Episode 1: What Now?

Episode 1: What Now?
Featuring Wendy Avery, Lisa Musser, Andy McCall
St. Jude Expert Lisa Clark, PhD

Introduction by Justin Baker, MD:

Connecting Through Grief When a Child Dies is a program for bereaved parents created by St. Jude parents who have experienced the death of their child.  I’m Justin Baker, Chief of the Division of Quality of Life and Palliative Care at St. Jude Children’s Research Hospital in Memphis, Tennessee. The loss of a child impacts everyone; no one more so than the child’s parents.  It can be devastating and you may wonder how you will ever survive your own loss.  As a physician and father, I have often felt ill equipped to help our bereaved parents.  It is our own bereaved parents who have taught me so much about what grief is, and about what bereaved parents need. 

Listening to our parents, I have learned to not sweat the small stuff. I focus on making every single moment the very best and most special it can be. They have also taught me that love is a unifying theme even in the midst of tragedy and tremendous suffering. I have also learned their relationships with their children who died, continue on and grow and change with time. They love nothing more than to talk about those children or hear our stories of the things we remember about them. Whenever others (doctors, Fellows, nurses, members of the psychosocial team or even other parents) have had the opportunity to listen to and learn from our bereaved parents they leave deeply touched and truly changed…better clinicians and people because of the gifts passed to them from these remarkable parents.

This podcast is hosted by one of our parents, Penelope’s Dad, Andy McCall.  Andy is a good friend of mine. He is a father, husband, 2nd grade teacher, an author.  When you listen to Andy, you will hear him introduce himself as Penelope’s dad – because he is and always will be.  It is through Penelope that Andy’s relationship with St. Jude began.  Penelope was treated at St. Jude when she was just over a year old.  In addition to Penelope’s cancer diagnosis, she was also a special needs baby.  Sadly, Penelope did not survive her cancer and peacefully passed away at home just before her second birthday. 

Andy has taught me a great deal and I am so grateful he is hosting this podcast.  The connection of stories shared by our parents and St. Jude experts, who offer their insights on grief, offer all of us an opportunity to learn about grief and to be more compassionate with those who are grieving.    Together we can all find a new meaning and hope.

Andy’s Intro:

Hey, I’m Penelope’s dad, Andy, and in today’s episode, you will hear my conversation with two moms about those first days and first decisions after the loss of our children.  I clearly remember asking myself “What Now?” shortly after Penelope died.  I believe it is one of the very first questions most parents ask themselves after their child dies.  As we share our stories, you will hear how deeply personal grief is and we all grieve in our own way.  I have learned that there is no right or wrong way to grieve and there is no magical timeframe for getting through grief.  Now let’s listen to the conversation.

Wendy: My name is Wendy Avery, and I am from Ohio. I have three kids, and my youngest son, Nick, was diagnosed with acute myeloid leukemia when he was almost 15 years old. And he was treated at St. Jude Children's Research Hospital for six months, his first protocol, but then, unfortunately, he relapsed very quickly just two and a half months later. And everything at that point went very quickly, and Nick died eight and a half months after he was first diagnosed in August of 2006.

Lisa: I'm Lisa Musser, and I'm from Virginia. And my youngest son, Thomas, was diagnosed with ALL at the age of three in May of 2005. He went through three years of treatment, one year off treatment, and then relapsed, and had two bone marrow transplants. And he passed away from a second transplant in October of 2010 at the age of nine.

Andy: Hey, and I'm Andy. I'm Penelope's dad. She was my only child at the time, and she was born with a genetic disorder. And then we didn't find out till later what it was, but she came to St. Jude with stage 4 Medulloepithelioma, and it was very aggressive. And, by the time we had made it from East Tennessee to Memphis, it had already grown and she had gotten a little bit worse. So we were at St. Jude for a shorter time than most people, but we chose to come on home and then she died about a month later after we left. So it was a quicker process than a lot of people's, but, you know, I think all of our stories, as different as they are, we all have some kind of something in common. You know, we're all here, and we're all trying to help each other.

