March 24, 2025 • 29 mins
The Leukemia & Lymphoma Society’s Mission to Cure & Support
In this episode of Spotlight Houston, host Blanca Quezada sits down with Tatyana Chowbay from the Leukemia & Lymphoma Society (LLS) to talk about how the organization is fighting to cure blood cancers like leukemia, lymphoma, and myeloma. Tatyana shares the history of LLS, her personal connection to the cause, and how LLS supports both patients and caregivers from diagnosis through treatment.
They cover everything from common symptoms and subtypes of leukemia to what families should ask their doctors. Tatyana explains how LLS helps patients navigate emotional and financial stress, including help with travel, lodging, and copay assistance. She also talks about their caregiver match program, where those new to the journey are connected with people who’ve been there before.
The episode also dives into the life-saving role of clinical trials and the story of Evan, a young cancer survivor whose life was saved by an LLS-supported trial. You’ll hear how LLS works with national partners like Be the Match to find bone marrow and cord blood donors—even internationally—when matches are hard to find.
Tatyana also talks about their Visionaries of the Year campaign, how the public can get involved in fundraising and volunteering, and how local businesses like French Cuff Boutique are stepping up to support the cause.
Visit https://lls.org to learn more about LLS programs and services or call 1-800-955-4572 during business hours.
Key Topics Covered:
- What blood cancers are and how to recognize symptoms
- Treatment options, including chemotherapy and bone marrow transplants
- The importance of clinical trials and how they save lives
- Support programs for patients and caregivers
- How to become a donor or volunteer
- Fundraising through Visionaries of the Year, Big Climb, and Light the Night
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
We do everything from local national
help for whatever patients may need. So we've been able to help with
things like copay assistance, urgent need assistance, just
any type of resources that they might need as far as like, what is their
diagnosis? Where can they go to? We have an incredible
patients and caregivers program where we match people who
(00:21):
are newly diagnosed with people who have already been through the treatment
with the same diagnosis and help them alongside their journey, as well as
we do the same thing for caregiver givers. So anybody that is a
caregiver and they don't know how to help their loved one through this diagnosis,
we have, we match them up with another caregiver. Who's already been through
that same process. So it's super special. We have so
(00:44):
many incredible resources. I could talk all day, but
if the first place that we always encourage people to go to is our
informa informational resource center. And you can find that just by searching
up LLS information.
Thank you for joining us for another episode of Spotlight Houston, where we bring you
(01:07):
the best people, places, and events in Greater Houston. Today, we're talking
about a topic that touches the lives of many, but isn't always easy to
understand. Blood cancers like leukemia, lymphoma, and myeloma. We're
joined by Tatiana Chobe, campaign development manager for the
Texas Gulf Region of the Leukemia and Lymphoma Society.
Tatiana shares the stories behind LLS, the vital
(01:29):
work they do to support patients and caregivers, and how clinical
trials, education, and community fundraising are helping save
lives. You'll also hear a personal story from our host,
Blanca Quesada, about how blood cancer affected her own family.
This is episode one thirty with an original air date of Monday,
03/24/2025. Spotlight Houston is brought to you
(01:51):
by Storyzone Media. And now, here's your host, Blanca Quesada.
Hi, everyone. Today is going to be a very special day
because I have a great hit because I have a great guest. We'll be
discussing a health condition that we don't often hear
about and that a lot of people, children
included, around the world are diagnosed with
(02:14):
daily. And I'm talking about leukemia,
lymphoma, and myeloma. These are blood cancers,
but how much do we really know about them? I don't know too
much, but I know a little. We don't know what the symptoms are, so we're
gonna learn about what they are, what kind of questions we should ask
our doctor, what are the treatments, What are the side
(02:36):
effects of a lot of these medications? And, of course, the
stem cell transplants or bone marrow transplants. And
there's so much to learn. And if you're find
yourself in this situation, it's a lot of information
to learn about very quickly, and it can become
very overwhelming. So I've asked Tatiana Shobe,
(02:59):
who is the campaign development specialist with the
Leukemia and Lymph Lymphoma Society, which is
a global leader in in the fight against blood cancers,
to join me to talk about this blood disease and
how this organization can help and guide families and
patients through this healthcare experience. Welcome to the
(03:22):
show. Thank you so much. I'm glad to be here. Hi, everyone.
It's great to have you here because as I mentioned,
a lot of us don't know a lot of detail. We hear about it,
but we really don't know until we're in that situation.
And it can be really, from experience, I can tell you that it
(03:42):
it's overwhelming. Absolutely. Before we get
started, can you tell me a little bit about
the history of the society? Because I know that it's been around
for a long time and has the mission of the organization
changed since it started? Absolutely. Yes. So LLS was
actually founded by a family who was grieving their
(04:04):
son, who was a teenager at the time and lost his battle against
leukemia. His name was Robert. His parents were Rudolph
and Antoinette and they started a fundraising and education organization
in their son's name. So it started off as their
family foundation and then it over time has grown
to what it is today as a leukemia lymphoma society.
(04:26):
So when we started, we were just focused on leukemia, but now
we've expanded our focus is to all blood cancers, including
myeloma and Hodgkin's disease as well.
Dutenna, why did you decide to become a part of this great organization?
Absolutely. Yes. Thank you for asking. So I always have had a
history with nonprofit. It's just a place in my heart that I
(04:49):
love, but actually my connection is very personal. So
my grandfather was diagnosed with non Hodgkin's lymphoma
just a few years ago. He's in remission. He's doing really well. We're super lucky,
but obviously that's not the case for everyone. So when I got the
opportunity to work for LLS, I couldn't say no. What services
are offered and how do you provide support to people
(05:12):
with leukemia or the, I keep wanting to say
lymphedema, but it's not lymphoma? Yes. What what
kind of help or support do you give? Absolutely.
