sticky stuff!? He has what must be the most sensitive skin in the world. The nurse even tells me he is getting little abrasions today as he pulls up the “sensitive skin” version of the sticky pad edges. So this is going to really hurt. It did. And he wants to pull it off himself so it was like 40 minutes of shaky, tiny hands trying to pull off a clear plastic sheet that wants to be a permanent part of his chest. IT WAS NOT FUN. Then the nurses apologize that it was so rough and promise to brainstorm how to make it easier next time. We love those girls. 

Home here we come! He sleeps most of the ride home and for the next two hours on the couch. I love him so much it hurts! 

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That’s treatment day.

Not a whole lot of Payson-specific stuff here, just some thoughts about hope and faith and love and some pictures from our Saturday road trip yesterday, always within 75 minutes of the hospital. We learned that lesson. 

We are religious people. Some don’t think we know a buttload of crap about the gospel, but we do. Wendy and I met while we were on our missions, and she, like most women, couldn’t keep her hands off me. 

Anyway, church is a fundamental part of who we are and our family culture. It’s a constant in our lives. During church throughout my life, I’ve wondered sometimes as I’ve heard other people’s challenges and experiences, how I would respond when heavy things come. Will I be true, will I be strong, will I realize new things, will I find that I’ve been wrong, that what I base my life on doesn’t sustain me in the most important, most character defining times? At the moment of greatest need, what will I be?

So, it’s been revealing dealing with a situation like Payson’s, and the impact it’s had on our connection to spiritual things. It feels like the depth of this trial has also demanded us to be more deep and sincere in our souls. What I find is that so much that seemed important or occupied my attention before is now so irrelevant, and my focus, of necessity, is really on the most basic fundamentals of what I say I believe – faith, hope, and love. These are the things that matter, the only things that matter. 

And the Good Lord, as he does, puts people in our way to teach us and remind us and encourage us of these fundamental things. I have three examples of this – one each about faith, hope, and love. 

First, about faith, a couple of weeks ago someone so close to our heats sent us a text with a scripture from Corinthians. I think about it every day, always with more depth, more understanding, hopefully more maturity, and more commitment to be true, no matter the outcome:

“We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed;”

Second, about hope, my sister sent us the lyrics to How Firm a Foundation after a meeting she went to where it lit her up. I love this song, Ive always loved it and I love it more now. It’s a slobberknocker of a hymn that’s kind of become our spiritual anthem. Here’s three of the verses:

When through the deep waters I call thee to go,

The rivers of sorrow shall not overflow;

For I will be with thee thy trouble to bless,

And sanctify to thee thy deepest distress.
When through fiery trials thy pathway shall lie,

My grace, all-sufficient, shall be thy supply;

The flame shall not harm thee; I only design

Thy dross to consume and thy gold to refine.
The soul that on Jesus doth lean for repose,

I will not, I will not, desert to his foes;

That soul, though all hell should endeavor to shake,

I’ll never, no never, no never forsake.

And third, about love. During the past six weeks,  we’ve had some really good days and lots of mixed bag days and some days that just suck like everything ever sung by Bette Midler. Well, Friday was one of those Bette Midler days. And Saturday morning we woke up to this Facebook message from a friend, which was the answer to every question at that moment. I share this without permission, but it’s not her kid that has cancer, so she’ll deal with it!  Anyway, I’ve only edited out any information that would incriminate this individual, and a couple of totally underserved compliments for us. 

“This morning as I read the most recent post on the blog, my heart was full and I just cried. Not because I’m sad, but because of how hard this must be for you. I’ve found when God presents refining situations in my life it leads to so much loneliness. Because that refinement is for me. For me to work through with Him. I know you have such a great support system and each other. But what a weight you are both called to bear. As much as we try, no one else can really help you, nor ease it. No one, except Christ of course. When those moments hit me and I’m filled with the pain of loneliness I just quickly turn to Christ and say “This sucks. And it hurts. And I don’t want to do it anymore.” And Everytime I hear. “I know.” 

I read this book called Conquering your own Goliaths. In one of the chapter​s the author tells of one of the men he’s sponsoring through addiction recovery that contacted him after he had just gone to visit his son for his birthday. His wife could not put up with his recovery and had kicked him out a month prior to this. This man at this time had found momentum in recovery. He goes to visit his son for his birthday. His wife opens the door, tells him he’s not welcome there and they had already held his birthday party without him. She would not be letting him in. She shuts the door on him and he walks away. 

