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Taking Charge of Your Health


>>Good afternoon, and welcome to the National
Cancer Institute’s latest Facebook Live. We are broadcasting today from the Children’s
Inn on the NIH campus. Today we’ll be talking about the psychosocial aspects of childhood
cancer treatment. My name is Dr. Lori Wiener, and I direct the Psychosocial Support and
Research Program at the National Cancer Institute.>>I’m Dr. John Glod. I’m the clinical director
of the pediatric oncology branch at the NCI.>>I’m Stephanie Feinberg. I’m a resident
services manager at the Children’s Inn at NIH. We are a nonprofit organization located
directly across from the NIH Clinical Center that provides housing and services to children
and young adults going through treatment at the NIH.>>In addition to the three of us, we will
also be joined toward the end of this event by a parent who has a patient at the Children’s
Inn.>>In conjunction with the topics that we
will be discussing during today’s broadcast, we encourage you to ask comments, ask questions
in the comment section of this video. We ask that you keep your questions and comments
to today’s topic. If we do not get to your question during the event, we will answer
them as soon as possible in the comments. As a reminder, we cannot answer your questions
about your treatment publicly. Please talk to your physician about these questions directly.
Please note that the NCI reserves the right to not post comments and to remove comments
that are inconsistent with our policy at our complete discretion. Additionally, if you
have further questions, you can contact the National Cancer Institute’s Cancer Information
Service at 1-800-4-CANCER or by visiting cancer.gov/contact for live chat help. OK. Well, let’s go ahead
and get started. Our first topic that we will be discussing today is an overview of what
exactly do we mean when we talk about psychosocial aspects of care for these children.>>Thank you Stephanie. The diagnosis of childhood
cancer is a life altering event for the child and for the family. And pediatric oncology
treatment goes beyond the medicine and the care that is provided. One has to think about
the whole child and the whole family. We think about the child’s emotional well-being, psychological
well-being, social well-being, spiritual well-being. So, psychosocial care encompasses all of that
care. And it’s critically important throughout the course of the treatment. And beyond, that
we consider that whole child and family and how they cope and how they adopt this excellent
data to be able to support each of those make a difference in the outcome.>>OK. I think those points are exactly key
of what the Children’s Inn does. The Children’s Inn, our mission and our goals encompass three
overarching themes. First and foremost, we want to make that childhood possible. We want
every child no matter what their illness and their burden is to be able to feel like a
child again and have those experiences of participating in programs and activities here.
Second, we want to reduce the burden and the illness on the family themselves. We want
our caregivers to feel like they have support amongst staff amongst each other participating
in experiences to bond with other caregivers, participate in respite events. And last but
not least, we want to support the research of the NIH themselves. If children and young
adults are willing to come here and are excited to come here, we hope that that carries over
for that and being able to participate in treatment at the Clinical Center.>>Yeah, that’s truly psychosocial care. As
you know, we often say there’s no health without mental health.>>Exactly.>>And we do provide that.>>Yeah, exactly.>>I know that it’s really important for the
patients that we bring to the NIH. We asked the patients and the families to go through
a lot of really difficult circumstances to participate in the clinical trials. And one
of the things that’s especially difficult is almost all of our patients are traveling
far away from home. They’re away from their normal support services. They’re away from
their normal family supports. And I think as the Inn and the psychosocial support at
the NIH is really important to allow families to be able to take that giant leap and move
away from home to participate in clinical trials.>>I think that brings up a good point of
why the Inn was created in the first place back in 1990. Our doors first open and Dr.
