St. Jude Mom DeeAnna Janku Opens Up About Her Journey

Episode Transcript

Speaker 1 (00:00):
Well, wait until you hear from Deanna. Her little boy
Gideon was diagnosed with a very rare form of cancer.
Shouldn't even be alive. Well, she went to Saint Jude
and what a story. Keep listening, Deanna, It is so
good to have you on our podcast. We love having
our Saint Jude Research Hospital radiothon. We do it during

(00:24):
Christmas music, which a lot of people are like why
because it's filled with joy and the stories are stories
of hope, which is what the holidays are all about.
And I would love to hear your story. You being
a Saint Jude mom, tell us what journey you went on.

Speaker 2 (00:42):
Sure, So I first came to Saint Jude in twenty thirteen.
So my son was just four years old and or
three years old. I'm sorry, three years old, and we
had noticed a funny little spot on his face. It
was actually about this time of year and twenty twelve
that we noticed it. I was getting ready for Christmas

(01:03):
and I wanted Christmas pictures with my family. We have
five kids, and Gideon had a small little spot on
his face, on his cheek, and I thought it was
a wort, and so I was hoping to get the
work taken care of so that it wouldn't show up
in family pictures. But they tried to burn off the wort,

(01:24):
but it just came back a little bit bigger, kind
of crustier, funny looking. And so in February of twenty thirteen,
when we went back to the pediatrician for his while
child check up as he turned three, they discovered that,
you know, the work didn't look quite right, but they

(01:44):
wanted to send us to dermatology. They said, he'll have
more tools in his bucket to address this and you'll
you'll just have you know, a better experience over there. Well,
it was a cosmetic issue on a three year old.
I'm a busy mom with five kids, and so didn't
get right into the dermatologist. But in May of that

(02:05):
year we did make it in and the dermatologist said,
you know, I want to buy off see this, not
because I think it's anything, but because that way insurance
will cover the removal of it off. Okay, yeah, And
I was like, great, thank you to excuse me a
solid and helped me out in that way, and that
was great, and so really expected nothing to come of

(02:29):
it and didn't think about it again for the next
couple of weeks, the scart kind of started to heal
and I could see, nope, we didn't get it. All
the spots coming back again. I could start to see that.
But you know, besides being a little annoyed, really didn't
think much of it. And then the next thing I know,
the doctor's calling and he said that he was surprised,

(02:55):
but they ran the test twice, and unfortunately it came
back as melanoma, and.

Speaker 1 (03:03):
He was one three year old.

Speaker 2 (03:05):
At a three year old, he said, it just it
doesn't happen. It's so unusual for a three year old
to get melanoma. And so that's why he ran the
test twice. And he referred us to some of the
local children's hospitals. We live out in the Portland, Oregon area.
We have some great children's hospitals here up in Seattle.
All around, no one could help us. Everyone said, we

(03:28):
haven't seen melanoma on a three year old. One of
the hospitals even said three year olds don't get melanoma.
The test has got to be wrong. Just go home
and don't worry about it. I couldn't do that. I
had one doctor telling me it is melanoma. I had
another doctor telling me it can't be based on his

(03:48):
age alone. In fact, that doctor even looked at the
pathology of his tumor and said, you know, if I
was looking at this same tumor on a sixty year
old man, I'd have no doubt we're looking at melanoma.
But it's just not possible on a three year old.
And I said, well, that made me feel less comfortable,

(04:09):
not more comfortable, and so and so we heard about
another test that was being recommended by the very first
lab that I'd looked at it, and it was at
a place in California actually called UCSF, and all they
had to do was turned down or send down our

(04:30):
like tissue sample, and they would get a result. It
would not only tell us whether or not it was melanoma,
but it would stage it for us. It would tell
us how far advanced it was. And so what they
actually said was that, you know, it would come back
and it would show basically copy number changes in the
chromosomes between the healthy tissue and the tumor tissue. And

(04:53):
I thought, this is kind of cool science stuff, you know,
And they said, what we'll see is probably one or
two chromo zonal copy number changes and that will tell
us that it's cancer. But if we see you know,
two or three, it'll be a little bit more advanced cancer.
And that's that's what we're you know, probably expecting at
this point. And if we don't see any, it's not

(05:17):
cancer at all, so we'll we'll know definitively. So we
waited on pins and needles for those results, and we
got them, and I'll never forget. It was a Thursday,
October tenth, twenty thirteen, and the doctor from UCSF called
and said, you know, we have the test results back,