In recovery, addicts turn to their sponsors in moments of weakness, celebration, anything. They are available to them 24/7. He calls the author and tells him what had just happened. In that moment the author says a prayer pleading to the Lord to help him know what to say. He does not want this man to relapse. He knows of the progress he’s made. What can he say to keep him strong? Without a thought the author says, “That’s wonderful, I know it must have hurt you deeply, but I’m glad she said that to you.” He writes that both if them were stunned. He pauses and quickly prays again, Uh, father why is this wonderful? Why did I say that?

He then explains to the man, “It is wonderful, because now you have a tiny taste of the pain and rejection Jesus Christ suffered. And because you have glimpsed this small portion of his infinite sorrow, you can have a bond of fellowship that will draw you to him with a special love and devotion.” 

This passage changed my life. No longer do I resent moments that cause me to feel unloved, forgotten, ignored, betrayed, rejected, lonely, etc. Because in those moments, I turn to Christ and say “This hurts. This hurts so much.” And I feel the pain. I let it be. I don’t try and justify it away or blame or change my circumstances, I just let it hurt and Christ in his infinite goodness says “I know.” If he can endure all things, then I can endure this. 

I ache for you both and have no way to truly understand what this feels like for you. But I also rejoice in seeing you embrace it as the Lord would want you to. You’re doing everything right. You’re facing this as best as anyone could. I have no doubt every time you cry out in frustration or fear He’s right there with you. Sheding tears with you. Hurting with you. Wishing it was that easy to change the circumstances for you. 

Since celebrating isn’t an option yet, continue to take comfort in the Lord and rejoice in this process. 

Much love to you both and your family.”

We are surrounded by such goodness. There’s so few things that are really important. We are grateful for the lessons we are learning, especially those that sustain us and offer us the antidote to the despair and pain and frustration that we feel so close sometimes. 

Good Sabbath, everybody. 

A trophy. Not atrophy, like my unused abs or humanoid vestigial tails. No, a trophy, like what you give to someone for participating in rec league sports or eating 85 hot dogs in 10 minutes on the 4th of July. A trophy is what Payson got this week. 

For the past two years, Wendy and Pace have had a deal. When he reads 20 books at school, Wendy gives him a full Yankee dollar to spend at the DI. And it’s immediate redemption. Like, the moment the cover closes on the 20th book, they are in the swagger wagon on the way to the land of knit tops and used toasters. 

He buys weird stuff on these visits, believe it or not – a faux wood Mayan cup, home decor, a stained plush penguin – but the most common purchase has been athletic trophies. That other people won. For playing rec league sports or eating lots of hot dogs. And then they gave them to the DI. 

Pace proudly displayed these in his room. Proudly. And then he signed up for soccer and played and was more than a little perturbed when he was awarded a medallion at the end of the season, rather than the standard gold plastic soccer player awkwardly kicking a soccer ball. 

Anyway, this year Payson signed up for baseball. Not necessarily out of a love for baseball, or even a slight affinity for baseball. I’m not entirely sure he knew what a baseball was. But he somehow heard that baseball players get trophies, and he was all in. 

He signed up, got drafted in the fourth round by the Royals, played three weeks in Double A and a couple months in Triple A before the call up to the big leagues. Or perhaps he got assigned to the Royals and was one of three kids on the team that spent more time at practice paying attention than chasing butterflies and peeing on fences. 

He immediately developed a real love for baseball. He wanted to play all the time, and he wore his Royals hat and shirt at very inappropriate times and places, but he didnt care. 

Anyway, baseball season started right about the time his random pains started getting worse. He missed a practice or two because of them. He was able to play two games with the team before his diagnosis. The Royals scored zero runs in these two games, but at least they were an hour long. 

After he was diagnosed, there was no more baseball for him, and honestly it became one of the hardest things about which not to think “Poor Me.” Like, the park is five houses away. We could hear the parents cheering from our backyard. We kept receiving the emails. The weather was perfect. Every time I’d drive home in the afternoon, there were hundreds of healthy little kids running around playing baseball. It was a little bitter. 

