Hepatosplenic T-cell Lymphoma: Michael and Ashlee's story (video)

Summary: Michael and Ashlee Cramer, a dynamic son and mother duo, have taken on transplant and graft-versus-host disease and are fighting the good fight.

Transplant: 2020

The Diagnosis that Changed Everything: “I really thought that the transplant was it….and it was a very, very difficult procedure.”

(00:25) Michael Cramer: When I was 19, it was the COVID lockdown here in Miami, and I was home from college. The beaches were closed, schools were closed, and gyms were closed. I remember an immense feeling of fatigue and tiredness.

(00:39) At the time, I was very athletic, very healthy, and I was always in the gym, and always doing lots of stuff during the day. It was very hard for me to wake up early in the morning, get my workout in, and  do the things I would do every day. I was just so tired.

(00:54) My mom and I thought that maybe I had COVID or something. I thought I was maybe anemic because we Googled my symptoms, which kind of lined up with anemia.

(01:05) I started to develop some night sweats and then eventually some fevers, which led us to go to the doctor to do some blood work. Eventually, we went to Nicklaus Children's Hospital for more blood work and a biopsy. There, I was told I had either lymphoma or leukemia, and three weeks later, I was diagnosed with hepatosplenic T-cell lymphoma. The doctors told me I needed to go through two to six rounds of chemotherapy to get me into the deepest remission possible. And then I would need a bone marrow transplant from a donor.

(01:42) So I was like, "Okay, if I can get into remission from cancer after just a few months of chemo, after the transplant, I should be done. I can go back to surfing, go back to living my normal life. I'll go back to college and do everything I was doing before." I really thought that the transplant was it, I was going to be fine.

(02:00) I was admitted to the hospital for over six weeks for the transplant. It was a very, very difficult procedure. After the bone marrow transplant, I developed graft-versus-host disease (GVHD). My mom and I have spent the last four years in and out of the hospital, dealing with life-threatening complications from graft-versus-host disease. My initial graft-versus-host disease became chronic graft-versus-host disease, which is what I live with today. It has affected my mouth, skin, liver, and GI tract.

(02:28) Everything I've been through was so difficult. I was really, really struggling. When I was admitted to the hospital, I went through a lot of stuff. It was not an easy time.

(02:39) I learned that the best thing you can do when you go through something so hard is to offer your perspective to other people. I've been able to reach out to so many people who have been through cancer or are going through cancer and offer them words of encouragement or support and tell them that, "Hey, this might be the hardest thing you're ever going to go through, but it can still be a good experience."

(03:02) What I've been through has taught me so much, and it's given me this beautiful perspective on life. It made me appreciate how good the quality of life was that I had before cancer. And although I don't live the same life now, I look back and say, "I was so blessed growing up. Such amazing parents, such an amazing family, such amazing friends, such a great life. We traveled the world, windsurfing and doing competitions. I had a great experience. Now life is different, but it's still beautiful in so many ways. There are many amazing things that I can still do.”

Choosing How to Move Forward: “We didn’t have the choice about getting cancer. But what we can control now is how we move forward.”

(03:41) Ashlee Cramer: There's always the good and the bad, and it's where you put your attention. You have that choice. We didn't have a choice about getting cancer. He was healthy, he ate the right foods, we did the right things, and he still got cancer. It was out of our control.

(03:56) But what we can control now is how we react, how we move forward. Is there beauty in this? There really is. A lot of it has been the connection with other people and the perspective on life. It's like living on borrowed time in a good way because you're like, "Gosh, that means today really is a gift. The fact that we're alive, the fact that we're here, the fact that we're together, it really is a gift."

A Promise to My Father:  “I knew I had to do this for him and for my family.”

(04:24) Michael Cramer: Losing my father at a young age was a very difficult thing for me to go through. When he was diagnosed with cancer, honestly, we thought he was going to survive. But then, when he relapsed and passed away, to me, it was very sudden. I was 14 years old. I didn't understand exactly what was going on at the time. But I remember my mom telling me that he was going to pass away, and then he was put into hospice. And it was very quick. It was very tough to see him because he got really, really skinny, and he looked really, really sick. It was hard to watch him go through that.

