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The Olivia Caldwell Foundation

– Your support
helps us bring you programs you love. Go to wyomingpbs.org, click on support, and become a sustaining member or an annual member. It’s easy and secure, thank you. – The tragedy of a
childhood brain tumor didn’t allow precious
Olivia Caldwell to see her second birthday. Almost immediately though, her mother, Katie
Caldwell-Burchett, began working to find
life-saving research to find a cure for
pediatric brain and other childhood cancers. Next on Wyoming Chronicle, the incredible story of The
Olivia Caldwell Foundation, and the Wyoming influence
on Dr. Nick Foreman, and his life-saving work at
Children’s Hospital, Colorado. (inspiring music) – Funding for this
program was provided by the members of the
Wyoming PBS Foundation. Thank you for your support. – It’s our pleasure on
Wyoming Chronical now to be joined by Katie
Caldwell-Burchett. Katie, welcome and thank
you so much for joining us. – Thanks for having me. – You’re sure welcome, you
describe yourself as a wife, and a mother, and
a cancer advocate. And we’ll get to the cancer
advocate in just a moment, but first, tell us about
when you became a mother. – I became a mother to my
twins, Wyatt and Olivia, they were born a
little bit early, and they made me a mom, which was the most beautiful
thing in the world. But when my kids were
about four months old, my daughter was
diagnosed with cancer, which changed everything about how my motherhood was gonna go. – And it took you a
little bit of time to get that diagnosis, and we want to talk about
in just a little bit, what happened after
Oliva passed away. But you had a battle until
almost her second birthday? – Yes, we did. So she was diagnosed
at four months old, and that was after
months of knowing that something was not
right with my little girl. She never was
developing the same way that her brother was. Her infant startles returned, her eyes were bouncing
back and forth, she slept all the time, didn’t seem like
she could see me, and it was so frustrating, because I would call her
pediatrician and I would say, “I think something’s wrong”, and it was always just, “Oh well, it’s because
she was born prematurely.” or it was because she has
acid reflux, or something. And it wasn’t until she was
having full-blown seizures, that we were sent down
to have an MRI done, and realized that she
had a massive tumor in her brain and
going down her spine. – And so you immediately
started treatment, here in Denver, at Children’s
Hospital, Colorado? – Yes.
– What did that entail? – So it went on for
about 16 months, she had two different
battles with cancer. So the first bout, she battled for
about seven months, went through very
high-intensity chemo. We lived in Denver
every third week while she had three
days of chemo. But the cancer did go away. – And you were in
Rawlins at the time. – We were, yes. And then just a
couple months after the cancer went away, it came back with a vengeance. – And you thought for
that short period of time things were gonna be okay? – Yeah, we thought so. We thought we had
gotten through it, she was gonna be okay, it was a very treatable
form of cancer, but the scary thing is
once cancer comes back, it’s usually very,
very hard to treat. It’s mutated, it’s not going
to react the same way again. And so hers just exploded, and we had about four months of additional treatment, and it went very, very fast, when she passed away. – And she passed
away at 20 months? – She did, yes. – I’m so sorry for that.
– Thank you. – But what is so
amazing to me is, almost immediately, you
decided that her legacy would not be in vain.
– Yes. – You started the Olivia
Caldwell Foundation. What is that? – So the Olivia
Caldwell Foundation was founded just right after
my little girl passed away. I had been her advocate, she had been my everything for her entire life, but especially those 16 months that she battled cancer.