We really do our best to avoid all of the “why Payson?” thinking. Like what’s the point of that? It’s a waste of energy and it horks our groove. Plus, we aren’t special. If other people have to deal with complete BS like this, there’s nothing in the universe that should preclude us. 

But baseball was hard. 

Well, the season ended, thank Heaven, and it wasn’t a thing I worried about anymore. He will play again next year, props to the healthy kids, we are good. Then, the other night, one of his coaches showed up with this:

I’ve cried more in the last month than the rest of my life combined. Like, my life has been full of eyes as dry as the Gobi Desert, but the last month my eyes have been Mount Waialeale. It’s  been a few weeks since a real gusher, but this trophy did the trick. 

Stairs are a little tricky for Pace right now. Like, not impossible, but they require some time and effort and focus. But right away he came downstairs with the biggest proudest smile to show off his new trophy, and then immediately he went all the way to his room upstairs to give the trophy a home. 

“I don’t need these other ones anymore. I earned this one.”

He loves it so much, I was afraid he was gonna sleep with it and wake up with a gold plastic baseball player etched in his bald head. But thankfully the trophy has stayed on the shelf, displayed like some priceless heirloom. 

Here’s the secret – Payson’s team didn’t actually get trophies. Based on what I saw, they probably didn’t even score a run. But coach had some trophies left over from a previous year, and somehow he thought about the little kid that only played two games, and he brought it over to make sure Payson knew he was still part of the team. 

People shame us with their kindness. We love you all with the white hot fire of a thousand suns. 

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Treatment day.  Day 35 overall and Day 1 of Consolidation.

Payson’s numbers are terrific.  Docs are very happy with how he’s responded so far.  And we are totally experts at this now.  Like, these numbers are starting to mean something.  To someone.  Somewhere.  And a little bit to us.

He’s been knocked out two weeks in a row for some needle work in his spine.  The next two weeks he’ll be knocked out again for more needle work.  He’s also starting on a daily chemo pill.  He’s become an expert pill taker.  He only gags like four times per day.  Progress.

Consolidation will be a month long phase.  Doctors expect some of the swelling to go away and his energy to keep increasing throughout this phase.  Also, some of the shine may come off his scalp.  Right now it shines so bright that Miss Hanigan would even be satisfied.  And he’s got another member of the Bald Club!

But Why Is This So Freaking Hard?

Wendy and I have been talking about this, when we can find time in between our couples massages, guest lecturers, and passionate dates.  Like, why is this so hard? He could have been diagnosed with 100 things more immediately threatening. His own diagnosis could require so much more aggressive treatments.  We are so optimistic about the outcomes.  So why is this hard?

I think a couple things. First, up yours Leukemia.  Even on days like today, when treatments are working and energy is returning and doctors are happy, when Pace wakes up with a glimmer in his eye, when the weather is wonderful and summer is here – even on these days, you can’t celebrate.  Not too much.  You just can’t.  Because in three hours Pace could spike a fever and be in the hospital with something serious for a while. Or his next visit could go bad.  Or a medication in the next phase could give him the business pretty good.  Or Delayed Intensification in the fall could wipe him out. Or the crayons the server brings at Texas Roadhouse could make him sick. Or he could get a freaking kidney stone and his car could hit a perfectly innocent deer.

Cancer doesn’t let you celebrate, not right now, and not for a while.  You can be encouraged, you can feel relief, you can be at peace, but you can’t declare victory. It just sits there, Leukemia, with this arrogant grin and the only thing you can do, really, is beg for mercy.  So even though we talk about kicking this pig and up yours and all that, we know.  We know.

Side note: I’ve wondered why I feel like capitalizing Leukemia when I write.  Like it demands this respect or something.  Like I don’t want to piss it off again, so I capitalize it.

So, first hard thing – no celebrations.  Just relief and counting days.  But, wow, we have a long road ahead, and every single day brings something unexpected.

Anyway, the second hard thing, I think, is just the way he looks.  I mean, he’s got the twinkle, the sparkle still.  He’s everybody’s favorite kid other than their own kids.  He’s charming and full of so much love and humor. But it’s hard to see him look so sick. It’s just such a change. Little kids don’t look like this.  40 year old dads who can order fluently from McDonald’s without a menu and who eat their weight in Beto’s bean burritos on a monthly basis, they look like this.  They deserve it.  He doesn’t.

