Tiny Tim and Sticky Stuff

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:

β€œIt 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:

  1. Coconut Oil
  2. A well-placed mirror
  3. 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.