PTA Resource Fair: Programs & services for kids whose parent has or had cancer (2023)

Meagan Lockhart 0:05
Perfect. Welcome. Thank you everyone for coming. I hope you can hear me okay. Thank you to the wonderful organizations who have agreed to join us today and tell us some information about them, their services, and how they can help our kids as we go through this journey together. So we have six wonderful organizations today, and they’re all going to present for a few minutes. As Julie said, if you could please leave your questions in the chat and then we will either get to them either right away, or at the very end of the session, to all of the presenters. And then the first person we have on deck to present this morning is Dominique, who also goes by Dom, from Camp Kesem.

Dom Hollins 0:59
Thank you so much, Meagan. First up on the sharing screen, let’s see how technology works. Good morning, everyone. Good afternoon. I’m central time. We just hit lunchtime. I’m going to share my screen and dive in to share a little bit about my organization Kesem. Can you all see it?

Julie Clauer 1:19
Yes.

Dom Hollins 1:20
Alright, ready to go. So I represent Kesem. I’m Kesem’s Chief Brand Officer, but I want to talk about Kesem today. For those of you who are unfamiliar with what we do, our mission is to support children through and beyond their parent’s cancer with free, funfilled, creative programs and a lasting community. I’ll dive into a little bit more about what that looks like. But we really center on creating fun, supportive spaces for children. In terms of what we do, just going into little bit more detail here, we really focus on thinking about building community as a way to really transform the experiences they have with their parent’s cancer journey. So as I mentioned before, we’re a free organization for all of the programs and services we offer. Our services are free and year around support. And what’s also important about who we reach is that we’re talking to children who have a parent that is at any stage of their cancer journey. So we want to make sure that all kids, no matter what their current experiences, if they have lost a parent or caregiver, if their parent is going through remission, or currently under treatment, that Kesem is a space for them to come and connect with others and get support. The way our model works is that we actually focus on peer-to-peer support. So we actually focus on engaging college students who are our core volunteers who actually deliver our programs. So they deliver our flagship program called Camp Kesem, which I’ll talk about in a few moments, but also a bunch of other free programs that we provide throughout the year in support of these children. And what we really are just focusing on is just creating a space for these young people to escape from their parent’s diagnosis, or just even if it’s for a short period of time, to really have a space to just be a kid, learn some coping mechanisms as well, and then just kind of fostering this ongoing support and community that’s really focused on helping these kids build resilience, confidence and just kind of find happiness and joy. So we just really invest in that recognizing that when there’s a cancer diagnosis, as we all know, right, it doesn’t just affect the person with the cancer diagnosis, it affects the whole family. And so we want to make sure that we are able to lift these children up and hopefully as a byproduct of that it is also supporting the family as well. In terms of where we are and where we offer our programs, we are in 44 states. So we’re a nationwide organization. As I mentioned before, we lean on our student volunteers on college campuses.

Dom Hollins 3:44
We have more than 130 chapters across the country as well. You can see where we are a little bit in this map. Our student leaders are 4,000. 4,000 student leaders serving almost double that in terms of children each year. So we are really everywhere. And we work really diligently to connect families with chapters that are close to them, and that they can build community and have that localized support.

Dom Hollins 4:07
In terms of our programs and services, as I mentioned before, Camp Kesem is what a lot of people know us as. We do offer, obviously our flagship program, that’s how we got started. We have some other touchpoints that we’ve introduced as well that we’re really excited about to provide that year around support, but Camp Kesem, in particular, is our free sleepaway camp through the summer. It’s for children 6 to 18. As I mentioned, it is for a family cancer diagnosis at any stage, and we really just focus on just creating those fun experiences. What is really important and I think a benefit of our model as well is that once a child is a part of Kesem, they are welcome back year over year until they’re 18 years old. And so it’s one of those that you can build confidence that your child has something to go back to, faces that they’ll know, relationships that they can kind of lean on year over year and we think that’s just really important in terms of that community of support. When you think about what we do at camp, it’s a bit of a different model. As I mentioned before, we focus on fun. So the activities are really targeted towards kids at their specific age groups. We have our camp counselors, we also have professional staff that support with mental health as well as just ensuring our safety protocols and policies are adhered to. But it’s a camp and so it’s a lot of fun, traditional camp activities. And there’s some tailored programming that we do throughout the week that really creates the space for children that want to to really talk about their experience with cancer. It’s very much an opportunity for you to opt in, if you’re comfortable, but also allowing children just to hear from others and if they feel like they don’t want to say anything, we’re not forcing that. So it really is creating a space for kids to kind of map out how they want to engage, and cope and reflect on their experience. In addition to the programming that we have at camp, we also try to accommodate families as best we can. So if you are a family that might be interested or know someone that might be, but you’re saying, oh, there’s some barriers to getting us to camp, or there some things I’m concerned about, I would encourage you to still reach out to us because we really do try to accommodate specific needs. And so that can be anything towards I need help with travel or I need help with getting camping supplies. We have some avenues to help families navigate that. And then in addition to that, we have these year around offerings, our Friends and Family Days, which are these in-person fun day events that happen in the spring and summer. Kesem By Your Side, which is a local service that we offer through our chapters that if you are a family that may need special support, some additional support at home, or need things to be brought to you if you’re going through some challenging phases of your treatment, there are ways that you can actually tap into having our local leaders kind of come and provide some additional volunteer support directly with your family. And so we wanted to tailor that. And our Special Deliveries are some messages that we send throughout the year to ourkiddos that are just recognizing their birthdays, but also more poignant moments like memorials just so they know that they’re not forgotten, and that we’re thinking of them at these critical milestones throughout the year. And everyone who joins our community gets a warm welcome just kind of inviting them to be a part of Kesem and helping to set the expectations for what we do, and how we’ll show up for them throughout the time that they’re a part of our programs. Just going to highlight here, what we know to be true from our years of practicing and delivering for families is that we do have an impact. We have heard from our parents that their child is advancing and having great strides in areas of self esteem, coping skills, competence, as well as social emotional intelligence through the benefits of our programs.

