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Parenting a Young Child During Mom’s Stem Cell Transplant

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Published on September 2, 2021

Our Allogeneic Stem Cell Transplant Story

In this segment, Mia Lefkowitz and her husband Chris Donnelly explain how they educated their three-year-old daughter about Mom’s allogeneic stem cell transplant so she would feel secure and loved. Their story is heartwarming and helpful for other families coping with MPN treatment.

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Transcript | Parenting a Young Child During Mom’s Stem Cell Transplant

Andrew Schorr:
Hello and welcome to Patient Power. I'm Andrew Schorr in California. Joining us from Boston is Mia Lefkowitz and her husband Chris Donnelly, schoolteachers who had something get in the way, and that is Mia's diagnosis of an MPN, polycythemia vera. High red count, she had blood draws, first weekly and then monthly every 3 months. Hives on her body at one point, lots of stuff she went through. But they went ahead with their love affair, their marriage, and eventually having a child, Eva, who's now 3. And as you can see Mia's there, she lost her hair, she recently had a stem cell transplant, an allogeneic transplant, an outside donor. It's a big deal. First of all, thank you for being with us. I have to start right away is, how's mom feeling, Mia? How are you feeling?

Mia Lefkowitz:
I feel good. I feel mostly good. Tired, but so happy to be home.

Andrew Schorr:
Okay. You've got the 3-year-old, so the whole story of how you were both parents during, probably, the most stressful time in your life, a month in the hospital for you, lots of tests, losing your hair, having limited visitors, et cetera. So, Chris, maybe you could talk a little bit about that. How have you handled Eva in a positive way, both preparing for it and during?

What Were Your Parenting Strategies During the Allogeneic Stem Cell Transplant?

Chris Donnelly:
Sure. It was a lot of responsibility managing the house and managing Eva and trying to give Mia all my love and also managing communications with both our families. The way I viewed it was kind of like, you're just trying to juggle all these balls and some of the balls are plastic and some of them are glass, and you got to decide which balls are plastic and which balls are glass, because you're going to drop some of them. Some of them, you can just pick up later, and some of them, you need to make sure that you keep juggling. So just trying to kind of understand which balls were glass, what I really needed to do to make sure that I was taking care of Eva and she had all the love and care that she needed. And what I was doing to make sure that Mia was comfortable at the hospital, as comfortable as you can be in the hospital. Just trying to manage all those feelings and responsibilities, that was the most difficult part. Just deciding to, A) the two most important things are Eva and Mia.

Mia Lefkowitz:
We really couldn't have done it without the support of our families.

Chris Donnelly:
That are close by.

Mia Lefkowitz:
Yeah.

Chris Donnelly:
Oh, yeah. They were incredible. Absolutely incredible.

Andrew Schorr:
Before you entered the hospital and all this, how did you describe this to Eva?

Mia Lefkowitz:
We started solely by talking. She knew that I was taking a special medication for my yucky blood, she had known that for a while. And so, then I wrote her a book, actually, about how I needed extra special treatment to make me all better and I had to go to the hospital for it. I showed her a picture of my doctor and a picture of what the treatment kind of looks like. I didn't give her a timeframe, but I said it would take a long time. She asked a lot of questions about why it would take a long time, and I explained that that treatment was very difficult and very strong. I talked about getting baby cells and how it'd be like a new baby with your body, meaning extra special attention and care. You have to be very careful with it. She had a hard time with the losing the hair part, she still does. When she sees me without a hat on, she points and screams.

Andrew Schorr:
I understand that when you ended up being hospitalized, which was for almost a month, communication was limited. First of all, I understand she did come to the hospital one time and that didn't work out so well, right? That was a little scary.

Mia Lefkowitz:
It was scary for her. We did a lot of FaceTime in the way that you can do FaceTime with a 3-year-old. But mostly Chris just kept her really busy. We send her to camp, she was with her grandmas every day, she went camping with Chris in Cape Cod for a couple of nights, she had friend dates all the time. We just tried to distract her and keep her busy as much as possible during the day so that she'd pass out at night without thinking about anything.

Andrew Schorr:
Yeah, yeah. Keep her busy. So, you do that with your students, I'm sure, at school. Chris, tell me about Hootie and Uni. Who is this and how did it work in the process?