Somehow, the change in how he looks makes us love him even more. But, it’s hard. It’s a constant, unavoidable reminder of the situation.

The third hard thing is how defined this treatment is.  They know so much, they’ve learned so much, and we are so amazed and humbled by it.  But for every defined, down-to-the-day tiny piece of this treatment, for every pill and injection and port and numbing cream, it’s a reminder of the kids who have dealt with this before, who’ve struggled and fought and won and lost, and the kids around the world right this minute who aren’t as fortunate as Pace.  All of this progress has such a cost.  We always remember that cost.

So What Have We Learned, You Whiny Navel Gazer?

Three quotes by Viktor Frankl:

1. “When we are no longer able to change a situation – we are challenged to change ourselves.”

All of my life, I’ve seen adversity as something outside of me – circumstances thrust upon me, other people’s choices affecting me, bad luck. But really, adversity, most adversity, comes from within. Yes, there are things we define as “hard,” and things we define as “easy.”  There’s no way around that.  I’d rather spend the next eight months on Hanalei Bay then helping Payson and Wendy and Brigham and Walter and Maclayne and Isabelle in this journey.  But, absolutely and without question, I get to choose what this does for me. I can’t change this situation, so who will I become through it? I don’t like the short tempered, lazy, difficult guy this has sometimes revealed. That guy needs to go away, replaced by something better because he’s been refined because he’s chosen.

2. “Each man is questioned by life; and he can only answer to life by answering for his own life; to life he can only respond by being responsible.”

Cancer survivors have this thing, this zest, this focus that I’ve always admired. They live with purpose and with meaning, because they’ve had to consider what it’s like to not be able to live at all. They answer for their lives, because they’ve been given their lives. To answer for your own life, to me, means to be present.  Right now, this moment, this day, how can I be responsible? How can I answer best for my own life? I spend too much time in the past or in the future.  I spend too much time and energy and stress on a whole load of nonsense that matters not one tiny fragment of one bit. So, what about today? How is today going to be different for me than it would have been up until May 3, 2017? Will I ever say no when Payson wants to play again? Even if I’m really tired or I don’t feel well or the game is on? Jesus said it this way – “What will a man give in exchange for his soul?”

3. “The more one forgets himself – by giving himself to a cause to serve or another person to love – the more human he is.”

To all of you who have helped, who continue to help, thank you for being you, for forgetting yourselves, for being human. We’ve felt love and concern from people numbering into the thousands, literally.  Our families and our best friends and our good friends and our sort of friends and our acquaintances and total strangers and probably even some of our countless bitter enemies – all of these have shown up for us.  A person can’t serve unless there are people to be served. We are so humbled to be in the position of being served, but your sincerity and thoughtfulness is some of the only stuff keeping us from being drowned by this thing.

When this wheel turns and things are light and the weight and darkness of this thing is gone, we are soooooo gonna pay it forward. I hope, through all of this, that that’s who we are becoming.

OK, that got a little heavy. Probably time to go use the remote control fart machine I got for my 40th birthday.  Peace out.

Our oldest boy is named Brigham. He’s a remarkable person, and I’m not just saying that because he keeps his bathroom surprisingly clean, although that’s most of it. This is Brig:

When Brigham was in sixth grade, his hair started falling out. One day, we noticed one of his eyebrows was falling out. Being the totally awesome dad that I am, I told him to stop being a total idiot and rubbing out his eyebrows when he’s itching his eyes. Father of the Year, right here. Then a couple days later, Wendy pulled on his hair and a whole handful came out, and then I realized that maybe perhaps he wasn’t just rubbing his eyebrows until they fell out. 
Brig got something called alopecia. It’s a thing where your hair falls out. He fought it for two years. He got steroid shots in his scalp, in the rest of his head, in his freaking eyebrows. Aaaaaaahhhhhhh!!!!  Seriously, in his eyebrows. Shots. They worked a little, but his hair was as patchy as Kayla was on Days of Our Lives <rimshot!>. 

He tried other stuff. He went to physical therapy. He took some other drugs. He drank his weight in water. He went to some hippie advanced medical clinic where they asked him to hold crystals in his hands for a half hour and we swear we aren’t making this up. Shockingly, that didn’t work either. Nothing did. 