Dom Hollins 7:25
So just some stats here in terms of what parents have said about Kesem. And we are just so grateful that they see the value and think of us as part of their family and an extension of their family to the support that we offer. As I mentioned, we have a multitude of programs for families to kind of lean into. We currently have open seats available for our camps this summer, which are actually starting in just less than two weeks. But a number of our chapters across the country do have seats available. And so I would encourage anyone that is interested in applying or wants to learn more just to visit our website at kesem.org. You can apply directly on the website and we’re moving very quickly to address those applications and get signups and get folks information about attending camp this summer. That’s all Thank you.

Meagan Lockhart 8:12
That’s fantastic. Thank you so much Dom. And being in Canada, my kids cannot go to Camp Kesem. Although we do have a number of Canadians traveling down south this year, from what I’ve heard. But it’s so great to know about your other programs as well. I had not heard about those much, just the rave reviews about camp. But that’s so fantastic that you continue to support the kids throughout the year, not just the awesome time they have in the summer.

Dom Hollins 8:40
Thank you so much. We appreciate that.

Meagan Lockhart 8:43
Thank you. And then our second presenter is Becky Keller with the WunderGlo Foundation. Thank you so much for joining us and I can’t wait to hear more about the offerings that you have for the kids and then I think you have one for the parents as well.

Becky Keller 9:01
Yes. Okay, so I don’t have any visuals, but I’ve provided flyers that I’ve sent that can be distributed to anyone who wantsmore of this information. To give you a bit of a background, The WunderGlo Foundation was founded by my daughter and only child Gloria Borges one year after her stage IV colon cancer diagnosis at the age of 28. She started a blog immediately which is also support, and continues to be alive, that is called WunderGlo. And it’s actually pronounced Wunder Glo. So Wunder in German means miracle and glo is Gloria and she received so many emails and requests on what she’s doing with lifestyle, diet, exercise, treatments and things of that nature, she knew one year after she had to go bigger. She also found that with colorectal cancer being the most underfunded cancer, she needed to do something where our mission funded curative research. We’ve funded 1.75 million dollars to date. So my daughter passed away in January of 2014, a little less than a month after her 32nd birthday. I left my 30 year career in commercial banking to take over WunderGlo. We are now in our 12th year as an organization. Cancer, taking away the ability for my daughter to have children, her being my only child, I’ll never be a grandmother, but WunderGlo is my baby to take care of and who I care about is the children who it affects. So I care about the patients, we do a lot of navigation, we have patient programs and with our affiliate doctors at USC Norris, and at Keck, I do a lot of patient navigation and support, which I will be also doing this morning. But cancer leaves a lot of shrapnel in its wake. And I believe that we all care about children who are in children’s hospitals and who have cancer themselves, of course. Of course we need to care about them. But I feel that there’s a forgotten group in there. And they are the children whose parents are going through cancer who possibly pass away from cancer, but they watch what happens. It also affects them financially. So in 2016, we started The Children of WunderGlo Programs. We currently have two programs and on our way to launch a third. But the first one we started back then is our holiday gift distribution drive. We give presents to the children whose parents have cancer or survivors or who have passed away, both locally throughout the country, we reach one family in Canada, and we reach one family in Malaysia. So we’ve been doing that now, this is our eighth year doing it. So I want to say it was 2017/2018 when we started our Children of WunderGlo Scholarships. It was inspired by a cancer patient who I supported, who went for his insurance for his two young children and found out that day that he had stage IV colon cancer and they denied his insurance. He worked up until about two days before he passed away because he wanted to make sure his two boys went to college. We started our WunderGlo Scholarships to support children who have lost a parent to colorectal cancer. Backup a little on the children’s presents. It’s for children of all cancers, it could be breast cancer, lymphoma, it is not just restricted to colorectal cancer. Our scholarships are. They are directed to children, graduating high school seniors, who are pursuing their secondary education and have lost one of their parents to colorectal cancer. I talked to them, I’m currently in the process of sending all their notifications out and they are so moved. And it’s so meaningful to them that a group sees them. And I always tell them, this is your graduation present from your mom or from your dad to you. Because we would never even know about you or be connected if you didn’t lose a parent to the disease that we’re trying to eradicate through our research funding. So it’s an amazing program that is offered. As of this year, we’ll have awarded 33 scholarships to date. And we’re continuing on. We always look for greater support in that. We have the GPA at a 2.0, the minimum GPA, because we’re not going to expect that you’ve lost a parent to this disease and your life’s been easy and you’re a 4.0 student. So it is not based on GPA. It’s based on your essay, letter of recommendation and other factors that our scholarship committee votes on. We wind up having anywhere from nine to 12 in the voting committee. I don’t vote because I know too much about the kids. Hey, you didn’t send me this report yet. I don’t want anybody penalized because they weren’t able to get me all the paperwork the way they should have. The next program that we have is for patients, survivors, caregivers and their children if they like and that is our monthly Reiki and Guided Meditation Program that we’ve had since 2015. We had it on site at a place in Los Angeles for patients everywhere, cancer patients of all types in Southern California and then on site at USC Norris Cancer Comprehensive Center for the patients that received treatment there. COVID changed it, like it changed everything, moved us to a Zoom format, which is actually pretty wonderful. People don’t have to drive in that stressful traffic to get anywhere. We’re able to reach people across the country. Anywhere can Zoom in for our peaceful hour and it truly is this little circle of love that we’ve got. Our Reiki Masters are otherworldly and just bring you the peace and the balance that you need for those days and there again I’m welcome for any questions afterwards. If you want to post my email, people can email me or text me or however they’d like to get a hold of me but I’m more than happy to discuss the program. Quick question to answer is a lot of people say if you’re in cancer treatment, can your child apply to our scholarships? No, because our board had approved the scholarships for someone who has lost a parent to cancer. What happens to colorectal cancer? Their lives are different. If you’re still living with your child, and you’re there at graduation, all these kids don’t have their parent at graduation. Now, in the event that we don’t place all of our scholarships that year, yes, we will consider colorectal cancer patients in treatment. But you have to have guidelines somewhere. You know, what happens after that? They’ll say, Well, I’m in treatment for lymphoma, and I’m in treatment for somethig else. You have to have a guideline. So our guideline is for students who have lost a parent to colorectal cancer and are pursuing nursing school, military, community college, four year, whatever they are pursuing. And that’s it.