Wendy: I know too, Andy, that all of our situations were very different, but we have this common bond and common thread throughout our stories just because we all have a child that died. So I remember, even before Nick died, when we were getting ready to go back home when he was doing well before he had relapsed, we were still at St. Jude, and it was our last few weeks there. And, I was anticipating going home after living out of state with my son for six solid months. I was his primary caregiver, and my husband had to stay home in Ohio and work. And, my daughter was in high school, my oldest son was in college at the time. And so, it was Nick and I, really, probably 95% of the time, just the two of us.

And so, when he was doing well and he was finishing treatment, he was so excited getting ready to go home. And all I could think about was, "How in the world am I supposed to just go back to normal life after this, even when he was doing well?" And I often think of it as like, when I was a kid, we had this really dangerous playground ride that we called the merry-go-round, and we just, you know, got on it. And, somebody spun it as fast as they could, and we would hold on for dear life and hope that we didn't fall off.

I think life is like that, and I feel like, you know, we can get caught up on this merry-go-round of life just with our daily tasks and our daily responsibilities that everybody in the healthy world is just spinning at top speed. And when your child is diagnosed with cancer, you get flung off of that ride. And then, whether your child dies or whether they're doing well, when you have to try to go back to some sort of normal life, it's like trying to jump back on that merry-go-round that's still spinning at top speed without getting hurt.

Especially after Nick died, it was extra difficult. And, I know we've talked about that. It's something that we all, kind of, have in common, not really knowing what to do next.

Andy: Yeah. I was so scared of the silence after it all. With Penelope having special needs, you know, we were 24/7 sweet pea, all the time. And, you know, my wife, she took a lot of that, but I was working, you know, because, like you said, life doesn't stop. You know, cancer throws you off that merry-go-round, but life doesn't stop for anything. And, I just felt, you know, lost. Like, 24/7 Penelope and now it's nothing, almost.And I was scared of that silence.

I was a new dad, you know, still. She passed away right at 23 months for her second birthday, and, you know, I was still learning how to be a dad and now, in a sense, it was almost over. "How do I get back on that merry-go-round?" And, Lisa, I know you had, with your boys, had to move back, you know. Was that the same for you, or was it different, or...?

Lisa: It felt almost completely overwhelming because Thomas's brothers were just almost two years older than him, but they were still just 11. So, we had a lot of emotional things to work through with them. So, for my husband and I, trying to work through our own pain while still getting back to life for them because we had homeschooled them out of necessity while we were in Memphis. And, because of Thomas's battle, we were, of course, behind in that. So, a lot of trying to get back to normal for us was just trying to continue eking through each day and the responsibilities that we had with them.

So I think part of maybe distracting ourselves from our own pain not trying to escape it, but some of the distraction was to be more purposeful in trying to help them in both of those roles, both through school and just getting back to their normal life, if that makes sense.

Wendy: Yeah. You know, I know you guys experienced the same thing. It's like, when our kids died, you go home, and there's just this flurry of activity. And, there's so many people in and out of your house, and there's funeral planning, and all of these things are going on. Everybody that you know and everybody that you don't know is bringing you food and all sorts of things. And then the funeral happens and everybody goes home. And I remember that, Andy, you talked about being afraid of the silence.

And, even though Nick wasn't my only child, I experienced a similar thing because, you know, I had quit my job when Nick got sick. And so, after he died, I didn't have a job anymore. But my husband went back to work, my son went back to college, and my daughter went back to her senior year of high school, and there I was sitting home in the silence, like you experienced. And I remember just not knowing what to do with that, not knowing what am I supposed to do next, you know? A month went by, two months went by. And, one day, I remember sitting in my living room and crying so hard all by myself that I actually physically threw up. And that shocked me.

