-Nothing quite puts things into perspective
like a day like today.
It's always that last MRI before Christmas,
for whatever reason, that we get terrible news.
But it would be amazing to be able to catch our breaths,
to just not be always looking over your shoulder
about what's coming next for your son
and just -- just to have Christmas and have his birthday
and celebrate a new year knowing that he's well.
Joel has needs we never expected to have to meet as parents.
No one thinks
they will have a child that needs that much attention.
And then we have Elijah, who is younger
but who is caught up and has the exact needs Joel has.
And then we have the two older sons.
And I'm absolutely overwhelmed right now.
I am in over my head, and I totally know it.
And yet, in those moments where it's so overwhelming
and where you have to have so much patience,
I usually just remember,
"I could have three kids now instead of four,"
and I don't want that.
I love that Joel's here and it's so hard
and there's so much he needs
and I've never been more overwhelmed in my life
and it's so worth it and it's so wonderful.
And it's not gonna be like this forever.
The kids grow up and they grow up quickly
and they need us less
and it's just not the worst thing in the world to be needed.
There's days that feels like it.
[ Indistinct talking on TV ]
-One thing Joel has never lost in this entire experience
is his infant giggle. You know?
And when our 1-year-old laughs, it's the most --
I don't know. I don't think there's anything in this world
that brings joy to your heart faster.
-[ Giggling ]
-He's almost 4, and he doesn't talk yet in a meaningful way,
but when he laughs like that,
you just know, like, "You know, he's good."
Like, he's enjoying life.
You know, he has a quality of life, and that's -- that's huge.
-[ Giggling ]
-Yep, just one.
-[ Babbles ]
-When Joel was 1, he was diagnosed
with a very rare and very aggressive brain tumor.
And we found out that the way they treat this kind of tumor
is they just throw
the most aggressive chemo and radiation they have at it.
They just -- They give it everything they have.
-We did a month of radiation,
and it was 6 days a week for 30 days.
-He was so sick. He would vomit three or four times a day.
You just always had to have a change of clothes
for him and for yourself.
And he was losing so much weight that he wasn't doing very well.
And, finally, I just really felt strongly in my spirit
that we were supposed to pray that he stopped being nauseous.
And we did that, and he stopped being nauseous.
He never threw up on chemo again.
-So that was a really tough period.
And coming out, 10 months, he started to do better
and he was starting to thrive
and he was starting to be more like Joel.
-They do MRIs every two months
throughout his chemo, throughout his radiation.
They'd always been clear.
At 10 months, he gets an MRI,
and they tell us the tumor's back.
And they said, "I'm so sorry."
-"This is devastating."
-He said, "This is a tragedy." -Yeah.
-He said, "We've already given him
all the chemo we can give him.
There's nothing new we can try.
We've tried the most aggressive things, and it's failed."
They told us that he had anywhere from two weeks
to about four months to live.
They had us sign a "do not resuscitate"
right there in the office, and they called hospice for us,
because they knew it was spreading already
and it was spreading quickly.
But his very next MRI, which was three months later,
two of his tumors were gone and the other one was shrinking.
And that's the last we've seen any tumors.
That was a year ago in October.
We've been off of all chemo, all radiation,
all kind of cancer treatment for six months now,
and everything's been clear.
It's always weird, 'cause every three months,
we have this day where we're driving to the hospital,
and life as we know it, like,
entirely can totally change in the next six hours.
Like, we know that today, we go there,
and the doctors can tell us today that he's dying, you know?
Or they could tell us today that everything looks good.
-[ Cries ]
-We get reminded on a fairly regular basis
about what's really, really, really important,
because every time we risk facing Joel,
it shifts your priorities, and you think,
"Oh, family's important, love is important,
these relationships are important."
And so it changes how we act with each other.
-Like, I don't love Joel less because he's sick.
I love him more.
And I want to do whatever I can to just love him.
-[ Babbles ] -You ready to go?
Okay, we're gonna go see. -Let's go.
Thank you very much.
At two different points,
we were told that Joel's death was imminent, and yet he's here.
He's here 22 months later.
-Mm.
-24 months later, and it's amazing.
-Oh, here they come.
-Um, so our team is coming up. -Holy crap.