Lori Wiener can attest to this as she was one of our founders of the Inn. So I’m happy
to hear your thoughts as well. But essentially Dr. Philip E., saw parents staying in the
hallways after a day full of treatment or sleeping in their cars. And that’s not good
support and good for their mental health, as you stated earlier, for their child going
through treatment and for the caregivers themselves. So the Children’s Inn was created to give
them that place to stay of after a long day, they have a place to rest their head. And
not only that, but they have food services, so that doesn’t have to be a worry. They have
support services. They have programs for children to just forget about their whole day at the
Clinical Center and just feel like a kid again.>>That’s very true. How often the children
say, you have to go back to the Children’s Inn. They forget that they’re coming up to
go out for treatment. And it is because they have that to look forward to that they’re
much more adherent with their treatments, and they want to be able to come back and
more research could be done. And yeah, more cures could be found.>>Absolutely. I tell the same story over
and over. But I feel like there’s so many kids that come here who are so excited to
be at the Children’s Inn and mom and dad will come over to me and say, I totally– they
didn’t even remember that they’re here for treatment, they just are so excited to be
at the Children’s Inn. So thank you for all you did to make the Children’s Inn possible.>>A lot of people involved.>>Yeah, looking forward. Go ahead to Section
2.>>Sure. Let’s see if I can work the computer.>>OK. So topic number 2, let’s focus more
on services that we provide to support children with cancer. So what are those types of services
and experiences do you use or we use to provide that support to children with cancer?>>So psychosocial support includes many different
interventions, again, as I said, from the time of diagnosis through the course of treatment
and beyond. So it can be for a young child being able to understand what’s happening,
and for parents to need some guidance and how to disclose the diagnosis to their child,
and to the other family members. It could be for the very young child to be able to
just process what’s happening to their bodies, and to be able to help their parents to be
able to parent their child, who is now taking medicines that may make them feel sick and
having procedures that can be very frightening. We use many different techniques. It could
be for a young child, storytelling, therapeutic play, medical play for their preschool in
the school age child. You know, as they get older, we have behavioral interventions. Dr.
Glod may refer a patient over to me because he needs them to be able to swallow a pill
to participate in a clinical trial or was too afraid to be able to get their blood drawn.
So we’re not able to– be able to start the medication. And we would use different techniques
to be able to help them to be able to cope with that. It could be for the school age
child who wants to go back to school, but he’s afraid because people will tease him
or her because they don’t have hair, or to deal with more body image issues, especially
for the teenagers from anything, from hair loss, weight gain or loss, to amputation.
And for adolescents, helping them really start to participate in decision making and adherence
to treatment, a sense of ownership. And for those who survive, many other issues come
up to be able to get reintegrated and to be able to learn about self-care, transition
to adult care. And for those who aren’t going to survive, to be able to help them, to be
able to process that, to be able to do legacy work, to be remembered, to be able to communicate
this with their families, and help their families communicate with them, and to be able to help
the whole family member through that process. So it’s a process throughout the whole trajectory.>>That’s right.>>I know when we have patients who come to
the Clinical Center, we want them to be as comfortable as possible in the Inn and the
Psychosocial Support Service can really help with that. But we also, it’s also very important
to have the child no matter what their development and no matter what their age to understand
to the best of their ability, what’s going on, what sort of procedures they’ll be subjected
to, what sort of– what it– for the older kids, what is a clinical trial and what are
the ramifications of participating in a clinical trial. And one of the– we use some of these
psychosocial support services to try to help with that. From Dr. Wiener’s group, to the
school teacher, to the Child Life Services, they can incorporate play and school and other
discussion with someone outside the immediate medical team into trying to understand what’s
going on. Yeah.>>So psychosocial care is integrated into
every aspect of care. There’s not medical care, and then psychosocial care. It’s all
together. You can’t think of a child just in terms of the medication that they need
to take or a disease. You need to think of them in the context of their family and the
context of their emotional, psychological, social, and spiritual well-being.>>Absolutely. The Children’s Inn offers different
types of programming. We have educational programming, recreational programming, and
therapeutic. Falling in the therapeutic program is actually our most popular staff member
Zilly. She is our therapy dog. One of my favorite stories of Zilly actually hearing both of
your conversations of working with these patients, one of our patients had these very painful
injections and every time he had those painful injections, he asked that Zilly sit with him,
to support him and get him through those injections. And he did. And so their family grew to love
Zilly and know what that support can make a difference for them. So they actually contacted
Zilly’s breeder and they have their own Zilly now, the same name as Zilly and Zilly’s cousin
who lives back home. But these types of experiences and hearing these stories that are so powerful
and make such an impact on a child’s life is definitely important.>>I hear that Zilly is very popular at Instagram.>>Yes.>>Zilly does have an Instagram. Please follow
our Zilly, the therapy dog.>>Yeah. Zilly is great. The kids love Zilly.