Meagan Lockhart 16:02
Thank you, Becky, we do have a question.

Becky Keller 16:04
Sure.

Meagan Lockhart 16:05
When is the application window for the scholarships?

Becky Keller 16:08
it starts January 1 through April 15th. And then we let the students know on May 10th. And that’s when we start sending everything to the schools and make sure that they have our scholarship, their award listed on their achievements as graduates.

Meagan Lockhart 16:27
Awesome, that’s fantastic. Thank you so much. It was so great to hear more about what Gloria did, and the fact that you’re continuing her legacy. It’s been so successful for not only colon cancer research, but also reaching these underserved kids.

Becky Keller 16:44
Yes, they’re kind of my grandkids to care about.

Meagan Lockhart 16:49
That’s wonderful.

Becky Keller 16:50
They mean a lot to me.

Meagan Lockhart 16:52
Thank you so much for coming. Our third organization that we’re going to have present is Rainbows for All Children. Liz Falstreau is here to speak with us.

Liz Falstreau 17:04
Hi, everybody. Thanks so much. I work in near a train so you may occasionally hear it go by. I work for Rainbows for All Children. I’m going to share my screen really quick. And do a quick little presentation for you. So as a child of a parent who is still being treated for cancer well into my 30s, I am just so appreciative of all of the organizations here today. And I’m so fortunate to be able to offer some assistance. When I first heard about Rainbows, myself, I was like, where was this when I was a kid, I would have loved to be a part of this because I was also part of a mixed family and I had a lot of other things going on too on top of my mother’s illness. But we’ll get a little bit into what we do here. So we have been supporting youth for 40 years. And our mission is to create a community that connects youth with the support they need to navigate grief and heal from loss so that no one will have to navigate grief and loss alone. Our founder, Suzy L. Marta, she originally started this organization because her kids were wondering if there was a support group for them when she was going through her divorce and there wasn’t. So she worked with professionals in the industry and got together a program that she piloted and here we are 40 years later. It’s expanded to all forms of grief and community crises. We’ve served over 4 million youth in the world, we’re actually in 38 states and 16 countries now. So our reach has been pretty profound. And one of the things that we focus on is the universal emotions of grief, and how to cope with them in healthy ways and that social emotional learning piece as well. So with that, I kind of went over this a little bit, our programs. So the programs that we offer, our Rainbows Program, our Kaleidoscope Program and our Silver Linings. So Rainbows and Kaleidoscope are both general grief groups. It’s peer support that’s facilitated by an adult volunteer that is trained in our curriculum. They’re provided with a lesson plan. And each week there’s a different topic. And it teaches many different skills from how to manage your anger and stress to alleviating depression, anxiety, and just learning how to communicate your emotions more effectively amongst friends and peers who are going through similar emotions and can provide that next tier of support that maybe you don’t get on like a one-on-one therapy basis. Our Silver Linings is also a really cool program that’s come up. It started in the early 90s for big community crises like natural disasters, things like that. Because sometimes kids who are going through the grief of losing a parent to cancer or actually still living with a parent with cancer and going through the treatment are also going through a national crisises too. So there’s this sort of mixed trauma is happening, we see. So we’re time tested and evidence based. We do assessments and all of that. We keep it age appropriate.

Liz Falstreau 20:59
I’ll show you on the next page here.You can see our Sunbeams Program is three to five years. Rainbows is six to 13 years and it is split up in levels. So we try to keep it really relevant to where they are in their emotional growth. Just a overview of sort of how the meeting cycles look for these other programs too, very similar. The repetitiveness of a weekly meeting for several weeks and that longevity, it gives a sense of safety and a sense of community, and a sense of coming back to those emotions and not pushing them down, not leaving them for another day. But setting aside a time where you can really acknowledge them with your peers.

