Talking to Children About Metastatic Breast Cancer

Welcome to The Breastcancer.org Podcast, the podcast that brings you the latest information on breast cancer research, treatments, side effects, and survivorship issues through expert interviews, as well as personal stories from people affected by breast cancer. Here’s your host, Breastcancer.org senior editor Jamie DePolo.

Jamie DePolo: As always, thank you for listening. This podcast is the audio from a special virtual community meetup featuring licensed clinical social worker and grief counselor Kelly Grosklags. Kelly helped community director Melissa Jenkins lead this meetup on talking to children about metastatic breast cancer. We hope this podcast helps anyone who has to take on this difficult task.

Kelly Grosklags: I was asked to introduce myself. My name is Kelly Grosklags. I may know, or I’ve met some of you. I speak quite a bit at the oncology conferences around the States. I am based in Minneapolis, and for about 30 years have worked in oncology, palliative care, and hospice, had a private practice in oncology and grief and loss here in Minneapolis, but now I teach at various medical schools, and teach doctors how to have difficult conversations.

You may know me through Conversations with Kelly, is also something on Facebook. If you’re not part of it, I would invite you to follow it. It’s a wonderful community, and then on Instagram, See My Grief is the title.

So, I was asked to come in and talk about how to talk to children. Now, the one thing I’m going to start right out of the gate is, I come to you as somebody who’s trained in this deeply, in terms of end-of-life care, or in terms of difficult conversations, or in terms of oncology care.

But I’m also somebody who lost her mom at 11, and come to you with that knowledge of what would’ve been helpful for me when my mom was dying. Now, my mom, Sandy, had a sudden heart attack at age 33, and I was with her. And so, but she lived in a hospital for about three months prior to dying, and that was quite a while ago, but there are a lot of things that I’ve struggled with in life because of things that the staff maybe wasn’t trained in, or my family didn’t know.

And so, I bring these suggestions also to you as somebody who has lived as a child who’s had a sick parent. So, that, hopefully, will lend some credibility to this conversation, and let you know that along the way in my life, in my grief work, through losing my mom, there are definitely things that I know could have been made softer and easier, had conversations happened.

So, when it comes to kids and teens, anything I say needs to be taken into account: how old is the child, and does the child have any special needs? Does the child have any emotional or psychological issues that could impede them being able to have conversations or understand? Teenagers, as we know, are not going to sit down and have a one-to-one conversation with us very easily. That’s just not part of their DNA. If you have a teenager that does, I want to turn this conversation into how did you do it? Because that’s really remarkable.

Kind of the rule of thumb with kiddos is, around age two to three, they start to become very curious. And if you have an [child] age, that age that is in your life, you’ll notice there’s a lot of questions, a lot of why. Why does that happen? Why doesn’t that happen? How come that happened? And they get very curious, and that can go until about age five, age six, where they’re just, they’re real curious about things.

Now, we know that, if they start asking questions about the cancer, I always recommend that you use the term cancer, okay? Monster and those things can really add to some anxiety in children’s lives. We talk about cancer. We can talk about, we can show them pictures of cells. We can do lots of things, again, depending upon your child, but we want to use the word cancer.

Any age child can handle that word, because they’re going to be hearing that word a lot, and if we don’t introduce it to them, that’s going to be very confusing for them. If they hear us talking on the phone and we use the word cancer, but we’ve used a different word with them, they’re going to have a hard time with this. So, I really encourage you to use the word cancer.

Another thing that’s important, and I’ve learned this through my work as a grief therapist, is that we use words such as dying, we use words such as die. If we say things like, Grandma has gone to sleep, or, Grandma has flown away, or, Grandma is, you know, has gone to a different place, this can be very scary and confusing. And any time we have these difficult conversations with kiddos, we want to be as concrete, and we want to be as simplistic. 

We want to make it the least confusing for them that we can, because what happens is each time we have a conversation with kids, we’re building their trust, and we’re building this connection with them that they can come to us and ask us any time they want to. When they have the courage to ask us a question, as hard as it may be, we want to have the courage to answer them. And kids oftentimes will be introduced to illness, and dying, and death through animals, their cat, their guinea pig, their fish, their dog, a bird out on the street, whatever that may be, and these are opportunities for us to talk.

Now, when we actually talk about end of life, or we talk about death and dying with kiddos, we say things like, the body has an illness and it’s called cancer, and what it does is it impacts Mommy and Daddy, Mommy or Daddy’s body. The cells are, they get sick, and you know how some of you may have a port, you can use the word port, you talk about, this is where the medicine goes in, and that might be enough for that conversation.

What happens when we have these difficult conversations is, we want to have it all at once, because they’re very uncomfortable, and we dread them. Kids can’t take in that amount of information. We plant seeds slowly with them, and even teens, quite frankly. We plant seeds slowly, and no matter what is going on, as long as the child is feeling reassured that no matter what happens, people are going to love them, they’re going to be safe, they’re going to have their food, they’re going to have their friends, they’re going to have their toys. Kids need that as one of their main attributes in this conversation, is it’s about reassuring, constantly reassuring them.

Now, kiddos don’t have the same futuristic beliefs or outlooks that we do. I worked in the palliative care service for kids who have cancer, who are dying. And it’s very interesting to talk to them versus their parents. Their parents are grieving future things that are going to happen, that they’re not going to be part of, whether it’s going to graduation from high school, whether it’s being on the soccer team, whether it’s getting married, having grandbabies, whatever that may be.

We also are like that, as adults. When you are living a disease that’s terminal, you’re very forward-thinking, and very aware of things that you’re going to miss. And they aren’t necessarily in that, and nor do they need to be at this moment. They are very in the now. And so, in the now is what they care about. In the now is, and maybe it’s Mommy feels too sick today, or Grandma feels too sick today to go outside with you. And I think those are really, really important things to remember, is that they are not necessarily forward-thinkers.

And so, what we are maybe bereft about and grieving in ourselves, or for our partners, or for our daughters, or for our sons, isn’t necessarily what they are grieving, if that makes sense. So, I do want to open this up, because I want this to be a conversation where you can utilize me to answer questions. You know the children in your life and the teens in your life better than anybody. So, these are general answers that I would give you. 

One place I would really encourage you guys to look up, and I know there’s going to be links that’ll be sent out after this, but is the Dougy Center, D-O-U-G-Y, Dougy Center out of, I think it’s out of Portland, Oregon. Anyways, their website is quite extensive on how to talk to children and teens, and I would highly recommend utilizing…they have pages for coloring books that you can print off, because that’s one way that kids will communicate, is through art and play. And so, I would really encourage people to look at that.

So, let’s open it up, and what I’d want to say is, again, I want to reiterate what Melissa said, is that these are confidential, in terms of no one’s going to see your face. I also want to make sure that this is confidential, that what gets asked in here, we don’t talk about outside of here with maybe other people in support group next week, or whatever. I really want this to be a place that you can ask hard questions, or make statements, or whatever you need to make.

So, if you want, you can just, you know, there’s that raising of hand thing that we’re all familiar with, you can do that, but let’s have a conversation. Who will be brave enough to ask the first question?