So, LLS, what's their mission into three pillars. We
do research patient support and education, as well as
advocacy. So we have over the seventy five years that
(05:34):
LLS has been in fruition. We've been able to invest over
$1,800,000,000 in just blood cancer research, which has
been absolutely life changing for so many of our patients. And
over the years, you can see the progress that we've made in some of our
treatments, as well as for our patient support. We
do everything from local national
(05:56):
help for whatever patients may need. So we've been able to help with things
like copay assistance, urgent need assistance, just any
type of resources that they might need as far as like, what is their diagnosis?
Where can they go to? We have an incredible patients and caregivers
program where we match people who are newly diagnosed with
people who have already been through the treatment with the same
(06:18):
diagnosis and help them alongside their journey, as well as we do the same
thing for caregiver givers. So anybody that is a caregiver and they
don't know how to help their loved one through this diagnosis, we have,
we match them up with another caregiver. Who's already been through that same
process. So it's super special. We have so many
incredible resources. I could talk all day, but if the first place
(06:41):
that we always encourage people to go to is our information,
informational resource center. And you can find that just by searching up
LLS information. And we had just mentioned that
there's different, I mean, it's called leukemia
and lymphoma cancers, blood cancers,
but they're variations of this disease. Right? Absolutely.
(07:02):
So every type of cancer basically has their own subtype
within that. So there for leukemia, there's acute lymphoblastic,
there's acute myeloid. There's just so many different types. I don't know
all of them. Obviously I'm not a doctor, but I do know that there are
so many different sub levels, which makes it so hard to treat because it's
not a one size fits all disease. So are there
(07:24):
symptoms or things that we can see that aren't going
right with us that might tell us that's probably what we've
got? Yes. So obviously, like I said, if anybody
wants to know more about some of the symptoms that they're experiencing, you can
always go to our informational resource center and then always consult your
local doctor first by all means. But we do
(07:47):
see a lot of the symptoms. For example, the most common diagnosis for
childhood cancer is acute lymphoblastic leukemia.
And some of those symptoms can look like very similar to anemia. There are
so many different types of sublevels. One of the most common is
acute lymphoblastic leukemia. That is one of the most
diagnosed in childhood cancer and for adolescents under the age
(08:09):
of 20 years old. So those symptoms can look like anemia,
low blood, low platelet counts within their blood
levels. And that results in a lot of bruising, as well as a few other
general symptoms. And then some more common symptoms that we see are like those
night sweats, discomfort in their bones and joints, just things
like a lot of pain. Well, I'm gonna share a personal
(08:31):
story. Yes. My sister was diagnosed,
several years ago with acute lymphoblastic leukemia
Wow. Which, in an adult is kind of rare because they
normally have children. So the doctors couldn't figure
out why or how she got that. But the way she
found out was kinda strange because she started having, like,
(08:53):
bruising and a pain in her neck. Wow.
And so that's how she got diagnosed by going to
the doctor and the doctor sending her to an oncologist and trying to
figure things out. And fortune and fortunately,
she went through a lot of very painful
treatment and, she was in remission for four
(09:15):
years. Wow. And the other strange thing
is that four years later, almost on the same date and
same month, she got it again and she,
came back really strong. And so she had to go
through a lot of, more chemo treatment, of course, not
radiation, but more chemo. And, and so
(09:38):
she had to come to Houston. She wasn't living here. She had
to come here. And so she was in the
hospital for almost a year. It had
gotten so bad, a lot of bacteria and other
things that they just couldn't do very much with. But the other thing that
I found really interesting was that one of the treatments
(10:00):
was doing a stem cell or a bone
marrow transplant. And none of the family, we weren't a
match. So what I found out that the leukemia
society does is they go out and
recruit volunteers to become donors.
Yes. And so that is a national thing
(10:22):
that, that you guys do. Right? Right. We have partnered with
Be The Match if you've ever heard of them as well. And we always have
like a big week here in LLS where we encourage all of ourselves, as well
as our volunteers. If anybody's interested to sign up and
participate and hopefully be a match for someone. Yeah. But
like I said, none of us were matched and none, none
(10:44):
nobody in the state or the country was a match to her either. They couldn't
find a match. Wow. So they had to go internationally,
which I thought was fabulous. I didn't know that the
Leukemia and Lymphoma society could do that,
but they did. And they found a match
in Spain and they found a match in France.
(11:07):
Wow. But it wasn't yeah. But it wasn't bone marrow. It
was a umbilical cord. Oh, wow. Blood from
a umbilical cord. Wow. And they brought them and
they started to work very slowly, but they started to work. And
but she was too far advanced with the disease that
it wasn't working fast enough. Yeah. So unfortunately, we
(11:30):
lost her, but we were grateful that we had her for an extra
four years and and also very grateful to
the Leukemia and Lymphoma Society because y'all were a
great help to us. Great support. And
we participated in that participated in going
out to get donors at different events. Well, thank you for sharing that
(11:53):
story. I know that's so it's crazy. Cause when you work in this
field, you meet so many people that go through so many similar situations and
it's just like, what else can we do? There's always something else.
And something that you mentioned is the wait time and the having
to come to Houston. We're so lucky that we have one of the best medical
districts here in Houston. It's right in our backyard. So we see
(12:16):
patients all the time coming from all over just to get treated here.
