It’s Been 5 Years Since I Lost My Son to Testicular Cancer, with Joyce Lofstrom, Episode 22
Welcome to Don't Give Up on Testicular Cancer, where cancer survivors, caregivers, and others touched by cancer share their stories. The Max Mallory Foundation presents this podcast in honor and memory of Max Mallory, who died at age 22 from testicular cancer. I'm your host, Joyce Lofstrom, a young adult and adult cancer survivor, and Max's mom.
Hi, this is Joyce Lofstrom, and welcome to this edition of Don't Give Up on Testicular Cancer. This is a podcast for testicular cancer survivors, caregivers, and anyone touched by cancer. I'm your host, and I'm also the mother of Max Mallory, who died from testicular cancer when he was 22. And we are producing this podcast through our family foundation, the Max Mallory Foundation.
So, I wanted to talk today alone--I'm the only person that you'll hear on this podcast--a little bit about Max, but also more about what happens to anyone who loses a loved one from testicular cancer and looks at an anniversary. Max died five years ago, as of May 20th, 2021. He died in 2016. And I wanted to just talk a little bit about that day, but also what's happened in five years as a way to reflect on his death, but more so to talk about things, positive things that have come out of those past five years.
So, Max went through many months of treatment; he went through seven months of treatment for his testicular cancer, four cycles of chemo, RPL&D surgery, removal of a tumor in his brain, and then finally the high dose chemo and stem cell transplant that did not work for him. He also had choriocarcinoma 100% and it was advanced when we found it. And his father and I were with him every day of his journey in some way. His dad, Chuck Mallory, spent almost every night [in the hospital] with him to be with him and make sure he wasn't alone. Max stayed with his dad and his dad's partner, Jim, when he wasn't in the hospital going through the chemo regimen. And his brother was with him as well. So, I mentioned this only kind of a look at how we managed this seven-month journey.
The night he died, you know, everything seemed pretty normal--as normal as it can be when you're going through high dose chemo and stem cell, but he was on the third day of the stem cell transplant and he had gotten up to go to the bathroom in the evening, it was about eight o'clock at night, and he sat down in his bed and then all of a sudden he was gone. He couldn't breathe.
We went through this challenge of getting a doctor in there that took a while, but long story short, he had a brain bleed and that's what caused his death, which we found out early on the morning of the 20th of May, early meaning like 1 a.m.
So he's gone.
So, what do you do next? And it took us a while to figure out what to do next, getting through the shock of the whole loss of our son, a brother, a nephew to my brother, Gary, and his wife, Sharon, to Chuck's five siblings and their spouses.
It was hard. I mean, I'm not going to say that it wasn't. We started a foundation in Max's honor, and actually Chuck got that going, his dad. And we received a nice donation to set up the website. Anyway, we got the foundation going. And what do you do with a foundation? This is our family foundation, the three of us. Me, Max's dad, and Max's brother, John. And you know, over the years, these five years, we figured out what to do. Chuck got some content going. We had the whole website put together, you know, with pictures of Max and about him.
We also worked with his alma mater, the University of Wisconsin-Whitewater, to set up a scholarship for students in the Media Arts and Game Development major. So, we continue to do that and give a scholarship for two years to a junior. We also award a prize in the Media Arts and Game Development which is known as MAG-D Expo, where students design their own video games. And it's an expo where you can come and look at all the different games, play them, and then there are three prizes, and we award the first prize.
And I have mentioned this, I think, earlier in other podcasts, or at least our first one. And I think when you think of losing your son or daughter, but for us, obviously, it was a son, a family foundation like this is a really positive thing to do and a good way, an effective way, to remember someone. And I say that based on the students that we've talked to who have received the prize or the scholarship. And, you know, I remember in my college days, any kind of financial help was needed and also very much appreciated. And smaller amounts, they make a difference. They might buy your books, or they might help with the meal plan, or if you have to, you know, buy groceries, whatever you can get is part of that money that you need to get through those four years of college. So, we've had students tell us how much they appreciated it and where they're going with their degree, what they want to do. And I think that's a way to not only give back to his alma mater, but to help other students who had the same interests as Max did in video game development.
The other thing that we've done is reach out to other testicular cancer organizations that are out there and have been established much longer than our foundation, which is about, I'd say, four years old. Max's dad did that, Chuck, and he talked with the different people who have founded those organizations and over time established a rapport with them. And, you know, they know who we are now, and we know who they are.
And we tried to support each other, meaning not so much financially or at all financially, but more about what we do and how to spread the word about awareness with testicular cancer. And I think that's been very good and helpful, helpful in the way that, you know, I've promoted, I think, the Testicular Cancer Society and the resources on that page with my Michael Craycraft, who has offered a lot of really valuable information for anyone dealing with testicular cancer. And he was also on one of our podcasts.
So, there are ways to integrate and act together as we keep battling this disease. The other thing that I've been fortunate to encounter on a couple of the interviews that I've done are people who are doing research on testicular cancer. And there have been two of those podcasts, one with Mike Rovito and one with Deborah Bekele. And Deborah is a PhD student in Spain and is looking for candidates to be part of her research study on testicular cancer and prostate cancer. And so, she found some interested people through the work on the podcast that I've done. And then Mike Rovito is already doing research. He's a professor at Central Florida University, has done a lot of work on testicular cancer and really how people live once they survive. And that's just a quick summary.