Female Speaker #1: Hi, Kelly. Thank you, that was very interesting, very helpful. I’m on this because, I know it said children and kids, but my children and kids are 20 and 23, and so, they’re in a different age, and I just was wondering if you could speak more to talking to that age group. I still get the teenage eye roll sometimes, so they’re not beyond that, and yeah, I just was wondering if you could talk a little bit about that age group.

Kelly Grosklags: Let me ask you, how much do they know about your disease?

Female Speaker #1: So, they know everything about it, and I should be more specific, and when I forget, because there are times when nothing really is changing, that I forget to even tell them, and I’ve gotten really good at doing that now. Like, you know, I’ve just went to my nephrologist, and everything is same, and we’re going to continue, and blah blah blah. But specifically, I guess what I’m talking about and what came up in the group, which is, I think, one of reasons Melissa and others decided to go this way, a couple of us have talked about this is, like, I mean, at 20 and 23, my children need to know what to do when I die, you know?

And it’s a matter of when I die, you know, even if it’s in 15 to 20 years, and I have been trying, I am not exaggerating, for four months to give my daughter, like, information, like passwords, and what my life insurance company is. And I’ve been using this quote with a death doula that I heard that said, you know, just like talking about sex doesn’t make us pregnant, talking about death doesn’t kill us. And you know, I said to my daughter, listen, you’re the one, whether I die in five years or 20 years, you’re the one that needs to contact the life insurance people and get the life insurance.

And she’s, okay, Mom, we’ll do it next weekend when I come to visit, and then it’s next weekend, then it’s next weekend, and you know, why don’t you let her brother do it, who is 20 going on 21, but really going on 14 in so many ways, too. Like, I’m not having him responsible for it, you know, and she knows that.

Kelly Grosklags: Well, I think you’re bringing up a really good point here, is about what are the needs of somebody who’s living with this disease, like, what kinds of things do you want to have done.

Now, a suggestion that I have done a lot, because she’s giving you a clear message of, this is too hard to do, right? And so, and what it’s ended up doing is every time you interact with her, it’s frustrating, because you want to get this done. 

So, you write it in a binder, and she knows where the binder is, and your son knows where the binder is, and it’s all the passwords, the funeral home, the life insurance, all these things that live in this binder, and this is really good information regardless if somebody’s living with terminal illness or not. You know, when you have children, this should be done, because there’s motorcycle accidents and things that can happen. 

And so, it sounds like it would be very therapeutic for you to get it down in writing, and then just say, I want you guys to know that this green binder is in this drawer in the office, should anything happen. And that’s really a good thing to do with partners, also, that don’t want to talk about this. In metastatic breast cancer, we can see people living stable for quite a while, and 20 and 23-year-olds are kind of also in the now, so they’re looking at you and going, well, you’re fine, why are we talking about this?

And so, I think at this point, kind of take her cues, and write it down. It’s a good halfway point for the both of you to do that.

I also want to say, when it comes to teens or kids in their 20s, having texting conversations, as sad as that sounds, besides the one-to-one sitting down, is often how it happens. Hey, I just want you to know, having a lot of pain today, and I’m scared, and then they may actually text you back instead of calling. You know, we would call, as adults, but this is just how they communicate in this world at this moment.

So, sometimes it’s, can you talk to, or I’d like to talk to everybody. You know, things are okay, but there’s some changes happening, I’d like to set up a meeting next month on blah blah blah, and we do that all by text. And I want to say, there’s nothing wrong with it. The kids I work with in grief, the teens I work with in grief, there’s a lot of conversations happening between the surviving parent and them, and they’re one floor apart in the house. And they’re having these conversations about how are you, I’m not good, I’m sad, and they’re literally upstairs, but this is how they feel comfortable communicating.

There’s no right or wrong way to communicate, as long as we’re getting some channel back and forth. And then, it looks like there’s a binder that you can get on Amazon. I do know of that binder. Also, you can, you know, all the school supplies are out right now, and just one of those spiral notebooks if you have to. The main thing is, make sure people know where it’s at. That’s the most important thing, and that if an update happens, that you update it in there, also.

It doesn’t have to be a legal document. It can simply be you writing down things of what to do.

You know, I want to quick-talk before I look at this other question. One of the things I do with people, and I talk a little bit about it in my book, but it’s also a good time to be thinking about some legacy things, and I’m sure many of you have thought about that. But it’s not just about talking to your child about dying. It’s how do you stay present in their life when the death has happened.

When I broached it earlier about, I’m also bringing to you things I wish would’ve happened in my life with my mother, one of the things is, I really would’ve loved a card from her when I got married. I really would’ve loved to have seen her handwriting, and maybe a little piece of advice when I had a child. I would’ve loved more pictures of us. I would’ve loved maybe something from her that gave me permission to keep living my life and be joyful. And so, these are some of the things to kind of be thinking about. 

I know many people have done lots of things. I want to say, it doesn’t have to be fancy. IPhones right now, and our smartphones, have a very good recording system. You can literally make someone film you for a minute, and just saying, I want you to know I love you, and I’m proud of you, and something else, and it can be something that gets treasured forever. So, doesn’t have to be this grandiose scrapbook, and all these things. That’s what keeps people, I think, from doing it, is it’s they’re so overwhelmed with, I’ve got to make it this big deal. It doesn’t have to be. 

[Redacted] says, I’d like to know what kind of attachment styles are best for children? I’m a single mom, and my kids are six and eight. I sometimes worry if having too close of a bond will be damaging. 

You know, I don’t know that you can over-love your child, and I think when they’re six and eight, they’re still very dependent on us. That’s natural, and I think it’s, you know, some kids have anxious attachment. Some kids have avoidant attachment, and our attachment issues will change throughout our life. We don’t have just one attachment.

So, I know there’s all these attachment things, theories out there right now. I just want you to know that it will change, and it can also change based on situations that you’re in. One of the things that’s really important when you’re having these conversations, if you’re telling a child that maybe you’re starting to get concerned your treatment’s not working, or that you’re getting weaker, or that you’re getting, you know, whatever, is that somebody also is involved in this conversation that’s going to be in the child’s life after the death happens.

And I think that also could go along that line of what you’re asking, because we don’t want to be the only person that our child can come to for safety. We want to make sure that there is an assigned person, if it’s not a two-parent home, that there’s an assigned person that can be involved in their life and love them even after a death occurs. And so, I think that’s important, that they be involved in some of these conversations with you, because what it’s going to do is, without even telling the child, it’s going to set up a safety.

This person’s involved in hard conversations. This person is here with Mommy or Daddy. This person is here with Grandma, whatever it may be. So, I really recommend, if it’s going to be an auntie, if it’s going to be a friend, if it’s going to be a partner, whomever is going to be involved in that child’s life in a significant way, that they be involved in some of these hard conversations, that they at least be present in the room. But I’m of the feeling, [redacted], that you really, I don’t know that you can over-love a child.

I think we want the child to feel safe enough, and to feel permission to go play, and not have to be with us all the time. Sometimes kids will have attachment where they don’t want to leave the house. They feel this responsibility to take care of Mom and Dad. That’s not their job, and we have to say that to them. We have to reassure them that there are…you know, they certainly are old enough to get water for you, or let the dog out, or water the plants, or those, but it’s not their job to stick around and not go out and play.

