Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 2 (00:00):
Hi.
Speaker 1 (00:00):
My name is Kayla, my daughters is Oakley. She is
eight months old and here is her story. She was
born in Rapid City, South Dakota. When she was born,
she came out with spots all over her and not
breathing very well. The hospital up there had a very
hard time figuring out her diagnosis, and they decided that
(00:24):
we needed to be life lighted down to Children's Nebraska
to meet with some specialists. So we got life lighted
down here twenty four hours after she was born, and
within eight hours of being down here, they gave us
her diagnosis of that she was born with cancer, with leukemia.
(00:47):
That was a very big shock to our family. She
spent a month in the NIKU at the Children's hospital.
She received her first dose of chemo at forty eight
hours of life, and we started this journey down here.
We ended up relocating our whole family closer to the
hospital as she had to do six and a half
(01:10):
months of impatient treatment, and then we have now started
our monthly checkups with her.
Speaker 2 (01:17):
I gotta tell you, I've never even heard of that before,
that somebody would be born with cancer, and she's a
very rare case.
Speaker 1 (01:26):
Right, Yes, she is one in five million is what
they gave us.
Speaker 2 (01:30):
Wow, so you've just had a baby, you've just had Oakleigh,
you've got other family members at home, you've got your husband,
and all of a sudden your world is turned upside down.
Speaker 1 (01:42):
Yes, that's exactly what happened. It was very scary, especially
because in rapid they couldn't give us any answers. Anything
that they had for testing had to be sent out
and things would take a week to come back. She
had what is called a tumor license. It's where the
cells are breaking down in your body. It creates a
(02:05):
very unstable reactions. So she had a lot of things
going on and that was one of the main reasons
we had to come down here, is because they couldn't
quite get her body to normalize, and that took quite
a few weeks down here as well. But the doctors
down here were amazing. They came in did everything with
(02:29):
us step by step. In the nursing, if I didn't
know even a question to ask, the nurses would step
up and ask the doctors right in front of me
and I'd be like, I didn't even think to ask that,
and that They're like, this is why we're here. Is
to help you through this. Children's was just such an
amazing experience. I couldn't even imagine having this experience anywhere
(02:51):
else because of the doctors and the nurses that are
here to help.
Speaker 2 (02:55):
And Children's Nebraska, in fact, was so amazing that you
ended up moving your family here.
Speaker 1 (03:01):
Yes, they offered us the chance to go home after
treatment and then commute to Sue Falls, but we didn't
want to have to drive the four hours there. Why
not drive all the way down to Children's. We have
been in the Suit Falls hospitals before, in the rapid
city hospitals, and we just wanted the best for her,
and this, for us is the best.
Speaker 2 (03:22):
Now. When you had to be away from Oakley, it
must have been reassuring because I hear that she had
a big fan club here and the nurses would pick
up where when you were not able to be here
tell us about that.
Speaker 1 (03:36):
Well, the first couple of days that I was here
was probably the hardest. I didn't want to leave her,
but I had other kids at home that I needed
to go see, and so one of the nurses said
that she is not going to remember this part, but
my other kid as well, and that was so hard.
For me to quite grasp right away. But I decided
(03:59):
to do like my nine to five job. I'd come
to the hospital nine to five, sometimes nine to six
or even earlier, and then at night the nurses would
take care of her and they did such an amazing
job with her. They made it feel like she was
part of their own. Sometimes if I couldn't sleep, I'd
come up at two or three in the morning and
they'd be having a dance party with her in her room,
(04:19):
a Taylor Swift dance party, because Taylor Swift would be
the only thing that would calm her down. So they
turn on the Aras tour and I'd come in and
that's what they'd be doing, is just playing with her.
Speaker 2 (04:28):
Wow.
Speaker 1 (04:29):
So they really made it feel like family on that floor.
Speaker 2 (04:33):
Yeah. Wow. Now when you had questions and the team
listened patiently and things like that, and they were so reassuring.
You talked about there that is there a story that
you can share about that.
Speaker 1 (04:49):
When she got diagnosed with CMB. CMB is something that
they said most of the population has, but however, an
immunal compromise baby, it just tanks their immune system and
doesn't allow it to rebuild. So she had to start
on a med that was twice a day, and the
(05:10):
med comes in the same thing as the chemo stuff
comes in, because it's very harmful and toxic to people.