I have had on more than one occasion had to change the time with appointment because the
patient had an appointment with Zilly, conflicted, so we had to move some of their other appointments.
But the kids love Zilly and talk about her all the time.>>Absolutely. So let’s talk a little bit
more about referring a patient to the Inn and how do they get there. I’m happy to talk
about it myself. But if either of you have any experience on the clinical side of getting
to the Children’s Inn I’d love to hear your input.>>You know, so I can talk a little bit about
that, I would say most of our patients who are here for repeat visit have already been
to the NIH, know the Children’s Inn and we’ll call the Inn and set up their own visit to
the Inn even without us doing anything. I think, however, some of the kids who have
never been to the NIH before don’t know about the Children’s Inn and we can tell them about
it and put them in contact with the Children’s Inn. And this goes anywhere from really little
kids, toddlers all the way up to young adults. And I think the Inn does a great job of accommodating
and having activities for the littlest kids that we see up to kids that are making that
sort of tricky transition from being a kid to a young adult.>>So we actually house patients up to age
30. Does– The number changed a couple of years ago, used to be age 26. But as you both
are aware working with–>>Thirty is still a kid to us [laughter].>>Well working with–>>Yeah, I was pushing that one.>>Yeah, perfect. Well, I’m sure you could
attest to it. But for our young adults that are 26 to 30, if they have a rare disease
or a critical illness and have gone through treatment their whole life, by the time they’re
creeping up on the age where they’re not able to go to the Inn anymore. They want that support,
they need that support. So increasing our age, and I’m happy to hear your thoughts on
it as well allow them to have that extra support as well.>>Absolutely, you know, the Children’s Inn
allows our patients and the family members to connect with other people who just get
it. You know, when they go back home, people don’t understand at all what they’ve been
through. And it’s not that they’re here. And they need to talk about their medications
and the name of their disease. It’s just knowing, they’re amongst other people whose lives are
similar to their own, that they can’t guarantee tomorrow, that every day is just really precious.
And we really try to collaborate as closely as we can to be able to provide the best medical
care that we can to support them therapeutically through our psychosocial support and research
program and clinical interventions of the hospital. But then they come down here where
they could be able to balance the light and just to be able to relax in an environment
that feels as much like home as possible. We really found through our research that
the people who’ve done the best are those who don’t, they accept their illness, and
they could be able to talk with other people about what their illness is, but they also
have a life outside of their illness. And so a lot of the work is also helping them
integrate back at home, back into school, back into work, or back into their activities
that they want to enjoy beforehand. And you help them with that as well. You have grants
that be able to help individuals who may want to be able to learn a new skill or take a
class when they wouldn’t ordinarily be able to do so. So it’s a really beautiful collaboration.>>Absolutely, perfect. So when we get those
first visits to the Children’s Inn, they walk in, the first time I actually came to the
Children’s Inn, my supervisor described it as the Walt Disney World of Maryland. And
it certainly feels like that here. And so when children come in for their first time,
they get that sense as well, then they first walk in, we have lit up mailboxes for thoughtful
treasures that every day they come back from the Clinical Center, they are able to go to
those mailboxes and pick out their goody that they get. And so it’s exciting just the short
walk from Building 10 to Clinical Center down to here, they have something to look forward
to. We offer field trips throughout the week. Similarly, we want them to have experience
to look forward to as well. So those experiences range from things that they might not even
be able to get back home. So, horseback riding, sailing trips, other therapeutic activities
and opportunities like vis arts which is creating last pieces colored art.>>It’s very popular.>>Yes, absolutely.>>I think one of the events at the Children’s
Inn has collaborated with us on is, there are times when we’ll have a number of kids
that all have the same diagnosis that will all be seen at the Clinical Center at the
same time. And one of the comments that we always get is the kids are really, really
