One Life For The Two Of Us.

By Ashley Cámara 

My story begins a few years back…in Mérida, Yucatán, México, where my brother and I were born and raised. My brother and I were kids who rarely get sick from a simple cold or runny nose, maybe once or twice a year. We also had the brother-sister relationship of fights and good times, too. Who doesn’t, right? 

They raised us both to be independent, responsible, caring, and hardworking. We were kids who loved spending time with friends and family. While we had different personality traits, we were the same deep down. We shared the same passion for helping others, whether giving someone a laugh after a bad day or lending an ear when in distress.

How it started

My brother studied to be a Graphic Designer, recently graduated college and was starting his life… when, in November of 2013, he wasn’t feeling well. I remember it was a weekend, and he stayed in his room the whole time and didn’t go out with friends or anything; he just wanted to sleep. We would check on him regularly, but he didn’t express anything other than “I don’t feel good”. As the days passed by, his skin started to turn yellow. He still didn’t feel well, and we thought it was hepatitis, so he went to get a blood test. A few hours after the test, I received a phone call from one of his friends who went to check on him. The laboratory where he was cancer tested advised he go to the emergency room ASAP.  

I remember I was in college then; I left my class to answer the phone call, and my heart stopped for a second when I heard the news. The endless possibilities of what could be and bad thoughts came into play. 

After the diagnosis

When I found out about his diagnosis, I was freaking out because I was scared. I hoped he would be OK and that it was just a quick antibiotic solution so he could come home. It wasn’t. When we heard his diagnosis, all we could think was, “OK, MDS, what is that?” We had no idea about Myelodysplastic syndrome. It wasn’t easy to understand the whole situation. First of all, I’ve never heard anything about this disease; I’ve heard about cancer, but just not this type of blood cancer.

Second, he was just 23 years old; why did this happen to him? My family and I began researching this disease. We found out that MDS is often referred to as a “bone marrow failure disorder”, which can develop into a type of Leukemia. It is usually a disease of the elderly, and this is why we couldn’t understand why my brother developed it at such a young age.

The treatment plan?

Next was the treatment plan. What was needed to cure him? This is another thing we couldn’t understand, coming from the same parents and not being a match, but I guess this is how genetics work. During testing, it was noticed he had chromosome mutations and was put on medicine to help with the symptoms. Meanwhile, the doctors were trying to find a donor, but according to his genetic “makeup”, it was going to be difficult to find an exact match. So, the doctors decided on a half-match donation. My mother was to be that donor.

Now, remembering that we were in Mérida, Yucatán, México, they didn’t have a hospital equipped for doing a Stem Cell Transplant. So we had to travel to the north of Mexico, Monterrey, a very long way from home. This was another problem as now we had to find housing close to the hospital. It also meant we did not have our support group, which was very important for us and my brother. Before we left Mérida, my brother had been battling a fungus in one of his lungs. This situation was supposedly under control before the transplant started. He also developed AML (Acute Myeloid Leukemia).

The hospital in Monterrey

So we travelled to Monterrey for the transplant. We couldn’t be in the room with him, which was very hard. 

They treated him, and he underwent a Stem Cell Transplant, but because of his low immune system, the fungus activated in his lungs, and the doctors could not control it. My brother died in January of 2015 at the age of 24. When he passed away, I wondered if I needed to start getting tested more frequently as a preventive measure. I remember the doctor telling me that it is rare that siblings could have the same disease…but guess what – In August of 2016, I woke up with my feet hurting and not being able to walk. My mother took me to the Cancer emergency room, where doctors realized something was not right.

Additionally, I developed a Cancer test need due to an Autoimmune disease called Vasculitis. This was a shock to me and my family. Before I even knew I had the disease, I was hoping that everything was going to be OK.

It happens again

So we were back to the beginning, but I was the patient this time. My only chance of survival was a Stem Cell Transplant. When I got sick, we wanted to do things differently, so we told our doctor in Merida, Dr. Adrian Ceballos, to go to Chicago for treatment. My mom’s family lives in Chicago and would be a great support system. Thankfully, we found Dr. Lucy Godley and Dr. Satyajit Kosuri at the University of Chicago Medicine, where I received treatment.

While cancer testing at the University of Chicago Medicine with Dr. Godley, results showed that I had a mutation in the GATA-2 gene. She explained that this was a common factor they had recently discovered a few years back and why some young adults developed MDS. In my case, I was fortunate enough to have several unknown, unrelated perfect matches. The doctors picked one, and I received my Stem Cell Transplant on June 27th 2017.

How it feels post-transplant

Many aspects came into play after the transplant: not being able to eat, throwing up frequently, and physical and emotional changes. I couldn’t do much or have many visitors, which was scary. It took me a long time to feel “normal” and heal.

The cancer recovery process wasn’t easy, and I honestly don’t know the exact reason that kept me going. I believe that I unconsciously decided to live for my brother and myself. He didn’t have the chance to live the full life he deserved, so I was determined to live it for him and me.

I am currently two years post-transplant and enjoying every single day. I work two jobs: work and travel. I’m independent from my family, and I have been advocating for MDS awareness and AML (Acute Myeloid Leukemia). I continue to learn more and more about these diseases. One of the events I recently participated in was the first-ever MDS walk/run in Chicago. I ran a 5k. I was very proud of myself and felt my brother running beside me.

My words of advice?

If you are going through this illness as a Cancer Test patient, keep pushing forward. It is hard and painful and can be a long recovery like mine. But you will get there. If you are caring for someone, be patient. Patients tend to take out their frustrations on you, the caregivers. If you know someone with this disease, be there for them; they need you, even if they don’t ask for help. Sitting in a room is comforting as they know you are there for them.

After all this, my motto is, “live and love life”. I got a second chance and am doing this for both of us.

With love,

Ashley