An AML Story: Casey Shares Her Stem Cell Transplant Experience

An AML Story: Casey Shares Her Stem Cell Transplant Experience from Patient Empowerment Network on Vimeo

Casey Marsh, from Alvin, Texas, was diagnosed with AML in 2018 at the age of 31 after experiencing persistent flu-like symptoms. After being transferred to The University of Texas MD Anderson Cancer Center, she went through her first round of chemotherapy successfully. However, a genetic mutation was discovered and she was recommended for stem cell transplant. Watch her inspiring and uplifting story.

Casey Marsh is an AML survivor and patient advocate. Casey is giving back by volunteering for The Leukemia & Lymphoma Society and has been selected as Houston’s honored hero for the 2019 Light the Night.

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Transcript:

Casey Marsh:             

I was diagnosed last year, in 2018, with AML by just feeling flu-like symptoms, and after I had visited the urgent care, I kinda questioned still what was going on with my body. And the fourth time I went in, they had found that my heart rate was really high, and my blood pressure was very low, and I was sent to the ER that same day.

At the ER, I had found out that my hemoglobin level was at a three point seven, which was very high risk, so they took me in to a different hospital at that time to receive my first blood transfusion. After the blood transfusion, went into several different tests, and about three days later I was diagnosed with AML.

I found my healthcare team originally by going to UTMB Galveston, just due to the distance and location from where I was, but once I was officially diagnosed with AML, that healthcare team at UTMB suggested that I go and receive my treatment at MD Anderson.

After that, I was transferred only about a day later, and I met my healthcare team at MD Anderson by going through the ER and then being transferred into the inpatient care.

At MD Anderson, they did redo all of the prescreening tests. I did have another bone marrow biopsy procedure done, and all that was handled right through the ER. And then once they got all of those tests in, they actually sent me to a floor, and the next day the doctors had a plan.

So, my initial treatment that I first heard from the doctors was I was just gonna have to receive about six to eight rounds of chemotherapy, and once I go through the first round, I was actually put into remission. But unfortunately, right after that, they discovered that I had a chromosome mutation that was gonna cause relapse. Therefore, they wanted to proceed with one more round of chemo, and then I would be placed to go into a stem cell transplant.

So, when I heard that I needed the stem cell transplant, I first was a little bit curious as to what it was. So, I did ask a few people to explain it a little bit better, but if this was an option to help me get through this, then I was 100 percent on board. So, it was kind of an easy decision for me to make because I was all about fighting this and taking this cancer and getting rid of it for, hopefully, all of my life. So, if this was the option that they were giving to me, I was gonna take it. 

I’m actually very blessed to have five siblings, all full blood, and three of those siblings were perfect matches, 100 percent. And I even had one more almost perfect match with them. So, they had chosen my brother that is the closest in age and the closest in weight to me to be my donor.

And so, he hopped on a plane from Florida, came in right away, and I got to go with him to the hospital and actually be his support system through all of it, which was awesome.

So, the first part of my stem cell transplant was getting the chemo, and this chemo was the ultimate “bad boy” chemo. And I remember that one being the worst and feeling that.

And once that chemo was done, they gave you about a couple days recovery, and then you went into your stem cell transplant. And it’s a very exciting day. They make it awesome on the floor at MD Anderson because it is your new birthday, and so they celebrate it as if it’s your new birth. So, you can walk around anywhere on that floor, and you can see people celebrating with posters and balloons and cards. And when they actually come in to do the stem cell transplant, it’s just given through almost an IV drip, and so if you hold your cell phone up to it with a bright light, you can see the stem cells going down.

You really can’t feel anything; it honestly just feels like hydration or fluid going through you. But it was a very easy process, and it lasted no longer than two hours.

You feel great the next few days, and then you do have a few side effects. And all of this I was inpatient for, so they were there to document and ask questions and observe everything each of those days.

So, probably a week after the stem cell transplant was when I started seeing some of those side effects happen, but what was really nice through all of that is they always encourage you to be active.

So, I would go to exercise class. I would have to walk the halls, and they ask that you’re doing almost a mile a day. So, it was really good to have that support system and understand that even though you just had a serious transplant done that they’re still really encouraging to get you back to what they want you to be at. So, once that process was done and I was more active and was able to eat and drink on my own – I think it was about 34 days – I was released back to my house to recover. And since I do live locally to MD Anderson, I was able just to commute back and forth, but I was required to come back almost every day in case I needed to receive any more transfusions and also to have my bloodwork taken every day.

I did that for about two weeks, and then it gradually went down to three or four times a week, and then it was twice a week, and then we got down to once a week.  And now, over a year later, I now see the doctors about every other month.

Being one year out from my transplant, I’m feeling fabulous.

I feel so strong. I feel really great, and I’m very blessed and very thankful to have such an easy recovery. I shouldn’t say easy. There were some struggles throughout that, but I do feel very grateful to look back on that and see what kind of opportunities that transplant has given me. It opened up a lot of doors for me to build both my strength and my mental stability.

The support my friends and family gave me was everything. I am still speechless to this day about what they have done for me, and it was the minute that they had found out, we had a system going. Somebody was already taking care of my classroom since I wasn’t going to be able to teach. They were taking care of my students, they were planning meal plans for us, they were arranging different flights for family to come in and see me.

They were making arrangements for my husband and my dogs to get help at home, and just the amount of messages of love that came through was everything I needed to kickstart. And it was very easy for me just to put my blinders on to everything negative in this and to focus on everything positive because of them.