The best thing for kids, especially when there’s somebody in the house that has a terminal illness is that they have a balance of being involved in the family life, being involved in the illness. They should know when you’re going to the doctor. They should know if medicine didn’t work, these kinds of concrete things. And then, they should also be able to go to a sleepover. They also should be able to go to the field trip, and those kinds of things. It’s the balance. It’s really, truly the both/and is what I talk about, rather than the either/or. 

Either they’re a hundred percent in here, or they’re over here. No. They’re both integrated into this experience, and continuing to live their life.

Male Speaker #1: I’m calling for my daughter, who has metastatic breast cancer. She’s 42, I’m 85. She has two three-year-olds and one seven-year-old.

At what point should she even consider…because I have not talked with this about her, I figure she’s going to make her plans, she’s going to do what she’s going to do. But is there anything that I should be doing? I can’t talk to the kids. I can’t talk to the boys or my granddaughter.

Kelly Grosklags: Prior to any of these conversations happening with kids, it’s really important that you yourself have gotten support around what’s going on with your own disease. And so, it’s hard to have these conversations with another person if you haven’t kind of gotten clear within yourself, or been able to get support around these conversations. It’s not fair to you, and it’s not fair to them. So, things kind of have to be in place before we sit down and have these hard conversations.

So, if, let’s say, for instance, your daughter is not wanting to talk about it, I don’t know if that’s true, I’m just saying, let’s say that’s her story, it would not be realistic to think she’s going to sit down and have this conversation with her kids. And so, we want to make sure that people are feeling okay in terms of supported, and have all of their questions answered about their disease, prior to talking to their kids. And so, I think where we start is, we just make sure that kids understand that their mom has cancer.

And they’re three, and so, they’re not going to be able to understand words like metastasized and all those kinds of things. For now, they need to know that Mommy has cancer, and that Mommy goes to doctors, and that this cancer will sometimes make Mommy feel really sick and really tired, and if she has a port, I like to point that out to kids.

If you’re in a healthcare system that has child life specialists, I would really encourage you to lean on those professionals. It’s called child life specialist, and they are often in the hospitals, or some of the clinics have them. They will do things like, they have, like, stuffed animals that they put ports in, and the child can see this is how it happens, and this is where the medicine goes in. And they are excellent resources for people to lean on. I know not every system has them, but if you go to a university or a larger oncology practice, oftentimes they will have access to that, and I would really encourage you to get…so, it’s never too early to start introducing some of this.

It can be too late, though. I think that’s the one thing I have to say, is that we can’t have a conversation with the child that Mommy’s dying, and introduce all these things for what’s happened. Like, cancer, and all. We have to introduce these in stages for them, and another really good way is, say you have a child that loves Legos, sitting down and playing Legos, and having the conversation, is one very non-threatening way. Sitting down and coloring with them, because it’s hard.

Some of them have attention issues, but I think it’s important to know that it’s never too early to start conversations about, and we’re going to call it cancer, and we’re going to call it can be really sick sometimes, and we’re going to use the words medicine, and we’re going to use the word doctor and oncologist and those things, and that might be enough, for now. So, I don’t believe it’s that, we’re ever too early, but I do believe there’s such a thing as too late.

Melissa Jenkins: [Redacted] has a question, it’s probably, he has children of the same age.

Kelly Grosklags: Hello, [redacted].

Male Speaker #2: Hi. Yes, so, I kind of think that sometimes we’re sending mixed messages between, like, the messages I’m sending and what messages my wife is sending. Similar to Edmin, my wife doesn’t like to talk about it, at all, like, even when I try to bring it up. For instance, she just had some pretty major progression, like, all down her leg, where she’s taking, like, oxycodone every three to four hours right now, like, for the past few weeks. 

So, when she went into the hospital, like, she was there for, like, five days, like, the way she spoke to the kids was, oh my leg hurts. My daughter asked, the five-year-old…I have a seven-year-old son, a five-year-old daughter, and a soon-to-be three-year-old son, he’ll be three next month. They’re all at different levels, so to speak, and different personalities.

My seven-year-old’s become more withdrawn, playing, like, games on devices now a lot, and stuff like that, and even when he wants to ask for help, doesn’t. He'll, like, internalize it until it’s, like, it becomes an issue to him, and he’ll cry or something like that. My daughter is very inquisitive and very outgoing. Like, she’d even like, why does Mommy go to the hospital so much? Why does Mommy…and really doesn’t think of it in a bad way, but just, like…and then my youngest, yeah, just…one new development is, we have a babysitter in the afternoons now, but you know, they just love it because it’s, well, because I’m in a better mood because I’m not lashing out and spiraling, and like, I’m always…which is not a good thing, either…

Kelly Grosklags: First of all, you have a lot as a caregiver on your plate, when you look at caregiving, and being a spouse, and being a dad, and all the things that you’re trying to manage, going around. I just want to say, you know, some days you’re going to do better at it than others, and that’s just how this rolls. You know, the people I’ve worked with in the world that, in my practice, that don’t really want to talk to the kids about it, it comes back to their own fear, and their own, and I can’t fault them for that. I mean, as a parent, to look at…

Male Speaker #2: Can I interject? I’m sorry.

Kelly Grosklags: Yeah.

Male Speaker #2: Another thing I did for the first time, because she just stopped Enhertu, and she’s on weekly Taxol, and she is, like, the hair started, for the first time in three years, the hair really, started losing her hair. So, I actually shaved her head this weekend, but we just said…yeah, but it was another great opportunity to seize, and seize on, and she was just like, oh look, Dad gave me a haircut like him, or something like that.

Kelly Grosklags: Well, you know, the thing is, the seven-year-old is certainly aware. The five-year-old sounds…

Male Speaker #2: He can read cancer center when I go there. Like, he can read the building, so…

Kelly Grosklags: So, I think the selling point is getting some support for your wife, even if, you know, somehow, if she would take it…

Male Speaker #2: She refuses therapy, and that was, like, an ultimatum a while back, and she reached out, and then never followed up. We were able to do couples counseling a while back, but she’s not even keen on that right now, so…

Kelly Grosklags: Does she go to any of the groups?

Male Speaker #2: No.

Kelly Grosklags: Okay. Is she in, like…?

Male Speaker #2: She talks to her sister, and that’s it. No friends anymore, nothing.

Kelly Grosklags: Oh my gosh. That’s so sad. You know, I’m sad for her, and I’m sad for all of you. What I will say, though, is the selling point here is that if the kids aren’t given some opportunity to prepare, it can be a really, really difficult road for grief. And also, there are opportunities here that we’ll miss if conversations aren’t had.

You know, again, videos, cards, whatever it may be for those kiddos, but also, your seven-year-old is very clearly aware of what’s going on, and I think we don’t have to get down to the nitty-gritty in every detail with the kids.

But I would strongly encourage the use of the word cancer, and…because what’s going to happen is, their school is going to know. 

Melissa Jenkins: Can I ask a question? What would it be like if he would say to the kids, like, especially his seven-year-old, to have these conversations in some way, and acknowledge that his wife isn’t comfortable with that, but that it’s important to have that conversation?

Kelly Grosklags: What’s your wife’s name?

Male Speaker #2: [Redacted].

Kelly Grosklags: Does she know that you’re on this call?

Male Speaker #2: She knows I do all these, like, all these calls.

