I'm really sorry that we're meeting under such difficult circumstances today. Yeah, me too. I mean, when you have kids, you do not plan on having conversations about them growing up without you. I know, it's the last thing anyone expected and not in any way an outcome that you were expecting or hoping for obviously. Yeah. Well, I was hoping we could talk a little bit about Jesse today. I know Sandy had mentioned that there were some concerns that you had. Why don't you tell me a little bit more about what's been going on? Yeah, sure. Well, at first he was just doing so well. I kept commenting to Tim about just how well he was coping with everything. Then he started having trouble at school recently, probably a few months now since I started getting worse, yeah. Yeah, what's been going on? Well, his grades are dropping, he's getting into a little bit of trouble. His teacher called us. Yeah, he's been disruptive at school, I guess like getting up when he's not supposed to and interrupting the teacher and other students. Then we got a call from the principal telling us we actually had to come pick him up because he'd shoved another student. That sounds like a really stressful phone call to receive. Yeah, absolutely because the teachers couldn't figure out what was bothering him, but we felt like we had a good guess. Yeah, and how did you address this with Jesse? Well, I actually said it was normal teenage boy stuff and not to really make a huge deal out of it. Yeah, but he's never done anything like that before. That's true. Yeah, well it is normal adolescent stuff to act out and test boundaries and it's also possible that it is related to anxiety he's feeling about your illness. Yeah, I mean I suppose but I don't know why he would shove somebody. He knows he can talk to us but then when I ask him how he's doing lately he usually says, "Fine". Yeah. I know he's not fine, but I don't want to force it. Yeah oh, and that's normal too. Is it out of character for Jesse not to tell you how he's feeling? Well, not really, I mean, he's a pretty quiet kid but I think we both have agreed that lately it seems like he's holding a lot extra in. Was there anything out of the ordinary happening in the days leading up to this incident at school? Did you have a treatment or a doctor's appointment or scans? Actually, yeah. I did have a scan a few days before that. That's right. Okay, because it's not uncommon for families to report that everybody's anxiety goes up around treatment days and scan days. Do you normally tell him when you're getting a scan? Yeah, usually. I think that last time I didn't because I didn't want to worry him, so I just told him I had a doctor's appointment. Well, what do you normally tell him? Usually say, "Oh, I have a scan in a couple days, but it's nothing to worry about". Well, since everybody's stress level tends to go up on scan days, this could be a good opportunity for you to just check in with him and normalize what it's like to have feelings about the scan. Maybe check in with him about it. It's also a good opportunity for you to even just model what it's like to share having feelings about the scan. So what would that look like? Well, one thing just to try to take the pressure off yourself, to keep in mind that this is an ongoing conversation. You don't have to get this all done in one big sit-down moment. So one thing you might be able to try is something like, "Hey Jesse, I have my appointment for my scan results today, and I noticed that I feel a lot more stressed and a lot more worried about what the results might be and I'm just wondering, do you feel like that sometimes too?" Yeah, we could try that. We could try that. Yeah, it makes sense. Also while we're checking in about how to talk with Jesse I was also wondering, what have you told him about your illness? Well, at first we told him I was sick and that the doctors were going to do everything they could to help me get better. I think when I was in treatment it was easier to talk about because we could talk about the treatments and what they were doing to help. Now, I really don't know what to say now. I don't want to say, I'm dying. That feels like it's too scary for him. Has the subject of you dying come up? No, never. Well, no, that's not true. When I was first diagnosed, Jessy commented that, oh, cancer makes people die. We said, "Well, not necessarily. We're going to go to the doctor and see what they can do." I don't think it's coming since then. Jessy does understand that cancer can make people die sometimes. Yeah. I'm also wondering what's his previous experience with death and loss? Not a lot, but Tim's mom died a few years ago, right about the time I was diagnosed actually. That's right. I'm sorry. Jessy was really close to her. He was. Well, how did you talk with him about her dying? She was sick for a long time. We told him that she died and is in a better place. Yeah. Did he ever ask you any questions about it? Not questions per say, but he was really upset about it more than we expected because it turns out he had stolen some change from her savings jar a few days before, and so he was blaming himself for having a part in that, even though he knew she'd been sick for a while. What did you say to him? Well, we of course reassured him that it was not his fault. Well great, that's perfect because a lot of kids that age do view death as a punishment and can feel like they had something to do with it. So you did