(05:38):
and I'm looking at the results of a child who
should not be alive and will not survive. He has
nine chromosotal copy number changes. And I said, okay, and
he said, and one of those copy number changes is
a deletion of a particular gene that means this is

(05:59):
going to continue to grow and grow in such a
way that you know, there's no checks and balances, and
so basically children with this deletion and this many copy
number changes do not survive. It's a very particular subtype
of melanoma. So I asked, what do I do? Where

(06:21):
do I go? And he said, if it's my kid,
I'm going to Saint Jude. Wow. And so I googled
Saint Jude and learned that it was in Memphis, Tennessee,
not close to home. And I also stayed up all
night that night, Thursday night, looking for plane tickets to

(06:41):
get to Memphis, and we didn't even have an appointment yet.
I didn't know if we'd get an appointment. All the
plane tickets were expensive for last minute, and again I
didn't buy them because we didn't have any appointments. We
didn't really know. It was just something for me to do.
The next morning, though, at seven thirty in the morning,

(07:03):
my phone rang and it was a woman with a
sweet Southern accent calling from Memphis and she said, this
is I Am from the Saint Jude Travel Office. Can
y'all be here Monday? And I said, yes, we can
be there when you know? Is Memphis the best airport
you know? And she goes, no, honey, you don't understand.

(07:27):
At Saint Jude, we bought tickets for all our patients
and I said, I said, oh, well, that's really great,
but my husband and I might make too much money
to qualify for whatever special program you have going. And
she said no, honey, you don't understand. We do this
for all our patients. I figured it would all settle

(07:47):
in the dust and it would catch up with me,
but I didn't. It didn't matter at that point. I
just really wanted to get my son to Saint Jude.
So she fed ex us the tickets, because back then
that's how they were done. They were paper tickets that
were FedEx to us. And she even sent us an
American Express gift card to pay for our luggage, so
not just our travel, but even our luggage. And then

(08:10):
when we arrived in Memphis on that Sunday night, I
remember walking through if you've ever been to Memphis, right
about the escalator going down into where you get your baggage,
there's a huge sign that was an archways at Saint
Jude Children's Research Hospital, and I had a cutout of

(08:32):
like the campus buildings, and I remember seeing that sign
and breaking down for the first time and thinking, my
son is sick enough that we're at Saint Jude and
my husband is over two thousand miles away with my
other children. I had a six month old at the time.

(08:53):
I passed her off through security in the Minneapolis airport
on my layover because because my husband needed to work
and we had to figure out what are we doing
with the rest of the kids. And you know, while
getting in and I go to Memphis and so, and
we really didn't know what to expect. But we get
to the bottom of the escalator and there's somebody waiting

(09:15):
there with a placard telling us that they're the shuttle
to take us to the hospital. And we walked through
the bright red doors at the front of the hospital,
past the Saint Jude statue, not really able to take
it all in in that moment because we are just
I'm nervous. My three year old is oblivious. He had

(09:35):
spent the plane ride playing with his little hot Wheels cars,
his favorite toy. Some genius friend of mine had made
him a little pouch that rolled out a piece of fabric.
He could tuck seventeen hot wheels in it, and he
would play on his little fabric track the entire plane ride.

(09:56):
But we sit down across from the person and registration
and she could see I was nervous, and she took
my hand and she said, it's gonna be okay. You're
at Saint Jude. And for some reason, a moment before,
I'd been so upset by the fact that we were
at Saint Jude because it meant that things were so bad,

(10:18):
And in that moment, something just changed for me and
I knew we were in the right place. We were
in the best possible place for Gideon, for you know,
him to get treatment. And I had hoped that they
were going to know what to do, and so it
was they did. They knew what to do. The next

(10:41):
day we met our oncologist, doctor Papo, and telling me
everybody needs to doctor Papo in their lives. Sweetest man.
He kisses all of his patients on the cheek. He's
Chilean and so that's his culture and I love that
about him. But he knows what he's doing, and he
instilled then that's the confidence that he knew what he

(11:03):
was doing and he had a plan. Every other child
that had ever had this diagnosis had been treated with
a particular chemotherapy, but it was not changing the outcomes.
They were still passing away, losing their battles. He said,
I don't think that chemo works. And when it does work,

(11:23):
when somebody survives, it's because they have a different type
of melanoma than what your son has, and I don't
even think it's effectual on that we need to stop
giving this chemo to children because it was designed for adults.
And so he was willing to break the norm, even
though the normal thinking from everything I'd read had said, well,