Kelly Grosklags: Okay. So, you can go away from this and just say, Hon, interesting thing, and rather than, like, saying, this is what they said you should do, is, interesting thing is, that I didn’t think about, maybe, is we’re robbing the kids of an opportunity here. And so, as much as we’re trying to protect them, we’re actually harming by not involving them in what’s going on. 

They will start to fill in the blanks, always. And I think what you maybe have to do, because you are ultimately, whenever she dies, if it’s in, like [redacted] said, five years or 10 years, or three years or two years, whatever that may be, you ultimately are going to be the one that’s going to have to be the landing pad for these kiddos. And you don’t want to start off that experience with them not trusting you, and they may say, why didn’t you tell us, you know? Why didn’t you…and so, it’s for trust. It’s a trust thing.

When we try to hide from them, and then Johnny at the playground says, my mommy wants me to tell you I’m sorry your mommy has cancer, and it’s like, what’s cancer, and you just said your leg hurts. And then, they start hearing things about cancer, and I’ll tell you, if they go searching, they are not going to find the answers we want them to find. We want to control, in our house, what they hear.

Male Speaker #2: The interesting thing is, I had actually this discussion with my therapist yesterday, like, when we were young, like, we were exposed to it on TV, on commercials, on…but now, like, all of their content is curated, and there’s really nothing that, like, they’re not exposed to it.

Kelly Grosklags: I think the primary thing is to introduce the word cancer. I think that’s…and then what cancer is. It’s living in Mom’s body, it’s a disease, it’s made her cells sick, it’s something, when she goes to the hospital or when she goes to these appointments, she has a doctor, like, you know, that takes care of…because another thing we want to do is, if we just say she’s sick, if the child gets strep throat, they might get worried they’re going to die. They might get worried they’re going to be sick forever. And so, we have to call this what it is.

Male Speaker #2: So, there’s an actually potential, there’s a potential teachable moment coming up this afternoon, because Melena has her oncologist appointment today, and my dad is actually coming to pick the kids up from camp, which he hasn’t done this whole year, so…

Kelly Grosklags: Okay. That’s another conversation, right? But you know, the fact that you are aware is half the positive here. This is really great. Sometimes I work with two parents that don’t want to talk about it. And so, I want to commend you, [redacted]. You know, I want to give her some control, but I also think her own fear, understandably, is getting in the way, and it’s not, this isn’t going to be helpful for the kids. So, thank you for asking that.

Male Speaker #2: Okay. Thank you.

Kelly Grosklags: I would at least start with introducing the word cancer. Yeah.

Male Speaker #2: Absolutely.

Kelly Grosklags: [Redacted].

Female Speaker #2: So, you will see with my accent that I’m not American, I’m French, but I’m living in New York, actually flying back tomorrow, I’m in Paris right now. Thank you for this conversation and the question that the participants already asked. I have so many questions, so I tried to be very concise. The main one I have, like [redacted], I am also a single mom of a six-years-old girl. I was diagnosed two years ago, so she was four. I’m, so, a single mom in a divorce process since forever, since she was conceived, more or less.

So, it’s a difficult situation. My daughter, she’s doing great, I think, for now, but I kind of know that myself and the dad are not saying the same thing to her. So, I was wondering how to deal with that, I mean, with my daughter, because don’t try to suggest to discuss with my ex-husband, the dad, because it’s, I mean, it’s an impossible situation. So, it’s something I cannot do.

A second question is, of course, I hope that, all the participants here hope something will happen and we’ll be here for years, but we might not. Also depends on the age, et cetera, but if I was to die sooner than later, she would go to live with her dad, obviously, that she’s not staying very often. I do my best, but unfortunately, she’s not seeing him very often. She’s with him now, for a month. It’s the first time, some kind of vacation with him. I mean, she’s okay, but she’s not, like, super-excited when she goes with him, obviously, because she’s been with me all the time.

And a third thing, it’s a really specific question, because I introduced to her the word cancer, and try, you know, as much as you can know for four, five, six years old, but to tell her a bit what’s happening. And she asked me, actually, one or two months ago, I, first tell me if I was right, because she asked me, but what you have, cancer, it’s not really a thing, it’s not serious, it’s what Dad said. I said, no, it is serious. It is a serious disease. It’s not like when you have a flu, but I’m trying to be treated, et cetera.

But she said, but are you going to die? Are you going to die even now, when I’m young? And what I told her, it’s, well, you know, everyone is going to die. We never know what’s going to happen. The difference with me, that I might die from cancer, but then I laughed, I said, do I look like I’m going to die? No, no, I’m here for now, and doctor are here to try to keep me here. So, for now, everything is good, and if the worst were to happen, you know, we are not here at all, but you will have a lot of people giving you love all around you.

So, this one was specific, and the two other went a bit more broad.

Kelly Grosklags: [Redacted], first of all, wow. I mean, you’ve got a lot going on, and you know, it must be really hard to have to, like, sell the point that, no, this is very serious. You know, you’ve kind of got the opposite going on of what [redacted] asked, so you’ve got somebody kind of minimizing what’s going on. What I want to say is, I think you’re doing a beautiful job and the best with all that’s going on. The thing is, it’s very tempting when the kids say, are you going to die, it’s very tempting to say, no, no, no, no, no, and I think you handled it beautifully.

I think what you did was you gave her a moment of hope, but also some reality. Now, when kids are asking that question, ultimately what they’re asking is, am I going to be okay? Who’s going to take care of me? They don’t want a parent to die, but that’s where we have to reassure them with the answers, is, you need to know that if I were to die from this, you’re going to have Grandpa So-and-so, and Auntie So-and-so, and all these people that are going to love you.

Right now, though, my doctors and I, we’re working really hard. I also want you to know, if things change, do you want me to tell you that? Ask them those questions. This is important for everybody to hear. We got to start setting up some parameters with our kids based on, and we want to ask them, rather than just go to them and tell them, we want to ask them. You know, do you want updates on my appointments? If things change, do you want to know, no matter how old the child is.

That gives them a sense of some control, and some, you know, sense of involvement. So, ask that. That way, they’re already kind of like, oh wow, okay, so, I can be rest assured that my mom is going to let me know when things change. I don’t have to wonder and be hyper-vigilant and all of that. I think that’s important. But we have to reassure them that we have things in place for them, that they are going to be okay. I mean, that is really, ultimately what they’re asking, and I think that’s important.

So, thank you for asking that. It takes a lot of bravery, because sometimes they’re asking us questions we don’t even have answers to, and by the way, it’s okay to say that. You know, I don’t really have that answer, but I can find out for you, or maybe when…because we don’t, if they say, when are you going to die, we don’t know, and we don’t have to fill in all these answers. We just have to say, you know, those are not things I know, but if I get sicker, would you like to know that? 

Do you want me to tell you? Yes, okay. And I think that’s really a beautiful way to handle it, because now we’ve established, as I went back to, that trust. We want to have trust with them. That’s going to potentiate their security and safety, if they have trust in the home they live. It’s really great that she goes to see her dad, if that’s who she’s going to live with, but the thing is, likely, you’re going to be her primary parent right now, and you’re the one she’s going to have the trust with.

So, she’s going to hear these things from him, but she’s likely going to align with what you’re telling her, because you’re the one that’s providing her consistent, basic needs, and that’s what’s really important. 

Thank you for asking.

[Redacted].