Finally, in March 2015, while in the super awesomest  year of any American child’s life – 8th grade – Brigham said, in the nicest way possible, piss on it. And he shaved his head and bought some Buddy Holly glasses and gave the proverbial bird to alopecia. Epic day. 

His biggest fear, of course, is what the other hormonally-driven apes at his junior high would think and say, but they were pretty great and he finished out the year. Then we moved and he got to go to a new school as a bald freak for ninth grade!  And then the next year another new school as he started high school!!  So many new people to bore holes in Brigham with their stares and call him Caillou and Charlie Brown. Or maybe that was just his family. 

So, super sucky thing. Such a rough go during a funky time of life. And I say this in all sincerity – Brigham absolutely blossomed and is thriving because his hair fell out. He has become so much more. He’s inspired us all. 

A couple months ago, he was elected Junior Class President at Viewmont High next year. And even though it’s Viewmont, we are so proud. His campaign slogan was Go Bald or Go Home. Owning it dude. He’s developed a toughness and a tenderness and an authenticity and a style and a sense of humor, even when Wally makes an Easter egg in Brigham’s likeness. 

So anyway, I say this because going bald is a huge challenge for so many cancer patients. It’s traumatic and unavoidable and an outward reflection of an inward struggle, and I can’t imagine the emotion of losing hair and changing so much outwardly fighting this stupid disease. 

But from the moment he was diagnosed, Payson has seen baldness as a perk. Because of Brigham. Totally unscary, totally unthreatening, totally a method to get more chicks. Because of Brigham. 

So, Wendy went and bought him some Buddy Holly glasses with no lenses at the dollar store and Payson started hoping to go bald asap and wearing the glasses in anticipation. 

We didn’t expect the hair to start falling out quite so soon, but it did. Because of the puffiness from the steroids and the hair loss and the cravings and the general weakness, in like a week, Payson went from looking like a seven year old underwear model to looking like a sixty year old dude with a bad thyroid and an unhealthy relationship with food. 

So, the hair started falling out. More than we thought, but we were still planning on the slow decline into old age. Then, on Friday, Wendy was vacuuming Pace’s head, so I knew things were getting serious. 

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Then, Friday night, we are hanging out with friends, Payson is chilling on the tramp, minding his own business and also, uh…

The point of no return. So, go for it dude. Own it. The age of baldness is upon us. 

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This happened about an hour after we found out that his cancer is gone. Even with another bald kid and all the preparation and Pace’s excitement, this was hard to see. Like a Junior High orchestra concert, where you smile and remain attentive and do your best to cover up the agony you are feeling. 

When your kid goes bald from chemo, there’s nothing to hide behind. It just is. The bald head is the surest evidence that the only way out is through. We are in chemo, and we will be for awhile, and the hair loss is such a small yet sharp and shocking part of the always uphill journey. 

But, perspective is everything. Payson is thrilled. Brigham has a bald buddy. The Good Lord in his knowledge started getting us ready for this when a geeky sixth grader started losing his hair four years ago. Payson’s treatments are so much more manageable than what others are forced to deal with. 60 years ago, Payson probably wouldn’t still be with us. This whole leukemia thing will do for Payson, and for others in our family, what going bald did for Brig. We will be refined, and we will become stronger, and we will find style and groove and passion. 

So, here we are. Three bald Inkleys. Weaker but stronger, ready for what’s next. And if the Good Lord is willing and the clippers work, Wally will join our ranks this evening as his most favorite thing, his hair, becomes a pile on the ground in honor of his brother. 

Up yours, Leukemia. Let’s kick this pig. 

Payson is in REMISSION!

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So, the point of all of the treatments he’s had in the Induction phase is to make sure that by Day 29 (yesterday) they wouldn’t be able to find cancer in his bone marrow. And they can’t. So, he’s officially in remission. 
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That doesn’t mean that there aren’t any cancer cells left in his body, just that there’s no evidence of them in the tests. In fact, they know there are Leukemia cells still around, and if untreated they’d start doing their rapid reproduction thing immediately and very soon we’d be right back to square one. So the next six months are about eliminating every single cell that might be a problem. Like, Induction was the Merry Maids cleaning your house, and the rest of the time is like your mother in law cleaning your house. Or something. Also, I love my mother in law very much.

Still such a long road ahead, so much treatment, so much medicine, lots of blah and meh and aaaarrgghh and <expletives deleted>. 

