-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?