Female Speaker #3: This sort of also piggybacks on what you and [redacted] were just talking about. I got the, are-you-going-to-die question. I have an 11-year-old, he knows pretty much everything that’s going on, and I did say something to the effect, well, my doctors are working hard, and he knows many of my medicines have stopped working, and I start a new one. And when I answered that to him, that, you know, my doctors are working hard, and we have lots of medicines, I immediately felt like I was betraying him. I felt like maybe I should’ve said, well, yeah, I am going to die from this. So, I don’t know if I should go back and start the conversation again, or wait for him.

Kelly Grosklags: Well, it’s a hard conversation, right? You know, I think what we have to remember is kind of, there’s two things that can be true in our answers, that your doctors are working really hard, as you are working really hard, and what we know is that eventually, the medicines will likely stop working. And so, I want you to know that…and that’s where you can align with him again, is that I want to keep you updated as things change, but for right now, what I know is that my doctors are working really hard.

And that, you know, do you want to know when things change? Do you want to know when it changes, and I think that’s the thing that you can say, because both things are true, [redacted]. Like, yes, this will likely be what you die from, but also, in this moment, your doctors are working really hard.

Female Speaker #3: So, I think that idea of asking his permission is fabulous. That’s a great idea. Can I ask one more question?

Kelly Grosklags: Absolutely.

Female Speaker #3: How do you feel about…like I said, he’s 11, and a lot of the deeper conversations about his life, his social life, his feelings, are with me, not with his dad. So, I was thinking about getting him started with a therapist just before he needs one. What do you think about that? And it seems sort of hard to find someone, too.

Kelly Grosklags: I 100 percent think you should. And what you can do is start with the pediatrician’s office, and ask if they have any, you know, if they have any therapists that they work with, because I think that would be the place to start, but I 100 percent think…I think everybody could benefit from therapy, honestly. I mean, now I’m a therapist, so I’m biased, but I haven’t met a person yet that’s come into my office where I thought, well, you don’t need this, because no matter what it is…you know, and then you’re also teaching him life skills.

How do you talk about hard things, how do you have conversations with people? So, that’s really important, too. And you know, it’d be really great if you could get a child therapist that has oncology experience. I mean, that would be ideally what I would look for, but absolutely, [redacted], absolutely, because it also, then, takes some of that pressure off of you as his mom, that, you know, you can’t be his therapist. And I think that any help that we can get is optimal, and is recommended. So, how amazing, and what a loving gesture, as a parent, to think about therapy for him.

Female Speaker #3: Thank you.

Kelly Grosklags: You’re welcome.

Yes, [redacted].

Female Speaker #4: Hi. I’m so glad that you’re doing this, this is so helpful and informative. I am the grandparent of a four-year-old grandson and a six-and-a-half-year-old granddaughter, and I’ve been living with metastatic disease, breast cancer, for four and a half years now, thank God. And I’ve availed myself of all the support that I can, through a group, you know, at NBC, which is wonderful. If any people are on here who have not been joined, Monday, Tuesday, Wednesday, or Thursday group, think about it, because it’s really wonderful.

I have two dilemmas, okay? One is my adult children, both boys, who like, they prefer to live in denial. I don’t think they’re really in denial, but they don’t want to talk to me about anything, okay? I’ve told them where the notebook is, with all that information. They’ve looked up stuff in it occasionally, like when our internet goes on, how to get back on with the internet for their phones. You know, so, they’ve used this book, and I’ve showed it to them. I keep the adult children abreast of, you know, going to my appointments and scans, and tell them the good news, as well as changes and concerns.

And I continuously give them the message that it can change on a dime. The medicines can stop working, and I’m not sure what will happen at that point. Now, they won’t share a lot with me about how they’ve approached it with their children, and I am very cautious about having discussions with my grandchildren without my children’s permission to do so. They’re their parents, and I don’t really feel I have the right to have talks with them about…I would be comfortable doing that with my grandkids, and level.

But you know, they haven’t said, sure, you know, we can talk about this. I don’t even know if they have used the word cancer with my grandkids. About six months ago, I bought children’s books, one for a younger child, one for, you know, my older granddaughter, that was all about cancer, telling kids about cancer, and what it was, and what it meant to live with it. They haven’t even told me if they’ve used those books with the kids or not, and when I’ve asked them questions, they kind of side-step.

Kelly Grosklags: Yeah. So, you’re wondering how to…well, first of all, [redacted], I have to say, I really respect that, and have a lot of empathy for this kind of eggshells you’re walking on between your boys, because you don’t want to alienate, right? I think what’s important, though, is to keep working with those boys, your sons, on the importance of this for you, and that they don’t have to have the conversation with them if they don’t want to. You need to. There’s the difference.

They don’t want to. That’s one thing, but you need to, because you love these kiddos, and you want to have a mark in their life forever, right? And I think the thing is, you know, the thing about denial, really, is in order for somebody to really deny something, at some level, they have to accept it, or they have to acknowledge it, because they’re spending a lot of energy pushing it away. So, you know, I think denial gets a bad rap. All I see it is as an opportunity for us to lean in a little more, and just say, hey, you know, this has kind of become this elephant for me when we’re together.

I’m not saying this is the thing you have to talk about 24/7 when we’re around, but I really, it’s important for me, and I’m not expecting you guys to have the conversations with the kids, but can I have those books back, because I want to read them. And I think that’s probably where you go, because you may be pushing a boulder up a hill, waiting for them to do this, and you know, everybody has their own reasons, and I don’t judge them as to why they don’t want to talk about that.

But at some point, we have to step aside and say, okay, I’m respecting your need to not talk about this. I want you to respect my need to talk about it. So, the compromise is, maybe you don’t have the conversation with the kids, but I want to have that.

Female Speaker #4: That’s good advice. I’ll try it. I’m worried about the results of what that might be. You know, with that son who has the children, the grandchildren, there’s been pushback, you know, about other hard conversations I’ve tried to have with him that don’t even involve the kids. And sometimes, I get the answer, well, that’s too bad, you’re overreacting, you’re irrational, and I won’t be even coming here anymore. I can’t talk to you anymore.

Kelly Grosklags: The interpretation of that is, this is so painful, I’m so scared, and I don’t know how to deal with this. So, I’m going to run and not deal with it. And I think, you know, time, all of you on this phone call understand the preciousness of time, and that time changes, and time is truly a privilege, and that we get to, you know, we can spend our time negotiating about this, and arguing about this, or you can listen to me, and utilize this time for good. And you know, I think you have to remind them, too, that this comes from a place of love.

And I think all of us need to hear that, that when we want to have these conversations that are hard, nobody wants to have these. I mean, nobody wants to have these conversations. They’re not pleasant. They’re uncomfortable. They’re filled with so much emotion. Sometimes they’re too realistic to even imagine. They’re just so hard. And yet, they’re from a place of love. It’s not to be controlling. It’s not to be overbearing. It’s because I love my grandkids, and I love you, and that’s why I want to have these conversations.

Female Speaker #4: Yeah, I agree totally, and maybe I need to say it a different way, but what I’ve told both of my boys, and my daughter-in-law, is that I really feel grateful that many people, most people don’t know when they’re going to die. I don’t know when I’m going to die, but I have a best-by stamped on my forehead now. I mean, I know what I’m going to die of, at least, you know, and that is the process, and just, I tell them all the time that I could’ve died of cancer 20 years ago when I first had it.