enjoyed getting to have social time with other kids with similar issues and not just seeing
them at the Clinical Center when they’re getting their–>>Right.>>– CAT scan or something.>>Yeah. And a population we really haven’t
talked about here is siblings, and so hard for the brothers and sisters who are back
at home and don’t really know what’s going on here. And we know that a brother, a sister
who’s really sick, it’s pretty visible, what’s going on with them. That the pain that the
sibling back at home may experience is invisible. So one of the programs that we collaborate
with the Inn is sibling day, it’s an all day event, where different members of the Clinical
Center really open up their departments, for example Laboratory Medicine. It’s an entire
room of labs, five different stations where they get to experiment under microscopes and
be able to phlebotomy, and to be able to learn about platelets and white counts and red blood
cells with jelly beans. And, you know, and then they get to a mock scanner, you know,
where they get to see what it’s like to go through a scan. And what that process is like,
could be for their brother or sister. And then when it’s available, we even have an
operating room where they could be able to scrub in and to be able to have the experience
of what it’s like to be have brightly it may be but to be able to see what takes place
in an operating room. And then we come down here and we have activities. We have a cardiologist
who does a really fun event of a lunch subs. We have therapeutic art. We have therapeutic
music. We have therapeutic games. And at the end of the day, my favorite part, my next
favorite part, my favorite part is that they come in and there’s a standing ovation for
them from members of the healthcare team, from their families who surprised them to
be there. And each person gets up stands up and gets an award for being a SuperSib. And
the applause of being who they are, of being the sibling that is such an important part
of the family is fabulous. What’s your favorite, favorite part is all that all you can eat
ice cream that takes–>>Oh, yeah.>>The seven days seems to fall at the perfect
time every single year, every time we start advertising it to caregivers, caregivers always
say, that’s amazing. The focus is always so much on–>>The patient.>>– the patient. But this gives a focus
on a sibling and allows them to truly understand what their sibling is going through.>>Yeah.>>OK. I’d love to hear more of what you all
do in terms of your study. So what studies are being done at NCI that are related to
that psychosocial care? And how are their results helpful? How can they help us?>>Well, thank you for asking about the research
because we have a– it’s a beautiful marriage. We see the patients clinically and provide
those services. And it’s really what we learn from those clinical sessions and those clinical
times about things that haven’t been studied yet, or new interventions that are needed.
So for example, one of the studies is developing a screening tool. So important to screen for
the psychosocial well-being of the child and family, but kids don’t like to fill out a
lot of forms and either do families. And so, we have a new electronic screen, they said
it’s OK to check in with them. So it’s called checking in. So we could figure out and know
what kind of symptoms are really bothering them or interfering with their life. We also
know for parents, if they’re in a couple, a relationship, or a marriage, so much of
the focus is really on the child and the medical care, and what’s happening maybe even at home,
but rarely do we really investigate and ask them about what’s happening to their relationship.
So we have a study that’s looking at the impact on a relationship and identifying the time
points. When a couple actually gets closer, but also the time points when they’re most
emotionally detached, which will be into an intervention to help them to stay strong.
We have a protocol that is looking at developing a– also a screening tool for the symptoms
of children living with chronic graft versus host disease, do a lot of work with sibling
donors. And we’re looking at the quality of life of those donors and how to best prepare
them for the donation, as well as to be able to follow them after the donation and to improve
their quality of life as well. And then there’s the implementation of mindfulness based interventions
to help patients and families cope with the stress of their conditions. There’s another
protocol that’s looking at the impact of exercise for children who have survived brain tumors
to be able to improve their cognitive functions. And that’s just a few of many of the studies
that we have going on.>>It’s incredible.>>I think Dr. Wiener’s research has really
been critical. And I think there’s a couple of other things that I’d like to bring up.