(11:46):
we give the chemo because we don't have anything else
we can do for these kids. And he was like,
but if it's not going to work, what's the point.
And so instead they did really radical surgery on his cheek.
They removed about two and a half to three inches
of his cheek vertically by an inch and a half
wide and removed the full thickness of that in order

(12:10):
to get every last bit of melanoma out of that cheek.
Other spots would pop up, and he ended up having
a total of thirteen surgeries at Saint Jude to remove
tumors in addition to pastic surgery, because Saint Jude didn't
want to leave them disfigured, and so even though they
weren't sure what survival looked like for him, they did

(12:31):
plastic surgery. So the tumors just kept coming week after
week or month after month really for the next couple
of years. But then they just stopped coming. And Gideon
is now fourteen and he's a freshman in high school,

(12:52):
living his best life. He's on a student government. He
loves he just loves life, and he's so grateful. When
he talks about Saint Jude, he talks about just how
grateful he is for every single donor that has given.
He understands how it works, and he's he says, you know,

(13:13):
to donors. I've heard him say to a group of donors,
if it weren't for you, I wouldn't be alive today,
because he knows that that research, the work being done
at Saint Jude that saved his life is only because
of those that have given generously.

Speaker 1 (13:29):
And Deanna, you're in Oregon, right, Yeah, yeah, So it
doesn't matter if you're in Houston or New York or Oregon,
because the protocols are shared at your hospital's there if
the child is lucky enough to get to. I swear
it's the most joyful place. Yes, it's amazing, the most

(13:52):
incredible place that I know. Once you're there, when they
grab your hand and say it's going to be okay.
I mean even sometime a child doesn't survive, but it's
still going to be okay, yeah, I mean, it's just
it's in a magical place, what they do there and
the people that are there, and the fact that they
share these protocols that are outrageous because they're not the norm,

(14:17):
and then we all get to benefit from And it
wouldn't happen without the support of those partners in hope
that donate just a little bit. Might not ever even
meet these kids. But you never know, so we might
be helping out a friend, a family at some point
in the future, or a distant person in Oregon who
had a little, beautiful little boy who kept having these

(14:40):
crazy little tumors grow.

Speaker 2 (14:42):
Gideon would set down his cars, his Hot Wheels cars,
into the wagon of another patient and just walk away.
And he did that one by one until he had
given away all seventeen of the hot Wheels that he
had taken with them the day before his really big
surgery to take. A couple days before his big surgery

(15:03):
to take the tumor off of his cheek, I had
asked for permission to go home just to hug my
other children, say hello to my husband, kind of get
my bearings, because we knew recovery would be pretty long
and we would need to stay in Memphis for that
period of time, most likely missing all the holidays with

(15:23):
our family in twenty thirteen, and so he reloaded his
hot wheels and once again gave them all away, And
so we did get to come home on December twenty
third and get to spend Christmas as a family. We
were back in Memphis in January for more surgery, but

(15:46):
we did get to be home for Christmas. But later
in twenty fourteen, when he had his wish, he wished
that he could give a car to every child he met,
and so he was given over seventy five hundred hot
wheels and he has, one by one given carried them
to Memphis and given them away to children pretty much

(16:10):
one by one. They're at Saint Jude throughout the years.
And so there is a story. If you look at
Saint Jude dot org slash inspire and you just type
in Gideon, you can find the full story of him
giving away his hot wheels cars. But he's just so generous,
and it reminds me what I was saying is of

(16:30):
the generosity of the donors. Each one gives something, and
you know the ask during the radiothon is nineteen dollars
a month on your debit or credit card. Right, like
to give regularly, give monthly, And I think that that
is so like Gideon's hot wheels. Right, You're giving something

(16:50):
small to someone else with that has nothing to offer
in return. You're doing it simply because it brightens their day.
It gives hope. And that's why we call them partners
and hope, because they really are. You know, when I'm
out and about and I see somebody wearing the shirt
Saves Lives, I'm like, hey, you know you're doing that

(17:11):
for us. When we're out shopping this time of year
and we go to one of our thanks and giving
partners that has up the signs and is accepting donations
at the register for Saint Jude, I think these people
are here for us. And it's not uncommon for Gideon
to go up and ask the manager if you can
go on the intercom and say, I love that, So

(17:33):
you know, it's just's He totally recognizes the generosity of
the donors that have made his life and journey possible.
Because yes, Saint Jude shares the protocols with local hospitals,
and I know that if somebody were to be diagnosed today,
they would get different care at the local hospitals that