And I consider this really a total gift, that we can really become close to each other, and respect each other, and be there for each other, and that may never have happened if I didn’t have the diagnosis. You know, you don’t realize how precious the time is, and you don’t have the courage to have those conversations without being shooken up in some way.

Kelly Grosklags: Thank you for saying that, and I think you’ve given lots of us. Good luck, [redacted]. Thank you.

[Redacted].

Female Speaker #5: Hi, Kelly.

Kelly Grosklags: Hi, [redacted].

Female Speaker #5: Thank you for doing this. So, like [redacted], my kids are a bit older. They’re 22 and 21, and from the sounds of what you’re saying, I’ve been doing everything kind of right. So, I just recently had a conversation with my 21-year-old son, I haven’t had it with my daughter yet, just, the time hasn’t been right, but I’m kind of running out of options, so I wanted to talk to them a bit about…I’ve been living with this for two and a half years, and I think they just kind of, she’s doing fine, and I’m not the best at keeping them up to date.

So, I did actually what you just suggested, and asked a lot of questions, how much do you want to be involved. My son and I are very, very close, so I was a bit taken aback by the conversation. He handled it very well. I’m working with an end-of-life doula, and she actually, like you, lost a partner, and had young kids at the time, well, not like you, but had to deal with this. And so, she’s also a grief counselor, and she also does anticipatory grief, so she’s willing to work with him on all of this.

So, I asked him how involved he wanted to be at the end of life, with my end-of-life process, and he wanted to be very involved, and I’m a bit…I don’t know if that’s him trying to be brave for me, or, like, how healthy is it for me and him to go to the funeral home together. I’m just so unsure about this. Like, I don’t know that I’m okay with it. I don’t know how to feel about it, but you know…

Kelly Grosklags: Well, I think it’s a beautiful question, [redacted], and what I want to say is, I think it’s important for all of us to always say to people when they answer a question, they can change their answer. So, if he says, I want to go to the funeral home, and then someday he doesn’t want to go to the funeral home, for whatever instance, that’s okay. And so, we reassure them. It would be absolutely okay if your 21-year-old wants the funeral home, that we at some level have to trust that they’re answering out of authenticity.

And I think that that’s, you know, really, really important. Probably, you’re having really big feelings just about the, even the thought of that, but you know, again, a lot of this anticipatory grief, and a lot of the purpose of anticipatory grief is to do some of the necessary “things” so that later in life, we don’t meet as many “obstacles.” It’s still going to be really hard, and it’s going to be all these things, but if he can go back and say, wow, I was there for my mom and supported her, and I got to partake in some of this. That actually is going to be helpful for him.

Often, things that are harder up front can help us later on in the process. Okay. So, it might be really, really hard right now, but it has potential to be very healing and soothing later on. So, we have to say to the kids, you know, you can change your mind if you want to answer me, you can change your mind at any time. But I also think, and when you answer me, I’m going to trust you, just like when I answer you, I want you to trust me, you know, if that makes sense, yeah.

Those are, I have a lot of empathy, these are really hard things, but you sound like you’ve done an incredible job as a parent, that your child would feel safe enough to answer.

Female Speaker #5: Yeah. Yeah, we have, definitely have a special relationship with both kids, but…like [redacted], my daughter’s very Type A, so it’s more logistic, but my son is very sensitive, and a lot of empathy, and I just, I was a bit taken aback by how involved he wanted to be. And he’s like, and we’re going to do this, and everyone’s going to wear bright colors, because you love bright…just like, you know, it’s like, whoa, like, overload. But yeah, you’re right, I should just trust it, because he’s actually a pretty authentic guy, so…

Kelly Grosklags: And loving people, and love, isn’t always convenient, but it is a privilege to love, and to be loved. And I think this’ll be a privilege for him, in some ways, too, because he’s going to look back on this in 20 years, and he’s not going to have these regrets that he wasn’t involved. I mean, that’s one of the beautiful things.

Female Speaker #5: And I didn’t think of that, yeah.

Melissa Jenkins: Kelly, can I just add, I can imagine that for him, it’s such an uncontrollable situation, that this gives him a sense of a little bit of control…

Kelly Grosklags: Yeah. Yeah, absolutely. That’s…absolutely, Melissa. But we just have to kind of set up, and this is for everybody on the call, that we’re going to develop this trust between us, in that if we answer each other, we’re just going to have to take it for face value, because nobody has any extra energy to be spending second-guessing, and wondering, and that. But I always say to people, you know, you can change your mind if you answer today, that yes, you want to be involved. And then tomorrow, that feels scary, or you answer today, no, I don’t, and then you think about it tomorrow, you know? So, we have to give people space. All of this needs space to breathe, and we’re all doing the best we can do, and some people look really smooth in these conversations, and some, it’s more clunky, but at the end of the day, everybody is doing the best they can do, and they love. This comes from a place of love. We really have to remember that.

You know, all too often, I see people get into these kind of power struggles, we’re not going to talk about them to this, yes, we have to, no, we’re not. And you know, ultimately, I encourage those of you that are living with metastatic breast cancer that your voice has to be the loudest in a lot of ways, in regards to if you have the need to have these conversations. It really does, because there are a lot of things that, as people are dying, they have their own kind of phases they’re going through, and their own processes, and it’s really, really important that your voice be heard.

You know, I’m a huge advocate for that, because we know cure is off the table, but healing never is. There is always opportunity for healing, and that means relationship healing, communication healing, faith, spirituality, learning to use your voice, allowing yourself to feel love, feeling worthy. All of these things, I’ve seen, you know, and I’ve been at the bedside of hundreds and hundreds and hundreds of people as they’re taking their last breath, and I will say, I’ve seen some of the most beautiful healing happen at the end of life.

So, I know that, unfortunately, right now a cure is not possible, but I don’t ever want anybody to not feel like they don’t still have opportunities for very meaningful moments and healing, because there’s many that await.

Melissa Jenkins: Anybody else want to ask a question?

Male Speaker #3: Yeah, I would like to ask something. I have a four-year-old, and she has just discovered that, what it means to die, because an elderly neighbor just passed away. So, she comes up with this question, like, she’s really scared that we are going to die, her parents. My wife has metastatic breast cancer, and currently, the treatments are working, so we’re not yet thinking about those things, but she asked, would you be with me forever, because she doesn’t want us to go the way of our neighbor, who she was very friendly with.

We told her that nobody lives forever, and everyone has to pass away at some point or other. And now, her question is, will you be with me for a long time? When she asks this to me, I say, I’ll try to be with you as long as possible. I will be with you as long as I can. But when she asks her mother, she really doesn’t know what to answer, because she doesn’t really want to tell untruth. And she will say we have been…I just suggested her that we haven’t been very honest with her, and we treat her as a little person, we don’t sugarcoat anything.

But there are some things that she can’t understand, she won’t…we don’t want her, want to burden her with something that might happen maybe after two years, or maybe even 20 years, we don’t know. So, what do we answer when she asks the, like, would you be with me for a very long time?

Kelly Grosklags: And she’s four?

Male Speaker #3: Yes, she’s four.