Liz Falstreau 21:49
And of course, why we do it, there are a multitude of adverse childhood experiences, or ACES that affect young people in the US and the world. Some of them are listed here. And some of them, multiple kids, multiple of these are in a single household. So we see an opportunity for a universal growth in that emotion. And these ACES, they can have effects on health, behavior, and life potential in terms of like career status. Hearing about the scholarships that don’t look at GPA, I think that is just so phenomenal. Because oftentimes, these kids that are going through these horrible traumas in their life and this loss, to expect them to excel on top of that, it’s a little ludicrous. So again, it just reinforces the reality that we face. If you’re looking for a group that we provide in your area, you’d be able to go to our website at rainbows.org and put your zip code into our find a group box and they’ll list the contacts there for you. If you don’t see one, please give us a call. We’re always looking to find volunteers in a community that are willing to get trained up and willing to run these groups. They are completely free to participants. And they occur in schools, churches, libraries, other places where communities gather. So that’s a little bit about us. I know that was like a super fast course. I don’t want to take up too, too much time. But yeah, thank you for learning a little bit more about us. And if you have any questions, please let me know.

Meagan Lockhart 23:50
Fantastic. Thank you so much. And then you’re not just available in the US, correct? Your global?

Liz Falstreau 23:58
Yeah, so we are also in like 15 other countries.

Meagan Lockhart 24:04
Fantastic.

Liz Falstreau 24:05
I know that we’re in Australia and the UK, and Canada. We’re actually having an international conference of all of our facilitators later in June. So that’s pretty exciting. But yeah, we are all over the place.

Meagan Lockhart 24:23
That’s perfect. I know a number of our international members are always on the hunt for resources. And my parents divorced when I was young, and I was a Rainbow’s kid.

Julie Clauer 24:33
Awesome.

Meagan Lockhart 24:33
It’s fantastic.

Meagan Lockhart 24:34
I think

Liz Falstreau 24:35
That’s so good to hear. Thank you for having me.

Meagan Lockhart 24:44
Alright. Next up, we’re going to have Rebecca speak with us from Dougy Center and learn a bit more about programs available.

Rebecca Hobbs 24:58
Thank you. Yeah, I am with Dougy Center. We are the National Grief Center for Children and Families. Dougy Center started in 1982, over 40 years ago. And we were the first center of its kind to offer peer support, grief support for children based on a play model therapy way. One of the things that the kids that we started initially talking with have been really talking about their play as a way of being the primary language that they both process and express with. And so our model consist of both a talking portion where kids can learn coping skills, identifying support strategies, identifying feelings, things that are going to kind of be tools for their toolbox. But also we allowed them a lot of free time where they are self directed to go be able to play in either whatever expression rooms they want. So we have art rooms and big energy rooms, and hospital rooms, and sandbox and musics. So we have a lot of different ways for them to be able to process and express what those experiences are like for them. We offer at Dougy Center both bereavement support, which is what we really started with over 40 years ago, we have almost 30 ongoing peer support groups here in the Portland metro area of Oregon and southwest Washington. And we also, nine years ago, started our Pathways Program, which is for kids and teens who have an adult, parent, caregiver, guardian, or a sibling that has been diagnosed with what we call an advanced serious illness. It’s a terminal prognosis of anywhere from months to a few years out generally. And it really allows kids to be with kids, teens to be with teens, and we have an adult caregiver portion as well as adults living with illness support group. So kind of wraparound family support for kids when their parent is going through those last years of their illness. We are not Hospice. I want to say that we are not Hospice. And so many times families connect with us and say, I’m not ready to give up. And I always want to be so reassuring to them that this is not a group for those who are giving up. This is really a group support for families when the illness has advanced so far that their lives are really completely upside down. But there are those that are like I’m looking for that last treatment that’s going to help me and that I’m looking for whatever it is, and we want to maintain hope with them. And what we want to help them with is also transition their hope that when there is no longer hope for a cure, that there is hope for more days ahead that they can be with their families, more quality time, and really being more deliberate in choosing how they want to connect with the people that they love around them in the days that they have left. So Pathways is a powerful program we have. And then of course, our Bereavement Support is ages three through 18, and we have a young adult, multiple young adult groups as well, that meet both virtually and in person here. And then all of our kids and teen groups have a corresponding adult caregiver support too. Because we do know as research shows that if adult caregivers are feeling supported and able to cope better that their kids are doing better as well. So even though kids and teens are kind of what I say the golden ticket into Dougy Center, we offer lots of different ways of supporting their adult caregivers as well. For those interested in participating in an in person group, then we ask them to give us a call and we sign them up for an orientation. It’s just a way for us to be able to show kids and teens kind of what we do here and help them kind of be prepared to join a group. And then after that, we assign them to one of our many, many different groups. For our bereavement support, they are broken down into age. So we have littles three, four and five year olds. They’re adorable and bouncy. We have lots and lots of six to 12 year old groups. Those groups are the most that we have. And they are also broken down into different types of losses and deaths. So we have a chronic illness support. We do also offer healing from a suicide death, a violent death, a sudden death and also for siblings, groups just for kids that have had a brother or a sister die by any cause. And then we have our mothers and teen groups. So we offer lots and lots of different choices for families so that kids and teens can really make the choice that feels most connected and to them in being able to get that support. Our groups are ongoing for as long as a family feels like it’s supportive and helpful for them. In our Pathways groups, once the death has happened, they get to come back and say goodbye to families, which we have found to be invaluable to all of our participants. And then they can transition to a bereavement group. And for our bereavement groups, some kiddos come in for a short while and they don’t stay too long. I had a kiddo come in just recently, who after like six groups was like, I’m done, I’ve realized there’s other kids like me, and that’s all I needed to know. And then we have other kids and teens that they come for years, and we don’t put a time limit on their grief for them. As many of you have said, there are so many other challenges that our kids and teens are also facing that sometimes a parent or a siblin’s death is just one of many challenges they have. So being able to offer that support, sometimes up for years, is really important to families. And that is offered to families at no cost. So a family never has to pay for any of the support they receive here. We do realize that many of our families that would like to support Dougy Center and have those resources do not live in the Portland, Oregon metro area. So we do offer an extensive website. And I hope people can take a look at that. We have lots and when I say lots, it is lots and lots of resources, both for adults who are supporting kids and teens, as well as teachers and other school administrators. We have activities for kids of all ages on our website. Everything is downloadable so people can use them however they wish to. We have an extensive podcast listening for people who want to be in the car driving and just listen and get support that way, as well as additional resources. So I’m hoping that people can check out our website and call if they have any questions or information. There’s always a program staff person available to answer questions, and even just things like how do I tell my child that their parent is going to die, or their parent just died? I don’t have the language for that. And so a lot of our phone support, even from people in other states is offering words and encouragement and just that support to adults to be able to have those really, really hard conversations with their kids. Thank you.