And then that's where some of our copay assistance helps with those
traveling days and just staying in a hotel because you don't live here,
things like that. So just, there's so much that people kind of don't
think about that goes into it's more than just showing up at your doctor's appointment,
receiving your treatment. It affects everybody. Yeah. Like I said, it
(12:38):
was very overwhelming. We had to learn, we had to
learn everything. There was to learn about
acute lymphoblastic leukemia and how we could
help, what we could do to learn about her treatments, the
side effects. I mean, it was just so much, but It's so much. We
had someone that we worked with from the society that was
(13:00):
a great help. That's amazing. Support. Yeah. Yeah. I'm so glad
to hear that. Yeah. That's why I wanted you guys on too
because because it like I said, it's something that we
normally don't hear about. And when we do, we really don't understand
it completely. Yes. And it's a lot of information
that we do have to learn. Yeah. And yeah.
(13:23):
Very quickly. Very quickly. Absolutely.
You mentioned a lot of services and support
that you provide for people of all
ages. Yes. And, how can they get in touch with you?
That's where we are. If it depends on what they're trying to get
involved with. Do you mean more for, like, their diagnosis and their
(13:44):
treatment or just about our fundraising effort? Yeah.
Just in general, as far as support and help right
now? Yeah. We always recommend that our anybody that is trying to
figure out what they're going through or asking questions or need information,
always reach out to our informational resource center. That's where you can
talk live with nurses who are professionals and they can guide you in the best
(14:06):
direction. And earlier you mentioned caregivers.
Caregivers are also very important, but it can become very
stress and, and again, an overwhelming situation.
So how do you provide support for the caregivers? I think that's where
I go back to a lot of our common commonalities of
trying to, one of our programs is matching them with another caregiver and
(14:29):
trying to give them those resources of this is what you can expect
to happen. This is some external resources in your local
area that you can reach out to that can help you in your assistance of
whatever you may need. Honestly, it can range from a variety of things
And that also having a support system and the support person that's
been through what you're going through has been really monumental for a lot
(14:51):
of our caregivers. So one of the the primary missions for
the society is research. Yes. You do a lot of research.
What type of research? Actually, it kind of spans one of we have a lot
of different prod projects going on right now. We're constantly a part
of the if you ever see if you follow us on Instagram, you see it
all the time that we're part of all the FDA approvals that are happening for
(15:14):
a lot of our cancer treatments right now. One of my favorite
things that I, I love to talk about all the time is our clinical trials
locally here in Houston. We support about 11 researchers, which
is super, again, like I said, incredible. It's just,
we're so lucky to have the community that we do here in Houston. And we're
so grateful to be able to support and fund their research here. One
(15:37):
of my favorite things that we do is our clinical trials. Like I mentioned, one
of my favorite stories is actually about one of
our honor heroes. So if you don't mind, I would love to share with you.
Yes, please. Please. Yeah. Evan is our honor hero for the visionaries of
the year campaign. And in LLS, we have multiple fundraising
initiatives. One of them is visionaries of the year and each initiative
(15:59):
gets an honor hero. So this is a family that has
ideally been out of treatment now and has, is able to share about
their story and inspire so many other people who may not have a mission
connection and want to learn more. So Evan is our,
our honored hero this year, and he was diagnosed with acute lymphoblastic
leukemia. And his story is so inspiring. He was
(16:21):
diagnosed at the age of four. He went through his first round of
chemotherapy and they were expecting to see ultimately
no sign of cancer after that first thirty days. But
unfortunately they did. So they needed to look for alternative
methods to treatment because his chemotherapy was not working.
And he was lucky enough to be selected for a clinical trial that was going
(16:44):
on. And that clinical trial was it's all happening here in
Houston. And that clinical trial is what ultimately
saved his life. He was on a backpack that infused his medication
for a period of time. Then he went into his maintenance phase of
treatment and this past August twenty third of twenty twenty
four, he was able to ring the bell and be cancer free.
(17:06):
So super. That is a beautiful story. Great. The
best part is that he joined LLS as an honor
hero. We had no idea how LLS really impacted their
family at the time. And they were sharing the story and his mom told
me the name of his clinical trial that he was on. And so I just
looked it up just to see, cause I want to learn as much as I
(17:27):
can just like everyone else. And it happened to be that LLS was a
part of the approval process in helping this clinical trial come
to fruition. And we were a huge part of saving Evan's life too,
which was gives me chills every time. To know how many people
they'd been able to to save through these clinical trials. I don't, but I
would love to know. I'm sure we have that statistic. We do also have our
(17:49):
annual report, which is public for anybody to look through, and
it shows you all of the incredible research and trials and everything that
we're currently doing right now. Do you know how patients can
become or go into clinical trials? Yes.
So it it is a selective process and not everyone
unfortunately can be selected because they are trials. In Evan's case
(18:11):
specifically, he was recommended by his doctor. He met all these
qualifications that they have to go through, and he was ultimately
selected at the end of it. So I guess it's just, talking to your
doctor and and finding out what the next steps might
be. Absolutely. Yeah. And so
I know that right now you are starting or
(18:33):
have started actually a, special campaign to
raise funds for those clinical trials. So,
yes. So right now going on is our visionaries of the
year campaign and it started March 20 and it's going to go
until May 30. This campaign was formerly known as man
woman of the year, man and woman of the year, if anybody's ever been familiar
(18:55):
with it, but it's our ten week philanthropic competition
for leaders here locally in Houston and it spans across the
whole United States. Yeah. Well, so,
how can we get involved? Yes, absolutely. So
right now, everybody who is participating in this
competition is called a candidate and candidates are nominated
(19:17):
through our local board and our leadership committee. And it
can be anybody. It can be a stay home mom. It could be a CEO
of a company. It can be anybody is welcome to be a part of this
campaign, but they are handpicked to be a part of it. And
so it's super special to be nominated as a candidate
and then they create teams so you can join a team. You can
(19:38):
also just be a con someone that wants to donate
or participate in any of their events that they may be hosting throughout the
year. Yeah. So how can you, or what can you do
to become selected? Yes. So honestly, if you know
anybody that's competing right now, or if you want to know, if you want
to reach out to somebody at LLS, we can give you more information
(20:00):
on how to be nominated and give you the information of how to be a
candidate and see if that's something that you want to be part of. Absolutely.