But today, no cancer. Up yours, Leukemia!!!!!!

Pace is good. Phase one, Induction, is over. We don’t have the actual results back from his bone marrow aspirate, but everything else is really good.  He had to fast for 15 hours before the visit today, but he made up for it by eating 14 packages of Club crackers as soon as he woke up from his procedure. I swear I am not making this up. 

Here’s the man on the way to the hospital:

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He’s puffy faced and skinny armed and legged and his hair is falling out and he has this funny gut and he’s pale and pretty weak. He’s even found himself a walking stick to get around the house. 

And here he is in his Let’s Kick This Pig shirt!

To be honest, this whole thing is heavy. I mean, I think we have a good attitude, and we are so optimistic and positive about the outcome, but every day is at least a bit of a challenge. Some days are worse than others. It’s difficult watching your child look sick and become weak. It’s not fun. Today was a tough day for the old people in this house. We don’t know why. Up yours, Leukemia. 

Here’s him prepping to sing for the nurse and just looking good today:​​

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On to phase two, Consolidation. He will have a daily chemo drug he’ll take orally, and he has one treatment of vincristine. His next three weekly visits are procedure days, meaning that they will put him under and do a lumbar puncture to test and treat his spinal fluid.  He comes off the steroid that he’s been taking for 29 days, twice a day, so a lot of the puffiness and weakness he’s been feeling will start to go away, and he will look less like Arnold Schwarzenegger. 

Later in this phase he will probably have a week off from hospital visits, so he will go 14 days between treatments which will seem like when Andy Dufresne escaped from prison in the Shawshank Redemption. 

Anyway, progress. 

First of all, Memorial Day is upon us. My grandfather landed on Utah Beach D-Day+2 and fought in Normandy. His brother enlisted before his 18th birthday and was killed fighting in the Pacific. Their toughness and bravery, along with all who serve, humbles me. 

We also feel especially connected this year to our people who have gone on. They are around. We feel them close when we need them. 

But this isn’t about that.  This is about yesterday. 

As avid readers of letskickthispig (we call them Piggers) know, we had a wild hair a couple of Sundays ago to bomb it to the Tetons on a day trip. That was an abject failure, but fun, in a masochistic way or something. 

Well, yesterday Payson woke up, and something from the underworld possessed him, and he came running upstairs and announced that he wanted to go to the Tetons reaaallllly bad and also could we get some cantaloupe on the way?? So, we went for it. WE WENT FOR IT. We dropped all responsibilities and common sense and the advice of professionals and WE WENT FOR IT. 

It was a perfect, epic day. So good. That part of the world is the most beautiful. Such a stunning, calming, breahtaking place. And this felt like a way of giving Leukemia the proverbial bird and making sure it knows that it isn’t the boss of us and we will keep living our lives, thank you very much. And also, we hit three Maveriks on the way up. 

Side note, we are pretty sure that we bought Maclayne a shirt that espouses drinking wine all day long, but ignorance is bliss!

Payson wanted to use the fishing pole that somebody gave him for his birthday, except we didn’t bring any actual bait or hooks and we didn’t technically have a license, so instead of fishing we tied a stick to the line and practiced casting and reeling. We didn’t, to our utter shock, catch any fish. But Payson seemed about 65% satisfied with the whole thing. 

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Everything was idyllic and perfect, and we actually had the gall to start talking about other day trips this summer and where we want to travel during Payson’s treatments. And then reality, as it so frequently does, cold cocked us something good. 

Right before dinner, Brigham spiked a fever of 101. If there’s one thing we are terrified of, it’s fevers. We are afraid of fevers right now like Oprah is afraid of putting someone else’s face on the cover of her magazine. Fevers mean there’s a bug or infection, and Payson can’t, you know, fight bugs and infections really good right now, so fevers make us skittish. And the prospect of Brigham sitting around in his own juices right next to Payson for four hours on the drive home wasn’t super duper exciting. But, up yours Leukemia, we are living our lives!

So, we ate an awesome dinner and then we got loaded up for the drive home. Fifteen minutes into the four hour drive, Payson gets hit by severe pain in his belly, like out of nowhere and gear down big shifter. When I say “severe pain,” I mean this is a kid that had a Manwich sized kidney stone a few months ago and is currently having treatment for chemo, so when he says his pain level is a 10, he knows what he’s talking about. 