Kelly Grosklags: Remember, in a four-year-old’s mind, what time and long time is, okay, it’s very different. Like, if you think about saying to a child, you know, you can’t have that cookie until later, after dinner, that’s a very long time, okay? Their concept of time is very different. And so, a long time might be next week. A long time might be tomorrow. And I think your wife’s answer can be just the same as yours, and that is, I’m going to stay here as long as I can.

Now, depending upon your faith, some people believe in afterlife. Some people believe in heaven, some people believe in universe, whatever that may be. Sometimes, when it gets closer is, we say that physically I’m going to leave this Earth, and then, that’s where I encourage the gifting of a special toy. Maybe it’s a stuffed bear, maybe it’s a rock, maybe it’s something, but that you will always have me in your heart, and I will be here spiritually. And when you want to connect with me, I want you to hold this, because I kissed this, I put Mommy’s love into this.

I’ve done all these things, and I want you to always hold this. When you’re scared, when you miss me, when you’re mad, whatever it might be, and this is it, and I think that’s a beautiful thing to gift them. Right now, the treatments are working, so, to say to her, well, this could be two to 20 years means nothing to a four-year-old. It just doesn’t. It’s actually more confusing. They’re like, huh? They want, you know, are you going to be here tomorrow? Are you going to be here next week?

That’s a long time, and utilize…you know, she’s curious, and we don’t want to stunt that curiosity. That’s an opportunity to lean in, and a really beautiful opportunity. For the older kids that are, like, kind of seven, eight, and a little older, sometimes we can start talking to them about, do you want to know what maybe this is going to look like? There might be a hospital bed in our living room. There might be…and we can start getting into some of those concrete things, if they want to know.

But right now, she will be soothed and reassured with, I’m going to be here as long as I can be with you. I’m going to be here as long as I can be. But there might be a point for all of you to think about kind of that special gift, where…and it doesn’t matter if your kids are 21, I mean, I’m telling you, I’ve seen many older kids holding a special rock from their parents, a shirt, a blanket, a stuffed toy, it doesn’t matter. But I’ve put in this my love, and when you want to feel close to me, you hold this. Thank you for asking that.

Melissa Jenkins: Kelly, I love that point about bringing something, this could be given at different moments, not even just at the end of life, but at any moment, like a child going to college, like, I’ve poured my love into this, here, or this, or, going to the first day of kindergarten, or whatever it might be. So, I think that that’s…

Kelly Grosklags: Absolutely true, and it introduces that concept to them, and kids are going to get scared long before you, you know, people die. And so, this can be a connection with them. It’s really helpful for even, I would say, 15 and under, even the 15-year-olds I’ve worked with will get in, they love it. You’ll see them carrying around this memento, see it in their purse, see it in their pocket, and you kind of, you know, at first, it might feel like, they might go, oh, okay, whatever.

But you’re right, Melissa, if you introduce it early on, they have it forever. It doesn’t have to become this big thing, right? Like, okay, but I would start encouraging people to think about that, and if your daughter’s asking a lot about that, this might be a good time. You know, sometimes you seem like maybe you’re scared, and here. If you’re in your bedroom and you miss us, you can hold this. You know, Mommy kissed this, or whatever that may be. 

Again, whether they’re adults or kids, I always say, if humans have the courage to ask us questions, we have to somehow have the courage to answer. And when I train physicians and advanced medical people, this is what I say to them. If your patients have the courage to ask you the question, certainly have to have the courage to answer. And sometimes the answer is, I don’t know right now, but I’m going to try to find out, or, I know people that do.

But it takes a lot of courage to ask these questions. It really does. And again, remember, we’re building trust. That’s ultimately what the take-away is here, too, is these conversations are building trust, which builds safety and foundation for them.

You guys are asking such beautiful questions under such really hard circumstances, but I think what I’m hoping people are realizing is, none of you are alone. You know, you have this whole community that’s thinking about some of these very similar things you’re thinking about, and I hope you’ll lean more on these resources that are available.

I had no idea, Melissa said, we have meetups every day. I was like, who does that? I mean, that’s incredible, that you are offering that, Melissa. And how do people access that?

Melissa Jenkins: I can send that to you. Through the discussion boards, but I think it’s getting around word-of-mouth. And so, yeah…

Kelly Grosklags: Incredible. I mean, really, I commend you.

Melissa Jenkins: Thank you. Anybody else have questions? [Redacted], people who haven’t had a chance to speak? If you don’t want to speak it, you can also type it.

Female Speaker #6: I’m [redacted]. I have a five and a 10-year-old, and the 10-year-old knows, he knows I’m sick, he knows it makes him mad when I can’t do things. We’re trying to make a team against… it’s us against the cancer, it’s not…but I know he’s mad because he misses me, because I’m not able to do the things that I was.

Anyway, so, he knows about it, but he doesn’t know about the death part. He doesn’t know that it could kill me, and the five-year-old is like, if it could be a long time, why would you give them that info? I don’t know. What do you think about that?

Kelly Grosklags: How are you doing with your treatment, [redacted]?

Female Speaker #6: I just found a drug that’s helping a lot. Yeah, I’ve been metastatic for a year and a half.

Kelly Grosklags: Okay. You know, again, sometimes it’s more asking of the questions of him, like, have you noticed Mommy’s been more tired, those things. And so, we have this conversation in phases. We don’t just run in and go, do you know that you’re going to die from this? It’s more these phases, and asking him, and seeing if he’s aware. Yeah, I have noticed. Yeah, and it’s okay to say to a child, you know, that our hope is that this medicine keeps working.

There might be a time it doesn’t, and then, how does it feel to hear that, to say to him, how does that feel? Because then, what that does is it brings up conversation. You know, sometimes parents will have conversations with their children that their children already know, they’ve just been waiting for the parent to have it, and they start to wonder what is going on, why aren’t they telling me about this, and they fill in their own blanks. But you know, children realize when their parents look different, and are acting different, and they’re pretty in tune.

But it’s, you know, if we go about these conversations with questions, it gives us really opportunities, and if we ask more open-ended questions. You know, tell me how that feels when you see Mommy…you know, I think another thing that’s really important, and I love that kind of Team Us against Team Cancer, but it’s also really important to remember that, we remind the kids that this is not their fault, and that if Team Cancer becomes stronger than Team Us, we still are, like, really strong in our love, and all these things that we’re doing, that this isn’t anything you did to let me down, or lose, that kind of mentality. 

Thanks, [redacted]. Thank you so much for your questions. Good luck to you.

And so, I think that’s really important. I don’t know if any of you have seen the documentary, or Melissa, if you know about it, that I co-produced, called Dying Is Not Giving Up. And it’s a 35-minute documentary, we’re going to have another screening here probably in the fall, but it was with a patient of mine, Judy Erdahl, who was living with metastatic cancer, and dying of metastatic cancer. And she has a really beautiful way in there of talking about some of these things you’re talking about, [redacted], in that, you know, we all live until we die.

But I think it’s really important to think of this not as you’re giving in the towel, or that anybody did anything wrong, or that, you know, I think that is so hard, and as a ten-year-old, if he’s in any sports, he’s going to be in that mentality, competition, and winning, and all that. And I think that’s where we just have to say to him, you know, if you love me every day, Team Us has won. Team Us has won. If we love each other every day, and maybe even if we smile a couple times a day, or we laugh a couple times a day, doesn’t matter how strong Team Cancer is. We win.

