When I was 16 years old, I was diagnosed with acute lymphoblastic leukemia (ALL). I had previously been on track to graduate early, I was just cast in a play, a member of DECA, GSA, the improv team, and Key Club. So, all of that went away. I had to leave school immediately and drop out of all of it, including the play and all the clubs I was in. I didn’t get to graduate early, and I pretty much lived in and out of hospitals for a year. I eventually went into remission through chemotherapy and was able to go back to school the following year and rejoin everything. I finished my treatment after 2½ years of chemotherapy at 18 years old and felt completely lost in life. It’s so traumatizing to be a teenager with cancer. But I put it all behind me (never really processed any of it) and moved on with my life as best as I could.
Fast forward 9½ years later, I have three children, and I’m pregnant with my fourth. I’m newly married, and I am happy as can be. Life is exactly as I had imagined it would be one day, and I’m finally right where I want to be in life. Then I started to feel very tired all the time. It was hard to make it up the stairs without running out of breath. I got dizzy every time I bent over to grab something while I was cleaning up. I had a huge bruise on my leg that just lingered. I chalked it all up to being pregnant because why would cancer even be on my radar when I’m coming up on 10 years cancer-free? I was “cured” after five years, right? Wrong. So, so wrong. I ended up in the ER because my face and arm went numb. My hemoglobin was at 5.2, and no one knew how I was still walking around. By the end of my hospital visit, they chalked it up to pregnancy. I needed to start getting IV iron, and they told me that I had a few abnormal cells in my blood and to follow up with a hematologist. So, I continued on with my life until I ended up in the hospital again. A different hospital this time. Immediately, they did a bone marrow biopsy. And there it is, the same cancer that took so much from me almost 10 years prior, rearing its ugly head again, getting ready to bring a wrecking ball to my life once more. More than 90% of the bone marrow they sampled was cancer. I was 23 weeks pregnant at this point. Because this was my second time having this same cancer, the hematologist knew that I was going to need an allogeneic stem cell transplant. I live in Las Vegas, and we do not have any doctors who do those here. So, we left the hospital, packed our bags, and went straight to UCLA. They started me on steroids to stop the cancer from growing while they figured out a plan. And a week later, I was getting chemotherapy.
I spent five weeks inpatient while they monitored my baby and started my treatment. Because of the cancer, she struggled with low fluid, and intrauterine growth restriction, and her cord blood flow was not working correctly. So, she was measuring weeks behind the size that she should have been. She was packed in tight with little room to float around based on the low fluid, and her heart rate kept declining, but she always recovered from it, and it came back up. At 27 weeks, RIGHT before I was going to get my fourth round of chemo, her heart rate declined, and she did not recover. I was rushed into emergency surgery, and that is when my Ruby Rae made her appearance in the world, weighing in at 1lb. 3.6oz., 11 inches long, right before Christmas. She was our Christmas miracle. Her lungs were extremely underdeveloped as most baby's lungs would be at just 27 weeks, so she was immediately intubated and brought to the UCLA NICU. In the following months, she grew in the NICU while I continued treatment at UCLA. I was back and forth between the clinic and the NICU. I would go get chemo, then go upstairs to hold my baby. It was very overwhelming, but we did what we had to do.
Unfortunately for me, the chemotherapy was not bringing me to remission. We tried immunotherapy, and it didn’t work at all. My cancer grew while I was on it. So, my doctors finally decided that we needed to do CAR-T cell therapy to get me into remission so that I would be ready for my transplant. And to my luck, it worked! I got the call that I was in remission. When I had cancer previously, CAR-T was not an FDA-approved option for treatment yet. But this time, it was, and thank God because it was kind of the end of the rope as far as treatment options go. Unfortunately, UCLA will not follow up CAR-T with a transplant unless you have relapsed. So, I transferred all of my care over to City of Hope in Duarte, CA. Simultaneously, my daughter also switched hospitals. Because her lungs were extremely underdeveloped, they were unable to extubate her. She was going to require a tracheostomy to continue staying on the ventilator but with the chance of going home once we were completely trained on how to take care of a baby on life support. So, she went to CHLA where they have an incredible program to train parents of children with tracheostomies and ventilators. We stayed at Ronald McDonald House in Los Angeles for six months while she was there. Then at the exact same time, she was ready to be released, and I was ready to be admitted for my transplant. They would not release her to just one parent, you had to have two strong caregivers, so we were forced to bring her to a subacute facility while I got my transplant. I got my transplant at City of Hope from an unrelated donor off of the registry! I did very well with my transplant, and after the 100 days were up, we got our baby out of the hospital, and we were finally able to go home to Las Vegas.
I was under the impression that I would once again be able to put all of the cancer stuff behind me and move on with my life, just leave it all in my rearview and never look back. And I was so sadly mistaken. I had no idea the damage that graft versus host disease (GHVD) could do. I ended up getting grade 4 severe GVHD of the skin, mouth, and eyes. Luckily, I still receive care at City of Hope, and they have been able to help me manage my GVHD. Doctors in Vegas do not know how to treat GVHD because they don’t do transplants, so I am required to travel back and forth from Las Vegas to California every couple of weeks for checkups with my doctor. It was a harsh reality but a necessary one to realize that cancer and its effects may always be a part of my life and that I probably won’t be able to just move on and forget about it. But there is also a power and a strength in that. I can’t just run away from it, I am taking the time to process what has happened to me. I am constantly connecting with other patients who have been through similar experiences as me, and I’m becoming a pillar in my community to help others and push for a better future for all blood cancer patients. I recently was a part of the 2025 Las Vegas Visionaries of the Year (VOY) campaign with Blood Cancer United. We raised over $1000! I plan to do pop-up tents at events in Las Vegas for NMDP to get more people signed up for the registry. I’m definitely going to do Light The Night (LTN). I plan to share my story for the rest of my life to push for better healthcare options in my city so that no other family has to go through what mine and so many others have, having to pack up and leave the state in a hurry to get the life-saving care they need. We should be able to do that in our own community, surrounded by our support system, and go to sleep in our own beds every night, not in hotels or family members' guest rooms. When I did the VOY campaign, I ran under the Pillar of Research because I benefited from what happens when you fund research. The first time I had cancer, CAR-T wasn’t an option. I am alive this time because of it. And I know that there have been multiple medications approved by the FDA recently to help patients experiencing GVHD as well. Research matters and I reaped those rewards. These days, I still deal with GVHD, but it is something we are managing, and I am okay. I am cancer-free, and that is the most important thing. My baby and I are alive, my family is whole again, and now I get a second chance at being a mother to my four beautiful children, a wife to my incredible husband, a daughter, a sister, and a friend.
Aryanna
acute lymphoblastic leukemia (ALL)