Yeah. You can become a candidate anytime. So our
campaign is from March 20 to May 30. From that time
period, we will not be accepting any candidates just because the competition
is already going, but anytime before or after you're welcome
(20:22):
to sign on. And so we start
recruiting after this season ends. Oh, okay. So
what is it? What are your, your, duties, as a,
as a selected candidate? Yes. Sorry, go ahead. What is it that they
have to do? Yes. So we ask our candidates to really be
open to sharing with their network, what they're doing and
(20:44):
asking for donations and just fundraising as much as they
can. Because at the end of the ten weeks, the person that raised
the team that raises the most funds wins the title of visionary of the
year. So that's kind of just our main focus is really being
open to the ask, not saying no for people being
willing to put yourself out there, share the LLS mission
(21:07):
and share the reason why you're doing what you're doing and why
it impacts so many people in their lives and how the funds really do
go to such a great place and change lives for so many
people. And so when will you do a huge
celebration for this? Yes. So our grand finale gala is
on May 30. It's going to be where we finish off our
(21:29):
celebration of all the fundraising that our candidates have done over the ten
weeks. We see the title of who won visionary of the year, as
well as our overall impact. Last year, we were able to raise
over $1,600,000 which was incredible.
We're so excited about that. But this year we are striving for that
2,000,000. So we're really going to be pushing ourselves. Okay. I'm going to keep my
(21:51):
fingers crossed. Yes. Thank you. Yeah. Volunteers
are really important for the organization as well. I know
that I volunteered a lot and sometimes I still
volunteer when I find the time. Yes. So are you
still in getting volunteers involved? So
our volunteers, we have volunteers for all of our initiatives.
(22:13):
Everybody, if you're welcome, if you want to volunteer and just get to know about
the organization, there's always opportunities. And we would love to
find out where you can fit in. Right now, we are still accepting team
members for candidates if anybody wants to fundraise and jump on
board, but our main candidates are set in stone and they've already started
fundraising. And do you have events going on,
(22:35):
like, year round to sign up people for donors?
Yes. Absolutely. So outside of visionaries of the year, we do
have more events. So we have our big climb. It's a 50
floor climb competition. So based yes, it's done at
the Allen center in Downtown Houston and it's
welcome for families, friends, anybody who wants to do it as welcome to come
(22:58):
out. The, they have a fundraising minimum. So you just fundraise the
minimum and you're welcome to climb the stories up. And then we
also have our light, the night walks, which happened in October and
November. And one is in Houston and one is also in Montgomery County. And
those are welcome and open to everyone. Yeah. And as a
donor, I think donors are very important, very special
(23:20):
people because they're also helping. They're not
donating a liver or kidney or anything like that,
but they're donating their blood. And
in our bodies are constantly producing blood.
So if we do donate, then it'll get
replenished right away. Yes. Sorry. I don't think LLS
(23:41):
doesn't do blood donations though. That is a No. Right. Right.
No. But as far as just signing up to be a donor.
Oh, yes. Okay. Sorry. Sorry. I got confused for a second.
Yeah. No. I know that as it once you've been selected as
a donor, then you will have to
get a bone marrow to their own. Yes. There are
(24:04):
bone marrow donors. Exactly. Yeah. And it
really doesn't take a lot. And, you're, I think, I I'm not
sure, but if you are if you do become selected and
you go through the process, it doesn't take too much time.
Yeah. I'm not very familiar with the whole process myself, but I'm sure I could
find more information on it. Yeah. Well, I learned a little bit about it
(24:26):
when my sister was there going through her issue. But, and I also
learned that the recovery is pretty quick. And,
you can go about your daily life with no problem
knowing that you may have saved a life. Exactly.
Yes. Yeah. Yeah. It doesn't take a lot. It doesn't take a lot.
And change a lot of lives. Yeah. It really it it
(24:48):
helps save the patient, but it also
helps families that are having to go through it
with the patient. Yes. So to find out more
information about all your programs and services or
volunteering, where can we get that information? Yes. So
so you can go to for the visionaries of the year campaign, you can go
(25:11):
to LLS, sorry, LLS visionaries of the year Houston. If you just
search that in the Google in Google search, you can find us right away. And
then also for all of our specific campaigns, just typing in big
client Houston or light the night Houston. Is there a general phone number
that we can call to? We don't have a general phone number just because we
do work remotely, but you can email me if you want or anyone else on
(25:33):
our team. My email is just my first dot last name at l o
s dot org. Okay. And we can find it on the
website. Right? Yes. You can. Okay. And we can
just get in touch during business hours. Right? Yes. Absolutely.
Monday to Friday. Okay. And is there anything
that you would like to mention that we haven't mentioned? Yes.