You know, I was with her for every single
chemo treatment. I did all of her care, I was a stay at home mom, and when she was gone, I could not just turn that off, I had to do something to be able to remember her, to make sure her
battle was not in vain. And so the foundation
was something that just kind of came to me one day, and I decided to jump
in with both feet. – That is something you
had never done before? – It is not, yeah. – How did you learn to do that? – Honestly, I bought “How To Run a Nonprofit
for Dummies” books. – So they really make
a book with that title? – They sure do, yes. (laughing) – And you just started reading? – I started reading. So during that time when
Olivia’s twin brother napped, I would read those
books and highlight, and think through everything, but I really just jumped in. With the first board that I had we kind of learned on our feet, and just got going. – And before we get into that, you had told me
earlier that your son, who wasn’t yet two, almost understood when
Olivia passed away. – He did, yeah. With them being twins, they always seemed so connected, they seemed to know what was going on
with the other child. Even though they were babies. My son, the night
that she passed away, wasn’t feeling well and
went to bed really early, and he was sound
asleep at the moment that Olivia took
her last breath, and when she did, my son cried out from his crib, and he never looked
for her again. Which was amazing,
because prior to that, the first thing he did when
he woke up in the morning, was where’s my sissy? And he would go and he
would bang on her door to wake her up. But he knew, he’s always known that she wasn’t here anymore. – So you started
working on a foundation? What was your initial goal? What difference did
you want to make? – We wanted to help fund
pediatric cancer research. One of the things
that we didn’t know, until I had a daughter
who was sick with cancer, was how prevalent cancer is, and how severely
underfunded it is. So once you found
out about that, it’s like, well okay, I need to do
something about this. And so we anticipated that
we would never be able to raise very much. We thought “Oh maybe
we can fund one project “Here or there every year.” never imagining what
it could grow into. – You had written one time, “That your daughter
should be here. “But she isn’t.” Your work already has
made a difference, tell us what’s happened. – So one of the really
amazing thing that’s happened, is that they actually found the cure for my
daughter’s cancer. I got the news this last year, actually on the of
the day I was told she wasn’t going to make it. That they now, if she
was diagnosed with the same cancer today, would be able to save her life. And that was using the funding that we gave for that
research project. – So I should tell our viewers that you have raised well over three hundred thousand dollars, but it’s just not that, you’ve been able to
leverage that money. – We absolutely have, so we decided it
made the most sense to fund one research team. Because otherwise
if you get into having people apply
for grant funding, your money becomes
so spaced out, it can’t make as
big of a difference. Where we can give
one large check to one research team that
we really believe in, who is one of the top
pediatric neuro-oncology labs in the entire United States, if not the world. And we can give them this
money and say go run, you can use your brilliant minds to go down the avenues
that you want to go down, instead of us making them go through the ground
process every year. – And we’re here in the lab at the University of
Colorado, Children’s, what do you feel
when you come here? – It’s amazing, you know, I come here at least
a couple times a year, and the amazing part
of being here never, never goes away. Every time I walk
in and I realize that there are these
incredible people who are here working
every single day trying to find the
cure for these kids who desperately need it. – You raise money, you work hard at raising money. What are the challenges
you encounter in Wyoming, and doing what you’re doing now, you live in Casper? – Yes, we do. So we relocated the
foundation to Casper, almost five years ago, so just really shortly
after we had initially founded it in Rawlins. And the challenge is
that there are so many incredible nonprofits
in the area, so you’re fighting for funding, and everybody has
a worthy cause, and you have to prove why yours is worthwhile to also support. So that’s one of the challenges, but we also have such an
amazing giving community in Casper, and in Wyoming, that we’ve found that we
are very well supported, and people have really
bought-in to our mission, and what we do, and they’re willing to help. – How do people react when
you tell them Olivia’s story? – So a lot of times
there’s tears, very often I get hugs and tears. It’s a sad story, but it’s not an uncommon
story, unfortunately. There are a lot of our
local children in Wyoming who’ve had cancer, and many of them
have not survived. – Was it hard for you, being in Rawlins, not central to this
wonderful hospital and research facility? That had to have been difficult. – It was very difficult. It was very difficult, we spent so much of
our time on the road. We were traveling constantly. You know, we had support, we were able to make it work, but still, we were out
of work every third week, there were times that
we were down here for three weeks or
a month at a time, if she was hospitalized, when she was newly diagnosed, when she was diagnosed again. So you’re living in
hotels with your family, you’re living in condos, you’re packing up
everything that you own, there’s no stability there, in a time that’s already
incredibly stressful. – You managed
through that process. And you want to make it, one of the things you want
to make a difference with, with the foundation maybe, is having more
clinics in Wyoming, and maybe even Casper? – Yes, so one of the
really exciting things that we have been working on, is actually opening a pediatrics specialty
care clinic in Casper. So it would be for all
of the state of Wyoming, it would bring up
specialists from Denver on a regular basis, to see kids where they live. – And maybe this will not
just address childhood cancer, but maybe other
diseases as well. – Yeah, they’re talking about pulmonology, cardiology,
endocrinology, eventually we’d really like to be able to serve
a lot of children. – Katie, what advice
would you have for parents that have endured
what you have endured? It’s impacted your life, impacted your marriage, what would you tell folks that are really
wrestling now maybe, with something in
their families? I would say just
to take the time to enjoy what you
can about your life. Some really, really sad, horrible things
have happened to me, and to my family. And losing my daughter
was a terrible thing, but I’m really happy
that I took that and made it into
something positive. I get to keep being her mom, I get to make sure
that her name is known, and it gives me purpose. It makes it feel like what
happened to my little girl was not in vain. And it helps me so
much with my grief, because I have
somewhere to channel it, that’s not a negative place. – And this happened
a few years ago, and yet still, you do have grief that you have to deal with. – Yeah, it never goes away. You know, the cycles of
grief are a real thing, it’s not, you don’t go
through them one time, and then you’re done
and you’re okay. It’s a constant thing. There’s so many anniversaries, when you have a sick child. You know, you’re looking
at their birthday, for one thing. And they’re not here to
celebrate it with you. – And you celebrate
it with Olivia’s twin? – I do, yes.