And I was I remember asking a question and the
nurse's name was Jacob, and she stood next to me
and she goes I asked a question, and the doctor answered,
and then she came in with like a follow up
(05:30):
question that I didn't even think of, and I was like,
thank you so much for asking that question, and she
was like, of course, that's why we're here because we
have to know how to treat her too, and we
want to make sure she gets the best care. And
it was just it was such a great experience that
know that they were there supporting me and helping me
too through all this.
Speaker 2 (05:48):
Yeah, your support system. Yes, now we have listeners listening
to this radiothon that have passed by this hospital many
times but maybe didn't know much about it or have
never been served by the hospital. What would you say
about that? And somebody who's thinking about making a donation
but hasn't picked.
Speaker 1 (06:08):
Up the phone yet, I would say, please do. They
are so helpful. They have so many different.
Speaker 2 (06:16):
See she wants to she wants to talk about it.
Speaker 1 (06:18):
Yes, yes, they have so many departments, so many people
in there, and unfortunately with Miss Oakley, we've talked to
people in general surgery, We've had cardiac come up and
check out her heart, We've been down to X ray
imaging pretty much all over the hospital and they are
(06:40):
so kind and so helpful, and not one experience that
I have was negative. If you are thinking of picking
up and donating, please do because there are other families
out there, just like Miss Oakley that need the help
and support and they will definitely get it at Children's.
Speaker 2 (06:58):
And you never thought you would need Children's but.
Speaker 1 (07:00):
Never I never thought I would need need it ever,
and surprisingly I did.
Speaker 2 (07:08):
How is she doing.
Speaker 1 (07:10):
We're working on milestones that she's kind of fallen behind on.
It's definitely still hard to talk about her story, just
because then it just makes you relive it and it
was a scary time. But we are past that and
now we are onto trying to live our best life.
Speaker 2 (07:33):
I bet it's change your perspective of life going through this.
Speaker 1 (07:38):
Yes, I never thought anything like this could happen at birth,
and of course that's always you know, a parent's fear
is something happening to your child, But then to have
that develop in the womb where you think it's their
safest place and it's it's not, so it's just it
(08:00):
definitely changes your outlook on life. It makes you take
a step back and just enjoy the moments you have
with your children because you just never know what's gonna happen.
Hi.
Speaker 1 (00:00):
My name is Kayla, my daughters is Oakley. She is
eight months old and here is her story. She was
born in Rapid City, South Dakota. When she was born,
she came out with spots all over her and not
breathing very well. The hospital up there had a very
hard time figuring out her diagnosis, and they decided that
(00:24):
we needed to be life lighted down to Children's Nebraska
to meet with some specialists. So we got life lighted
down here twenty four hours after she was born, and
within eight hours of being down here, they gave us
her diagnosis of that she was born with cancer, with leukemia.
(00:47):
That was a very big shock to our family. She
spent a month in the NIKU at the Children's hospital.
She received her first dose of chemo at forty eight
hours of life, and we started this journey down here.
We ended up relocating our whole family closer to the
hospital as she had to do six and a half
(01:10):
months of impatient treatment, and then we have now started
our monthly checkups with her.
Speaker 2 (01:17):
I gotta tell you, I've never even heard of that before,
that somebody would be born with cancer, and she's a
very rare case.
Speaker 1 (01:26):
Right, Yes, she is one in five million is what
they gave us.
Speaker 2 (01:30):
Wow, so you've just had a baby, you've just had Oakleigh,
you've got other family members at home, you've got your husband,
and all of a sudden your world is turned upside down.
Speaker 1 (01:42):
Yes, that's exactly what happened. It was very scary, especially
because in rapid they couldn't give us any answers. Anything
that they had for testing had to be sent out
and things would take a week to come back. She
had what is called a tumor license. It's where the
cells are breaking down in your body. It creates a
(02:05):
very unstable reactions. So she had a lot of things
going on and that was one of the main reasons
we had to come down here, is because they couldn't
quite get her body to normalize, and that took quite
a few weeks down here as well. But the doctors
down here were amazing. They came in did everything with
(02:29):
us step by step. In the nursing, if I didn't
know even a question to ask, the nurses would step
up and ask the doctors right in front of me
and I'd be like, I didn't even think to ask that,
and that They're like, this is why we're here. Is
to help you through this. Children's was just such an
amazing experience. I couldn't even imagine having this experience anywhere
(02:51):
else because of the doctors and the nurses that are
here to help.