(25:55):
One of the things that I wanted to mention was Carrie
Taye Barclay, who is a candidate for visionaries of the year this
year. She is the owner of French Cup Boutique,
and she is running in honor of her very close
friend, Denise. Carite is doing incredible things and she's setting
herself up for success and is hoping to win this
(26:17):
campaign this year. If you wanna support, you're welcome to go to any of her
French cuff boutique and make a purchase. For the time of the
campaign. Some of the proceeds are going back to LLS. That's
super easy way to get involved. And she has multiple locations
that you guys can also go and check out as well as
donating to her fundraising page directly. And like you said, we can go
(26:39):
into your website and, find out more
locations and all the details on how you can
donate. Yes. And that will be all included. Okay. So,
Tatiana, thank you so very much. I'm so happy that you had the time
to come and join me and talk about what leukemia
and lymphoma are and how the society
(27:00):
helps families and patients. Yes. And and how
we can help as well. Thank you for all that
information, and I hope that you get a lot of people visiting your
website Thank you. Just to find out what it is. Because even
if we don't have a friend or a family member, you
still hear about it anyway. And and so it's good
(27:23):
that if you know what it's all about. Yes. Thank you so much
for having me. We're so grateful for this opportunity and help to connect with a
lot of people. Thank you so much. Thank you. And of course, thank
you all as well for joining me for this week's edition of
Spotlight Houston. And if you have any comments
or have any story ideas, please let me know.
(27:45):
Send them your way.
We do everything from local national
help for whatever patients may need. So we've been able to help with
things like copay assistance, urgent need assistance, just
any type of resources that they might need as far as like, what is their
diagnosis? Where can they go to? We have an incredible
patients and caregivers program where we match people who
(00:21):
are newly diagnosed with people who have already been through the treatment
with the same diagnosis and help them alongside their journey, as well as
we do the same thing for caregiver givers. So anybody that is a
caregiver and they don't know how to help their loved one through this diagnosis,
we have, we match them up with another caregiver. Who's already been through
that same process. So it's super special. We have so
(00:44):
many incredible resources. I could talk all day, but
if the first place that we always encourage people to go to is our
informa informational resource center. And you can find that just by searching
up LLS information.
Thank you for joining us for another episode of Spotlight Houston, where we bring you
(01:07):
the best people, places, and events in Greater Houston. Today, we're talking
about a topic that touches the lives of many, but isn't always easy to
understand. Blood cancers like leukemia, lymphoma, and myeloma. We're
joined by Tatiana Chobe, campaign development manager for the
Texas Gulf Region of the Leukemia and Lymphoma Society.
Tatiana shares the stories behind LLS, the vital
(01:29):
work they do to support patients and caregivers, and how clinical
trials, education, and community fundraising are helping save
lives. You'll also hear a personal story from our host,
Blanca Quesada, about how blood cancer affected her own family.
This is episode one thirty with an original air date of Monday,
03/24/2025. Spotlight Houston is brought to you
(01:51):
by Storyzone Media. And now, here's your host, Blanca Quesada.
Hi, everyone. Today is going to be a very special day
because I have a great hit because I have a great guest. We'll be
discussing a health condition that we don't often hear
about and that a lot of people, children
included, around the world are diagnosed with
(02:14):
daily. And I'm talking about leukemia,
lymphoma, and myeloma. These are blood cancers,
but how much do we really know about them? I don't know too
much, but I know a little. We don't know what the symptoms are, so we're
gonna learn about what they are, what kind of questions we should ask
our doctor, what are the treatments, What are the side
(02:36):
effects of a lot of these medications? And, of course, the
stem cell transplants or bone marrow transplants. And
there's so much to learn. And if you're find
yourself in this situation, it's a lot of information
to learn about very quickly, and it can become
very overwhelming. So I've asked Tatiana Shobe,
(02:59):
who is the campaign development specialist with the
Leukemia and Lymph Lymphoma Society, which is
a global leader in in the fight against blood cancers,
to join me to talk about this blood disease and
how this organization can help and guide families and
patients through this healthcare experience. Welcome to the
(03:22):
show. Thank you so much. I'm glad to be here. Hi, everyone.
It's great to have you here because as I mentioned,
a lot of us don't know a lot of detail. We hear about it,
but we really don't know until we're in that situation.
And it can be really, from experience, I can tell you that it
(03:42):
it's overwhelming. Absolutely. Before we get
started, can you tell me a little bit about
the history of the society? Because I know that it's been around
for a long time and has the mission of the organization
changed since it started? Absolutely. Yes. So LLS was
actually founded by a family who was grieving their
(04:04):
son, who was a teenager at the time and lost his battle against
leukemia. His name was Robert. His parents were Rudolph
and Antoinette and they started a fundraising and education organization
in their son's name. So it started off as their
family foundation and then it over time has grown
to what it is today as a leukemia lymphoma society.
(04:26):
So when we started, we were just focused on leukemia, but now
we've expanded our focus is to all blood cancers, including
myeloma and Hodgkin's disease as well.
Dutenna, why did you decide to become a part of this great organization?
Absolutely. Yes. Thank you for asking. So I always have had a
history with nonprofit. It's just a place in my heart that I
(04:49):
love, but actually my connection is very personal. So
my grandfather was diagnosed with non Hodgkin's lymphoma
just a few years ago. He's in remission. He's doing really well. We're super lucky,
but obviously that's not the case for everyone. So when I got the
opportunity to work for LLS, I couldn't say no. What services
are offered and how do you provide support to people
(05:12):
with leukemia or the, I keep wanting to say
lymphedema, but it's not lymphoma? Yes. What what
kind of help or support do you give? Absolutely.
So, LLS, what's their mission into three pillars. We
do research patient support and education, as well as
advocacy. So we have over the seventy five years that
(05:34):
LLS has been in fruition. We've been able to invest over
$1,800,000,000 in just blood cancer research, which has
been absolutely life changing for so many of our patients. And
over the years, you can see the progress that we've made in some of our
treatments, as well as for our patient support. We
do everything from local national
(05:56):
help for whatever patients may need. So we've been able to help with things
like copay assistance, urgent need assistance, just any
type of resources that they might need as far as like, what is their diagnosis?
