Payson was diagnosed with leukemia on May 3, 2017.
Our family decided last night, October 8, 2019, that Payson is done with his treatments!
It’s been 889 days. He’s been a cancer kid for 889 days, and today, for the first time since he was diagnosed, he’s not a cancer kid. He’s just a kid who doesn’t have cancer anymore.
A little background about why this decision was even possible:
At Payson’s treatment in August, we were told by the doctors that there were some new findings that impact his course of treatment. For a diagnosis like his, boys typically receive about three years of treatment, one more year than girls receive. Something about gonads and other male-intensive equipment that in the past has lead to a higher rate of recurrence among boys without the extra year of maintenance.
And, we found out in August that Payson is a girl!
Actually, not really. He’s still a dude, gonads and all. And this got weird.
Anyway, recent findings indicate that, due to more aggressive treatment at the beginning of therapy, the extra year for boys doesn’t seem to make much difference in the likelihood that the freaking leukemia will come back. So, for Payson, it meant the possibility of cutting short his treatment by about eight months.
They told us this news in August, recommended that he be finished now, but left the decision to continue or to stop entirely up to us.
AND LAST NIGHT WE DECIDED HE IS DONE!!!
So why, you ask, did it take so long to make this decision? Like, your child can be done with chemotherapy early. Why didn’t you jump on this as quickly and aggressively as you jump on the dessert bar at the Chuck-A-Rama?
This is a valid question, and I’m not sure I know the answer, other than that having a kid with cancer is hard. Sometimes there are emotions and memories really close to the surface, things you don’t really know are there, and these things pop up and smack you in the kisser at really random times, and it takes some time to work through them.
So, in the midst of this total relief and joy, there’s some other things mixed in that are unexpected and weird.
It’s weird that, somehow, in some impossible way, we look back on this thing with so much joy. Like, the excavation of our souls, the total helplessness, the loneliness, the fear, the darkness, the weight – somehow these things have dimmed with time. Sure, they flash back up readily and with abandon sometimes, but they haven’t endured. What has endured is this new level of love, appreciation, gratitude for this little kid, for his siblings, for all of the people who have rallied around us and been with us and carried us, for our faith in a plan and in a God who is with us. So, there’s a bit of mourning the end of this, somehow. A bit of something lost, something that’s defined us, something so important to our story. I can’t quite describe it, but somehow we’ll miss it.
It’s weird that stopping treatment makes it somehow seem less safe for Payson, like active maintenance felt proactive, and this feels vulnerable and passive.
It’s weird what you think about when you have to really consider that this thing might come back, and if you choose incorrectly, you might regret it with your whole entire soul.
It’s weird to be more concerned about the finances of the whole thing. Our approach has been to manage these things, keep up with what’s needed, but not have it be an added burden and stress. We’re doing fine, but now this feels more urgent and necessary.
It’s weird to find that you’ve acquired the most hope that you’ve ever had in the times that should be the most hopeless.
It’s weird to feel a pressure to back up all of your talk to pay it forward, to really show charity to other people in the perfectly incredible ways that you’ve been shown charity.
It’s weird that you wonder if you’ve learned what you should, if the growth to your character and compassion is equal to the sacredness of the opposition you’ve encountered. Am I who I should be because of this? Is the family? Is Payson?
So, lots of navel gazing. Unexpected thoughts and feels that I guess are just part of another chapter in the journey.
When they first told us he could be done, we were pretty dead set against it. We had a plan, his treatment has gone so well, why screw it up? Then it hit us that, duh, if you have the opportunity to relieve your kid of having a bunch of weird medicines with whacked out names shot into his body for the next eight months, you should probably jump on that. Duh. Like, I’ll be there’s never been a person who, on their deathbed, said, “I wish I would’ve given my kid more chemo when he didn’t really need it!”
Still, it was a change of plans, but we started to consider it. Took it to prayer. At some point we realized that Payson needed to be a part of this, and actually what he felt was the most important thing, so we included him more.
Last night he sat down, wrote out a list of the Pros and Cons, took some time to think and pray about things, we talked about all of the relevant things and most of the irrelevant things, and then we decided together. It was a very special night.
I was so proud of him, for his honesty, for his openness, and for being so brave. He had to face some stuff that I didn’t realize he felt. He’s afraid of getting poked with needles after he gets his port out, he will miss going to the hospital because the nurses and doctors are his friends, he likes feeling special and this has made him feel special, he’s afraid the kids at school won’t be kind to him anymore if he doesn’t have cancer, he’ll miss the people that have done and continue to do incredibly thoughtful things for him, he’ll miss the special times with his mom on treatment and sick days.
I’m not sure I’ve ever given enough thought or weight to what this experience has been for him. What he’s endured. He’s been such a champ, such a rock, so consistently awesome, that I’m not sure I’ve ever counted the cost for him. It was eye opening and heart breaking and inspiring. They told us from the beginning that they can cure the cancer, that our concern should be for what kind of kid he was after the cancer was gone. It think he’s doing good.
So, we don’t know what the immediate future holds. Pretty soon here, he’ll ring the bell. The next step is probably getting his Iron Man port out. It’ll be weird to have him with just two nipples again, but we’ll manage. Beyond that I think it’s checkups with decreasing frequency, and then at some point they’ll tell us that he’s in the clear and no more likely to get leukemia again than anybody else is.
He’s got some really awesome opportunities to contribute with the Children’s Miracle Network coming up, and we’re so excited about that. We’ll keep the Let’s Kick This Pig audience totally informed about those shenanigans.
He’s in fourth grade. He’s small for his age. He’s got a rad group of friends. He’s his siblings’ hero. He’s in a couple of plays. He moves too slow when doing his jobs, and it takes him forever to put on his shoes. He loves Arby’s. And, for the first time in the 889 days since May 3, 2017, he doesn’t have to take any medicine for cancer.
He makes me believe.
Let’s kick this pig!