Chad Perlyn, MD (Host): Welcome to the For Peds Sake Podcast, a Nicklaus Children's Hospital podcast that is all about putting children at the heart of healthcare. I'm your host, Dr. Chad Perlyn, plastic surgeon here at Nicklaus Children's, and I am so excited to welcome you to our very first episode.
Today, we have two very special guests to discuss childhood cancer, and we're joined by one of our patients, an incredible young advocate, Michael Cramer, along with his mom, Ashlee Cramer. These two have not only faced childhood cancer, but have dedicated themselves to raising awareness about pediatric cancer.
Michael, Ashley, thank you both for being here today.
Michael Kramer: Thank you so much for having us today.
Host: Oh, it's great to have you.
Ashlee Kramer: We are so honored and we're on the very first For Ped's Sake. We're so honored. Thank you, Dr. Perlyn.
Host: We could not think of a better guest. We know you have an incredible story and you've had an incredible journey here at Nicklaus Children's. Tell us about it. Tell us about what you've been through and your experiences. And we'd love to hear about your work and advocacy, of course.
Ashlee Kramer: Thank you.
Michael Kramer: Yes, thank you. So, when I was diagnosed with cancer, I was 19 years old. I came to Nicklaus Children's Hospital with my mom because a few months prior to this, I started to feel really tired. It was the COVID lockdown. It was around March of 2020 when I was starting to feel this exhaustion. And in June, actually, it was when we came to Nicklaus. I did some blood work. I met with Dr. De Angulo. He did some blood work and he asked us to actually spend the night in the hospital because my labs were kind of funky. And at that point, I still wasn't really thinking much. I wasn't thinking cancer at all because I was young, I was an athlete at the time, I was a student in college. And before all this, I was a windsurfer on the Olympic Development Team. So for me, this was just like, "Okay, I'm tired for a few months. I'm not doing the things I love because of COVID," and it just felt like I was maybe anemic is what we initially thought.
Host: if I remember right, you thought maybe this was due to stress from COVID or COVID lockdown.
Michael Kramer: Yeah. Exactly.
Ashlee Kramer: Of course. The beaches were closed, so his joyful place was the ocean, surfing, windsurfing, and the beaches in Miami were closed. And there was actually a weekend that he and his brother drove up north because the beaches had opened up north. They went surfing for the weekend. He came back a little bit energized and I was like, "Well, maybe he is better. But then a couple of weeks later, I'm sure Michael's--
Michael Kramer: Yeah. I hit that same crash.
Ashlee Kramer: And then, it was fevers and night sweats as well.
Michael Kramer: So when we came to Nicklaus, it happened so fast. The next day, I was actually diagnosed with cancer. I did the bone marrow biopsy the next day and I remember the doctor, Dr. De Angulo, he walked into the room after my bone marrow biopsy. I was waking up from the anesthesia, super groggy, and he comes in and tells me that I have cancer.
Ashlee Kramer: But wait, I have to interrupt you because this is the thing about Dr. De Angulo, and this has been our experience with Nicklaus. I'm not plugging Nicklaus, but oh my gosh, our experience was he walked in the room, he had been so kind. And at that time, well, still in oncology, everyone is wearing masks, but you could see like when we were talking to him before, he had this like twinkle in his eyes. And when he walked in after the biopsy, you could just see his eyes that there was something. And he sat down and the first thing he said was, "What you have is treatable." And he ended up spending, I want to say, over an hour talking to us. He didn't even know Michael's exact diagnosis, but he got to know Michael. He found out that he was a surfer, that he loved the ocean. So, he had talked about putting in a PICC line. He's like, "No, no, no, I'm not going to put a PICC line. I'm going to put a port, so that Michael can go in the ocean." He spent so much time making us--
Host: That's amazing.
Ashlee Kramer: It was amazing. I was shocked because my husband went through cancer four years prior to this in an adult hospital and we had such a different experience. And right away, I could tell that he was looking at Michael as a human being and as a whole person.
Host: I loved hearing that because that's what a children's hospital is all about, not just taking care of the disease but taking care of the whole person, the whole child and their family. Michael or Ashlee, tell us, the words that all parents and all of us certainly dread hearing, "You have cancer," what was that like and how did you cope with that when you first heard that? Maybe there's other families listening now, going through the same thing, waiting for a diagnosis. How did you cope with that early on, either of you?