And that’s really important, you know, really important. So, to reassure him that even as you get sicker, nothing he’s done wrong, I think is going to be really, really important. Did that answer your question?

Female Speaker #6: It was very helpful. Five-year-old, what would you…?

Kelly Grosklags: You know, the five-year-old is aware.

Female Speaker #6: Yeah, she knows about death, but she doesn’t…she just knows I’m sensitive, and sick, and I’m in bed, because she hasn’t…my son experienced my first round that didn’t, when I, Stage II. He’s doing good. He’s kind of like, it’s just back.

Kelly Grosklags: And you know, every age that they’re at makes a difference. We want to include the five-year-old in the family, and this is happening in the family. So, whatever that means, you know, again, yes, five and 10 years old, big difference, and different children, and all of that, but sometimes you can start with, do you understand what the word cancer means? Have you ever heard the word cancer? You know, those kind of things, and see where it goes.

You know, how do you feel when you see Mommy not feeling good? When you see me sick? How does that feel? Do you ever get scared about that? And if they say no and want to go off and play, let them go and play, because these are conversations we have, like I said, in phases, and we have them multiple times. This isn’t a one and done. Sometimes a five-year-old, if they can’t articulate, we say, will you draw a picture for me? Like, what do you think cancer looks like, you know, kind of thing.

But just having them involved. Again, I know we all are really well-intended to protect them, and sometimes we focus so much on protecting them that it can actually cause some harm, because they’re not involved. And then, all of a sudden, when things are getting really serious, and we’re at the end, and they have had no idea what’s going on, now they have to have this really big reality, and they haven’t had time to kind of process it. 

That is the only thing about, when I see people with terminal disease, is that it gives people…I don’t necessarily prescribe to gift, but I prescribe to the word opportunities, gives families opportunities, gives kids opportunities. We do know by research that if kids have opportunities up front to deal with some of this anticipatory grief, and have had ways to feel safe, and scared, and all that dance, that later, they will do better. They will do better.

Doesn’t mean they’re not going to be sad and they’re not going to struggle, but that they will do better. And so, we have opportunity, you know, you have opportunities, living with this disease, to make legacy marks for your children along the way. And those aren’t necessarily easy to do, but I’ll tell you, they hold a lifetime of comfort.

Female Speaker #6: Yeah, I plan on making two boxes for, one for each of them, and putting in things that we connected about, and just, like, maybe recording the lullaby that I sang to both of them, and…

Melissa Jenkins: One more suggestion as well, and I’m pointing to the anger that you said your son feels, is, you know, that would be an opportunity also to talk with a therapist, to get him involved with a therapist if he’s not already, and have a conversation about the anger. And Kelly, you could probably say more about that, but…

Kelly Grosklags: Well, I think that’s good. Did you say he’s angry, or you’re angry?

Female Speaker #6: He’s angry. He’s angry at…and he gets angry at me, and less so, we’re trying to change his opinion, when he thinks, you know, when I can’t remember things, or chemo brain, or I don’t get out of bed, I don’t join them, he just…last month, he said, I don’t care, or not…

Kelly Grosklags: So, I think, you know, where we set up is, he’s really angry at the disease.

Female Speaker #6: Yeah.

Kelly Grosklags: And it’s hard not to personalize it, in that, you know, maybe that’s…rather than trying to, like, talk him out of the anger, we channel it where it belongs, which is at the disease, and you’re right, Melissa, I mean, he would do really well talking to a therapist.

I always want to make sure the children’s teachers are aware, and the guidance counselors at school are aware, because many schools have opportunities, and you know, I always say to kiddos, this doesn’t give you the right to not follow rules, or whatever, but it does give us a better understanding of maybe why you’re struggling, and we need to give you some more support.

Most kids don’t want it advertised at school. They don’t want to be known as the one whose dad died, or mom is sick. That’s not what we’re talking about, but in the privacy of those conversations with teachers. I just really encourage people to kind of give a heads-up, you know, because they can go to school and be distracted, but it still is part of their daily thought process. I appreciate you asking that, [redacted].

Female Speaker #6: Thank you so much for doing this.

Kelly Grosklags: You know, I also have a podcast that some of you may be interested in, called See My Grief, but there’s some different…if you listen to podcasts, wherever you listen to podcasts, I’m not a techie, but somehow I’ve managed to get a podcast out there. I have no idea. And…but there’s some different episodes on there that you might find helpful, and one of them is, I brought in the real expert from the Dougy Center, Donna Sherman, talking about talking to kids. So, that might be helpful to listen to. As I always do, I like to end with a reading. Is it okay, Melissa…?

Melissa Jenkins: Yeah, please.

Kelly Grosklags: First of all, another thing I want you all to know is, any time after I do a keynote or a talk like this, I spend a little time afterwards and I light a candle, and I send you each some light, because now you’re a part of my collective story. And you know, I’m always amazed at how people can come on with a stranger they’ve never met and ask these, such courageous questions. So, just know that if you feel a little jolt of, like, love or something afterwards, it’s my candle and me sending you some extra love.

And really grateful, Melissa, for this time. So, I want to read, this book has been really inspirational in my life, and it’s on Amazon now for, like, $9, by Morgan Harper Nichols, and it’s called All Along You Were Blooming. And what I like, if you know her story, you know that she’s…you know, sometimes it’s hard, you look at these things, like, these people don’t have a care in the world, everything is so beautiful, and that’s not true of her story. But I want to read this, and I lost my page here, so, okay. Here we go. 

“Step into the unknown and learn as you go. Walk through fire and come forth refined as gold and journey on. You have been made new in this day right now, and you see that nothing is ordinary.”

One of the things, when you live with cancer, is each day there’s an unknown. Each week, there’s an unknown. There’s scanxiety, there’s all these things, and I think it's important that we lean into the unknown, and know that when we get there, it will become your known, and you will have people that will help you.

And so, we lean in, we walk through it, and we just know that we’re going to be supported, and I think that that’s really important to remember when you’re living with metastatic breast cancer, because there’s a lot of unknowns. We highlighted them today. But when you get to it, when you get to the moment, you’re going to have lots of people that are going to be able to embrace you and help you. So, I am grateful to each one of you. I wish you the clarity to have these conversations, and the courage, and thanks for having me, Melissa, and Breastcancer.org, I’m so grateful.

Male Speaker #3: Thank you so much, Kelly. Thank you, Melissa.

Melissa Jenkins: Yeah, absolutely. Thank you for being so brave, all of you, to come today.

Female Speaker #4: Listening to others, you know, in the group too, and knowing you’re not alone. You know, for me, knowing that I’m not alone, we’re all wresting with the same feelings and thoughts about the future and life, regardless of how old our kids are, or grandkids. You know, we’re really all sharing some of the same process. So, thank you so much, Kelly and Melissa.

Kelly Grosklags: Thanks.

Female Speaker #4: So grateful to both of you.

Thank you for listening to The Breastcancer.org Podcast. Please subscribe on iTunes, or wherever you listen to podcasts. To share your thoughts about this or any episode, email us at podcast@breastcancer.org, or leave feedback on the podcast episode landing page on our website. And remember, you can find a lot more information about breast cancer at Breastcancer.org, and you can connect with thousands of people affected by breast cancer by joining our online community.