– Still today. And we still acknowledge
her on her birthday, but there’s so many
more anniversaries that aren’t pleasant, you know? The time she was diagnosed
with cancer the first time. The time she was
diagnosed the second time. The day she died. The day I found out
she was going to die. These are things that
you live through, year after year, after year, and you just learn, you have to learn how
to take those days, and to take care of yourself, and know that they’re
going to be sad. – If this is too
difficult, let me know, but I want you to
share with our viewers, how you managed, when you learned that your child wasn’t going to make it. – Oh it was devastating. I think I went into just a, it was not a real place for
me at that point in time. I knew that she was
going to pass away, but I don’t think I
fully accepted that for quite some time. I was trying to hold it together for my husband, for my son, and I don’t think I really,
really dealt with the fact that my daughter
was going to die, or that she had died, for a couple of years. – You were in Hospice
services at the time? – Yeah, so I was
fortunate enough, one of my board
members actually, at the time, she
was Olivia’s nurse, and she acted as our
Hospice nurse at home, because otherwise there is
no Hospice care in Rawlins. We would have had to
be at the hospital, or I would have had to
do her Hospice care. – Tell me more about the
people who serve you, with you, on the Olivia
Caldwell Foundation board. I have a phenomenal
board of directors. Some of them are relatively new, some of them are brand new, and some have been
with me the whole time. So the board member
I just mentioned, she was a founding board member, stepped right in, and has been with me for
almost all six years. But there are leaders
in our community, most of them have never
been personally touched by childhood cancer, and yet they are huge advocates, they work so hard, in addition to their
powerful careers, they give their all. – You had mentioned earlier, that perhaps, if
Olivia were born today, she may have survived
the cancer that she had? – But you have learned there
is so much more work to do. – Absolutely, the
work is far from over. They have found cures to a couple different
types of cancers, but there are so many more, there are thousands more
that are not curable yet, and there are some that
are at zero percent. It’s a zero percent
survival rate. And when you look
at it that way, there’s just so much more that has to happen. We are not done. – In just a moment
we’re gonna visit with a doctor who treated Oliva, Dr. Foreman, who you still have a great relationship with today, in fact, this lab is
here because of him. – Yes.
– Introduce him for us. So Dr. Nick Foreman
was Olivia’s doctor. He took care of my baby
girl for 16 months, he fought so hard to
be able to save her, and we have continued
to work with him. So he actually established the pediatric
neuro-oncology department at Children’s
Hospital, Colorado, and has this amazing lab that’s one of the largest
in the United States, and he works so
hard, so tirelessly, for all of his patients, for all of the kids
that he doesn’t know, who’s lives he’s trying to save. He’s an amazing man. – Katie, it’s just been
great getting to know you, and your staff, Summer, who’s with us off-camera. We wish you nothing
but the best, and we hope you have a lot of great
success in the future. Thank you so much
for joining us today. – Thanks so much. (inspiring music) – And as we continue on
with Wyoming Chronical, as Katie introduced, it’s our pleasure to be
joined by Dr. Nick Foreman. Doctor, thank you so much
for joining us today. – You are welcome. – You are the Seebaum/Tschetter
Chair of Neuro-Oncology, here at Children’s
Hospital, Colorado, and you’re also on the faculty, a Professor of Pediatrics, at the University of Colorado, welcome.
