- Hi Vivian.
(baby laughs)
- [Narrator] This is Vivian Rose Weaver.
Up until the age of three, she lived a normal life.
Then, everything changed.
- I was outside working one day and I heard her say,
"My head hurts."
(Father reads)
- [Narrator] That's when her father, Simon,
an ER doctor, sensed they needed to get Vivian
to the hospital right away.
- And it dawned on me at that moment that
she had said that several times.
I examined her and I noticed that she had two
separate cranial nerve deficits. In that instance,
sitting on the lawn at our house, I knew
that there was something structurally wrong in her brain.
(gentle guitar music)
- [Narrator] The diagnosis was grim.
D-I-P-G.
A rare and inoperable brain tumor.
- That was, uh,
that was not...
That was a difficult moment.
- [Narrator] In an instant,
the Weavers faced a new reality.
- I just, I remember just feeling like I got hit by a truck
or something and just holding my head in my hands
and wondering how can this possibly be happening.
(sniffs)
- [Narrator] D-I-P-G is a tumor on the brainstem.
It grows like roots on a tree
interfering with basic body functions like heartbeat,
breathing, and balance.
Those roots make it impossible to remove with surgery.
200-400 children between the ages of four and 11 are
diagnosed each year.
50% will die within nine months.
98% will die within five years.
Radiation is the only known treatment
and it can't cure the tumor,
but only temporarily slow its growth.
- Most of the times, kids will present
with a very short story, meaning,
they were fine a week ago.
And they will come to the hospital much different
than they were four or five days ago.
- [Narrator] Vivian started losing her balance,
struggled walking and had problems with her eye movement.
Almost a year after she was diagnosed,
Vivian is due for a follow-up MRI.
She's already gone through six weeks of radiation therapy
and a number of trial treatments.
Today, Vivian's doctor will see if those treatments
are still working.
(father speaking to Vivian)
- [Mother] It had always been, like, as long as she doesn't
go into progression, there's more hope.
- [Narrator] But the doctor didn't have good news.
- So, this is the area that we were kind of...
This is where I think they were subtly
a little different last time.
So, that, that has just expanded,
and that's kind of the volume question.
So, this gets some - there's a lot more contrast
up here so -
(Mother sniffs)
(Doctor speaking softly)
We're pretty clear, like, pretty clear like this
looks like tumor progression.
- And I've been thinking, like, what do we do
when she goes into progression?
At what point do you go back to radiation?
And if she is in progression,
then, you know, is it worth taking that risk?
- I don't think anything that we're doing has been harmful,
but there's the possibility
that you could have negative outcomes with things.
That's never contemplated.
(gentle music)
- [Narrator] The Weavers decide to forge ahead
with re-radiation therapy.
This will not offer a cure,
but may control Vivian's symptoms.
A radiation mask is made
to hold her head in place during treatment.
- A second course of radiation treatment can be beneficial,
Just as a family again is kind of adjusting
to the reality of their child's tumor progressing,
and probably the end of life coming.
- The very sobering reality is
that they're willing to do something
that they know is harmful and cancer-producing,
but none of these kids will live long enough
to see those cancers develop.
- [Narrator] After the final radiation treatment,
Vivian gets to ring a bell to signify that she has finished.
(bell ringing)
(clapping and cheering)
- It's the last hope of doing anything to prolong her life.
- As parents, it's very difficult
to sit back and just accept
what we are told is our fate.
- [Narrator] After radiation, the only options left
are experimental and those have little evidence
to show that they work at all.
This is partly because funding
for pediatric cancer research is less
than for other types of cancer,
and even less for DIPG research.
- [Mother] Vivian is the very first pediatric patient
in the world to wear the Voyager.
- [Narrator] The Nativis Voyager is basically a headband
that emits ultra low frequency waves.
These electric impulses are supposed to do
the same thing as chemotherapy, but without side effects.
- Every step that we've taken to do things
that are experimental, we take for Vivian,
but also, with the thought of all of these other kids
that could potentially benefit
(sniffs)
if it works.
(gentle guitar music)
- [Narrator] Outside of the hospital,
the Weavers enjoy breakfast together,
making the most of the time they have with each other.
Vivian's parents signed her up for occupational therapy
where she is able to play and have fun.
[Male Voice] Strong.
I am strong.
- [Narrator] This jungle gym of fun activities
is designed to help preserve Vivian's motor skills.
- [Therapist] And she gets it in there, yes!
All right.
Go, get back on.
I appreciate how hard the family has worked
to do everything for Vivian.
I just want to be
and stay
unreasonably optimistic
for the family that things will go well
and use those Just Right Challenges for Vivian
to maximize her function as much as possible,
so she can be successful and have fun.
(crowd chattering)
- [Narrator] Every year, in Hood River, Oregon,
a local ministry called Young Life
hosts a father-daughter dance,
a continued tradition for the Weavers.
It's a highlight of the year for Vivian.
Dressing up with help from her mom and sister
is, by far, Vivian's favorite part.
- Let me see.
Can you do a spin for me?
- Hey.
They're strong for me.
- Are they going to be good for dancing?
- How about that one?
Every year she says, "Poppy, you have to dress fancy,"
and she tells me what suit I can wear,
and each year it's been the same suit.
(camera clicks) - Cheese!
- [Photographer] Right here, Vivian.
Perfect.
- I think the biggest thing is, you realize
only in retrospect, that you take some things for granted.
I think our desires for her are the same
as every other parent.
Those hopes and dreams for her don't evaporate
in a moment because she's suddenly ill and has this tumor.
So, we cling to those things, however unlikely they are,
but continue to wish the best,
best for her and the longest life,
and the fullest life for her.
- We know that God has a bigger plan for us
and for Vivian than just right here.
(Mom sings quietly)
(singing)
Close your eyes.
(singing)