Rode is
Blood Cancer United

This is my story of what has happened to me, starting in October 2023.

I had just given birth to my last baby, and I was fixing the TV to put on some cartoons for my other two children when I got the call, “Hello, we see some abnormal blood results, and we don’t know if it is fetal cells or something else.” I am confused. Something else?! I was so confused. Here I am holding my third child about to breastfeed, and I get this vague, mysterious call. I continued to listen to her talk on the phone, “We are going to refer you to an oncologist.”

FULL STOP.
My heart drops. What is that? What do you mean? CANCER?! I have no symptoms of cancer. I feel fine! I just had a baby! I start to spiral.
I run downstairs to tell my husband. He doesn’t believe me. He is optimistic, like he always is. I have hope that this is all a mistake.

Fast forward two weeks: my husband and my baby are going with me to my first bone marrow biopsy, unsedated, may I add. One of the worst pains I have ever felt. A couple of minutes later, I was told I have acute myeloid leukemia (AML). I have to go straight into consolidation chemo, and I have to be in isolation for 30 days.

WHAT IS LEUKEMIA?!?! I’VE ONLY HEARD ABOUT IT ON COMMERCIALS! I don’t believe you. This can’t be real. I need a second opinion. I don’t know where to look. I am lost. I am in a hole.

I get my first-ever Hickman line; my chest is sore, and my three-year-old and two-year-old are asking what is on Mommy’s chest. How do I tell my babies that Mommy is going away and might not come home again? October 2023 was the worst month of my life. I was given so many shots, infusions, and medications to stop my body from making breast milk. I was in shock. People kept coming to me saying, “You’re so young!” Please stop.

Days and nights pass; my hair starts to fall out, then I have to shave it off while I am crumpled on the floor, crying that this is my new reality. Then people start to talk about a stem cell transplant to save my life. I am Dominican. I am an only child. That makes it so much harder to find a donor that my body won’t reject or cause graft-versus-host disease (if you haven’t heard of it, you are lucky, and it was scary for me to learn about. What do you mean my skin can fall off?).

THEY FOUND A DONOR! I AM RELIEVED!

Then I get a phone call from Be the Match (which is now NMDP), asking me to donate my stem cells for someone who needs them. I’m in my hospital bed waiting for some stem cells of my own, and there’s someone else who is in my unfortunate shoes? I laughed and said, “Sorry, I can’t be a donor; I'm waiting to be donated to right now.” The phone hung up.

I got my stem cell transplant in February 2024. It happened so fast! I’m in the clear now; the tests are promising. “Your counts are stable! They are going up! You are engrafting! You are not out of the woods yet! We will keep a close eye on you for 100 days.”

I rang the bell!!! YAY!

Not quite. Here comes the nausea, the vomiting, the whole nine. I feel like I am trying to get out of the haze of recovery and have my life get back to normal. Right after Halloween 2024, my phone rings. Relapse. Not again. How? Why? I hear the words, “We can’t do anything for you here. You need more help.” I swallow the fact that this will take my life.

We start to talk about moving to Texas to get care at MD Anderson in Houston. Then, Thanksgiving 2024 came with sepsis. Maybe being immunocompromised will get me instead? Every sneeze from my son and cough from my daughters makes me jump. What if that is what takes me? I look over my shoulder, mask all the time (even in my own home), and wash my hands constantly. Should I move back in with my parents? Should I get a hotel room? How can I live when I am constantly in fear?

I stopped going outside. But I have to get on a plane to save my life. I have to go to Texas. Justin and I will go first in January 2025.

Big mistake. My kids are not doing well at home without mom and dad. So, we moved my whole family of five. We packed up the car and drove 15 hours. We get there, and I get a new Hickman line, some more chemo, I get some radiation for the first time, and I do a clinical trial (which didn’t work).

In March 2025, I received my second transplant. This time, from cord blood. Full circle, I guess. Cord blood was something new to me, which was described as fresh stem cells from umbilical cords to help with blood cancer. I had a non-related allogeneic donor the first time, a 19-year-old girl. Now, I am getting two cords of stem cells in two different blood bags. My oncologist said there is a 1-in-5 chance it will work. Thank you to the moms who I don’t know who gave up their child’s umbilical cord stem cells.

Now I’m isolated again. I’m alone. It’s become a routine to be by myself. I don’t know how to interact with anyone other than my medical team.

Is this my life now? My family lives 30 minutes to an hour away (on a good day) at the Ballard House (which is a miracle on earth), and my husband is a single father to three children under five.

I look out the window, look at cards I have been sent, read the hospital menu, and watch more Netflix and Hulu shows than I can count (thank you, Living Single and Gilmore Girls for making me smile on my dark days!). I can barely walk after being in the hospital room so long. Physical therapy begins. Pulmonary function test here, blood transfusion there, fever, low blood pressure, steroids, moon face, menopause, and tacrolimus to help with anti-rejection. Medications are given to me to help me not get certain viruses that could kill me.

Now it’s July 2026. I’m still here. I’m writing this article. I was shocked when my first year re-birthday of my second transplant came around in March. I am writing my story. I have been racking my brain trying to figure out how to put all of these years of my life, the pieces of my story, down on paper. How do I do that?

I am forever changed. My body has changed. My mind has changed. My family has changed. Forever. There’s no way back. There is only forward. I look out the window, and I see the sun. I am so happy. I see my now six-year-old, five-year-old, and almost three-year-old every day. They are so happy. I never thought I would be there to see them enter preschool, graduate from Kindergarten, or get ready to start first grade. I value every single moment I have with them. Every movie night, mommy school lesson, and everyday things someone might take for granted.

My relationship with my husband, my caregiver, who has seen me at absolute rock bottom? I thank him. I lean on him. We are working together in love, 'til death do us part (and I have swallowed that reality many times).

Will it come back? I don’t know. Am I a survivor? I don’t know. Every single time I have to get back on a plane to head to Houston for a bone marrow biopsy to see if it has come back, that feeling in my gut comes back. However, I now have a community around me, a stronger faith and hope, and a new life. I hope I am here for so many years, to see everything my children get to do in their lives, to grow old with my husband, to see myself grow old, but right now I am happy, and I am breathing. That is all I can ask for.