Where can they go to? We have an incredible patients and caregivers
program where we match people who are newly diagnosed with
people who have already been through the treatment with the same
(06:18):
diagnosis and help them alongside their journey, as well as we do the same
thing for caregiver givers. So anybody that is a caregiver and they
don't know how to help their loved one through this diagnosis, we have,
we match them up with another caregiver. Who's already been through that same
process. So it's super special. We have so many
incredible resources. I could talk all day, but if the first place
(06:41):
that we always encourage people to go to is our information,
informational resource center. And you can find that just by searching up
LLS information. And we had just mentioned that
there's different, I mean, it's called leukemia
and lymphoma cancers, blood cancers,
but they're variations of this disease. Right? Absolutely.
(07:02):
So every type of cancer basically has their own subtype
within that. So there for leukemia, there's acute lymphoblastic,
there's acute myeloid. There's just so many different types. I don't know
all of them. Obviously I'm not a doctor, but I do know that there are
so many different sub levels, which makes it so hard to treat because it's
not a one size fits all disease. So are there
(07:24):
symptoms or things that we can see that aren't going
right with us that might tell us that's probably what we've
got? Yes. So obviously, like I said, if anybody
wants to know more about some of the symptoms that they're experiencing, you can
always go to our informational resource center and then always consult your
local doctor first by all means. But we do
(07:47):
see a lot of the symptoms. For example, the most common diagnosis for
childhood cancer is acute lymphoblastic leukemia.
And some of those symptoms can look like very similar to anemia. There are
so many different types of sublevels. One of the most common is
acute lymphoblastic leukemia. That is one of the most
diagnosed in childhood cancer and for adolescents under the age
(08:09):
of 20 years old. So those symptoms can look like anemia,
low blood, low platelet counts within their blood
levels. And that results in a lot of bruising, as well as a few other
general symptoms. And then some more common symptoms that we see are like those
night sweats, discomfort in their bones and joints, just things
like a lot of pain. Well, I'm gonna share a personal
(08:31):
story. Yes. My sister was diagnosed,
several years ago with acute lymphoblastic leukemia
Wow. Which, in an adult is kind of rare because they
normally have children. So the doctors couldn't figure
out why or how she got that. But the way she
found out was kinda strange because she started having, like,
(08:53):
bruising and a pain in her neck. Wow.
And so that's how she got diagnosed by going to
the doctor and the doctor sending her to an oncologist and trying to
figure things out. And fortune and fortunately,
she went through a lot of very painful
treatment and, she was in remission for four
(09:15):
years. Wow. And the other strange thing
is that four years later, almost on the same date and
same month, she got it again and she,
came back really strong. And so she had to go
through a lot of, more chemo treatment, of course, not
radiation, but more chemo. And, and so
(09:38):
she had to come to Houston. She wasn't living here. She had
to come here. And so she was in the
hospital for almost a year. It had
gotten so bad, a lot of bacteria and other
things that they just couldn't do very much with. But the other thing that
I found really interesting was that one of the treatments
(10:00):
was doing a stem cell or a bone
marrow transplant. And none of the family, we weren't a
match. So what I found out that the leukemia
society does is they go out and
recruit volunteers to become donors.
Yes. And so that is a national thing
(10:22):
that, that you guys do. Right? Right. We have partnered with
Be The Match if you've ever heard of them as well. And we always have
like a big week here in LLS where we encourage all of ourselves, as well
as our volunteers. If anybody's interested to sign up and
participate and hopefully be a match for someone. Yeah. But
like I said, none of us were matched and none, none
(10:44):
nobody in the state or the country was a match to her either. They couldn't
find a match. Wow. So they had to go internationally,
which I thought was fabulous. I didn't know that the
Leukemia and Lymphoma society could do that,
but they did. And they found a match
in Spain and they found a match in France.
(11:07):
Wow. But it wasn't yeah. But it wasn't bone marrow. It
was a umbilical cord. Oh, wow. Blood from
a umbilical cord. Wow. And they brought them and
they started to work very slowly, but they started to work. And
but she was too far advanced with the disease that
it wasn't working fast enough. Yeah. So unfortunately, we
(11:30):
lost her, but we were grateful that we had her for an extra
four years and and also very grateful to
the Leukemia and Lymphoma Society because y'all were a
great help to us. Great support. And
we participated in that participated in going
out to get donors at different events. Well, thank you for sharing that
(11:53):
story. I know that's so it's crazy. Cause when you work in this
field, you meet so many people that go through so many similar situations and
it's just like, what else can we do? There's always something else.
And something that you mentioned is the wait time and the having
to come to Houston. We're so lucky that we have one of the best medical
districts here in Houston. It's right in our backyard. So we see
(12:16):
patients all the time coming from all over just to get treated here.
And then that's where some of our copay assistance helps with those
traveling days and just staying in a hotel because you don't live here,
things like that. So just, there's so much that people kind of don't
think about that goes into it's more than just showing up at your doctor's appointment,
receiving your treatment. It affects everybody. Yeah. Like I said, it
(12:38):
was very overwhelming. We had to learn, we had to
learn everything. There was to learn about
acute lymphoblastic leukemia and how we could
help, what we could do to learn about her treatments, the
side effects. I mean, it was just so much, but It's so much. We
had someone that we worked with from the society that was
(13:00):
a great help. That's amazing. Support. Yeah. Yeah. I'm so glad
to hear that. Yeah. That's why I wanted you guys on too
because because it like I said, it's something that we
normally don't hear about. And when we do, we really don't understand
it completely. Yes. And it's a lot of information
that we do have to learn. Yeah. And yeah.
(13:23):
Very quickly. Very quickly. Absolutely.
You mentioned a lot of services and support
that you provide for people of all
ages. Yes. And, how can they get in touch with you?
