Aplastic Anemia Survivor Luna, 18, Reflects on Her Health Journey
Almost a year since her diagnosis of aplastic anemia, a condition in which the bone marrow fails to produce adequate blood cells, Luna, now 18, reflects on the experience of her diagnosis, treatment and recovery at Lurie Children’s, and what it was like to be a teenager enduring a profound journey with her health.
Luna took a year off from school following her high school graduation last spring to manage her health, but plans to attend college this fall, following her successful bone marrow transplant last June.
What first brought you to Lurie Children’s?
Around January of 2021, I started noticing symptoms including feeling cold all the time. I had pale lips and was really fatigued most of the time – mentally and physically. My dad is a physician, so when I told him about these symptoms, he suggested I get my blood tested. I went to an urgent care near my suburban home when it was revealed I had abnormally low platelets. It was alarming, and I was referred to Lurie Children’s to see a pediatric hematologist, or a doctor who specializes in blood-related conditions. There, a bone marrow biopsy showed I had aplastic anemia.
What was it like to hear that diagnosis?
The doctors, including Sonali Chaudhury, MD, Director of Stem Cell Transplantation and Cellular Therapy at Lurie Children’s, had prepared me for a diagnosis like that. I immediately went into it with the attitude – OK, how can I shift my life to adapting to this? This is my health; there is no other option than to do all I can to deal with it.
The medical team at Lurie Children’s explained to me that one of the best options to treat the condition would be a bone marrow transplant to treat the root cause of the condition: my damaged bone marrow. Immediately my family and I agreed to pursue the transplant because, being 17 going on 18 at the time, I didn’t want to consider going to college while worrying about my bone marrow still malfunctioning.
It was just generally a weird time – it’s not very typical for a teenager to get diagnosed with this type of serious illness, so I didn’t really know how to feel. I just listened to my doctors and did what I needed to do!
What was your treatment like?
For the type of bone marrow transplant I needed, I had to find a donor whose cells “matched” my own. Fortunately, my older brother was a match for me.
Transplant day was pretty underwhelming – it’s not a surgery like a typical organ transplant, but rather it’s like a blood transfusion, where my brother’s collected marrow cells were put into an IV bag and then infused into me through my port and PICC line.
The most difficult part of the transplant for me was the chemotherapy. Before transplant day, I had to endure a very high dose for seven days, and I had all kinds of symptoms, especially nausea. I also had to undergo radiation for a day.
Lurie Children’s made transplant day special for me. They gave me presents, such a gift card and a commemorative box marking “Day 0” – or transplant day.
I was in isolation for about 20 days because my immune system was suppressed, and I stayed in the hospital overall for about a month before going home. The nurses on the 17th floor played a huge part in making the process easier. Many of them were in their 20s -- pretty close to my age, and it was helpful to have them to talk with. I sought advice from my doctors and nurses by asking about how they overcame their personal challenges, which in the end, helped me through on my own.
I was a senior in high school at the time, so it was really strange as everyone around me was preparing to go off to college and have fun. I was not having the same experience as everyone else! I made the decision to just be around the people I loved – close friends and family. I was just focusing on my health.
What comes to mind when reflecting on everything you’ve been through with your health?
Now, I realize that everyone goes through something big and meaningful in their lives, and the greatest thing a human can do when facing trauma or something big is shift their perspective. That’s the greatest superpower a human has. For me, shifting my perspective is about choosing love and kindness over anything, and leaning into the relationships with those who love you. It sounds cliché, but it’s a powerful choice when it comes to mental and physical recovery.
What would you tell other young people who may face a similar diagnosis?
I would tell them to its ok to feel confused. Being diagnosed at an early age can feel confusing and learning to adapt to the obstacles is tough. However, the journey makes you stronger. Despite how different you may feel, you are worthy of love and peace. Everyone is, and you must always remind yourself of that. Take it day by day.