>> You go through life with all kind of challenges.
The biggest challenge that someone's gonna go through
is will I be alive in a year.
>> Dear Hannah, in August 2016, day one of treatment.
You have a long, difficult road ahead of you,
there's no doubt about it.
Remember in the darkest times,
your family and friends love and support you so much.
I was diagnosed with a genetic disorder
called neurofibromatosis type one
when I was very little and my doctor's have been
following me my whole life.
>> We found out when she was a year and a half old
that there was a complex tumor growing in her chest
that called a plexiform tumor that about half
of people with NF-1 have.
>> Neurofibromatosis type one is a neurogenetic condition.
If can involve tumors of the deep nerves
that can result in sensory disfunction or motor disfunction.
It can involve tumors on the skin that cause disfigurement
and it can unfortunately result in life threatening cancers.
>> As Hannah got older, her MRIs had shown
that the tumor in her chest continued to grow.
>> Last May I had a scan as part of a study at NIH
called the Natural History Study.
They found out that the one in my chest,
which was the one they had been monitoring for years,
had turned cancerous.
>> Given how active it was, it was probably gonna need
to be removed for her safety.
NIH felt that Hopkins was gonna be the best
place to have it done because of Dr. Belzberg being there.
>> Hannah: Hannah, you should be thankful your cancer
was caught in the early stages of malignancy
and that you're being treated at one of the
best hospitals in the nation.
>> Before we worked with Dr. Belzberg,
we were connected through the NF clinic
to do additional scans to get a little
more information about the tumor and its characteristics.
>> Time is always of the essence when we're
thinking about a malignancy.
We needed to identify who needed to be involved in her case
and get her the tests and studies needed
so that she could begin treatment for this malignancy.
>> This was an exceedingly complicated tumor.
Hannah's tumor starts high up into the neck
and then extends under the collar bone or clavicle,
goes down in the chest and sits on top of her heart
and the great vessels that exit the heart.
The tumor that's malignant is right here.
The heart is sitting here, the great blood vessels are here.
This is one of the blood vessels coming here
going right through the tumor that was heading
up towards the brain.
>> If he's not able to isolate that particular artery
well enough, she would probably die
on the operating table.
>> It became very clear that for Hannah
the only realistic approach to control her tumor,
to give her a hope for a good life,
was to go in, get an aggressive surgical resection,
remove that tumor in one piece with a negative margin.
>> He knew it was a fairly large tumor
and he said the strong likelihood is
that if I can get that whole tumor out in one piece,
she's gonna lose the use of her entire left arm
just because of the other nerve that's gonna have
to come out in order to get that out in one piece.
>> As the surgeon you're making decisions as you go,
understanding everything has risk
and everything has benefit.
Once we got started with the surgery,
we really worked very well as a team.
We have a vascular surgeon, we have a chest surgeon,
and we have a neurosurgeon.
Some of the best people in the world
in each of these disciplines.
During the surgery I know that we had to manipulate
the nerves a fair amount to get the tumor out
and that was a reasonable risk to take
for the pay off of having the tumor out.
But I really did not know for sure
the impact of that until I could check Hannah,
until she was wide awake.
>> They let us into see her in
the pediatric intensive care unit when the surgery was done
and she was laying there in the bed
with all the nurses crowded around.
>> I was able to move the fingers in my left hand.
Everyone was like, I can't believe it,
you're not supposed to be able to do that.
>> Her hand and arm was working perfectly.
That was a wonderful moment.
(laughter)
>> I'm saying it works great.
>> Patients with neurofibromatosis
face so many challenges in life.
It's astounding.
It amazes me how resilient they are
and how they are able to maintain
a positive outlook on life.
>> That really is exemplary of our patients with NF-1.
That they take on tremendous challenges
that would humble any of us and march on.
>> Hannah is a amazingly strong person for her young age.
She was truly inspiring.
>> That most important thing to remember
is it's not about when you celebrate
but that you get to spend time with the people
who love you the most.
After a hurricane, there is always a rainbow.
Love always and forever, Hannah three months post treatment.
(inspirational music)