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Young Love & Myelofibrosis

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Published on September 2, 2021

Staying Together Through Treatment and Care

Mia Lefkowitz and her husband Chris Donnelly speak about their love for each other as a young married couple and how they are coping with Mia’s MPN treatment journey, including an allogeneic transplant for myelofibrosis.

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Transcript | Young Love & Myelofibrosis

Andrew Schorr: Hello and welcome to Patient Power. I'm Andrew Schorr in California. Joining me from the city of Boston is a lovely couple Mia Lefkowitz and her husband, Chris Donnelly. And Mia and Chris have had quite a journey, because Mia has recently had a allogeneic transplant for myelofibrosis. And so, we're going to talk about how this happened, you're going from a single woman to a married woman, and then becoming a parent, and the relationship of Chris and Mia. So, first of all, Mia, I have to ask right away, you're just weeks after having this transplant, and having been in the hospital for a month. How are you doing?

Mia Lefkowitz: I look pretty good. Some days I'm more tired than others, today I woke up with a lot of energy, but yesterday I was pretty tired.

Andrew Schorr: How old are you?

Mia Lefkowitz: I'm 38.

Andrew Schorr: Okay. Well, we should mention that both you and Chris are schoolteachers, and your love affair started when you had rooms at the school next to each other, friendship forming an outdoor club together, and taking kids on hikes and all that, and then a love affair. So, Chris, you've known Mia for... How many years now have you known each other, and how long have you been married?

Chris Donnelly: Going on six years, we've known each other, and we've been married for a little over three.

Andrew Schorr: Okay. But Mia, you were diagnosed with polycythemia vera back in 2013 as a single woman who ran, who hiked, who swam, and then you meet Chris. Did you tell him that you had this fairly serious chronic condition?

How Did You Tell Your Partner You Had an MPN?

Mia Lefkowitz: Yes. I told him pretty quickly, and honestly, because it was being managed so well, somehow in my mind it didn't feel as serious. He recognized right away that it was very serious, but I was sort of la-di-da about it.

Andrew Schorr: And with your high red count, this meant phlebotomies drawing off the red cells, and either weekly or later monthly or... So, Chris, you became aware of this. Somebody might say, "Well, I don't know, there are other women. Why would I want to be in a relationship with somebody who's got this cancer?" Quite frankly.

Chris Donnelly: Well, I was so smitten right after I met Mia that it didn't really... When she told me, I was like, "Okay, so whatever," it was just kind of like-

Mia Lefkowitz: We just figured we'll deal with it.

Chris Donnelly: Yeah. You know, I wrote her a note and I was just like, "When we have to manage it, we will, because I just care about you."

Andrew Schorr: Now, your diagnosis came after a while, you were having some vision problems and fatigue and headaches, not unusual, these weird symptoms for people with a high red count in PV. It must've been quite a shock as a young woman to be diagnosed with this thing you never heard of.

Mia Lefkowitz: Yeah, it was scary and shocking. I've always been very healthy and active, and it just seemed like it wouldn't happen to me. I guess it always feels like it won't happen to you until it does. And then after a while you adjust, and you get used to it, and it's a part of your life.

Andrew Schorr: Okay. So that was teaching still, and doing all your activities, but having this blood drawn off, phlebotomy, your relationship with Chris, and eventually getting married. But then you decided to have a child too. You have now Eva, three years old. Did you hesitate to have a child, and was anything about the pregnancy any different?

Mia Lefkowitz: I did not hesitate. I always wanted a child, and the pregnancy was considered high risk, A) because of my age and B) because of the P vera-

Andrew Schorr: With no blood clots?

Mia Lefkowitz: Correct. So, I was monitored closely, I think I was going in there once a week in the third trimester for her to be monitored.

Andrew Schorr: But the good news is Eva was born, the pregnancy went fine, and you have a lovely three-year-old. Okay. So, let's talk about what accelerated. So, as we're recording this in July of 2021, just a few months ago in March, things changed from the polycythemia vera. What changed?

When Did You Know Your Polycythemia Vera Had Progressed to Myelofibrosis?

Mia Lefkowitz: Well, I had a bone marrow biopsy in March of 2021, or I guess it was February of 2021, that came back showing I had high-grade fibrosis, so it was 2, 3, and that I had a number of additional mutations that I hadn't had a few years ago.