When our kids were babies, Wendy knew what they needed based on the type of cry she heard. It was uncanny. I always thought she was a little full of it, but she was always right. Hungry cry, tired cry, wet cry, stinky cry, bored cry, I hate this outfit cry, whatever. Wendy knew it. To be totally honest, I also knew what every cry meant, but it was always the same – take me to my mother immediately. 

So anyway, Payson starts wailing in the car, and Wendy says “that sounds like a kidney stone.”  It’s this high pitched, uh, warble, and it’s the saddest thing I’ve ever heard, especially when he’s saying stuff like “Please make it stop,” and “I’d give away every bit of my money for this to stop hurting.”  He’s the toughest kid I know, so we know this is for sure a thing. 

We get the PCMC doctor on call on the phone and there’s no fever, so he thinks it’s a kidney stone, which I guess isn’t uncommon during the Induction phase of chemo, as if the cancer and chemo aren’t enough, but whatever. I’m no scientist. So he tells us to give some Tylenol (rub some dirt on that kidney stone) and if he can bear it try to make it home. If not, stop at the hospital in Afton, about 25 minutes away. 

So, like any good father, I floor it and start driving that 2004 Honda Odyssey like it’s the Batmobile while Wendy sits on the floor of the minivan and says prayers with the kids and sings to Payson. And Brigham tries not to infect him, and Maclayne, of course, has to pee like Iguacu Falls even though we went right the moment when we left the restaurant. 

Anyway, we are making progress, the pain goes down to a 7, I’m wondering if there’s a senior NASCAR circuit, Maclayne is ready to hang her backside out the window and free the fluids, Brigham has a hoodie wrapped around his head and he’s trying not to breathe, and we get pulled over doing 90 in a 65. Of course we do. But up yours, Leukemia, we are living!

So, the officer hasn’t even started talking and I tell him I’ve got a kid with cancer who has a kidney stone and for the love of all that’s holy we are just trying to get to the hospital in Afton and could you please just go and arrest some cattle wrestlin’ varmints or whatever??  And he buys it, WOO!!!, and we are off again. 

We stop at Maverik (4th time!), buy some Children’s Tylenol and assorted juices, give Maclayne 60 seconds of free bladder activity, tell Brigham to breathe outside, shoot Payson up, and get rolling again. Five minutes out of Afton, Payson falls asleep. So, we decide to keep bombing it. And everybody in the car is sworn to silence with the seriousness of the vow of a Franciscan monk. Seriously, can it!!!  This kid is asleep, and if you wake him up with your giggling and sibling kindness and such, we are selling you to a sugar beet farmer. 

We do the math, and the next closest hospital is in Evanston, so we’d never be more than an hour away from a hospital, even if we have to turn around and head back to Afton. I mean, one of those hospitals is in Evanston, and I wouldn’t trust a hospital in Evanston with a feral cat, but it brings some solace. 

Two minutes past Afton, we come up fast on the rear of a speed-limit-driving SUV that’s another freaking cop. Lots of varmints out today near Afton, evidently. But rather than pass him and be forced to give him the rigamarole, we decide to cool the jets and follow him until he, by the grace of heaven, gets the hell out of our way. 

Right before the climb out of Star Valley, the Sherriff pulls over, we zoom past and gun it, and now we are really rolling!  Kid with a fever, kid with cancer and a kidney stone, Maclayne’s bladder only about 80% refilled, cops dropping out of sight like my girlfriends in high school, so up yours Leukemia, we are living!!!

And then we hit a deer. With our car. 

A freaking deer, standing in the middle of the road as if the asphalt were perfect for grazing. 

We actually didn’t hit the deer. I, being the experienced and devastatingly safe driver that I am,  slammed on the brakes like they had insulted my mother, swerved wildly into the empty oncoming lane, and screamed like a celebrity being scared on Ellen. That idiot deer took this as a sign to bolt over directly into the path we had taken, smack its face into our fender, break our mirror, rip off our antenna and leave a DNA sample of its hair in its place, and cause our passenger door to be totally incapable of operation. 

And you know what?  We didn’t even stop.  We accelerated back to a borderline unsafe speed and just kept on trucking.  After about 30 seconds of stunned silence, Wendy started giggling, and that was that. 

