What’s Next?

Items On the Completed List

232 days

28 chemo treatments

19 home health visits

11 full knockouts

20 hours of battling the sticky stuff

230 pills

100,000 hairs lost

5 trips on the stairs

0 full days of school

30 in-home visits from teachers

50 glorious puke sessions

3,000 hand washings

2,000 weenus bumps

1 million cravings

999,999 cravings satisfied

1 seven year old boy moving on to Maintenance

Items On the To Do List

Next is a phase called Maintenance.  It lasts for 28 months.  It will include daily chemo pills at home, some rounds of steroids at home, monthly visits to the hospital for treatments, quarterly back pokes at the hospital.

Life should start to return to some kind of normal.  His energy should start to come back, so he can go to school all the time.  His hair will grow back.  His body might, like, put on some muscles or something.  His parents will learn to say no again.  He won’t sleep as much as he wants all the time.  It’s almost like he’s going to be a teenager.  We’ve already inquired about getting him some part time work at McDonald’s.  He’s been a taker for seven and a half years now, it’s time to pull his own weight.

After Maintenance, right around his 10th birthday, he has two more years where he will still be evaluated on a regular basis.  He’ll officially be out of the woods on his 12th birthday.  Meaning that, at that point, he’s no more likely to get Leukemia again than anybody else.

So, 232 days in the woods so far.  1,593 more to go.  Most of the 232 have been great days.  Most of the 1,593 left will be the same.

Up yours, Leukemia.

Random Kindnesses

There’s this amazingly cool guy named Collin Kartchner.  He’s one of them Instagram celebrities.  Not the celebrity Utah needs, but the celebrity it deserves right now, or something.

He’s like the raddest dude ever, and he’s got this huge social media following, and he doesn’t use this to schlep stuff and make fat stacks.  He uses it to do kind things for other people, and he does this simply because he can.

So, he did this party/fundraiser for Little Man and Brooke and William (a couple other amazing cancer kids).  It was a big old shinding with foods and games and gifts and Mormon cocktails and music and fun.  As part of the leadup, he took Payson and Brooke on the old television with him to talk about it and allow Payson to flirt with afternoon news personalities at KUTV.  It blew Pace’s mind.

The day of the actual party was a treatment day for Pace.  It was actually a back poke day, so he got knocked out around noon, and the party was in the Utah County at 7:00.  He slept the afternoon away, got in the old family truckster, and made his way down to party like a rock star.  He ended up having some slight nausea at the party, by which I mean he barfed five times while he was there.  But he lasted an hour, he met some amazing people, he was hooked up with some remarkably generous and meaningful gifts, and he felt a freaking tsunami of love from a bunch of strangers who chose to be nice to him, simply because they can.

It’s impossible to adequately thank Collin for this, just like it’s impossible to thank so so so many other people who have been kind to us, simply because they can.  All we can do is feel unworthy but completely grateful, and look on in awe that so many get that Payson is worth it and worth everything.  And we can pay it forward.

Winter Solstice

December 21st is the shortest day of the year, the day with the least amount of light.  It marks the point in time when the light starts to return.  For thousands of years, people celebrated it as the victory of the sun over the darkness.  Christians took that tradition and added the advent of Christ to the celebration, the idea of light coming to the earth, the surety that light overcomes darkness.

Christmas means more to us this year.  Light and hope and goodness and the idea that darkness will come, but light will follow darkness.  Always always always.  And, when the light returns, it will mean more because of the darkness.

Merry Christmas, everybody.

What It Can Become

Right now feels like a checkpoint in this whole experience that our family is sharing.  We don’t celebrate, really.  I don’t think you ever really celebrate with cancer, not until it’s totally over.  You count days, you feel relief, but you never celebrate, because you never ever know what tomorrow is bringing.  But right now feels like a checkpoint, a time to reflect on what’s happened and to gear up for what’s coming.

“It’s not about what it is, it’s about what it can become.”  – Dr Seuss

I freaking love this quote.  Like, I don’t think I really get it, it’s sort of like “if you can balance a tackhammer on your head, you will head off your foes with a balanced attack.”  But I freaking love it, anyway.  Like, nothing is what we think it is, it’s all just experience, and we make sense of it in retrospect.  We create our stories not on what actually is, but what we choose to think about what is and how it fits in to what has been.  We exist in narratives, and everything can become for us something so different than what we think it is in the moment.

Here’s what Leukemia has become for me:

  1. Watching suffering that I’d choose to endure 1,000 times before I’d want to watch Payson endure it once.
  2. Being taught toughness at a level that I didn’t think could possibly exist.
  3. Learning that the goodness of other people is staggering and boundless.
  4. Understanding the impossible, relentless weight of heavy things.
  5. Accepting the hard facts of life – that this whole thing is temporary, it’s indescribably hard sometimes, there aren’t satisfying answers to every question, and we control so little.
  6. Deepening everything I feel – good, bad, sucky, euphoric, joy, pain – all of it more meaningful.
  7. Embracing the reality that the most profound learning and growth are a result of opposition.  There’s no other way.
  8. Refining my faith in God as a matter of hope and trust and faithfulness, and the idea that most prayers don’t change circumstances, but the best ones change us.
  9. Resolving to never be the same, to never be consumed by the meaningless drivel that has so often consumed my heart, to live with clarity and focus, to be the awesomest version of myself.
  10. Having two new heros:

On May 3, if you asked me what Leukemia is, I’d have said that it’s the worst thing that ever happened to us.  If you ask me today what Leukemia has become, I’d say that it’s one of the best things that could have ever happened to us.

Life is about three things – what you experience, what you learn, and who you love.  That’s all you take with you.

What’s next?