Speaker 2 (02:55):
And Children's Nebraska, in fact, was so amazing that you
ended up moving your family here.
Speaker 1 (03:01):
Yes, they offered us the chance to go home after
treatment and then commute to Sue Falls, but we didn't
want to have to drive the four hours there. Why
not drive all the way down to Children's. We have
been in the Suit Falls hospitals before, in the rapid
city hospitals, and we just wanted the best for her,
and this, for us is the best.
Speaker 2 (03:22):
Now. When you had to be away from Oakley, it
must have been reassuring because I hear that she had
a big fan club here and the nurses would pick
up where when you were not able to be here
tell us about that.
Speaker 1 (03:36):
Well, the first couple of days that I was here
was probably the hardest. I didn't want to leave her,
but I had other kids at home that I needed
to go see, and so one of the nurses said
that she is not going to remember this part, but
my other kid as well, and that was so hard.
For me to quite grasp right away. But I decided
(03:59):
to do like my nine to five job. I'd come
to the hospital nine to five, sometimes nine to six
or even earlier, and then at night the nurses would
take care of her and they did such an amazing
job with her. They made it feel like she was
part of their own. Sometimes if I couldn't sleep, I'd
come up at two or three in the morning and
they'd be having a dance party with her in her room,
(04:19):
a Taylor Swift dance party, because Taylor Swift would be
the only thing that would calm her down. So they
turn on the Aras tour and I'd come in and
that's what they'd be doing, is just playing with her.
Speaker 2 (04:28):
Wow.
Speaker 1 (04:29):
So they really made it feel like family on that floor.
Speaker 2 (04:33):
Yeah. Wow. Now when you had questions and the team
listened patiently and things like that, and they were so reassuring.
You talked about there that is there a story that
you can share about that.
Speaker 1 (04:49):
When she got diagnosed with CMB. CMB is something that
they said most of the population has, but however, an
immunal compromise baby, it just tanks their immune system and
doesn't allow it to rebuild. So she had to start
on a med that was twice a day, and the
(05:10):
med comes in the same thing as the chemo stuff
comes in, because it's very harmful and toxic to people.
And I was I remember asking a question and the
nurse's name was Jacob, and she stood next to me
and she goes I asked a question, and the doctor answered,
and then she came in with like a follow up
(05:30):
question that I didn't even think of, and I was like,
thank you so much for asking that question, and she
was like, of course, that's why we're here because we
have to know how to treat her too, and we
want to make sure she gets the best care. And
it was just it was such a great experience that
know that they were there supporting me and helping me
too through all this.
Speaker 2 (05:48):
Yeah, your support system. Yes, now we have listeners listening
to this radiothon that have passed by this hospital many
times but maybe didn't know much about it or have
never been served by the hospital. What would you say
about that? And somebody who's thinking about making a donation
but hasn't picked.
Speaker 1 (06:08):
Up the phone yet, I would say, please do. They
are so helpful. They have so many different.
Speaker 2 (06:16):
See she wants to she wants to talk about it.
Speaker 1 (06:18):
Yes, yes, they have so many departments, so many people
in there, and unfortunately with Miss Oakley, we've talked to
people in general surgery, We've had cardiac come up and
check out her heart, We've been down to X ray
imaging pretty much all over the hospital and they are
(06:40):
so kind and so helpful, and not one experience that
I have was negative. If you are thinking of picking
up and donating, please do because there are other families
out there, just like Miss Oakley that need the help
and support and they will definitely get it at Children's.
Speaker 2 (06:58):
And you never thought you would need Children's but.
Speaker 1 (07:00):
Never I never thought I would need need it ever,
and surprisingly I did.
Speaker 2 (07:08):
How is she doing.
Speaker 1 (07:10):
We're working on milestones that she's kind of fallen behind on.
It's definitely still hard to talk about her story, just
because then it just makes you relive it and it
was a scary time. But we are past that and
now we are onto trying to live our best life.
Speaker 2 (07:33):
I bet it's change your perspective of life going through this.
Speaker 1 (07:38):
Yes, I never thought anything like this could happen at birth,
and of course that's always you know, a parent's fear
is something happening to your child, But then to have
that develop in the womb where you think it's their
safest place and it's it's not, so it's just it
(08:00):
definitely changes your outlook on life. It makes you take
a step back and just enjoy the moments you have
with your children because you just never know what's gonna happen.
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