Progress & the Plan

Payson Dale Inkley was diagnosed with Leukemia on May 3, 2017.  169 days ago.  He’s five and a half months into the first eight months of his treatment.

It’s been an unfathomably long, heavy road.  It is absolutely impossible to describe what this experience has been for him, for his parents, for his siblings, for his family, for his friends.  There’s a weight and a heaviness that’s undefinable and constant, and it hits harder and lingers more severely at random times.  There’s also so many good days, and some moments that are breathtaking in their joy.  Wendy said the other day that, in some strange way, this feels like a privilege.  The suckiest privilege you can imagine, but still a privilege.

I was thinking this weekend about what I’ve learned from this thing.  I think the single greatest thing has been a rediscovery of all the lessons I’ve ever learned, but with greater depth, more meaning, increased humility.  I’ve never ever been lower than the past five and a half months.  It’s not easy to be happy.  This thing has changed the way I see the world, made it impossible to be carefree, forced more awareness of suffering and the relentless adversity that’s part of every life.  But it’s also brought focus, clarity, commitment to living better.  It’s deepened my ability to love.  It’s also forced me to rethink my priorities, to stop caring about all of the absolutely meaningless stuff I used to fill my mind with. There’s so little that really matters.  So little – the experiences you have, the things you learn, and the people you love.  And that’s it.

Payson has shamed us all with how he lives through this.  He teaches me every single freaking day, and I couldn’t possibly find the words to say all the good things I think about him.  He’s always been special, unique, everybody’s favorite kid that’s not their own kid.  Maybe the clearest thing I can say about how I feel about him is that he’s worth it.  The unrelenting treatments, the mile long parade of medicines, the threat of the unknown, the sadness of watching suffering, the unspoken feelings of unfairness, the uncountable prayers, the tsunami of kindness, the thousands of sincere cheerleaders, the boundless charity, every single cent that people have contributed, he’s worth it.  It strikes me sometimes that 30 years ago, or someplace in the world even today, he probably wouldn’t be with us.  I will never take the people I love for granted, never again ever.

So, here we are 169 days later.  Stretching through adversity.  Humbled by kindness.  Helpless against this thing.  Hopeful for good outcomes.  Grateful for the suckiest privilege we never wanted.

The rest of this post is just going to be about Delayed Intensification so far, the short term plan, and the longer term plan.  It’ll be essentially the Franklin Day Planner of Payson’s treatment.  Sharpen the saw.

So, he’s five and a half months through the first eight months.  He’s a little more than halfway through Delayed Intensification, which, as a phase, sucks as much as the movie Hocus Pocus.  In the past four weeks, he’s had days where four hour naps were the norm, where going outside was a chore, where mouth sores forced him to take controlled substances to be able to eat, where pains in his back and legs prompted calls to the hospital.  It’s been an adventure.  Again, never a complaint, he just does his thing, not always with a smile, but rarely with a frown, and never with a complaint.

Last weekend, he had four treatment days in a row – one at the hospital, and then three at home.  For those treatments, we decided to keep his port accessed, meaning that the Sticky Stuff stayed on his body for four days while he had tubes hanging down from his port.  He walked around for those four days like Quasimodo.  He also didn’t really want to turn his head, so to look to the side he’d turn from the waist like Batman.  So, Batman Quasimodo for four days, which, come to think of it, would kill as a Halloween costume.

This weekend, he’s got four more straight treatments, all at home, if things go well.  The first was today, then every day through Sunday.  We decided to not keep him accessed for these treatments, because Batman Quasimodo, while awesome for one night of trick-or-treating, is no way to live.  So he’s gotta be brave to get accessed and deaccessed four days in a row.

After that his FINAL TREATMENT OF DELAYED INTENSIFICATION is scheduled for November 6.  After that, he has five treatments over two months during the last phase of this part of treatment, called Interim Maintenance.  Of course, everything is subject to change, as always, because you just never know and if there’s one thing Leukemia thinks is that he’s the boss of everything and there’s not a damn thing we can do about it.  So, plans could change, but that’s where we’re at right now.  And also, up yours, Leukemia.

After the final phase, there will be an assessment of some sort, and then a plan will be finalized for the next period of treatment, called Maintenance.  This will last about 28 months – the phase, not the assessment. There will be daily pills, steroids sometimes (yay for peanut butter edamame!), monthly visits to the hospital for chemo and checkups, and quarterly back pokes with the full knockout treatment to make sure Pace stays humble.

During Maintenance, life should resume some kind of normalcy, other than, you know, cancer.  His hair will grow back, he might be able to run without looking like Gumby, his body will remember how to grow muscles, he will go back to school, his parents will remember how to say “No” to him, and he’ll stop getting all kinds of sweet hookups all the time.  He’ll be a normal kid again.

Our approach to his treatment has always been to take it as it comes.  The doctors and nurses are amazing at giving us as much information as we can handle, enough to help him through things, but never so much that we end up at the State Liquor Store, buying our weight in 80 proof libations.  Or whatever you’d say if you knew what you were talking about when it comes to liquor.  I’m not much of a drinker.  Yet.