– Thank you. – You worked with Katie, and you worked with Olivia. And you have been now, the benefactor of
their foundation. What has Katie’s
work meant to you? – Katie’s work has been, and the money from
her foundation, has been really
important in the work of finding new mutations
in childhood brain tumors, and finding very
specific therapies for those mutations. – We’re here in a beautiful lab, and it’s one of the leading
labs in the country. Describe for us, where we are. – We’re in the middle of one
of the neuro-oncology labs. There are six neuro-oncology
principal investigators, lead investigators here, and so the whole of this area
is pediatric neuro-oncology. This is actually the largest research pediatric
neuro-oncology group in the United States. – I’ve read once,
where you said this, “I’ve seen how things have
improved over decades,” you’ve been at this since
the mid 1980s, I understand, “And I remain
optimistic that one day “We will cure everyone.” Do you believe that? – I believe that, but I
would also like to achieve curing everyone without
the current cost a lot of the children bear. So there are two problems in treating children
with brain tumors. We haven’t increased the
cure rates very dramatically, but we don’t cure all
children with all tumors, and the other problem is, a lot of these children grow
up injured by our therapies, and their quality
of life is poor. – We talked off-camera, let’s talk about it now. There are some smarter therapies that you’re helping to develop. – Yes, so tumors are driven by, often in childhood,
single mutations. So it’s a single, damaged gene. And that single damaged gene
is what’s driving the tumor. So rather than actually
doing something that affects the whole body, like give radiation
or chemotherapy, the whole question is
developing therapies directed specifically
at that mutation. And that revolution in
therapy has already arrived for a considerable
number of children. – Katie told us, that through
some of your research, that she may be alive today, and may have been a benefactor of exactly that
type of treatment? – Yes, she had an
FGFR-1 mutation, and that is actually
something we can target now. So if you went back, and it’s really fairly
recently we’ve treated her, we’d had nothing except
chemotherapy at the time, which again, affects
the whole body, and was relatively
ineffectual in that tumor. And so to actually now have
these targeted therapies, is really completely different. And these are pills, these are not therapies that have to be
given in a clinic. These are not therapies where you have to
have lines and IVs, so this is totally different. – You’ve talked
emotionally in the past, about how you
treat kids who have their lives in front of them. Who you want to see
graduate and get married. Some don’t, you persevere. – Yes, I actually do a
long-term follow-up clinic, following the
children until they’re until they’re young
adults, ’til 26. And because we’ve been
working here since ’95, in the state of Colorado, and treating children from all the surrounding
states, including Wyoming, I have seen the
results of what we do, and unfortunately, the
results of what we do are not always very pretty. – Seems to me it’s
a big challenge for people that were
in Katie’s shoes, having to drive hundreds
of miles year round, to come get the
care that they need. Is that something, you talk
about targeted therapies, which might be helpful to some, but is that still a big
issue in our country? – I think developing
those targeted therapies is a really big issue. Because the actual
number of mutations is actually quite
large, driving tumors, so although there are some
where they’re relatively common, actually just describing them, is actually taking
us a long time, so we’ve actually
gone back through, basically hundreds of tumors, and actually looked for the
mutation again and again. And when we find a mutation, we then have to actually
look at how to target it. So this is actually an
enormous piece of work, and it’s driven, our work is now often
resulted in national, or participates in
national trials, so that we can actually
look at the success of these targeted
therapies very quickly. – We hear in the media often, that we’re gonna have
a national charge and get after cancer. And then we hear that again, and now we’ve heard it again. – Well, you have to
remember that our situation is somewhat different to
a lot of adult cancers– – Your situation with
pediatric patients? – With pediatrics,
because we’ve already got to a cure rate
of roughly 70%, which is, you know, the
work of a lot of people, including all the people
in these labs, since ’85, so we already have a
fairly high cure rate. The problem is, our cure rate, roughly half the
people who’re cured, are actually injured. So, you know, that we want
to push up the cure rate, but you also want to
radically change the therapy. So for us, if you like, tomorrow is already here. You know, I see
children ever week now, who we’re actually treating