Chris Donnelly:
Sure. This is wonderful. Mia's amazing friends created this mailbox, and it was this big mailbox made out of construction paper and cardboard, it was really colorful. We had it in the living room and every morning, Hootie, which was this little stuffy that was an owl that Mia had in the hospital, would send Uni, which was Eva's little unicorn stuffy at home, Hootie would send Uni a little gift in the morning. And also, Mia would send a little handwritten note that she had written before she went into the hospital. So, she had like 30 of these notes. Each of the notes had a little activity or some special thing that Eva could have that day.

So it'd be like, "Dear Eva, today after dinner, you get to have an ice cream cone, love Mama," or like, "Dear Eva, today, you get to watch it an extra half-an-hour of TV, love Mama." All these different notes and every day was a different one. And so, every morning we would FaceTime Mia and I'd show the video of her opening up and then Mia would get to read the note to Eva over the phone, and it was just this really lovely connection that allowed us to maintain a real intimacy as a family, even though Mama was so far away.

Andrew Schorr:
Did Eva send you anything?

Mia Lefkowitz:
Yeah. She would make little crafts and stick it in the mailbox, and then when Chris would come, he'd bring it. And then all of a sudden Hootie had a little craft from Eva.

Chris Donnelly:
It was wonderful, because by the end of her hospital stay, she had all these little trinkets that Eva had made around the room, which was just really encouraging for Mia to be able to see and have that connection and be like, "Oh, I can't wait to get home." It was nice.

Andrew Schorr:
Yeah. And I understand you checked with the child psychologist as well, and there were some other tools you had, like a Legos for hospital kit and things like that, marker kit.

Mia Lefkowitz:
Yeah. Which, that was an idea from the child psychologist to have her play out some of the things that are happening.

Andrew Schorr:
But it probably, she just wanted to go on and do her kid stuff, I bet.

Mia Lefkowitz:
She did.

Andrew Schorr:
Okay. So, a few weeks ago you came home, not feeling great, obviously, but was that a big reunion? And what were the doctors saying about your daughter being able to hug you and just contact?

How Much Contact Can You Have With Your Family Post-Transplant?

Mia Lefkowitz:
They said immediate family, we can be close right away, hugging, everything, kissing, all the things. I can share a bed with him still, no separation in the home. When she's out, she wears a mask, and there is some risk. If she wasn't going anywhere, of course, the risk would be mitigated, but she also needs to live her life.

Andrew Schorr:
I know you don't share food or a bathroom. There’re some precautions you take. Let's go on to where your head’s at for both of you now. You have this little girl, you're recovering, hopefully this will go great. How do you see the future with your little girl? I'll start with you, Mia.

Mia Lefkowitz:
Well, I get to see her grow up. I don't have it hanging over my head anymore that I won't see her graduate high school, I won't see her off to college, I won't see her get married, and we get to be a family and have a life.

Andrew Schorr:
Chris, how do you see the future? What's your picture in your head?

What Are Your Hopes for the Future?

Chris Donnelly:
I'm just very optimistic and we're so happy that we get to have this second chance here, because things were really scary for a while, and going into the procedure, there's so many risks involved. And then we gamed them all out, talked about it a lot, and I'm just so glad that we ended up making the decision that we did to go for the transplant because I just feel like our future's really bright.

Andrew Schorr:
Well, just so everybody understands, there's another person, still anonymous, who donated their immune system cells to give you this second life. Maybe, maybe at some point, you never know, you may meet them. Maybe your daughter will meet them some time and say, "This person saved Mommy's life." What would you say to them if you met them?

Mia Lefkowitz:
I'd hug. What words do you say to the person who saved your life?

Andrew Schorr:
Well, I just know that our whole audience, everyone, is just so excited for you and your daughter. You'll go back to teaching, I imagine, at some point.

Mia Lefkowitz:
Yeah, in a year.

Andrew Schorr:
Yeah. Do you think you'll have other children?

Mia Lefkowitz:
We might. We banked some embryo before the procedure because the procedure does put you into menopause, so we'll see.

Andrew Schorr:
Right. Well, really, really quite a story and seems like very wise parents, and you've had parents who've helped you, what a blessing, and friends and an outside counselor. All the best to you, Mia Lefkowitz, Chris Donnelly, and to Eva. A long and happy life together. Thank you for being with us on Patient Power.

Chris Donnelly:
Thank you.

Mia Lefkowitz:
Thank you. Bye.

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.”

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