Cancer is not child's play, but for children, it can be. | Simone Lehwess Mozzilli | TEDxSaoPauloSalon

Simone Mozzilli talks about how appropriate information can demystify cancer, engage patients in treatment and save lives, including hers. Graduated in Communication (FAAP), Design (Escola Panamericana), postgraduate degree in Information Technology (USP) and Integrative Medicine (Albert Einstein), she has worked for 10 years with technology and entertainment serving clients such as Apple, Disney and Sony. She had been volunteering with children with cancer since 2008 until she discovered that she had an advanced cancer in 2011. During her treatment, she noticed the difficulty in finding suitable materials that would engage the patient. So she decided to close her production company to open an NGO for Information Technology focused on Oncology.

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I work in advertising.

I have always worked with communication,
information technology.

But I also volunteered in hospitals,
working with children with cancer.

And I have been doing this for many years,
side by side with the children.

And, even with all my knowledge
in communication,

many times I was not able to explain
to the children what cancer is -

what the treatment, the protocols,
and the procedures are.

And they knew I had an ovarian cyst

that doctors called teratoma.

One day, one of them said,
"They open our head,

they open our belly to remove a tumor,
and you're not going to remove a cyst?"

Well, I had been challenged, right!?

I could have the surgery
in that same hospital.

I was already familiar
with the doctors, the nurses.

Then, I decided to have the surgery there.

I gathered courage.

I had never been hospitalized before,
had never been given a stitch. Nothing.

I went in for a simple procedure,
a two-hour surgery,

and I woke up 10 hours later in the ICU,

the same ICU I used to stay
with the children with cancer.

I looked down, and I saw
all these little tubes and straps -

(Laughter)

my belly all stitched up.

I called the nurse and asked, "Cancer?"

She said, "Yeah."

I asked her if I could call my parents,

and she said that it was
outside of visiting hours.

So I asked her to hold my hand
until I fell asleep.

I woke up later, in my hospital room.

I had cancer, metastases
and compromised lymph nodes.

I always told the kids,
“Do not Google this."

After all, it wasn't
the best place to search,

even when you are lucky.

So I looked for information
in reassuring places.

And I started researching
in hospital websites.

And the only information that was
“reassuring” to me at that moment

was that I was going to die,

because it was the most aggressive kind
of tumor, with little chances of cure.

And little by little I started to realize
the amount of information

which sometimes didn't help,
didn't make you want to engage.

And how are you going to make
someone engage

if oftentimes you are not even able
to pronounce the word "cancer" out loud?

I was bald

and the wig bothered me;
it was warm and itchy.

But my friends were donating
their hair to help me.

That was when I realized

the kind of information they got
about donating their hair to me.

Actually, the wig was not
because of me, but because of them,

as they couldn't stand seeing me bald.

With that, I started to see
a lot of other information

which I thought
were not the most appropriate.

When I walked into the hospital,
bald, the children said,

"Wow! You shaved your hair
so you could look just like us!"

I said, "No, now I am just like you!

I got cancer. I got it from you.

No! Calm down! You can’t get cancer. You
can stay close to me. You won’t catch it."

But the jokes caught up,

the kids started to talk
about a lot of things,

telling me about the procedures.

When I went to put the catheter in -

because I had done chemo before,
the first one I did intravenously -

I received a hospital kit.

And in that kit there was a bar soap,
a toothpaste and a toothbrush,

but also a shampoo,
a shower cap and a comb.

But I had no hair.

And this for me is information.

I started to photograph the procedures,

everything I was going through.

And I sent the photos to the kids,
trying to explain to them,

"Look, you'll go through this.
You'll go through that."

And what happened?

The kids started to give me feedback
on their procedures.

They would show me things,
would send me videos being punctured,

getting chemotherapy, and radiotherapy.

They showed me several procedures,
even some that I didn't do.

And with that, we were
moving forward, playing together.

But, we think that children
don't understand, right!?

We think that children don't know.

They know the protocol,
the name for the chemotherapy,

the procedures, all of that.

Sometimes parents try not to talk
about it in order to protect them,

but then you think, you will say,

“Chemotherapy is a heavy medication,
that's why the hair falls out."

Then the child goes with their mother
to the drugstore and the pharmacist says

that it is a heavy medication.