Michael Kramer: It was extremely difficult. Those first few weeks before finding out my official diagnosis, it was a lot of sitting around, a lot of waiting, a lot of blood tests. We were still coming into the hospital. So, it took three weeks to diagnose me with hepatosplenic T cell lymphoma. And on July 14th, when I came in and I had that bone marrow biopsy, I spent a week in the hospital, and we went home with no official diagnosis, but Dr. D, he started me on steroids right away because it was going to be a treatment no matter what. And like my mom and I say, that saved my life.
Ashlee Kramer: That saved his life, by starting him on something, just knowing that a blood cancer, it would be part of any protocol. So, he started him on steroids.
Host: Yeah. And to all the people who are dealing with the stress of having a new diagnosis or upon waiting for your diagnosis, you're going to get that diagnosis, and you just have to know that there is amazing, amazing doctors. Especially if you're at Nicklaus Children's Hospital, the team is very communicative, which is really helpful. So, just stay on top of that, message your doctor and It's going to be okay if you're with the right people because you're here at Nicklaus.
Ashlee Kramer: Yeah, I mean, that is one thing that we did spend a week in the hospital knowing that he had either leukemia or lymphoma. But immediately, within the 24 hours of him being admitted to the hospital, we had social workers, we met the nurse practitioner, we had the nurse navigator, we had everyone. I had a stack of cards, but it wasn't even just like I had a stack of cards. It was like I had a stack of people, all these people that came in, that sat down, that talked to us. It was amazing I couldn't believe the energy and how much love and support we had and I love that there are residents and it would be really cute because Dr. D would walk in with like all these residents and he would talk to us and all the residents were so interested and curious. It felt like immediately we did have a family. It is a challenging diagnosis when you hear your kid has cancer. It's scary and it's overwhelming because you're given so much information.
One piece of advice I would give is you're going to get so much information, but try not to cut yourself off. Try to open yourself up. And yeah, I just feel like also Michael did a really good job of communicating. Of course, we're blessed. He was 19. I know some people have younger children. But I think me too, immediately we talked to the nurses, we talked to the doctors, and we got to know them. And it became very--
Michael Kramer: And I had a therapist right away. That was one of the beneficial things, was a child-life specialist actually came into my room.
Host: A therapist to help you emotionally?
Michael Kramer: Yes.
Ashlee Kramer: Yes.
Host: Wonderful. Wonderful.
Michael Kramer: Yes. Very, very wonderful.
Host: I think that is one of the most important things, especially during this time of stress around the world as was with COVID and everything else going on, to have to deal with this as a teenager. We've spent so much time talking about mental health issues in teenagers, and we're going to do more of that on the podcast. But that, on top of your diagnosis, the stress is unpalatable.
Tell us, Michael, as you talk about your story and your diagnosis. I know from reading about you. There's been a lot about you in the media and your work in advocacy. You didn't just have a diagnosis of cancer, you had a tough cancer and were given initially the thought base, at least statistically, only a few months perhaps to live. I know Dr. D'Angulo came in with flying colors and I love that his opening words were, "This is treatable," which is so important. But you had a tough battle in front of you. Share with us some of that. What was that like? And what were the things you went through? And then, I want you to sort of take us through how that empowered you. I see your mom's shirt strong about becoming an advocate.
Michael Kramer: Yeah. So when I was diagnosed with cancer, I realized there was nothing I could do to change the fact that I had cancer and I just had to listen to my doctors and do the protocol that they thought was best for me, because I truly trusted and believed in my doctors and my team. So, they told me, Dr. D told me I had to go through two to six rounds of chemotherapy and then a bone marrow transplant. And for me, it was like, "Okay, whatever cancer I have, it's not going to change what I'm going to have to go through, so I'm still going to have to go through this. And I can go and get a second opinion, but everywhere else that we looked, honestly, they would probably do the same thing." So, we trusted our instincts, went with this doctor who was super nice in this amazing hospital. And I went through three really difficult rounds of chemotherapy and then I had my bone marrow transplant October 27th of 2020, which is three years now. So, it's been a long--
Ashlee Kramer: From my recording, it's--
Host: Three years, right.
Ashlee Kramer: Exactly.
Host: Happy anniversary, my friend.
Michael Kramer: Yeah. It was really hard, the bone marrow transplant. I was prepped with total body radiation, lung blasts, and some of the most intense chemotherapy just to destroy my old immune system and give room for that new immune system to come in from an unrelated donor in Germany. My mom and I, we spent six weeks in the hospital for that procedure for my bone marrow transplant. It was tough. I had a PCA pump for morphine. I vomited countless times. I popped blood vessels in my eyes. I literally had a patch on my eye because I couldn't see out of my left eye. And I had so many hallucinations, and I was almost about to pass away because of engraftment syndrome. My heart and lungs swelled up just so much during those six weeks. And physically, it was the hardest six weeks. But after I was discharged from the hospital from the bone marrow transplant, we were right back in the hospital. I developed graft-versus-host disease. Basically, the donor stem cells were just attacking my organs, rejecting my body, fighting it off because it's foreign, right?