Meagan Lockhart 33:58
That’s fantastic. Thank you so much for sharing. I love that it’s led by the child. So you don’t necessarily put a time on grief and you really let them grieve in their way with your supports. And then knowing about the resources on the website, available to every one is fantastic, and definitely something that we’ll be sharing for everyone to look at afterwards. Thank you so much for coming.

Rebecca Hobbs 34:20
Thank you, Megan.

Meagan Lockhart 34:22
And now our fifth presenter will be Haley from Bright Spot Network.

Haley Pollack 34:31
Hi, everybody. Thank you guys so much for having me. I was saying earlier that this is really special for me. I am a colon cancer survivor. I was diagnosed with stage 3C colon cancer in 2018. I had a six month old baby and a three year old at the time. And first Colontown was really helpful for me in that experience and has continued to be a community that I’m a part of. So this is really special and I love seeing some familiar faces and names and faces that I don’t know the names and names that I don’t know the faces. So it’s all very cool for me. But so Bright Spot Network was really founded out of my experience and the experience of my cofounder diagnosed with little kids. We couldn’t find the resources that we needed online, we were connected by a common health care professional who saw essentially two young moms who are like flailing. Both of us had babies. My cofounder was diagnosed with breast cancer while pregnant. And when we connected, a lot of what we connected around was the common experience of cancer and little kids.

Haley Pollack 35:33
And so I’m going to share my screen and share a little bit more about Bright Spot. But I just wanted to share kind of where it’s coming from. So our mission is to provide young cancer survivors who are parents of small children with a safe space for individual and familial healing, recovery and reconnection. And we do this in a number of ways. Here are our families experiencing some of the things that we do. I’m just gonna go through some of the different program offerings that we have, and then I’m happy to take any questions. But one of our cornerstone programs is Bright Reads. We offer free age appropriate children’s books on big emotions, cancer, grief, and loss. One of the things that we know is that talking to kids about cancer is really important. And for young kids it’s important even if they’re really little and they’re hearing about cancer in the background, hushed tones, all of that kind of stuff. And so we offer kids’ books about cancer. But the other thing is, is that kids that can express their emotions and can use language to talk about how they’re feeling are also going to handle their parent’s cancer diagnosis and treatment in healthier and kind of more well rounded ways. And a lot of the ways that little kids express their feelings about their parent’s emotions, as many of the people on the call might know, is through really big emotions. And so we also offer books just to help kids talk about their feelings. We have a financial assistance grant. So we offer $500, barrier free grants, for families in financial need. The eligibility is it to be in active treatment or recent survivorship, so within a year of your last treatment, and to be the primary caregiver for a child zero to six years old or currently pregnant. And things that are important about this grant is that you don’t need to have receipts, it’s not like a gift card, it’s like $500 cash that goes straight to you. We know that families need money to spend that money in the ways that they see fit for their family. And so we want to respect and trust the families that we work with. And so we offer this grant and the grant was closed as we were inundated with applications, but it is back open as of yesterday. We offer an art kit box. Actually Julie was the first person to get one of our art kits. And she provided really great feedback. So we offer this art kit box that has six art projects in it, the art box goes straight to you and you and your child can just do the art together. To echo something that Dom said, it’s really just fun. It’s an opportunity for parents and kids to do something fun together. We hear feedback from families that this was the first time I felt like a mom again since I started my treatment. Everything is included, you don’t need to go to the store to get the glue, you don’t need to go to the store to get the crayons, it’s all there just to connect. And we know that parents and children that are able to connect in the midst of a crisis, both the parent and the child are going to handle that crisis in a better way and feel better. We also offer kids’ groups. This is new in the last eight months. We have two groups. One is for small kids, zero to five. And that’s really a circle time that’s to be attended with a caregiver, so with a parent. That is Bright Circle. Then Bright Club is for kids five to 11 or five to 12. And that’s an opportunity for kids to come together, these are all virtual, kids to come together, connect with other kids learn some coping mechanisms, talk, hang out, maybe learn some mindfulness, but really just an opportunity for kids to see other kids who have a parent with cancer. And then we also offer support groups. So we have virtual support groups for parents in active treatment, for partners for stage IV parents and for parents in long term survivorship. We also, every October, we have a parenting with cancer webinar series. And we offer other webinars throughout the year that are specific to parenting younger kids.And then finally, we offer Family Resource Navigation. So Carissa Hodgson, our Director of Programs, an LCSW, she will get on the phone with you and just talk about how to organize your medical support team, how to talk to your kids about your cancer, maybe a change in your diagnosis that you aren’t really sure how to broach the topic with your kids, Carissa will get on the phone with you and talk through all of that, and also connect you to other resources like the folks on the call today if that would be helpful. And then we also have a bunch of different web resources. So we have Petunia the Pig Has a Port. We have a bunch of different coloring pages that are just meant to like normalize a body that has cancer, so maybe it’s a goldfish that can’t remember something or we have a an otter that has an ostomy bag. So just a bunch of different coloring pages that you can just sit down with your kid, maybe you’re on the couch, maybe you’re in bed, or maybe you’re not and you’re just coloring together, just a way to connect, but also at the same time to give you an opportunity to talk to your kid about what’s happening. We also a bunch of developmental resources about what your kid might understand or how they might react to your cancer. And then at the top, here, we have this coloring book that is actually customizable. So you can drop in your own family photos, you can name your family, you can name your parent who is the parent with cancer, mom, dad, babo, whatever you call that parent, and go through that book to really make it a child’s book to help to empower your child in the midst of this crisis. And we also have a video series and a bunch of other web resources available. So I think that that’s the long and short of it. It is and I am just really glad to have this opportnity to talk to everybody and feel free to reach out with any questions.