-And they have our report from today's MRI.
And it's a big team. Hi, guys.
Our pager just went off,
so I think Joel's finally ready for us,
but we'll do this first, and then we'll go get Joel.
-Okay. Well, we do have the results from his MRI.
Brain looks fine. Everything brain looks stable.
Spine, which is probably why you've noticed the walking,
not so good. -Okay.
-And this is actually --
I didn't bring the comparison to show you, but it's pretty clear.
-This whole thing is tumor? -That's all tumor.
-No.
-[ Breathes deeply ]
Okay.
Oh, my precious.
-I think, you know, at this point,
Joel's sort of outside of normal for this tumor
and pretty much for any. -Mm-hmm.
-So I think trying to go out there on a limb and...
-And saying what the next two months are gonna be...
-I just -- I -- I -- You know, I just don't know what we know.
-Okay.
-I know this is a big deal. -It is.
But there's been lots of big deals.
[ Voice breaking ] It's a big deal, and it's --
And it's -- Every time, it's hard.
Like, it's hard, no matter what, each time.
And, yeah, like...
There's still hope each time.
Like, God's been so good to us each time.
Like, unspeakably good. Like, we talked about --
We sat here two years ago,
and we weren't sure he'd make it to his birthday,
And I thought, "Can you believe we're here?
Can you believe we're here?"
And even this...
-So, I think there's a lot of things that you guys
are gonna have to sort of talk about and think about,
you know, in the next week.
-Yeah, one of those weeks again. -Yeah.
-We'll do that. -Uh, is he --
Like, will they call us when he's awake?
-We can go down. Let's go get our baby.
You want to go get our baby?
-No, we're done with the oncologist,
and we're coming down now.
-God, I just thank You for Joel and I thank You for his life
and I thank You that You have been assisting in our life.
And, God, we just place him in Your hands right now,
and we say You -- You be his God.
You rescue him. In Jesus' name. Amen.
You have to pray in the elevators,
'cause you can't just pray in the hallways.
You'd be a crazy person. -That's true.
-[ Chuckles ]
-Hey, buddy. -My Joel.
-You are very sleepy. -You're still so sleepy.
-[ Chuckles ]
-[ Groaning ]
-[ Speaks indistinctly ]
-[ Chuckles ] He doesn't want to share you.
Thirsty? He slept hard.
Water. That's right.
-Our journey with Joel
has been characterized by a lot of minor miracles,
and I think it illustrates the journey that we're on.
You know, we're on this journey of living day to day
and worrying about day-to-day and taking things as they come.
-Like, this news doesn't change
the vision that we have for Joel.
Like...
This news is really hard, and it changes my life tomorrow
and it changes my life right now,
but it doesn't change what God's destiny is for Joel.
[ Horn honks ]
-[ Laughing ]
Elmo's nose sounds like a horn.
[ Horn honks ]
-We've learned pretty quickly
that, like, there's grace for today.
Like, we know we can handle today.
But as soon as we start going a week ahead, a month ahead,
what's it gonna be like for his birthday?
I mean, there just doesn't seem to be grace for next month.
There's grace for today.
So, we had an MRI today,
and they told us that Joel has a new tumor.
-Oh.
-I know that's kind of hard, huh?
And pray for him to be healed.
Does that sound like a good plan?
Well, do you want to pray for him with us?
Okay, let's do that.
-Dear God, please help the tumors go away.
-Before we really came to terms
with, like, "Joel could die; Joel could go to Heaven,"
you pray out of this fear.
You know, like, "God, please heal him,
because -- because I'm so scared."
And then it shifts,
and you're not praying anymore because you're scared.
Because if you can finally get away from that fear of death
and you can finally break free from that,
then you're just praying for God's glory.
-He has value because he's Joel.
He has value because of the love
of, like, me being able to hold him -- you know? --
and of that connection that we can have that only we can have.
And so I think that even if Joel doesn't change the world,
he's changed my world, you know, and he's changed me.
And we can have a beautiful life.
-[ Giggles ]
-Feed that guy real quick?
-[ Giggling ]
-[ Speaks indistinctly ]
-Bye! Bye!
Bye.
[ Bird squawking ] -Want to go play?
[ Gasps ] What's that?