That's where we are. If it depends on what they're trying to get
involved with. Do you mean more for, like, their diagnosis and their
(13:44):
treatment or just about our fundraising effort? Yeah.
Just in general, as far as support and help right
now? Yeah. We always recommend that our anybody that is trying to
figure out what they're going through or asking questions or need information,
always reach out to our informational resource center. That's where you can
talk live with nurses who are professionals and they can guide you in the best
(14:06):
direction. And earlier you mentioned caregivers.
Caregivers are also very important, but it can become very
stress and, and again, an overwhelming situation.
So how do you provide support for the caregivers? I think that's where
I go back to a lot of our common commonalities of
trying to, one of our programs is matching them with another caregiver and
(14:29):
trying to give them those resources of this is what you can expect
to happen. This is some external resources in your local
area that you can reach out to that can help you in your assistance of
whatever you may need. Honestly, it can range from a variety of things
And that also having a support system and the support person that's
been through what you're going through has been really monumental for a lot
(14:51):
of our caregivers. So one of the the primary missions for
the society is research. Yes. You do a lot of research.
What type of research? Actually, it kind of spans one of we have a lot
of different prod projects going on right now. We're constantly a part
of the if you ever see if you follow us on Instagram, you see it
all the time that we're part of all the FDA approvals that are happening for
(15:14):
a lot of our cancer treatments right now. One of my favorite
things that I, I love to talk about all the time is our clinical trials
locally here in Houston. We support about 11 researchers, which
is super, again, like I said, incredible. It's just,
we're so lucky to have the community that we do here in Houston. And we're
so grateful to be able to support and fund their research here. One
(15:37):
of my favorite things that we do is our clinical trials. Like I mentioned, one
of my favorite stories is actually about one of
our honor heroes. So if you don't mind, I would love to share with you.
Yes, please. Please. Yeah. Evan is our honor hero for the visionaries of
the year campaign. And in LLS, we have multiple fundraising
initiatives. One of them is visionaries of the year and each initiative
(15:59):
gets an honor hero. So this is a family that has
ideally been out of treatment now and has, is able to share about
their story and inspire so many other people who may not have a mission
connection and want to learn more. So Evan is our,
our honored hero this year, and he was diagnosed with acute lymphoblastic
leukemia. And his story is so inspiring. He was
(16:21):
diagnosed at the age of four. He went through his first round of
chemotherapy and they were expecting to see ultimately
no sign of cancer after that first thirty days. But
unfortunately they did. So they needed to look for alternative
methods to treatment because his chemotherapy was not working.
And he was lucky enough to be selected for a clinical trial that was going
(16:44):
on. And that clinical trial was it's all happening here in
Houston. And that clinical trial is what ultimately
saved his life. He was on a backpack that infused his medication
for a period of time. Then he went into his maintenance phase of
treatment and this past August twenty third of twenty twenty
four, he was able to ring the bell and be cancer free.
(17:06):
So super. That is a beautiful story. Great. The
best part is that he joined LLS as an honor
hero. We had no idea how LLS really impacted their
family at the time. And they were sharing the story and his mom told
me the name of his clinical trial that he was on. And so I just
looked it up just to see, cause I want to learn as much as I
(17:27):
can just like everyone else. And it happened to be that LLS was a
part of the approval process in helping this clinical trial come
to fruition. And we were a huge part of saving Evan's life too,
which was gives me chills every time. To know how many people
they'd been able to to save through these clinical trials. I don't, but I
would love to know. I'm sure we have that statistic. We do also have our
(17:49):
annual report, which is public for anybody to look through, and
it shows you all of the incredible research and trials and everything that
we're currently doing right now. Do you know how patients can
become or go into clinical trials? Yes.
So it it is a selective process and not everyone
unfortunately can be selected because they are trials. In Evan's case
(18:11):
specifically, he was recommended by his doctor. He met all these
qualifications that they have to go through, and he was ultimately
selected at the end of it. So I guess it's just, talking to your
doctor and and finding out what the next steps might
be. Absolutely. Yeah. And so
I know that right now you are starting or
(18:33):
have started actually a, special campaign to
raise funds for those clinical trials. So,
yes. So right now going on is our visionaries of the
year campaign and it started March 20 and it's going to go
until May 30. This campaign was formerly known as man
woman of the year, man and woman of the year, if anybody's ever been familiar
(18:55):
with it, but it's our ten week philanthropic competition
for leaders here locally in Houston and it spans across the
whole United States. Yeah. Well, so,
how can we get involved? Yes, absolutely. So
right now, everybody who is participating in this
competition is called a candidate and candidates are nominated
(19:17):
through our local board and our leadership committee. And it
can be anybody. It can be a stay home mom. It could be a CEO
of a company. It can be anybody is welcome to be a part of this
campaign, but they are handpicked to be a part of it. And
so it's super special to be nominated as a candidate
and then they create teams so you can join a team. You can
(19:38):
also just be a con someone that wants to donate
or participate in any of their events that they may be hosting throughout the
year. Yeah. So how can you, or what can you do
to become selected? Yes. So honestly, if you know
anybody that's competing right now, or if you want to know, if you want
to reach out to somebody at LLS, we can give you more information
(20:00):
on how to be nominated and give you the information of how to be a
candidate and see if that's something that you want to be part of. Absolutely.