Meagan Lockhart 41:44
Thank you so much, Haley. I love the coloring books. My daughter is coloring the x-ray one.

Haley Pollack 41:54
That’s so great.

Meagan Lockhart 41:57
So thank you so much for sharing. It’s amazing that all the different activities you have for the kids. And we have one more presenter today. Last but not least, you have Rachel Antin with One Day to Remember.

Rachel Antin 42:11
Hi, everyone. I can’t believe I’m going last. I feel like I should have gone first. Like you all have amazing resources for families. And it’s really an honor to be able to share with you what we do. I was an oncology nurse. I live in Pittsburgh and I was struggling to find resources for some of my patients. And so that is sort of how One Day to Remember was born. I’m going to share my screen as well.

Rachel Antin 42:40
I am a mom of two kids. So I know how difficult it can be to manage day-to-day life and then also put cancer on top of it. So it’s really an honor to do what we do. Like I said, we were founded in 2016. And we’re dedicated to giving parents with advanced stage cancer one fun, cost free day to make memories with their family. So that’s normally on a local scale. The newest research that I found is that one in five adults who are newly diagnosed with cancer are parenting a child under the age of 18. So we know that we have a lot of work to do. And our goal is to bring smiles and joy to children who need it most. We would be honored to have you refer your loved one so that we can be one step closer to making a difference for all the children who deserve to see some light in their darkness during this time. So the signature One Day to Remember outing is a personalized day of activities to enjoy together. And they are custom and curated specifically to each and every family that we get a referral for. We have capabilities to do all different kinds of outings based on their interests, stability and health status. Our outings include the cost of meals and transportation. They also include a portrait session with a professional photographer, and each family receives a professionally printed memory book that is shipped directly to the family after their outing. For patients that happen to be more advanced or in a difficult situation and unable to leave their home, we can provide meals and activities delivered directly to them for what we call A Family Night to Remember, which is something that they can experience in their home. Each family, once they’re referred and we accept the referral, they receive a Welcome Package

Rachel Antin 44:39
You can see a little picture right here with our little Bo the Bear they get. He’s our mascot. Each young child gets a Bo the Bear as just something to be comforting. They each get a journal as well. And that journal was born actually from one of our One Day to Remember families who bought their child a journal just to sort of be able to write through and just draw or whatever. It was a safe space to express their thoughts and fears, and recount their favorite memories of their parent, or just to express their feelings. So, that is the Welcome Box that each family gets. Eligibility criteria is the family must have advanced stage cancer, they must have at least one child 18 or under, we must have medical clearances from a physician before we can start planning and right now we must have patients that live in the United States. Although I really wish we could expand to Canada, let’s talk. So the process if you’re battling advanced stage cancer, and you have at least one child under the age of 18, we would love for you to apply for a One Day to Remember. Our board and medical team will review the application to confirm your eligibility. Once you get accepted you’re in and we will create a custom experience for you and your family at no cost. We would love for you to obviously to enjoy your day with your family. And then upon returning home, you’re part of our One Day to Remember Family and you should get that photo book very soon. Applying is super easy. Go to our website, onedaytoremember.org/apply. If you forget the apply, you just click the Apply button.

Rachel Antin 46:25
And then you’ll see these two options, you can either apply for yourself and fill out our full application or you can refer a loved one or family member to the right. Some of our families have just had some really wonderful things to say about us. This family said thank you all so much for giving us the opportunity to just really live for the moment and forget about being sick for that day, which really says a lot about what we do and why it’s so important. This family said I truly appreciate the gift of time that you gave our family just to be together. I think a lot of people can relate as cancer is expensive. Days like we had today are few and far between. One Day to Remember allowed us to enjoy each other and make memories that we needed. And this one said it was filled with a little bit of tears but mostly a whole lot of laughter and unforgettable memories. I can’t tell you how much this day meant to my family. We will never forget this gift. And I think just the most important thing to realize about our organization is that we want to just provide some quality family time and give people an opportunity to just spend together because we know how difficult it can be to plan that. And I know how difficult it is for me to plan my family day out. And so we’re just honored to be able to plan these experiences for families. It really is an honor to be the reason that these families can smile, even if it’s for a day. I just want to end with this quote that, “you gave us a beacon of light and a blessing in a dark and scary time.” And so if there’s any way that we can help and support and bring these families into Our One Day to Remember Family, it would be our honor. So thank you for the opportunity to be here.