One is the cancer research, I think, is evolving in a way where we don’t only look at, you
know, what is the– how many centimeters big as the tumor, but we want to look at, are
we really making any impact in the quality of life of the person being treated. And so
patient reported outcomes are now being incorporated into many of our studies.>>All of them.>>And that’s been all of our studies.>>Still working.>>And that’s, that’s a tremendous benefit
to patients in helping us to understand not only are we impacting the cancer, but we really
are treating the patient. So we are positively impacting the patient. And I think that’s
been a great way of matching together basic science and psychosocial research. And the
other thing I wanted to bring up is, we do research on a very small number of patients
here at the NIH. But really what we would like is for research done at the NIH to be
used everywhere. And maybe you could talk a little bit about the guidelines for psychosocial
care for patients with cancer like you were leading.>>Absolutely just kind of back check on one.
So, studies that Dr. Glod and I work on together, as he mentioned earlier, are some really rare
diseases. So part of the psychosocial part portion of those protocols is for the first
people to ever really describe what the diseases like to live with in their natural history
study. So we watch how this changes and the impact of the disease on them as they age,
which is really important. So you talked about implementation. So I’d love to be able to
talk about the standards. And first, I’ll just mention another study that we know from
adolescents and young adults that they often really scared about what’s going to happen.
And not knowing what the outcome of their disease. We often see people hear unpleased
on the treatment, so that they may have, you know, really seen many other treatments before
and the prognosis is poor. And because we listened to their voice and about what’s most
concerning to them, they came up with the idea of having a document that was created
for people their age. So a document created by and for people their age, called an advanced
care planning guide called voicing my choices. It’s right now there’s been 53,000 copies
distributed throughout the world, and it’s in four languages. So yes, it’s really important
that we disseminate that. The standards of care really come from the brainchild of Victoria
and Peter Brown, remarkable parents with their courage after the loss of their child, Maddie,
to osteosarcoma, to realize that it’s not just about the medicine, that’s their logo,
that we need to think about the psychosocial care of children and their family members.
And so, we had a big group of people over 80 psychosocial providers from all over the
country, including Europe, to be able to work closely to develop the first set of evidence
based standards. And we have 15 of those standards. And we’re working really hard to be able to
make sure they’re implemented in all settings.>>That’s wonderful.>>Yup.>>OK.>>All right.>>OK. Well, next, we wanted to talk a little
bit more about what we do here at the Children’s Inn, we’re actually lucky to have one of our
resident parents here, Tracy, to help me talk a little bit more about that.>>Hi.>>Hi Tracy.>>Hey.>>Tracy, do you want to introduce yourself?
I’m Tracy Rico, I have a daughter who is currently up at the NIH just had a surgery in this part
of getting to be a part of this beautiful organization, the Children’s Inn.>>Surgery this morning.>>A little emotional today, I’m sorry.>>Well, thank you for being here and for
willing to share your story and share what the NIH has impacted you and your family.
We appreciate that. So one of the big things that the Children’s Inn does and we touched
on it a little bit earlier is help families and children while they are away from home.
So as you heard from Tracy, she’s from California. So Tracy, can you talk a little bit about
your experience when you came here, what was it like being away from home?>>Our first experience was six weeks ago,
my daughter and I came out here at the pleasure you were a huge blessing to us. We came out
my daughter had, was possibly getting into a research study here. And she got really
scared, I mean really. And she was ready to run and go home and have some tension between
us and the Children’s Inn became that home away from home Stephanie and stepped in and
was very comforting to not only me but to my daughter. And we’ve pushed through and
we made it. But there were just little things that meant so much. And we met other families
that we were able to talk to and it really provided comfort and even having a place to
run away. They have these really cool chairs [laughter]. And went free, not really freaked
out, she ran and just sat in those chairs and started spinning it became like a child
and it just– it really helped. It was became our home away from home.>>I think that speaks largely to what the
end is all about. We offer, you know, all those different programs and exciting things.