And I was sitting on my bathroom floor just thinking like, "I can't believe this is happening, and I can't stay this way. Something has to change. This is not good for me." And so, I actually, oddly enough, went out. My solution was to go out and open my newspaper. And I found an ad for a home health care agency, and I'm a nurse, and I love home health care. I called them, filled out an application, and they hired me that day, the same day that I cried so hard that I threw up. And, 12 years later, I'm still working at that job, and I love it. But, in my silence, I had to find purpose and meaning somehow, and that's how it started with me. How did you find that in your silence, Andy? 

Andy: Well, I think, you know, being a man, you know, in general, like, we're not supposed to show all those emotions, and I tried for a long time to not let myself feel all those. Like, I tried to suppress those or I tried to mask it with something, whether it was good, bad, or otherwise. You know, and to see, you know, grief does that to you, this emotion comes up, and we just want to feel better. And I was like, "I've got to find something to feel better."

And until I realized that, you know, really, healing is not linear. We want it to be A to B, and we live in this world of instant gratification. I had to find an outlet. You know, I had to ask myself, "What would I be doing if Penelope was still here?" And life, which is teaching, and coaching, and paying bills, and fixing cars, and doing all those things that I had to do, you know, I had to go back to that.

And I had to, like you, sort of, mentioned, and I know we've all mentioned, you know, I had to find a purpose again, because I went from being a brand new dad and taking care of her all the time to, "I've got to figure   out me again, but I can't lose sight of Penelope. You know, I'm always going to be thinking about yesterday and hoping for tomorrow." I mean, that was my life for a little while. And I think we all do that. And, Lisa, I mean, I'm sure that, you know, getting back to the boys because, you know, they didn't stop and their lives had to keep going, you know, I'm sure that was hard like you said.

Lisa: Yes, that's true. But I think you made a good point, in that, we have to do something that kind of connects to ourselves in our own way of getting through this pain. One of the things that was very helpful for me, about a week or two after Thomas passed, my husband and I were discussing how we would try to honor his life. That was another way that we were trying to work through the pain, is to make something that helped us honor his life.

And my husband mentioned something about therapy dogs. And I remember thinking, "That's it." For me, at least personally, I had an animal background, and training animals, and working with animals, and Thomas had so enjoyed the therapy dogs at St. Jude. Well, actually we all had. And, it just really clicked that that was a great way to honor him. We had talked about having a puppy once he got through his treatment and was back home. We were going to get him a puppy, and that was something we'd promised him and let him look forward to.

So we went ahead and took that idea, and I started researching how to do therapy dogs, and how to train them, and where they could be useful. And that also gave me a great way to focus myself and to distract myself from the pain of losing him. And it also just connected with me on a personal level because it was a part of me that was there before Thomas even started his battle with pediatric cancer. And so, it fulfilled a lot of needs in us, in me personally.

Wendy: I like what you said, Andy, also about, you had to continue on with these things in this new normal, but also not lose sight of Penelope and not lose that connection with her. And I know that's something that I, from the beginning, had continued to search for. You know, "What does this mean that Nick is not physically here with me? How can I still be his mother? In what ways can I still have that relationship with him, even though it will very much be different than it was before?" And, that was an ongoing quest for me. And thankfully, you know, over time, I was able to discover what some of those things are.

And time really is what I needed. None of this stuff happened for me right off the bat. In fact, even though I got that job a couple of months after Nick died, I had to really be aware of allowing myself to feel the grief because I would get to the point where I started feeling like I would get sick or like my body would ache, kind of, like I was getting the flu but I wasn't really getting sick.

And I would notice that those were times where I just was getting back on that so-called merry-go-round too much, and I needed to pause a little bit. So, I would actually put on my calendar, for a day or two, the words, "Do nothing." And I would stay home and actually literally do nothing, and allow myself, if I needed to, stay in my pajamas all day, and sleep, or cry, or do whatever I needed to do to allow myself to feel it.

And that was really important for me. I think, if I wouldn't have allowed myself that chance to grieve like I needed to, then I very well might have been very physically sick. I think it's something important. Did you guys, either one of you, find ways to purposely grieve in the beginning like that, instead of, kind of, covering it up with busyness and activity?