Meagan Lockhart 48:12
Thank you so much for joining us. I am just looking at the family photos and I think the addition of the photographer in the session is so important. And I know how important photos have been for our family. So I love that that’s an included aspect in their special Day to Remember forever. So thank you so much for joining us. And thank you for the information. I’m going to hand it over to Julie and Nev now to go through any questions and to do our final thank you and finish off the session.

Nev Dooley 48:42
Yeah, we do have a question for Haley. Does Bright Spot Network have any volunteer opportunities?

Haley Pollack 48:50
Yeah, thank you for that question. So we have a few opportunities. So the first thing is you can go onto our website and fill out a Volunteer Form. And so if you go on to the website, I think it’s under the About, I can find the link in a second, but you can fill out a Volunteer Form and just say kind of like what you’d be interested in. And so that’s like the first thing if you’re just like interested in volunteering, maybe you have an idea. We have a ton of different ways that you can plug in. The second thing I would say is that we have a Parent Advisory Board. And so if you’re a parent that’s currently going through cancer treatment, or a survivor or the partner, you can join the Parent Advisory Board. And we basically meet a few times a year and it’s an opportunity for you to give special feedback to us about different programming as well as plug in your own unique and great ways. Additionally, we have some other one off opportunities, which is just to say, fill out the volunteer form and I’ll get back to you. And I’ll find that right now and put in the chat.

Nev Dooley 50:03
Thanks, Haley. The next question is for Rachel. What is the typical amount of time to go from application to the Day to Remember, assuming if the person qualifies?

Rachel Antin 50:13
So, our team reaches out pretty quickly once we receive the application. Pending health status, it’s really up to the family when they want to do their outing and what works for their schedule. So we can do things very quickly if we need to. But also, some families are like, we’ll do it in a little bit and it’s just up to their schedule.

Nev Dooley 50:38
Thank you, Dom, can families participate in the year around programming if they haven’t attended camp?

Dom Hollins 50:44
Great question. Currently, the on ramp for those other services is Camp Kesem, but that will be evolving in the next few months. So there’ll be more opportunities for families to come in new and be able to get involved in some of those services without having to attend camp.

Nev Dooley 51:00
Okay, don’t go too far. Another one for you. The camp starts at six, I believe you said right? Is that, too young? Obviously, it’s not too young, because you’ve been running it. But what have you seen with the younger campers that come in?

Dom Hollins 51:15
Yeah, it’s very interesting, we often find that when parents first tell their children about Camp Kesem, the kids are like, no, thank you, hard pass, I don’t want to go to a camp. And be sad and be around other people that are sad. And so in a lot of cases, it takes a little bit of bribery and coercion to get the kiddos there. What we found with the children, and even our younger children, is that once they’re there and understand that it’s really a fun camp, and that there’s different ways for them to kind of lean in and kind of engage with their reflections on their experience, a lot of good things. We have a lot of parents that say I’m waiting for the call tonight to pick my kid up. And the call never comes. And so I think what we find is that through the programming and just the welcoming approach that we take, even our young kiddos get very comfortable very quickly, and you start to see that transformation in the first one or two days of them just feeling more comfortable. Even if it may take them more time to kind of open up and share in terms of their comfort or connecting with one of theirs campers, counselors or other other children, you start to see that progression of comfort and kind of opening up in that space. So we found that it’s great for young kids, but we recognize that there is that initial hesitance and parents have to sometimes kind of make that push in order to get their kids to be open to the experience from the jump. Is that helpful?

Nev Dooley 52:45
Yes, thank you.

Julie Clauer 52:47
Yeah, great question.

Nev Dooley 52:49
Here’s another question for you Dom. My son’s birthday is in December. So the summer after he turns 18, he would not be able to attend Camp Kesem, correct?

Dom Hollins 53:03
So he turns 18 and December and so the next summer? That would be correct. There might be other opportunities to be involved through local chapters and their campus programs, other things, but in terms of attending camp, he would have aged out of that. He’s currently 16? He will be able to go two years at least. Okay, potentially there’ll be opportunities for him to stay involved if he is attending, depending on what he’s doing with college experiences, at colleges, universities and even local. There’s some activity that might be connected. In terms of camp itself, he would have the opportunity for two years of experience.

Nev Dooley 53:57
Okay. Thank you.

Dom Hollins 53:59
Thank You.

Nev Dooley 54:05
Julie, were you trying to add a question for Liz?

Julie Clauer 54:07
Yes.

Nev Dooley 54:12
Question for Liz. Are the groups mixed for types of grief? Like kids whose parent who has an illness and ones whose parent has passed?

Liz Falstreau 54:22
Yes. So our program focuses more on like the universal emotions that go along with grief. So we have the opportunity to provide a space for kids of all sorts of experiences and the many phases of grief that they face. I’m working with a group right now of fourth and fifth graders and they’re great. I love them so much. I’m so sad that our time is coming to an end soon, but they could actually do the program again next year on a different level like for ages too, so it does keep going with the age group with new fresh activities and stuff for them to do, but one of them has a father who passed away and one of them has a mother who abandoned them. And they still make that connection of like, that grief and that it’s the same in so many ways, it’s the same. And I have found that so much connection has happened between these kids, that it’s just such a privilege to watch, honestly. And I know, Meagan mentioned she was in a Rainbows group too. And I’m sure she had friends in that group that were from all walks of life and all different backgrounds. Something that we really like to stress too is that it’s good to be able to share our grief with each other as well.

