Ewing Sarcoma Diagnosis
It all started with a mild headache while I was 12 years old. My mom was applying balm and oiling my hair when she realized that there was a small lump on my head.
We were living in Nairobi at that time, and we immediately went to a general paediatrician. Even the doctors were surprised at how my mom could identify such a small lump just by touching and feeling it, but it was a mother's intuition, and that worked for me. Doctors advised us to consult a neurosurgeon, so we went to the neurosurgeon, but he suggested that Mumbai has prominent and renowned surgeons who have handled such tumour cases and therefore it will be better if we came to Mumbai.
We took the next flight and came to Mumbai, where my mom's entire family lives. We consulted different doctors, and finally met a surgeon who advised to do the Surgery immediately as the earlier we remove the tumour, the better it would be for me.
Then we had a Surgery scheduled, and I had 32 stitches on my head, but the news was not getting better as the tumour test reports came back positive, and I was diagnosed with Ewing Sarcoma.
Ewing Sarcoma Treatment
Whenever I used to go for my Chemotherapy cycle, I would always be playing games or reading a book. There was a volunteer who had games and storybooks, and she would share those with me. My mom used all these different methods to help me at that time and made sure that my cancer journey was not very sad.
Only Positivity Around
For me, the cancer journey was not a very sad one, because my parents were very positive. We took cancer as a common illness that can come to any person. We didn't know what cancer was, we were completely new to it, but my dad started putting all his effort, and we just did what the doctor said. My mom used to take care of me. At that time, we used to stay with my Mama (Uncle) and their family, who was in Mumbai. At home too, nobody made me feel that I was severely ill or I had something serious like cancer.
I didn't even know that I had cancer. As a 12-year-old, all I knew was that I had a lump which was removed, and I was undergoing a treatment called Chemotherapy.Even my mom would keep me away from doctors, and after each chemo or routine check-up, my mom would always ask me to wait outside, and she would talk to the doctors alone. I even created a story of my own, in which I called the cancer my clingy friend because it was something that doesn't let go of you easily.
The Miracle Baby
The whole process of my cancer journey was very smooth because everyone was so positive around me. It took about one year for my treatment to get over, and the doctors used to call me a miracle baby since the lump was very small for a normal person to identify, but my mom did that. Secondly, I had ruled out all the possibilities that the doctor had said would happen to me after the treatment.The doctor had said that I might not excel well in academics, but I proved them wrong and did better than what I usually used to do at school. Then the doctor said that my hair might not grow back on the part where the Surgery was done, but luckily my hair grew everywhere. And thus, slowly everything was ruled out and I was declared an Ewing Sarcoma survivor. Doctors were so happy with my recovery that they presented my case at the Hinduja Hospital's board meeting.
Not So Sad Journey
I don't remember being sad throughout my journey. Yes, the Pain was there during the treatment, and I have cried no doubt, but I was just another 12 year old who doesn't want to go to the hospital. But my mom always used to explain to me that if you want to get better, you have to pass through this phase.
And whenever I share my story, people get amazed at how strong my parents were at that moment, and because of their positivity and strength, I got through the phase easily.
In 2004, we decided to move back to Mumbai for my education and everything. At that time, because of the Surgery and treatment, I had missed one year of schooling. I have a sister who is just one year younger than me, and now we both were in the same class.
In school, I had a lot of problems with academics because I wasn't able to cope with the studies of Mumbai and the teachers used to look at me very differently since I was a cancer survivor. But my mom never used to judge me based on the mark sheet, and she always used to see whether we have understood the concept or not. But later, I overcame everything and started excelling well in my academics again.
Then in my 12th standard, I met with another hurdle. On the day of my practical exam, I was down with meningitis fever, and it was so severe that I was taken straight to the ICU where I was in a coma for a week. Due to that, I missed my board exams and had to repeat, but I gained strength and passed that phase positively. I aspired to be a Nutritionist so that I can work in a hospital but due to meningitis fever, I wasn't able to get the required score and landed in ECCE (Early Childhood Care and Education). I was upset in the beginning, but with the help of my college mentor, I developed a passion for being an Early Childhood Educator and worked hard for it. Today I'm very proud to call myself an Early Childhood Educator.
Act of kindness
When I was doing my bachelor's in Early Childhood Care and Education, we needed to do our internship. Call it luck or miracle; I was put into CanKids KidsCan, an NGO that works with children who are diagnosed with cancer. I got an opportunity to work with them, and I did my internship for six weeks with them.
When I was doing sessions with the children, I noticed a mother, who was with her 5-year-old kid and was staying away from our activities. So after the session, I went to her and asked why they were staying away. Suddenly, she broke down and cried, saying how she was not expecting her child to go through this so suddenly.
I told her my story of what had happened and how I was also a cancer survivor. I was also a regular school-going child at that time when it had suddenly occurred to me, but one thing that my mother made sure, was to be positive. I told her that my mom used to dress me up properly and wear make up and made it feel as if there was nothing wrong. I told her the more happy and positive you will be about your child's cancer, the more beneficial it will be for your child. Since her child was just five years old, I read stories to him and gave him activities to do while he was undergoing Chemotherapy. That time I had some colouring sheets, so I gave those to the child to do, and he started colouring. He was not bothered about the IV that was on his hands. So I told her to be positive about it and think of cancer as a common illness.
The next day, she came to the hospital as a totally different person. She dressed herself the way she would while going out somewhere, and the child's bag was filled with different storybooks, games, and activities. It gave me pleasure to think that I changed a family's life. After my internship got over, we were not allowed to go there again, but I know that she would be a happy mother today.
For Patients - Don't worry, this is just a phase of life, it's unpredictable, and it's not your fault that it has happened to you. Just be positive about yourself. Maybe something better is waiting for you after this phase. Like for me, a lot of new things were waiting, and I never imagined myself to be so confident as I'm today. And the more positive you will be, the faster you will get through the phase.
For Caregivers - You need to be very positive about it, and you should know that a mother should communicate to the child in her language, as the more the child hears the doctor's language, they may get scared.I know it's a challenging phase, but you need to be positive and strong. The more positive you are, the more positive your child will be. There are many advancements now for cancer, so be positive and trust your doctor.
For other people - There are a lot of biases that are attached to the survivors. I have faced them in school and when I was meeting people for prospective marriage. You have to understand that survivors can be normal human beings after they defeat cancer, so please accept them the way they are and treat them like you would treat any other normal human being.