Andy: Yeah. And, I think that's important. Like, whoever's listening to this, however they're dealing with this, it's okay. You know, if you needed to stay in your pajamas all day, you know, we need that. I think people are worried that that's not okay, to be sad for a day. And, I mean, for me, because, like you said, being a male, you know, I didn't let myself do that, and I felt that merry-go-round spinning me off real quick because I didn't.

But, you know, I started writing, and that's how I got to, sort of, deal with my emotions because I didn't really have to tell anybody my emotions. Tthat was my way of getting them out of my head. I think that's something that everybody needs to find real quick, is, what's going to help you deal with that?

Wendy: Yeah. I'm interested, Lisa, in hearing, like, what it was like for you because you had to go home to two boys who still needed you to take care of them. They were very young. And I didn't have that, and Andy didn't have that. So I could say, "Do nothing," on my calendar, and I could do that. You couldn't do that. How were you able to allow yourself the time that you needed to grieve when you had two boys that you had to take care of?

Lisa: Well, I think that's very true. And, you know, in some ways, it was helpful to have them to give me purpose every day and to get me out of bed every day, but there were times that we had to say, "My mind goes to the holidays." You know, we always were pretty open and honest with them that, "You know, this holiday might be difficult because we're missing Thomas." Or, you know, "Mother's Day might be a little more difficult because of this." But his birthday was my compromise. You know, we're still going to celebrate Christmas, we're still going to celebrate Halloween.

They're still young children, they still need to do these things. They're excited about them, they want them to be. But on his birthday, I would say, "We're not going to feel like probably doing a whole lot, and we're not going to be celebrating today like we would have if he were here with us just because that wasn't us, but Mom and Dad probably aren't going to be perky happy today. We're not going to get much done, we're probably not going to do much homeschooling today because this is a difficult day for us."

You know, we didn't really feel guilty about that. That was how we got through. They understood. We told them it was fine for every holiday, "You just be honest with your feelings and how you're feeling. If you're e xcited about certain days, that's good, that's fine. Mom and Dad may still be a little bit sad and we can be both. You know, that's okay because that's how we're grieving, and that's how we're loving Thomas still. And we miss him, but, you know, it's okay for you guys to be excited and still enjoying your childhood."

Wendy: Yeah, I love that. I love that you just talked openly with them about that. And I'm sure it helped them to know what to expect from you two, so they weren't wondering why you were feeling the way you were. They actually knew. That's an approach we took with our kids, even though our two kids were much older being in high school and college. You know, we have always talked about everything. And so that's one thing we found as a family to be super helpful for us as a family grieving.

Lisa: Yeah. And I think it carries on even to this day, and it's become a plus for our family because we feel like we can discuss things openly much more so than we probably did before.

Wendy: Right. Yeah. Andy, what about you and your wife? Like, how did that work when Penelope was gone, the two of you grieved separately and together?

Andy: Yeah, you know, at first, I think it was a little rocky because we didn't know how to talk about it. You know, we knew each other was grieving because you could just see it in each other's eyes, but, you know, she was with Penelope 24/7 for 23 months, and I was there every other moment that I wasn't working or taking care of something with teaching and coaching. And, you know, we had to sit there. We had to do exactly what you said, we just had to be honest with each other. And I think that we had to talk, in a way, a couple of times.

We had to force ourselves to talk, like, "What is going on with you today?" And I think the common theme is, you know, as a husband and wife, we needed to find that purpose again because we didn't have any other kids.

And we wanted them, and that was the plan for down the road, but we had to find that purpose of still being Penelope's mom and dad. And when we took that plunge together, "Okay, we're going to do this," you know, that got us back working again. And, not that we were happy all the time and all that, but I think we were better off because we were doing something together. And I think that was huge.