But it also, you know, really focuses on that comfort and that respite from exactly what
you’re mentioning of what you’re going through. Part of my role I was on family programming
so I got the fun of planning our monthly parties. But I transitioned to resident services and
resident services really focuses on building rapport with families like yours that you
know, I think about each and every day and care so deeply about and making sure that
you have that support that you don’t feel alone. There’s been so many times that we’ll
have children here. There’s one that stands out in my head. She is always extremely happy,
extremely smiling, and I talked to Mama Day [assumed spelling], they are– she was saying
she’s not really like that back home. So when she’s here, her mom’s like, I don’t really
think she’s always a super happy girl. But she’s really not always like that. And I said
why is that? What makes it being here different? And she said because she’s not alone. She
has all these friends that she can spend time with. Mom has other caregivers she can spend
time with. And they don’t feel like any different. They don’t feel like they have to walk around
with a face mask to hide their visible tumors. They feel like they can just be them and have
friends here.>>We’ve actually connected with one another
family from when we were here six weeks ago. That has been just a comfort and an encouragement
to us. And we met another family. We would love to reconnect with them. That is actually
from California near where we are. And it just– I mean it happened, sitting around
the table eating dinner, and just being normal. And that’s a huge, huge thing when you’re
traveling from medical to.>>I have to tell you, I used to have a friend
three support groups a week. And when the Children’s Inn opened people, we don’t need
this anymore. They say, we need each other and we talk just about everything just anyone
talking about here at the Children’s Inn, which was wonderful.>>I think our services go beyond that. It
helps, you know, reducing the burden, which we talked about earlier, it helps financially
as well coming across the country and, you know, having to take days off work, some people
have to take months off of work and don’t have that income. The Children’s Inn offers
breakfast, lunch, and dinner throughout the week. We offer grocery gift cards for families
to go grocery shopping, especially when people have dietary restrictions. We want them to
be able to pick out their own foods. We offer educational support, if people need funding
for an activity or programs, we have support that way. We are always open to hearing how
we can support our families and make sure that this experience for them is as seamless
and easy so they can prioritize spending time with their child or young adult who is here
for treatment.>>It’s something that we discovered on this
trip that’s been helpful as my daughter just first year college and a huge stress for hers.
How do I balance my schooling? And she does not like to sit in a room and do her homework
and because she needs a little outside noise distraction. So the last two days, she has
set up in the little area, bistro are, and has done her homework and it feels like her
college experience. So she’s getting schooling done as well, which she wouldn’t do that in
a hotel because she’d be like, isolated in a little room.>>Right.>>And that– And I didn’t think about that
until she brought that up. She goes, mom, I’m so glad to have this. I wouldn’t get any
homework done at all. And that’s important to have that. So little unexpected blessing
of happiness setting that welcomes that support.>>Yeah, I think the family kind of atmosphere
at the end really is talk about that, parents has talked about that.>>And food.>>OK.>>And Georgetown cupcakes.>>Yes, Georgetown cupcakes, actually that
brings up a good point, our most popular event is Bingo. If you are ever here, I think it’s
the second and third or second and fourth Tuesday of every month, we do have Bingo.
We have a wide range of activities as recreational programs that I told you about. But even educational
bouncing off what you said, we know people are here for extended periods of time. And
Prima [assumed spelling] just started college and she’s able to do homework. And some people
who are here who are missing school, we offer tutoring for them. We offer– if they don’t
speak English, we offer English lessons for them. We’ve recently started a STEAM program,
so Science Technology Education, or Engineering, Art, and Technology. We want students and
children to be able to feel like they can grow while they’re here and have those hands
on experiences. Again, not to prioritize their time at the Clinical Center, but to be able
to, you know, feel like a child and grow here as well.>>And we have a school at the Clinical Center
for our patients. And unfortunately, the school can’t teach the siblings and the Children’s
Inn can and that’s such a gift for them and for their family members.>>OK, wonderful. Before we move on to our
live questions, which please continue commenting below. We wanted to talk more with Dr. Glod.
