I was diagnosed with Acute Lymphoblastic Leukemia twice at the ages of ten and fourteen. I started having symptoms such as fatigue and feeling very tired all the time. I also had leg pain, high fever, anemia and some bruises out of nowhere. I also had joint pain, and I used to bleed quite easily it was these symptoms that led to the diagnosis. And everybody was just in shock. I was just a child of ten years at the time, and having cancer was something we never thought of.
Family history and their first reaction
Since I was still a little child and there was no history of cancer in my family, the news came as a great shock to everyone. I was just ten years old and I understood that my hair would eventually fall out as a young girl, I was scared of it as well. I was afraid of dying and losing my friends because I was aware of the concept of death. The reaction of my family was that they were very upset. And they kept asking themselves, “Why her? Why, of all the people in the world, did this happen to my daughter?”. The whole incident itself was very upsetting and traumatic for me and my family.
Treatment and Treatment side effects that I experienced
I received chemotherapy and blood transfusions the first time I was affected. And in receiving a second diagnosis, I had chemotherapy, radiation treatment, and blood transfusions. During my cancer treatments, I experienced several side effects, and I continue to experience them even to this day. My hair began to fall out. Some of the medications that were given to me included steroids, which made me chubbier and bigger. I also experienced a stroke, which was one of the main consequences. Additionally, this stroke later led to brain damage, which I continue to struggle with. My memory center in the brain suffered from this damage. Due to this, I still have learning disabilities and memory problems.
Managing Social life During Cancer
I did not go to school for a long period of time. I could not talk or walk. I could not do things on my own and my memory was really bad. So I did not go to school for a while, almost for about a year. Later on when I did go to school, I tried going back to my normal self and socializing with peers. Obviously, I felt I was different as, I had no hair. I went through something so traumatic that nobody in my class could understand or even comprehend it. I went through cancer twice, one was when I was a child and one was when I was teenager. And so it was challenging, as your peers can be mean at times. I have been bullied and made fun of in school. But there were also friends who would include me in everything. They would even come to visit me at my home when I could not go to school.
Due to my weakened immune system, I was unable to participate in extracurricular activities or sports. To help me feel included, they would occasionally ask me to help with water or small tasks. I did have both positive and negative experiences during the journey. But thankfully for me, I did have a lot of positive people and experiences in my life.
My mental and emotional well-being through the journey
During the hospital and the treatments, I had a child life specialist. These child life specialists focus on helping children in the hospital understand what is going to be happening in the child’s language. They help educate these children and advocate for them. They also help in reducing the stress and anxiety that a child or an adolescent might be facing. And so, there were a lot of play and activities involved. There were activities organized inside the hospital and it helped me keep my mind off everything. It helped me relax and cope and distract my thoughts about the treatment. There have been times as a child when I said, “I just want to die.” There are so many treatments, and the pain and suffering, and uncertainty is something that is challenging. And my specialist or psychologist would talk to me, hear me out, and deal with whatever emotions I have been dealing with. I would also feel better just talking to visitors who would come to see me. There were many circumstances where people come into my life that would help me have that positive energy within me.
Lifestyle changes during and after treatment
After my treatments, I took things a bit easier. And I later discovered that I loved to run. After I had my port a cath taken out, I was able to do more exercise. I always tried to help myself through the journey. And so, I started exercising, and running and I also started eating a healthy diet. Before the treatments I was able to process and do things at a faster pace. After the treatments with the brain damage, I realized that I could not go forward a lot education wise. So I used to tell myself that, “Juanita, you need to take things slower, and it does not matter if your friends are going faster in education.” During school, I was put in a special education class. I was upset that my friends were in another class, but in my head I knew that I would get extra help. And so, one of the major lifestyle changes I adopted was understanding my mental health as to what I can do to focus on me.
My top three learnings in this journey
After beating childhood cancer twice, I know that no matter how challenging things are, I will get through it. I got through something so big as a child that I feel, with a positive mentality anything can be done. I would say I live in the moment, consciously aware that each moment I breathe is a gift. I wake up everyday and I thank god for another day. It does not matter if it is a dark day or a bright day; I am just so happy to be breathing & alive because I got the opportunity to be here. I am just grateful for life. I am just grateful I am now able to share my journey with many other people through my advocacy movement, “BeholdBeGold”. I think it is essential that people know that children survive, but struggle later on in life.
My message to Cancer patients and caregivers
Surround yourself with positive individuals who will energize you and good support that will be there for you even on the days you feel helpless and when you just want to give up. You are going through a lot while on treatments like anxiety, depression, and loneliness, and it is important to surround yourself with people who help you lift your spirits up and regain the energy that is missing. A good support system is crucial throughout the treatment. I would sum up my entire journey in one line as, “Resiliency in the face of adversity.” I went through an adversity like cancer, and it is the resilience that made me the person I am today.