Wendy: Yeah, I remember something that happened pretty early on after Nick died. My kids went to a small private school, and so Nick's class had only 20 kids. And those were the same 20 kids that went all the way from kindergarten all the way up and graduated together, so they were more like siblings.

And I remember a few months after he died, it was maybe like only six weeks later, it was in October of that year, that some of the administration and teachers came to me from the school and just said, "We don't know what to do with the kids in Nick's class because everyone has gone silent." Nick was the fun, loving kid of the class, and he always livened everything up. And so, after he died, the kids, kind of, just stopped talking. And they would remember a story and start to tell a story about Nick but then would stop in mid-sentence and then just silence.

And so, they were very worried about the kids in his class, and I remember feeling like, "Well, man, what am I supposed to do about it? I'm Nick's mom, and I'm not a counselor or anything like that." And I went home that day just feeling like a little put upon that they would come to me with this issue. And I went home, and I remember that night feeling like I heard Nick's voice in my head say, "Mom, they don't need a counselor, they need you." And I was like, "Oh, boy."

The following Monday, I went down to the school and talked to the administration. And, they set up a time that I met with Nick's class, his friends, every first period of every Monday for the rest of that school year. And something that I thought I couldn't do or that I was a little upset about being asked to do was the best thing that could have happened for me and for them. When we were able to just be together, and talk together, and grieve together, and we had that space first period, every single Monday, every single week, all school year long that we could be together, and talking grief, it helped them immensely, and it helped me more than I ever, ever could have imagined.

Andy: Oh, I bet it was scary. You know, it was scary to take that first step...

Wendy: Oh, yeah.

Andy: ...to do something like that. I mean, you know, with... And Lisa, I know you can talk about living in a small community because where I live is not a thriving Metropolis at all, and everybody knew our story. So it was everywhere I turned, you know, everybody knew I was Penelope's dad, which, as amazing as that is to this day, at the very first, it was scary. Because I didn't know how to talk to people, they didn't know how to talk to me, and, you know, I know the people that are just now going through this or dealing with that same thing. You know, how do you face somebody in the community when you're two weeks out, or your three weeks out from your child dying? You know, Lisa, how was that for you in a small place?

Lisa: I found it very difficult, and I think that you have to just do what's right for you. I was not able to do it. You know, in our area, every funeral has a visitation along with it, and I knew early on I did not want to do that. I could not face so many conversations. And there's certainly nothing wrong with visitations, it just wasn't right for us. And we just really had to act on what felt good to us. We asked nobody to bring food to the house because we were just too overwhelmed and too emotional wrung out to even face those conversations every day.

And we have a wonderfully supportive community, and it is small, but I knew we just couldn't face that early on. None of us were ready for that. And, we, kind of, collapsed down with ourselves, just the four of us, and just made almost like a little cocoon just ourselves in our area. And then, eventually, we were able to branch out very slowly, but it was at our own pace. And I think it was at the pace that was right for us, and not necessarily just following tradition and what other people thought we should do, even in this small town, this small area. And that's what worked for us.

Andy: You know, I think one of the most important conversations I had was with my boss. And he just sat me down, and he said, "How do you want to handle this? Do you want to talk about it, do you not?" And, you know, I almost felt like I had some power right then because, you know, we all feel hopeless and powerless while all this is going on. And he gave me the power to say, you know, "Yes, I want to talk about it here," or, "No, I don't want to talk about it here."

And, I hope people give that opportunity to everybody because, like you said, you four being your family, that was what was best for you all. And, for me, I'm a social person. And I needed people, but I didn't need the traditional way of going about it either. So, Wendy, were you like that? I mean, are we all like that or...?

Wendy: Yeah. You know, I come from a big family of one of seven kids, and my husband is one of five. And so, just our two families being around our house, our house was just jam-packed with siblings, and their spouses, and then their kids. And so, I think, for me, I didn't notice so much the people bring in food. I mean, certainly, I saw that my kitchen was just full of food in my refrigerator, and my sister went out and had to buy us a mini-fridge for all of the excess food.