Yeah. You can become a candidate anytime. So our
campaign is from March 20 to May 30. From that time
period, we will not be accepting any candidates just because the competition
is already going, but anytime before or after you're welcome
(20:22):
to sign on. And so we start
recruiting after this season ends. Oh, okay. So
what is it? What are your, your, duties, as a,
as a selected candidate? Yes. Sorry, go ahead. What is it that they
have to do? Yes. So we ask our candidates to really be
open to sharing with their network, what they're doing and
(20:44):
asking for donations and just fundraising as much as they
can. Because at the end of the ten weeks, the person that raised
the team that raises the most funds wins the title of visionary of the
year. So that's kind of just our main focus is really being
open to the ask, not saying no for people being
willing to put yourself out there, share the LLS mission
(21:07):
and share the reason why you're doing what you're doing and why
it impacts so many people in their lives and how the funds really do
go to such a great place and change lives for so many
people. And so when will you do a huge
celebration for this? Yes. So our grand finale gala is
on May 30. It's going to be where we finish off our
(21:29):
celebration of all the fundraising that our candidates have done over the ten
weeks. We see the title of who won visionary of the year, as
well as our overall impact. Last year, we were able to raise
over $1,600,000 which was incredible.
We're so excited about that. But this year we are striving for that
2,000,000. So we're really going to be pushing ourselves. Okay. I'm going to keep my
(21:51):
fingers crossed. Yes. Thank you. Yeah. Volunteers
are really important for the organization as well. I know
that I volunteered a lot and sometimes I still
volunteer when I find the time. Yes. So are you
still in getting volunteers involved? So
our volunteers, we have volunteers for all of our initiatives.
(22:13):
Everybody, if you're welcome, if you want to volunteer and just get to know about
the organization, there's always opportunities. And we would love to
find out where you can fit in. Right now, we are still accepting team
members for candidates if anybody wants to fundraise and jump on
board, but our main candidates are set in stone and they've already started
fundraising. And do you have events going on,
(22:35):
like, year round to sign up people for donors?
Yes. Absolutely. So outside of visionaries of the year, we do
have more events. So we have our big climb. It's a 50
floor climb competition. So based yes, it's done at
the Allen center in Downtown Houston and it's
welcome for families, friends, anybody who wants to do it as welcome to come
(22:58):
out. The, they have a fundraising minimum. So you just fundraise the
minimum and you're welcome to climb the stories up. And then we
also have our light, the night walks, which happened in October and
November. And one is in Houston and one is also in Montgomery County. And
those are welcome and open to everyone. Yeah. And as a
donor, I think donors are very important, very special
(23:20):
people because they're also helping. They're not
donating a liver or kidney or anything like that,
but they're donating their blood. And
in our bodies are constantly producing blood.
So if we do donate, then it'll get
replenished right away. Yes. Sorry. I don't think LLS
(23:41):
doesn't do blood donations though. That is a No. Right. Right.
No. But as far as just signing up to be a donor.
Oh, yes. Okay. Sorry. Sorry. I got confused for a second.
Yeah. No. I know that as it once you've been selected as
a donor, then you will have to
get a bone marrow to their own. Yes. There are
(24:04):
bone marrow donors. Exactly. Yeah. And it
really doesn't take a lot. And, you're, I think, I I'm not
sure, but if you are if you do become selected and
you go through the process, it doesn't take too much time.
Yeah. I'm not very familiar with the whole process myself, but I'm sure I could
find more information on it. Yeah. Well, I learned a little bit about it
(24:26):
when my sister was there going through her issue. But, and I also
learned that the recovery is pretty quick. And,
you can go about your daily life with no problem
knowing that you may have saved a life. Exactly.
Yes. Yeah. Yeah. It doesn't take a lot. It doesn't take a lot.
And change a lot of lives. Yeah. It really it it
(24:48):
helps save the patient, but it also
helps families that are having to go through it
with the patient. Yes. So to find out more
information about all your programs and services or
volunteering, where can we get that information? Yes. So
so you can go to for the visionaries of the year campaign, you can go
(25:11):
to LLS, sorry, LLS visionaries of the year Houston. If you just
search that in the Google in Google search, you can find us right away. And
then also for all of our specific campaigns, just typing in big
client Houston or light the night Houston. Is there a general phone number
that we can call to? We don't have a general phone number just because we
do work remotely, but you can email me if you want or anyone else on
(25:33):
our team. My email is just my first dot last name at l o
s dot org. Okay. And we can find it on the
website. Right? Yes. You can. Okay. And we can
just get in touch during business hours. Right? Yes. Absolutely.
Monday to Friday. Okay. And is there anything
that you would like to mention that we haven't mentioned? Yes.
(25:55):
One of the things that I wanted to mention was Carrie
Taye Barclay, who is a candidate for visionaries of the year this
year. She is the owner of French Cup Boutique,
and she is running in honor of her very close
friend, Denise. Carite is doing incredible things and she's setting
herself up for success and is hoping to win this
(26:17):
campaign this year. If you wanna support, you're welcome to go to any of her
French cuff boutique and make a purchase. For the time of the
campaign. Some of the proceeds are going back to LLS. That's
super easy way to get involved. And she has multiple locations
that you guys can also go and check out as well as
donating to her fundraising page directly. And like you said, we can go
(26:39):
into your website and, find out more
locations and all the details on how you can
donate. Yes. And that will be all included. Okay. So,
Tatiana, thank you so very much. I'm so happy that you had the time
to come and join me and talk about what leukemia
and lymphoma are and how the society
(27:00):
helps families and patients. Yes. And and how
we can help as well. Thank you for all that
information, and I hope that you get a lot of people visiting your
website Thank you. Just to find out what it is. Because even
if we don't have a friend or a family member, you
still hear about it anyway. And and so it's good
(27:23):
that if you know what it's all about. Yes. Thank you so much
for having me. We're so grateful for this opportunity and help to connect with a
lot of people. Thank you so much. Thank you. And of course, thank
you all as well for joining me for this week's edition of
Spotlight Houston. And if you have any comments
or have any story ideas, please let me know.
(27:45):
Send them your way.
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