Nev Dooley 56:00
Thank you, Liz. Dom, the same question for you, are the kids who have parents in treatment in the same program with the kids whose parent has died?

Dom Hollins 56:11
That is also true for us, as well in terms of how the children are grouped. And I would echo everything that was just shared as well. I think the other thing that we find to be true with our structure and having those mixed groups, kids demonstrate an increased level of empathy for others, just recognizing and being in those spaces where they’re hearing about others’ journeys that I think is just quite profound. I see Liz and Haley nodding their head. I think that’s just a true outcome of having those mixed groups as well.

Nev Dooley 56:42
So this one’s kind of for all the organizations that are attending. Do you guys conduct meetings similar to this Resource Fair with school counselors? I know my daughter sees her school counselor a few times a week? Just so that they have all the information. So if parents are asking, they know that they can reach out there’s such valuable information and resources here. I don’t really know how to answer. So I’ll just maybe go down my tiles on the screen. Haley, Bright Spot Network?

Haley Pollack 56:42
Because we focus on younger kids, we’re not as much in the schools, but we do reach out to different types of mental health professionals so that folks across the board know about their resources, but where appropriate, we’re so happy if anybody has a school counselor that they think would really benefit. We get a lot of questions from kindergarten teachers who maybe have a student in the class who has a parent with cancer or something like that. So I think that there is a space for us to start to get into that field as well. But right now, it hasn’t been as much of a focus of ours.

Nev Dooley 58:01
Okay, thank you. Dom, how about Camp Kesem?

Dom Hollins 58:05
Yes, I wouldn’t say in formats similar to this. But our local chapters are doing outreach to schools and reaching out to school counselors. And we also, similar to Haley, will get sometimes direct outreach of, do you have resources? And so we tried to compile resources that would be beneficial to educators and social workers, as well as their navigating and supporting children in the classroom.

Nev Dooley 58:26
Rebecca, how about Dougy?

Rebecca Hobbs 58:32
Besides our school toolkit on our website that has a lot of information, we have the Community Outreach Coordinator in our Programs and Services that works directly with schools and other community organizations providing both information as well as helping them coordinate maybe a couple of support groups if there’s been a death in their community.

Nev Dooley 58:58
Thank You. Liz?

Liz Falstreau 59:03
Yeah, so similarily, we do resource fairs like these fairly often, just to make sure that people know that we are out there. And also, we are currently in the Chicago Public School System. They were able to get a grant to be able to have us in their school system. We have about 1200 teachers trained up and counselors trained up to be able to run all of our groups and we’re currently in the Chicago Archdiocese as well and a couple other school systems, I believe in New Jersey and Washington DC. So, yeah, we’re constantly in schools and I know that pre-pandemic it was already a struggle for a lot of teachers and counselors with caseload and with the resources that teachers are given for social emotional handling of things, and I’ve found that every counselor and every teacher that I have spoken with since, it is even more increased than it was before just based on that return to in person learning and to being in that classroom setting again. So we find that, all of these resources that we’ve shared today, for social emotional growth, for all of that stuff, is just so useful across the board for kids in their development, especially now. So yeah, we do. We actively are going to schools and being like, hey, we exist, let us help. But if you know of a school or a program that would be interested in any of ours, I would encourage you to just share information. I think I speak for all of us when I say that we’re just ready to be in as many places as possible.

Nev Dooley 1:01:03
Yeah. Thank you. Rachel, how about One Day to Remember?

Rachel Antin 1:01:09
Yeah, I don’t have a ton to add. I think everybody is sort of said it before. We would love to be in schools. We have talked to some local schools here in Pittsburgh. But because over the last two years we’ve sort of become a national organization, we would be honored if there was a space for us in other places and other schools.

Nev Dooley 1:01:32
Thank you. Becky?

Becky Keller 1:01:34
Yes, because we are a colorectal cancer nonprofit, we’re pretty exclusive to the cancer community locally, I would say that I will stop off at the local schools to drop off our materials and then our scholarships are on Fastweb Scholarships. And so all the sites that schools and students everywhere would be seeking that information. But I’d say cancer community is primarily our focal point.

Nev Dooley 1:02:03
Thank you so much. Any other questions?

Julie Clauer 1:02:11
Thank you. Thank you from all of us. I learned so much, even from the organizations I already have been connected with, I learned more. So thank you so much to everyone, this was extremely valuable. And it will continue to be valuable because the way our groups work is we obviously constantly have new members. And so ones that couldn’t participate today and then as well as future members will be able to watch and understand more. It is fantastic to look at websites, but it comes to life so much more to hear it directly from you all. So thank you very much.

Becky Keller 1:02:45
And thank you for putting this all together for the patients and families so that they can see these resources. They’re amazing. The children’s offerings that are there and One Day to Remember, they’re beautiful. So what a wonderful source that you’re providing to the people in Colontown. So thank you.

Julie Clauer 1:03:03
Thank you and we will be posting it in Colontown. We will also be posting it on our ColontownUniversity, which is a public website with all the materials that the organizations provided as well as websites so that everybody can access that directly. So thank you, everyone. Have a great day.

Meagan Lockhart 1:03:23
Thank you so

Julie Clauer 1:03:24
much. Have a good one.