I saw all of that, but my family, kind of, ran interference for me, so I could either just be upstairs in bed, or be sitting on the couch with my kids, or whatever. Anybody came to the door, they ran interference, and so that was super helpful for me. I think, you know, listening to both of you talk about how you dealt with things, you know, helps me to see how important it is for all of us to know that there's no right or wrong way to do this. That we have to find what's right for us personally and what's right for us as a family.

And, Lisa, I love that you just were able to communicate and say, "Please don't bring any food, you know, because we just need to be together at this time, and no visitation." And, I love that you were able to say that to people. And so, you could do what was right for you. And Andy, I love that your boss even was the one to bring it up, but to have that kind of conversation with somebody, so you could choose what was right for you in that situation. I think it's so important for all of us to know that we have to decide for ourselves and our family what's right, and not let anyone dictate what we need to do in those moments of grief.

Andy: Right. I mean, because we're proof that, you know, you can make it through that. I know, you know, even the month to months after Penelope passed away, I'd never foresaw myself three years down the road being where we are now. And, us, Lisa and Wendy and I, we have three completely different ways of going about it, but we're all still here and we've made it so far.

Wendy: So far, we have. That's right.

Andy: I don't know about tomorrow, but, right. You know, and I think that there is light. It might be very, very dim at the end of that tunnel right now for a lot of those people, but, you know. And, you know, as hard as it is to talk about it still sometimes, it's so healing too. And I think a lot of people that you don't want to talk about your child passing away at the first, you don't realize how healing that can be on the back end.

Wendy: I think it's important for everyone to find your person or find your people tv  hat you can connect to who have gone through something similar so that you have that connection so that you have that ear, someone who will listen to those stories with you.

Expert Lisa Clark, psychologist and bereavement coordinator at St. Jude Children’s Research Hospital:

You have just heard three parents share stories about their early grief—the ugly grief and what they did to survive it.  Though their stories are different, their experiences of grief are normal.  Grief is a very personal experience and no two people grieve in the same way.  You may feel like you’re in a fog, or grief may hit you “full on” the day after you think you’ve finally turned a corner and are getting a handle on things, or you may wonder if you have gone crazy.  That’s all normal grief. It’s also normal not to have those experiences.  It’s normal to laugh, cry, feel angry when you’re grieving—and it’s normal not to. 

A question I get asked a lot is “How do I know if I should seek professional help?”  There is no wrong time to seek help. Grief can be extremely exhausting and unrelenting. Therapy can be helpful in learning to cope with the stressors that come with loss and with managing your distressing symptoms. However, if you are having suicidal thoughts or thoughts of hurting someone else, it’s important to seek help immediately. 

If your grief symptoms haven’t improved or have gotten worse after more than 6 months, it’s crucial to seek professional help. 

Andy, Wendy and Lisa have all lost a child to cancer.  They are still grieving but they are surviving.  As time has gone by, they have even begun thriving.  Each one had to find a way out of the constant darkness of grief.  A common thread in their stories is that each one found relief, a gradual lessening of the darkness, first through finding a distraction and then through an action that honored their child.  Wendy got a job and went Nick’s school and shared stories and grief with Nick’s friends. Lisa focused on her surviving children and began training therapy dogs, and Andy went back to work and began writing and re-committed to his marriage.

I hope that listening to this program will help you with your own grief journey, as we explore different aspects and challenges you will encounter along the way.  Please visit our website at stjude.org/bereavement for resources, common reactions to grief, frequently asked questions about grieving, and information about what to do if you are in a crisis.

Standard Closing by Justin Baker, MD:

Thank you for listening to Connecting Through Grief When a Child Dies.  Special thanks to Stanton Lanier, Copyright Music to Light the World, Inc., for allowing us to feature his music throughout this podcast series. Please share this series with friends, with family members and with anyone walking through their own grief.  To learn more about grief and resources for support, visit www.stjude.org/bereavement.