I would listen to Mike's podcast if you want to learn more about what he's doing. So, you know, for me, I learned a lot about what's out there already for testicular cancer and why it's so important. And I guess the other thing, when I think about, you know, how we move ahead, one of the things that I learned, and I know Max's brother John learned as well, is you go through the rest of your life, and we've been fortunate that we've been able to move ahead. And do what we have to do, and we always will miss Max. But, you know, once we got through the initial shock and grieving, we were able to go on. I know some people have not been able to do that. But John now is the only sibling. I mean, he has no brother. He has a stepbrother. We call him a stepbrother who lives with us now, my partner's son, who's, they have each other, which is very important. John has cousins, but you know, it's a huge void when you think about that. And how do you survive that? What do you do when you lose your only brother, your only sibling?
And that was another podcast that we did in the last year. But I think, again, it's helped him [John] to think about that, and what he has to do to survive and what he has done in those five years since Max died. He's working with a hospice and has been doing that for about three years now. He's also doing some sports writing for a local website here in the Chicago area. He's a great writer and knows a lot about sports. I'm always marveled how men can [do sportswriting], mostly men, that's a stereotype. There are a lot of women, too. I don't have that deep of an interest in the minutiae of sports, but it's important to people who do. And it's fascinating to me. And he [John] is one of those people. So, he's been able to do that. And I know Max's dad has been working on writing that he really enjoys and been able to do that and kind of think about what else he can do with the foundation, which that will probably come out in a later podcast where you have some ideas.
But I guess my point is, rather than simply, well, how can I say this, focus on the past only, you have to move ahead. And we did. And I'm very proud of when I think about these things of what we've all accomplished. As for me, I retired from my job, which I would have done anyway, but I retired because of my age, quite honestly. But I also had another opportunity that I wanted to take advantage of, and I started my own PR consulting business. And so that's three years old. 2018 is when I began this business. So, you know, there's a lot that I think we've done. And that, I hope, has had some positive effects on other people who are dealing with testicular cancer and whoever might be in their family that has it or someone that they might be caregiving for. I can also say we've done 20, this will be number 22, of our podcasts that we started really in October of 2020. It's a really enlightening experience to talk to survivors, to these researchers that I mentioned. And today I'm going to talk later with a caregiver.
So, there'll be another podcast you need to listen to in the next week. But what they all did to move ahead and to deal with their disease. And almost every one of the people I've talked to, these young men, have given back in some way. And you might remember Johnny Imerman. He was one of my early guests, and he started Imerman Angels after his experience with testicular cancer in the early 2000s, because there was no one to talk, no one to share experiences with or ask questions. And the same with some of these other young men that I've talked to. They have given back, they've done, you know, check your balls events and so forth. One of the caregivers I talked with, Karen McWhirt, wrote a book after her son Ian, who died 15 years ago.
So, and that's where I want to perhaps end my discussion here, is 15 years ago, Karen, Karen's son, had a lump on his testicle and was afraid to talk about it, didn't know what to do. And he waited a long time and a year, and he finally did go to the doctor. But as we've all probably heard from other stories or podcasts, sometimes you wait too long. And Ian died, same as Max, although Max's situation was an undescended testicle. It was not visible. We were told at 12 months, 18 months after surgery, he didn't have a testicle, never had the second one, which I now know, and his dad knows is not the answer. You have to find both testicles.
And so, I guess my final message is simply, if you listen to this podcast and you're a young man or you're a caregiver or a wife or a sister, whatever relationship with someone who has testicular cancer or might think they have it, talk about it. If you have a lump, get it checked out. Don't wait.
And, if I can share one universal message from all these podcasts that I have done, that's the universal message. Don't wait. Talk about it. Call the doctor yourself if you don't want to talk to your mom or your spouse or girlfriend. Go talk about it and find out what it is. Because if you wait, that's the danger. And I think, to me, that's the shocking thing with all of this, that people are still waiting and dying.
So now, that's not a really uplifting way to end the podcast, but the positive side of that message is you can do something about it. And many, many cases, most of them are cured with early detection of testicular cancer. And so that's why I'm saying don't wait, because there are very positive alternatives for you out there to take care of it. So anyway, that's really all I wanted to share on this anniversary of Max's death, which is basically to point out that good does come out of very sad situations.
I hope you enjoy the podcast. Listen to some of the other ones if you haven't. And thank you so much. And you can find our website, the Max Mallory Foundation at www.maxmalloryfoundation.com. And Mallory is M-A-L-L-O-R-Y. So, thank you so much.
Thank you for joining me today on Don't Give Up on Testicular Cancer from the Max Mallory Foundation. Go to maxmalloryfoundation.com to learn more about testicular cancer, to donate and send your suggestions for guests on the podcast. And join me next time for Don't Give Up on Testicular Cancer.
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