So this summer, we heard from the National Cancer Institute about the Childhood Cancer
Data Initiative. So Dr. Glod, can you talk a little bit more about that?>>Sure. So the Childhood Cancer Data Initiative
is a program that will help to improve the treatment of children and young adults with
cancer by allowing for data from different sources to be localized and used by different
researchers. So there are lots of very talented people who are working on trying to improve
the treatment of kids with cancer. And making a place where data generated by all of these
different institutions and researchers is available for everyone to look at and to use
is very important. I think this data initiative will be also very important for psychosocial
data and allowing data from psychosocial research to be pulled and shared.>>OK, great.>>Wonderful. All right. We are now going
to turn to some live questions from the viewers. OK, so our first question, we mentioned that
the Children’s Inn goes up to age 30. So what’s it like for older teens and young adults there,
Tracy, if you want to add on to this, feel free to–>>My daughter turns into a child. I mean,
she’s 18 and she’s gets getting– she was getting, I said playing in the little chairs
and stuff. And we went out and watch the mascots on we got in on Tuesday. And they had mascots.
And so even though, you know they’re older, there’s that comfort of being like a child
and, you know, even the mailbox, she got a little note in there yesterday and it made
her day. Even though she’s older, she’s a young adult, if– there’s still plenty. And
I think it’s important, because it just and she’s still my little girl. And she has to
be that. But that one of the families we met, it’s dad that’s coming here for the treatment,
and they’re staying here. And it’s their daughter and wife is here as well. And so, you know,
it just the whole family thing. I think that there’s plenty for, you know, young adults
and adults to do here, even escape and get away, get a cup of coffee or sit outside and
just get fresh air.>>I know many of our young adults enjoy the
young adult night out, with just no families with them, they just get to go out to a restaurant,
and it’s just with other people their age and I think it’s 18 to 20.>>So we have adult night out, we have twice
a month, and that ranges from different activities. We’ve gone to paint and set fruit juice, of
course. But bowling, we’ve gone to restaurants, especially with the nicer weather, they love
being able to eat outside. And allows our young adults to be able to meet each other
and connect. And although they’re from all over the world with different diagnoses, they
are able to make–>>And languages at times.>>With languages. Exactly they’re able to
connect with each other and feel like they’re not as isolated and alone here. At the Children’s
Inn itself, we have a teen and young adult lounge, which is a huge hotspot for our teens
and young adults that they’re able to go in. And we recently got a smart TV in there. So
they’re always watching their Netflix or Hulu on there. But it’s just a nice like getaway
that they are able to have their own space.>>Yeah, I think it’s really important even
for people up to age of 30. And if you think about when you start really establishing your
life and your relationships, it– those that happens in between the age of 18 and 30, and
so if you have a serious illness, that really causes problems, and causes more difficulties.
Because you don’t participate in the normal young adult activities, you’re not getting
your first job, you’re not going away to school, some of our kids. And I think the ability
for young adults with similar issues to be together and discuss things together really
makes a huge impact.>>Just being alone in a hotel room when you’re
not feeling well is not going to– it’s hard.>>Absolutely. All right, we’ll move on to
our next question. Are there any stories you can tell? Or tell us more about why you do
what you do?>>That’s a hard one.>>You can talk about [inaudible].>>Yeah, you know, I think it’s its hard to
trace back just to figure out why. Why you do what you do. I think thinking about why
I continue to do what I do, as opposed to getting another job somewhere else is that
I think there’s a couple things that are really great about working with patients here at
the NIH, I think patients and their families are so inspirational. Not only are they going
through something very tough themselves, but you’re being very philanthropic in the things
that you’re doing are helping a lot of other people. And that’s, I think, really important.>>Something that Tracy and I connected on
their first visit here. So I got into this field, I got diagnosed with a rare disease
when I turned 21. And when I met Frida [assumed spelling], I saw a lot of myself in her. And
I think that’s why I was kind of drawn to your family and to build that rapport with
you all. Similarly, as I had mentioned so many times today, young adults and people
with, you know, cancer, other kinds of illnesses feel isolated and alone. And at that age as
a young adult in my life, I didn’t really know what to expect and what to do, and who
to talk to, which led me into this exact career. Sorry.>>Tissue [inaudible].>>Sorry. And what you do is a huge importance
because you connect with my daughter because of that. I think that’s why she made the decision
to go through with going forward with this, you sharing that. Sorry.>>All right.>>It’s an honor. You know, it’s I could say
it is such an honor to be side by side with the families during some of their most difficult
and challenging, frightening times of their life. And when people at home can be there
to support you, but they don’t get it, they don’t understand what you’re going through.