What will they think?
Their hair will fall out!

But, when we explained
that chemotherapy causes hair loss

because it kills the cells
that double rapidly,

but that not only
the tumor cells double quickly,

but the hair cells as well as,

they understood and said,
"Oh! It's working!"

And this began to engage the children.

And we started talking a lot
about the procedures.

Until one day, the doctors
started calling me,

“Si, there's a patient who will have
a catheter inserted. Can you come here?"

There I went.

"There is a patient who'll have his leg
amputated. Can you come here?"

And I'd say, "Doctor, I don't have
five organs, but I have both legs."

“So, come running!"

There I went.

Until the day I couldn't work
with advertising anymore.

I called the doctors, health professionals
and my creative friends,

and we decided to create an NGO.

So we founded Beaba.

It is called Beaba,
because it's the A-B-C of cancer.

What did we do?

Usually, people who give
information about health

are health and advertising professionals,

but you say that the information
is patient-centered.

But the patient is
to approve of it at the end.

It's patient-centered, they are involved,
but at the end of the process.

We've decided to put the patient
in the "middle" of the process.

So, we put the kids to work.

We spent a long time listing
what we thought we could improve,

the questions we had and what the doctors
said but we were not able to understand.

And with that, we illustrated
the most common terms

of the oncological environment.

And we illustrated all this
with the support of health professionals,

but with something very important:

sometimes things don't need an explanation
as for what they look like.

When you like someone,

and you write "I love you" and include
a heart, do you draw the ventricles?

I don’t think so.

So we started doing this.

And with that, the children began
to understand the processes.

From these terms, our first material
came out, which was a guide.

This guide is distributed
to children in treatment.

Unfortunately, we can only publish
around 2 to 3 thousand guides per year.

If there's a sponsor in the audience...

(Laughter)

There are 13 thousand children per year
diagnosed with cancer in Brazil.

What happened?

Hospitals began to use the guide,
they began to ask for it.

We're in more than 40 hospitals in Brazil.

Children abroad began to see it
and began to ask for it;

children from New Zealand,
Japan, from various countries.

And I'd say, "But it's in Portuguese!"
They'd say, "But we have a translator!”

And the guide is very requested
in the North and Northeast of Brazil,

because the children and their parents
are often illiterate.

Then the doctors ask for it,

and they trace the pages of procedures
the kids are going to undergo.

With that, we began to demystify
and engage patients,

and do several other actions.

Information, folks, is very important.

And a piece of information sometimes,
I mean, the information technology,

is not just, like, modern,
complex, 3D, robotics.

Sometimes information is a comb in a kit.

So, what do we say? What do we preach?

That you need to have
information for everything.

For example, I don't know if you know,
but when we plan an event,

bald children get many more presents
and attention than those who aren't bald.

But sometimes, the bald child

has already been treated
and is cancer free.

Sometimes the one that isn't bald
has cancer, as they're not under chemo.

They're in palliative care or don’t have
anything like that at that moment.

Sometimes, this happens
not only with the children,

but with society, in general.

When I was under treatment -

you have that thing with society that,
unfortunately, I'm in advertising,

and we know that, if we put a bald, sad,
depressed child, we'll sell much more,

we'll raise much more money.

But if you look at Beaba's website,
you won’t find any of this there.

And what happens when you are the patient?

Many times I was in my hospital room,

feeling weak, debilitated, and I received
these materials and I thought,

"Will I still get to this stage?"

And then I get phone calls
from parents of healthy children,

who call me and say, “Si, my daughter
is causing us a lot of trouble at home.

I want to take her to the hospital
to see what a difficult situation is."

It's okay for the mother to do this,

but has she considered
that inside that room

there's a child or an adult,
me, in that case -

who people can see
as they passed by the window,

to say, “My life is so good!”?

And in times like this, when we need help,
we need empowerment and self-esteem,

we only find information
that puts you down.

So I think it is very important
that we give some attention to that too,

not only for patients, but for society.

We create information
with all these people who help,

but also with a lot of love,

because we think it's very important.

I entered the hospital
to help some children,

they saved my life,

and, today, all I can do,

is to create information for us
to be able to save many others.

Thank you.

(Applause) (Cheers)