Andrew Schorr: So your disease was on the march?

Mia Lefkowitz: Correct.

Andrew Schorr: Okay, so I know you got a second opinion and a third opinion, where did it come down that led to you having a transplant? That's a big deal.

How Did You Decide to Have an Allogeneic Transplant?

Mia Lefkowitz: The doctors showed me a lot of data that showed the earlier I have a transplant, the better the chance of positive outcome. Before I got sick, before I developed additional mutations. And since I'm relatively young for this disease, the disease will have a lot of time to progress, and so they felt that waiting was just going to mean a transplant down the line, and that would be riskier. So, I decided to stack my risk upfront and just go for it.

Andrew Schorr: And Chris, you two were together in this?

Mia Lefkowitz: Yeah.

Chris Donnelly: Yeah. It was a very difficult decision for both of us. On one hand there was... In looking at Mia, it was hard to... Yes, she was more tired and had to take more naps, but overall, her quality of life was still great. You know, we were having a lot of fun as a family, and it was hard to put that risk upfront, but once we saw the data... I think it all came down to the data. The decision that we made was very data-driven, and the doctors at Dana-Farber did a wonderful job at laying that out for us.

Andrew Schorr: Okay, and just to recap that, the data showed that you were developing additional mutations. You were a younger, reasonably healthy woman, and that otherwise the treatments would ultimately not be as effective, and you might need a transplant down the road, but you were in a better position to withstand it now.

Mia Lefkowitz: Correct.

Chris Donnelly: Yes.

Andrew Schorr: Okay. So here we are just a few weeks out, what would you say to someone about the transplant experience, particularly somebody younger? Everybody's situation is going to be different, but how hard has this been?

What Was Your Transplant Experience Like?

Mia Lefkowitz: My hardest part was days 13 to 17 of the transplant for me, where I'd gotten really bad mouth and throat sores. But, aside from that, it's really a mental game of just "all of these things are happening to you in the hospital, and you just have to focus and go through it" and it feels like we're just plucked out of your life and thrown into this bizarre world where the weather doesn't exist, time doesn't exist, you're just going through this experience. So, the mental game is hard, but for the most part, the transplant felt very doable. And on the hardest days I was on a lot of meds, so I don't remember them very well.

Andrew Schorr: So Mia now you're home, you had lost your hair, it'll grow back maybe differently. I understand that you had before... If you had straight hair, sometimes you can have curly hair, but how do you, and I want to ask Chris as well, how do you feel about the future?

Mia Lefkowitz: I am both very excited and very nervous. I have a lot of fears of it coming back, of maybe getting graft-versus-host, of getting an infection along the way, having to go back for something. But then I think about the fact that I could be cured, and I could have my whole life, and it's awesome.

Andrew Schorr: There's a donor somewhere who donated their immune system to become yours. I don't know if your blood type changes. I know that can happen. You get the blood type, the donor-

Mia Lefkowitz: We actually have the same blood type, so that was-

Andrew Schorr: And it was the perfect match, I understand?

Mia Lefkowitz: Perfect match, and yeah. Somebody out there saved my life.

Andrew Schorr: Chris, how do you view the future together?

Chris Donnelly: Oh, I'm just so excited. Just so excited. I understand that Mia has all these worries and fears, and for me, since we've gone through this experience together, I'm only hopeful. I don't really worry about anything, just because mostly it's day by day, every day. Some days she's feeling better, some days she's more tired, but overall, I just see this trajectory of health and wellness and our future. It's wonderful.

Andrew Schorr: Well, I love the picture of the love story of you having classrooms next door to each other, and Chris, you are checking this lady out, and how you two have been together. And so, our wishes for you of course, are for a long, healthy life for both of you, and just let the love story continue. Mia Lefkowitz, Chris Donnelly, thank you so much for being with us, and we wish you all the best.

Mia Lefkowitz: Thank you.

Chris Donnelly: Thank you.

Andrew Schorr: I'm Andrew Schorr. Remember, knowledge can be the best medicine of all.

Update From Mia Since Our Interview: “I am on day +86 and feeling well! So far no GvHD and I seem to have a lot of my energy back.”