They can’t see what’s happening on those floors, and to have somebody who could be there. And
for me, just the honor of being able to be by somebody’s side, whether it’s for a new
diagnosis or end of life, or if it was to help. Because I don’t have a meal that they
just need to be able to find just being there for the good days and the bad days. And just
taking that journey is a tremendous gift. So we thank you and families like yourself,
that allow us to be able to be part of your family to be part of their lives, and hopefully
to help you grow through this and beyond.>>So we’ll head into our next question. What
are some myths that you think people believe about the psychosocial parts of cancer care?>>Good question. It’s a great question. Every
cancer patient is depressed. That, you know, they can’t think of anything but the cancer.
That mental healthcare is stigmatizing is only for people who are crazy. Not recognizing
that we all need support and help and guidance from people who’ve been there and done that
and can help them grow. Other myths.>>I would say from the standpoint of someone
who’s coming from more of a hard science background, you know, I don’t think I realized quite the
rigor of the science of psychosocial research until you showed me.>>Good, that just made my day. I can retire
now.>>Great answers. Our next question, can you
come internationally for a study at NCI or stay at the Children’s Inn? So the Children’s
Inn has house people from every single state in over 90 different countries. So the answer
is, yes, absolutely. And we love to support families from around the world to be able
to provide them this groundbreaking treatment.>>Yup. We have kids from all over the country
and all over the world. And every one of them helps us to make treatment better for kids
with cancer.>>Absolutely. We met a family yesterday happened
to be the same age as my daughter. And they sat and chatted a little bit and she’s from
the other side of the world. It was pretty neat day doing comparisons and getting a little
world education.>>It’s a new one.>>You know, it’s funny now some of the patients
that need each other now it’s with the technology available, it’s possible for patients to keep
in contact with each other no matter how far away they live. So it’s interesting some of
the relationships that develop.>>And they have translators on their phones.>>Yes.>>Yeah.>>Yes, which is so helpful. Like, we have
a Facebook group for our children’s and families and people are posting in there all the time,
different stories and pictures of back home. We have international nights here where our
families are able to make a meal and cuisine. Back home one of our residents, she is from
the Caribbean so she made a home cooked Caribbean meal, and she was just glowing. She was so
excited to share that with everyone.>>Great.>>All right, so our next question. I have
more questions about the Children’s Inn, what is the best way to get in contact? So, if
you visit childrensinn.org, there is a lot of information on there. You can also call
us our number is 301-496-5672, and we would be happy to help you 24 hours a day. All right.
I think that’s all the time that we have for questions today. Is there anything anybody
wants to mention before we sign off?>>Thanks.>>Thank you.>>Thank you for listening.>>Absolutely.>>Thank you for all you do at the inn.>>Thank you for all you do.>>OK, wonderful. So I’d like to remind all
viewers that this video will appear both on the National Cancer Institute’s Facebook page,
and the NCI’s YouTube channel. If there are any questions in the comments that we did
not get to, please be assured that we will answer them shortly. To find out more about
today’s topic, please visit NCI’s contact center at 1-800-4-CANCER or by email and live
chat at cancer.gov. You can find other cancer clinical trials at trials.cancer.gov. Thank
you all for tuning in to the latest social media event hosted by the National Cancer
Institute. Thank you.>>Thank you. Bye-bye.>>Thank you. Bye-bye.

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