(05:02) That shifted my perspective when I was diagnosed with cancer. I felt that I had no control over whether I would survive or not. But I knew that I had to do the treatment for him and for my family and do everything I could to survive. My father passed away from lymphoma. He had a different form of lymphoma than I had. I was destined to get through it and come out on the other side, to do this for my dad in a way.

(05:36) Ashlee Cramer: Everything we went through with my husband... We were always a close family, but it brought the three kids and me rock-solid close. My kids were 16, 14, and 12 when he died. We were already close-knit, and then, when Michael was diagnosed, we got even closer. So, I think that was another preparation, just how close we became.

Listening to Your Body, Leaning on Your Team: “If I didn’t say anything, I could have passed away because it was really severe.”

(06:02) Michael Cramer: Taking care of yourself with GVHD is definitely not easy. Symptoms can arise at any time. It's important, especially when you have chronic GVHD, to reach out to your doctor if you feel a new symptom. My doctor, thankfully, has been absolutely amazing. Whenever we email him, he'll answer within a few hours. He's an amazing doctor.

(06:26) It's really important to have a good connection with your team because, as patients, there are a lot of things that we don't know about GVHD. My GI GVHD, at first, was a small amount of diarrhea, and then it became really, really bad. And if I didn't say anything, I could have passed away because it was really severe. So, it's really important to just tell your doctor how you're feeling and what's going on.

(06:51) It's not easy to be vulnerable with your doctor because doctors can sometimes be intimidating at first, especially if it's a new doctor. But it's important to understand that that's why the doctor is there. And they're also a human, too. They’re human.

Adapting and Finding New Passions: “You have to just adapt and find new ways of doing things that you used to do before.”

(07:08) Before my diagnosis, I was a windsurfer on the Olympic Development team, so we did Olympic development clinics all the time here in Miami. We traveled the world doing that. It was a really great time. That was in my high school years. We went to places like Italy, France, Peru, Latvia, and Poland.

(07:26) Physical activity has meant so much to me because I grew up on the water, and I grew up in the gym. I grew up just being active. When I was diagnosed with cancer, one thing I wanted to do was stay as active as I could. Whenever I was admitted to the hospital, I would bring our three- or five-pound weights and curl them, do whatever exercises I could, and go for walks around the hospital.

(07:53) When you're going through something like cancer, there's so much fatigue around it. And after cancer, especially with GVHD, you're left with a body that's been through so much. Rehabbing that body can be extremely difficult. But I think the best way to get back to a good mental state and a good physical state is by doing exercise, because it will really make a lot of your symptoms feel much better.

(08:17) I have necrosis in my elbows and my knees, and it's hard to do the things I used to do. I can't get much sun. So, I'm limited in the physical activities I can do and when I can do them. But it's life. You just have to adapt to your situation.

(08:33) Often, we want to feel sorry for ourselves. But when you have something like graft-versus-host disease and you want to be happy, you want to live a good life, you're just going to have to adapt and find new ways of doing things that you used to do before. It's not easy, but it's important to start somewhere.

(08:51) I started playing the guitar. That's been a huge thing for me, playing electric guitar. It's been super fun because when I have weeks of treatment, it's hard for me to go outside, go to the beach, or do any physical activity at all. So, it's really important that I have stuff that I can do at home or in the hospital. And that's been an electric guitar and Lego. That's my favorite thing. I love both so much.

(09:17) I've always loved Lego, but I dove back into it when I was diagnosed. We had some old Lego sets in our closet that we're going to give to some family members. I ended up taking them out of the closet and building them during my bone marrow transplant. It became an addiction.

(09:32) "Hello and welcome to an extremely special episode of Michael and Mom Talk Cancer." Social media has been a great outlet. I've been able to connect with so many other cancer survivors, so many other cancer patients, and people with graft-versus-host disease, as well.

We’ve Got This: “This is difficult, but we’ve got this.

(09:50) Ashlee Cramer: And I think that my biggest message is bounce forward.

(09:53) Michael Cramer: Yeah, it's not easy to go through something like graft-versus-host disease at my age. Going through cancer at this age is difficult. When you're my age, most people are just starting to live their lives. Most people with GVHD are either on disability or unable to work. It's a really difficult time because this is when people my age are really become independent. This is when people move to a city, get a job, and start doing things at this age that are harder for me to do. It's not the same.

(10:27) But my message is this: It's difficult, but we've got this.