with targeted therapy, who we’re actually
giving pills to. And we’re not giving
chemotherapy to. And those children
having pills now, are as far away as Kalispell, up in Montana, almost
to the Canadian border, and all the way down in
the south of New Mexico. So we are treating
those children already. What we really need to do, is to make sure that therapy
is available everyone with every different mutation. And that is a
tremendous bit of work. – Is that a money
challenge, too? – It’s always a money challenge, because there is always a
limited amount you can do, and the other thing that
people don’t realize, for as a money challenge, it’s not just the research, it the clinical trials that
result from the research, and how rapidly you can do them, because they’re expensive. And getting those,
and in childhood, they all have to be done
nationally, to really work. And that is a major
challenge all the time. – But to circle back, here’s Katie, on her own, has raised over three
hundred thousand dollars, that she’s leveraged into
a couple million dollars, that it’s been of
direct benefit. – Yes, absolutely
direct benefit. So children with, I saw one just two weeks ago, a child with an FJFR-1 mutated tumor, which actually
involves the brain stem and the upper spine, which I would have said five
years ago, absolutely fatal, is just been on pills
now for 18 months and is doing just fine. So you know, that change
has actually arrived, and that therapy we have given
to people with an FJFR-1, but I think was one of the
first children ever treated, and that child is doing fine. But that’s now a therapy
that is available nationally. – Before we let you
go, Dr. Foreman, you told us that there’s
some Wyoming funding, that is prevalent
right here in this lab? – Well it’s not only
Katie’s funding, which is very important to us, but actually, the
Seebaum part of my chair, which actually, back in
the early part of 2000s, was one of the things that
really got us started, is actually Wyoming money, it’s actually derived
from McMurry family, and from their selling of
oil fields up in Wyoming. So this is directly
Wyoming money helped found this whole unit, and Wyoming money actually
produces the future. – Well Dr. Nick Foreman, thank you so much for joining
us on Wyoming Chronical, we wish you the best of luck, you’re one of the nation’s best, and thank you for
spending time with us. – Thank you very much. (inspiring music) – I’m Candice Frude, and I am a founding
board member for The Olivia Caldwell Foundation, and I was Olivia’s nurse. So I first met Katie and Olivia, when they, when
she and her husband brought the twins home
from the hospital, from being born. From the age of four months on, well, really from the age
of bringing Olivia home, from being born prematurely, all the way through her death, I watched that family
struggle every single day. It was always one
thing after another. It went to having to
ween them off oxygen, it went through having a
brain cancer diagnoses. It went through having
a period of remission, then it went through her
having some health problems due to some medications
she was taking, and ultimately, the struggle
of her passing away. One of the things that was always noticeable
about Katie, was she was always very
strong in her faith. So things would happen, and she would call, and we would cry, and yet we would pray and know that it
was gonna be okay. We would go to church, we had support from
family and friends, and just would support her
with whatever we could, but most of the
time it was hard. She was always
having to advocate, she was always having to fight. Because we lived in
Rawlins, Wyoming, and all of the care that
Olivia needed was in Denver. So, even though there
was a lot of struggles, she really was always very
good at being positive, and always, always just wanted
what’s best for her children. The work that Katie has
done with the foundation since Olivia passed, in my eyes, really defines the
word perseverance. She has fought and worked to make Olivia’s death to not be in vain. So our hope for our foundation, is to find a cure
for pediatric cancer. We have made some
amazing strides, and I think what people
don’t always realize, is that if a Wyoming child
gets diagnosed with cancer, a lot of times they’re
going to be going to Denver to be treated. And we have been able to provide some money for some
really big start-up projects, and some really big outcomes
have come out of that. And I think what the people
of Wyoming don’t realize, is that, you don’t think
about this until it’s you, or it’s your family member. But it happens. And these children are
being struck with cancer, and there isn’t,
not a lot of times, not a cure. And our hope is, to not only make a difference, for any family that’s
going through this, but especially make a difference for our Wyoming families. (inspirational music) – Funding for this
program was provided by the members of the
Wyoming PBS Foundation. Thank you for your support.

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