I spent the rest of the drive giggling intermittently with Wendy, making inappropriate roadkill jokes, and listening to the silence of the van, which was broken in frequent outbursts from Isabelle that included:

• Mourning the loss of that poor, innocent deer
• Asking if anyone has a tissue. 
• Lamenting that humankind had created machines fast and strong enough to wound wildlife. 
• Begging to turn around and apologize. 
• Questioning my humanity, as clearly I hate animals and orphans. 
• And also does anyone have a tissue?

I told Wendy in a quiet moment before we got home that if the Good Lord himself were sitting in the minivan with us, he’d give us a smile and a shrug and say “Yep, that’s a lot of crap at one time.”  And then he’d laugh. 

So, we got home without further incident. Payson hasn’t had the pain again although we think the stone is just waiting for the right moment, Brigham beat the fever, Isabelle is founding a gofundme for the families of roadkill, Maclayne is in awe of the easy access of modern indoor plumbing, Dad is watching NASCAR and sort of liking it, and Mom is giggling intermittently while waiting delivery of the Mother of the Year award. 

So, to recap, we had:

1. A kid with a bad fever chilling right next to a kid who simply shouldn’t get sick, with 300 miles between us and our doctors. 
2. A kid with cancer who was four hours from home because his parents are idiots. 
3. A kid with cancer who was passing a kidney stone. 
4. A kid with a bladder the size of a tiny, flaccid balloon. 
5. A cop. 
6. Another cop. 
7. The possibility of a hospital stay in a hospital where horses take priority over people. 
8. A dead deer. A very innocent, kind, remarkable in every way dead deer. 

So, up yours, Leukemia. We are going to keep living our lives!!!

We are just going to do it at home for a while. 

Another treatment at PCMC today. Day 22 of this month that is definitely the longest month in the history of humans, including that one month I tried the South Beach Diet. 

Numbers are good. All good. Just what they want to see at this point. Still sort of, like, gobbledeegook, but also informative. I think we are understanding like 85% of things, and I think the decimal is in the wrong place on that. But someday we are gonna understand sooo much we are going to ask really insightful questions and not just the equivalent of “Why the hell is he so tired all the time???”

On this visit, Payson did get a ridiculous hat and had someone super rad fulfill today’s craving request of Orange Chicken. So, he got shot up with some intense medicine, but it wasn’t a total loss. 

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Next week is Day 29. The end of the first phase, Induction. It’s an important day. They give him a treatment and do a lumbar puncture, and they evaluate the whole month and establish the approach for the next phase, Consolidation. We are hopeful for that. Also, that day is his Dad’s 40th birthday. He’s hoping to induce some red meat and consolidate his bowels, or something. 

That’s Payson’s Chinese teacher. She’s rad. We are trying to make sure her efforts aren’t in vain, so we are establishing Payson’s educational plan during this totally stupid and sucky cancer thing. So far, here’s what we have:

1. Maybe read something sometime, or at least listen to someone read something, even if it’s a TelePrompTer and the person is one of the Wiggles, so help us. 

Anyway, so far, our plan sucks. He doesn’t want to read. Like, he will read a Chinese food menu, or the ingredients in Hershey’s Chocolate Syrup. But, as far as chapter books or picture books, or anything really in the “book” genus or species, he’s not interested. Lazy, I’m telling you. 

So, for fall, we have all kinds of plans and resources that are available that we are excited about. However, in the meantime we prefer Payson, like, uses his brain so it doesn’t degrade into Quaker Instant Oatmeal. 

One thing he will read is texts and emails. We realized this when our crazy brilliant friend Laurie went to San Diego and sent him a story about the Mormon Batallion. He was totally into it, like steady dating. 

So, being the totally awesome parents we are, we’d rather have somebody else do the work so our kid can benefit. So, if you would be so kind, email Wendy a story, to wendy@ratenow.net. It doesn’t have to be a big long super boring story. A couple paragraphs. Something from your life, or an imaginative and age appropriate retelling of a fairy tale, or a cool fact about the universe or the earth or dirt, or something totally made up. Whatever. Just something for him to read. And when he wins some literary or reading award, or at least doesn’t need the picture menu at McDonald’s, imagine how great you’ll feel. Wendy@ratenow.net. Do it now. 

We love you!!!!

He seems pretty laid back and unconcerned. Might be time for a part time job. 

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