And the next two years we were just in and out of Nicklaus. I mean we spent five straight months admitted to Nicklaus at one point. In 2021 to 2022, we were there a lot. We spent Thanksgiving there. We spent Halloween there. We spent Christmas...
Ashlee Kramer: We've been there for every holiday.
Michael Kramer: New Year's. So, we've been there for every holiday except for July 4th.
Host: But look at you now, right? Look at you now after that incredible journey, to be able to be here celebrating at home, celebrating your three-year anniversary. I hope you're going out this Halloween and not spending it in the hospital or maybe coming to the ward and helping trick or treat with the kids who are here.
Tell us about your advocacy work. This is something that we are all so impressed with both you and your mom, your whole family. Really fighting for others, going through the same thing. We'd love to hear about this.
Ashlee Kramer: I think this started though, going back to when we were admitted to the bone marrow transplant unit. They were like, "Ashlee, you can decorate his room any way you like, you can do what you want." So, I bought lights. And I put up posters of pictures of the family. And the other thing I did was I put some posters of motivational signs. And one of them, "It's not what happens to you, it's how you react that matters." And I think that became a very big mantra for us. And another one of the posters was, "The best way to help yourself is to help others." And I think Michael took that to heart. And for me, I was a teacher before, so I've always been in service. But when Michael started getting all the complications and we realized, "Okay, we're not going back to the life we had before, at least not right now." There was a moment when we started posting on just like Instagram and TikTok and we started sharing the story and then people were reacting. They were giving us so much love and the feedback was so positive. So, we wanted to dig a little bit deeper. So, that's when we started our podcast, Michael and Mom Talk Cancer. And it's really happened organically. I think we didn't plan anything out. But little by little, we've been asked to speak at places. And the more we do it and the more we give, the more we feel we get in return. It's one of those reciprocal feelings and it's been really important on this journey.
He was given a diagnosis of a cancer that's very rare. And Actually, when Dr. De Angulo told us what Michael had, he actually said, "Don't Google it." And we didn't. And we didn't really know about his eight-month prognosis until much later, but I think that we knew it was going to be tough. We didn't know it was going to take this long. But initially, it was just, you know what, if we can help someone else going through something tough like this. And now graft-versus-host disease is also a big adventure in our lives. We're still in the hospital a lot. And so, I think that We want to help people that are going through this. I see caregivers struggling. I talk to them in the hospital. Michael sees other patients that are struggling that need connection and we're like, We're here, we've been through it..." Literally today at Nicklaus--
Michael Kramer: Today we're at Nicklaus, and I was talking to another patient who had a bone marrow transplant as well. And it's tough, but it's always moving to talk to other people who have been through something similar. And that's why we do what we do. That's why we lead support groups. That's why we speak. That's why we do social media, just because we know we got so much help and so much support. And not everyone that I know and I've met online that's had a hospital like Nicklaus. I've heard horror stories from people who literally had the worst experience of their life in the hospital and hated it. And I'm talking to them and I'm like, "We love our hospital."
Ashlee Kramer: We love our hospital. We like to go.
Michael Kramer: Everything we do is to help others because we've just been so blessed. We've had a tough thing going through all this cancer, but it was the best case scenario for the worst case scenario.
Ashlee Kramer: Oh, we've had our nurses... Yes, literally. Our nurses, our doctors, they are family. They are family forever. It has been incredible. And for us giving back in any way, even if it's not directly to those nurses and doctors, it's just giving back to the university. It's been really, really important for us. We have received so much love, so much support.
Host: And it's clear how much you both have to give back, and it's really wonderful. And it's so kind of you also to think about the caregivers. Because the caregivers, the nurses, the physicians, the staff, the techs, they pour so much of their heart and soul into caring for kids. So, we appreciate you thinking of us. Obviously, we're here for the kids first, of course. But we can see your passion for advocacy and supporting all in the cancer world, patients and caregivers. And that's really wonderful.
What, Michael, would you say if there was a child out there, maybe a young teenager listening today going through something similar? Would there be word of advice you would want to pass on?
Michael Kramer: It's going to be...
Ashlee Kramer: So many words.