exactly the right thing by reassuring him that death does happen and it's not anyone's fault. Well, it sounds like while you have talked about loss with him a little bit, the subject really specifically of you dying hasn't really been talked about. Yeah. I mean, we've talked about me being sick and that I don't have the energy to do all the things I used to do. Again, it was easier when I was in treatment, we told him more, but now that I'm not going to get better, we just talk about me being sick. We haven't really talked about the dying piece of it. Why scare him? No sense causing all of that worry. If Sarah improves. Tim, I'm not going to get better. I know this is so hard to be talking about this. You guys are both during a really great job. One thing to keep in mind is while you don't have to project too far in the future to Jessy about what you think might happen, it is really important to be truthful with him about what's happening in the here and now. What do we say? Yeah, it can be hard to find the right words. But you might want to try something along the lines of what's happening here and now. For instance, I had my doctor's appointment today and I want to let you know what the doctor told me. The doctor said that the medicine that they're giving me isn't working anymore and they're not going to be able to make me cancer-free. How does something like that sit with you? That helps. It's just weird to think about having this conversation. But it does help to think about some things that we could say, I think. Yeah. No parent wants to think about this or have this conversation with their child, it's an impossible situation to be in. My hope is that while we have these conversations and as we check in with each other, that we can help you navigate that a little bit. Again, to take the pressure off yourself, remember, just you're checking in with him, you're keeping him in the loop, and you're being truthful about what's happening in the here and now with him. I know it hasn't been easy to be here today and to be talking about all of this, there is another thing I wanted us to check in about, and that is Sarah, I'm wondering if you've thought about any legacy projects or memories you would like to leave for Jessy. Things you would like to share with him? Well, I wanted to write him some letters, but so far every time I've sat down to do so, I just get completely overwhelmed and I just can't do it. Sitting down to write an entire letter can be so daunting, especially in these circumstances. One idea would be to try to break it up into something smaller. Maybe you could do a wish jar or a memory jar for him. Tell me more about that. So instead of sitting down and writing one big, huge letter, you can break it up into smaller snippets. You get a jar or a box or something that's maybe even special for your family. On little pieces of paper you can write wishes, memories, hopes for Jesse, and fill the jar or fill the box with those hopes and memories. So it can be anything from I really want you to go to your senior prom to I remember on your third birthday, how you blew the candles out on your birthday cake. I like that. Yeah. I wonder if you could use your blog. That's a good idea. He's always online anyways. Always online. No. Because then he could see it wherever he is. Actually I could write or do video. He was showing me recently how he uploads all that stuff. Yeah. Yeah, that's a good idea. That might be a more natural fit for you if that's something that you already do, and that you enjoy doing. It's already something that you're sharing that can really be a lasting connection that Jesse has to you. I Know, this is so hard. I'm okay. I just worry about him when I'm gone. We've talked about what's going to happen. I want to be sure that he knows that I'm okay and that he's going to be taken care of. We've talked with Jesse. Jesse wants to be with me. I want to be there for him. I will be there for him. I just feel a little unprepared. Yeah. It's completely normal in this situation to be feeling unprepared and how are we going to navigate this. There's just a lot of stuff. There's a lot of stuff and it's really hard stuff. You two are doing a great job, and we're here for you. If you have questions both of you, for how to navigate this, my hope is that we can keep talking about it and help you find some of the words and coping strategies to help you get through it. Just being truthful with Jesse and letting him know that you're going to be taking care of him and you're there for him is really going to make a huge difference. We'll be here for you. Thank you. Thank you. This has been helpful to talk about this. Something else I wanted to mention is thinking about the time that you have together now and making sure that you have energy to really enjoy each other and have fun together. I know it seems contradictory given the circumstance, but really you have this time together now and making memories together. Not only is that going to help you, Sarah, in the here and now, it's also really going to sustain Jesse and Tim in the time ahead. Is that something you think you guys can do? Yeah. We can try. We can we try. All right. Well, I'm really glad that you came in today. I would really like to also check in with you again, continue our conversation, will that work for you? Yeah. Yeah. Okay, great. Well, it's really lovely to meet both of you. Thank you. Likewise. Okay. Take care. You too. Thank you