(17:55):
couldn't help us in twenty thirteen. They could help us now.
But we still go back to Memphis. And I also
know that even though they can get that life saving
care anywhere, what we received in Memphis was just above
and beyond. Doing plastic surgery on a three year old
that we didn't know if he would live is something

(18:18):
that happens nowhere but at Saint Jude. And because we
did not have to worry about would insurance cover it?
And to think that that's the question that started this
whole journey, is that insurance wouldn't cover if they did
a biopsy and they thought it was a wort, which

(18:38):
they did, but they would because they just, you know,
in order to get insurance to cover it, we did
a biopsy, we removed it. And so that's where we started,
and we ended up at Saint Jude, where that question
doesn't matter. They're going to do what's right for the patient,
not to satisfy any insurance come unbelievable or even pause

(19:02):
to think about can the family handle the burden of
this costs if it's what's right for the patient this
is what we're doing.

Speaker 1 (19:09):
They do it, and I'll tell you. I just want
to show you, Deanna these I'm wearing my my J
Crewe jeans because J Crew big donors.

Speaker 2 (19:17):
To Yes, they are big things in giving partners and
that's amazing and we're so thankful.

Speaker 1 (19:25):
Yeah, what a story. I am so I knew you'd
have an amazing story just to encourage people. Just do it.
It'll make you feel good. It's like giving away a
hot wheel car. You don't even know the joy that
it will bring to some someone else. And the fact
that no one ever sees a bill. What calm and
peace that brings to a mom who's afraid and a

(19:47):
dad it.

Speaker 2 (19:48):
Right does and you know it's just in the moment,
you know that that's what you can do. And I
remember the first time that we were able to share
that with another parent. At Saint Jude. We were in
line for the pharmacy to pick up medication after one
of Gideon's surgeries, and Gideon was sleeping in his wagon
as he was groggy waking up from surgery, and the

(20:10):
patient in front of us had obviously just had a
brain surgery. The staples on his head, the freshly shaved area,
and his mom and dad were there, and they still
had all of their luggage with them. So they were
just arriving at Saint Jude and mom and dad started
bickering a little. Did you bring the insurance card? I

(20:31):
can't believe you forgot the insurance card. We need it.
How are we going to get our medica? They're not
going to charge straight amount. I don't know what to do.
We'll put it on the credit, you know. They were
bickering back and forth, and I reached out and I
touched the dad's elbow and I said, you're at Saint Jude.
Everything's paid for. You don't need your insurance card. And

(20:55):
he said what? And I said, they won't ask for it.
Just give me patient's name. They'll have the medication for
you and there will be no charge. And he literally
fell to his knees sobbing. Oh, just of the relief
and that moment of realizing it didn't matter. In that moment,

(21:16):
they could just focus on their little one who had
just had brain surgery.

Speaker 1 (21:21):
I'll never forget a dad saying I'll sell my house,
I'll do whatever. And then they arrive and they're like
you don't have to do any of that. Yeah, it's
that is because of the generosity of complete strangers all
around the world who donate. And that's why we do
our Radiothon to give our listeners a chance to bring
blessings to so many others.

Speaker 2 (21:41):
And I think that's how you feel, right when you're
diagnosed or someone you know is diagnosed and you just
don't know what to do. We're not doctors. We can't
fix it. But what can you do? You can donate
nineteen dollars a month. You can become a partner and nope,
that is something you can do, and so do it
because you can, and it does save a life and

(22:04):
it does make a difference. And then you're a part
of that moment when the dad here's you know, you're
not going to have a bill when you get up
to the pharmacya window.

Speaker 1 (22:13):
You're going to be our motto, do it because you can,
just do it because you can. Yeah right, Yeah, Well,
we hope you and Gideon and all your crew have
an amazing Christmas and holiday season. And what a story
you have to tell. It's just incredible. You're a wonderful
ambassador for Saint Jude and now I feel like everyone's

(22:34):
going to want to go get their kids some hot
wheel cars in honor of Gideon.

Speaker 2 (22:38):
I love that that is just so cute. I love
that he loves the hot wheels.

Speaker 1 (22:42):
So thank you, thank you for your time, the best
of luck to him in his career at school. It
sounds like he is just a fine young man.

Speaker 2 (22:49):
He is.

Speaker 1 (22:51):
Thank you, thank you, so nice to chat with you.

Speaker 2 (22:54):
You two, Bye bye, Happy

Speaker 1 (22:56):
Holidays, Bye bye.