Michael Kramer: There's so many words, and we always say that it's easy to sometimes be like a victim of your situation. And when you're diagnosed with cancer, sometimes you feel like you're the victim and then your world is collapsing. But my advice is just don't be a victim. Adapt to your situation. And I promise you can overcome this. It's not going to be easy. And I'm just letting you know that now, it's going to be really difficult. But if you have the right support, the right mindset, and the right people around you, you can get through it.
Host: And Ashlee, what would you say to a family, a mom, a dad who are in the same situation that you were three years ago?
Ashlee Kramer: Yeah, I think that we have found, and this is going to sound a little corny, but love has really been incredible for us. Love and connection and accepting that people do want to help you. So, accepting some of that love and also giving it back and knowing that you're never going to go back to who you were before. And that is part of the gift of this. I think that you become more when you go through something like this. You are deeper, you are wider, you are stronger than you think. And when you go through something like cancer, you come out on the other side like with so much more to offer to the world.
And I think also I will say take a shower. Take a shower. It feels good. And don't lose your connections. I mean, I said it before, but I think isolation and cancer is one of the hard parts. And a lot of people do isolate themselves, not only survivors, patients, but also caregivers do a lot of isolating. And I think reaching out is really important. Connecting if it's one person, if it's a community, if it's a support group, if it's a friend, whatever it is, but definitely reach out.
Michael Kramer: Yeah. Reach out to us.
Ashlee Kramer: Reach out to us. We're always there.
Michael Kramer: I lead a support group.
Ashlee Kramer: We both do.
Michael Kramer: We're always open to answer anyone's message, so we're always here for anyone listening.
Host: I'm sitting, listening to you both, not just as a physician, but as a parent, I have a teenage son and a middle schooler. And Ashlee, you must be so proud of Michael, not only for the courage and bravery that he went through physically and emotionally, but the young man he is today and the advocate he's become. And Michael, I really hope that you continue that passion and continue to serve others whether it's those with cancers or struggling with any type of issue in life. You seem to have found the joy in helping others, and it's really wonderful. You must be so proud, Ashlee.
Ashlee Kramer: I'm so proud. I feel like he's also a teacher for me.
Michael Kramer: We teach each other.
Ashlee Kramer: We teach each other a lot. We've been through a lot. I'm very blessed to have him. And he has two pretty cool siblings, too. They were pretty amazing going through this because I am a single mom, I'm a widow, and his siblings were pretty incredible as well going through this. Still going through it, yeah.
Host: Well, it has been such an honor having you on the show today, on the podcast and on our first podcast. I always tell my patients, I hope I only see you again in Publix. Publix, if you're listening, is our local shopping, our local food store, right? I know you still have some visits left to the hospital, but we all look forward to that day where we just get to say hi to you outside of this place, at least as a patient. But we're never going to let you go as the advocate and champion for children that you are. We do know that you have your own podcast, as you mentioned. We're going to put that in the show notes so that parents or kids going through this can find you and we'll put your contact information as well. And it has really been wonderful having you. Before you go, any last words you want to pass on?
Michael Kramer: Keep going. If not for yourself, do it for the ones around you because you are loved.
Ashlee Kramer: Yes. And you are definitely not alone. You have people you can reach out to. You can always find people to reach out to. You're not alone. And I'm also just going to, and I have to say this, that Nicklaus Children's Hospital-- This is not a plug for your podcast-- we feel so blessed that we are part of your family. We would do anything for you. You have saved his life multiple times; hence, saving this lady's life as well. So, thank you so much. We are honored to be on your first podcast.
Michael Kramer: Yes.
Ashlee Kramer: Yes!
Michael Kramer: We feel so honored. Thank you.
Host: There's no better guest we would want to have. As we go through the podcast, we're going to start to do a lot of practical tips for families, information for daily use. But we really wanted to have a very special guest on for this first podcast. So, people listening could feel the love, feel the special relationship that we have at Nicklaus Children's with our patients. And we all said for sure, there is nobody we'd rather than the Cramers. So thank you again. We hope to see you soon outside of the hospital, and good luck to you both.
Ashlee Kramer: Thank you so much, Dr. Perlyn.
Michael Kramer: Thank you.
Host: This concludes this special episode of the For Peds Sake podcast. We hope you've been inspired by Michael's story as much as we have. If you'd like to support patients like Michael, Nicklaus Children's Hospital has a donation page set up to help support pediatric cancer research and world class care. And we'll show this link in the notes if you'd like to donate. Together, let's make a difference in the lives of children and families affected by pediatric cancer. Make sure to stay tuned for our next episode. And in the meantime, be sure to follow us all on social media channels. You can find Nicklaus Children's Hospital on Instagram, Facebook, TikTok and YouTube. See you next time!