Ewing Sarcoma Diagnosis
It was just a headache, and when my mom was applying balm and oiling my hair, she realized that there was a lump on my head.
We were living in Nairobi at that time, and we immediately went to a general pediatrician. Even the doctors were surprised that how my mom could identify such a small lump just by touching and feeling it, but it was a mother’s intuition that worked for me. Doctors there suggested us to consult neurosurgeon, so we went to the neurosurgeon, and he suggested that Mumbai has prominent and renowned surgeons who have handled such tumor cases.
We took the next flight and came to Mumbai, where mom’s entire family lives. We consulted different doctors, and finally, we met a surgeon who said we immediately had to do the surgery because the lump was identified at a very early stage, so the doctor said the faster we go, the better it is for me.
Then we had a surgery scheduled, and I had 32 stitches on my head after the surgery, but the news was not getting better because when my tumor was tested, we got to know that it is a malignant tumor. And I was diagnosed with Ewing Sarcoma.
Ewing Sarcoma Treatment
Whenever I used to go for my chemo cycles, I would always be playing games or would read a book. There was a volunteer over there who had her game and storybooks, and she would share those with me, and I would play, or otherwise, I would go to sleep. My mom used to use all these different methods help me at that time, so eventually, my cancer journey has not been that sad
Only Positivity Around:
For us, the cancer journey was not a very sad part, because my parents were very positive, and they used to say that we will go through this phase, and we will heal over this part. We took cancer as a common illness that comes to a person. We didn’t know what cancer was, and it struck us for the first time, but my dad started putting all his efforts, and he said we just need to do what the doctor says. My mom used to take care of me. Whatever the doctor had told us, we used to take care of that, and at that time, we used to stay with my Mama (Uncle) and their family, who was in Mumbai. So at home too, nobody made me feel that I was so severely ill or I had something like cancer.
I didn’t even know that I had Cancer, I just knew that I had a lump which was removed and now I’m undergoing treatment which is called chemotherapy because a 12-year-old would not know why chemotherapy is being given, only an adult who knows about cancer would understand that chemotherapy is given for cancer.
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 doctor about all the symptoms and everything, so I never heard the doctor’s language, and that was the reason I was always positive about my stuff, I was always like it’s okay it’s just something normal, and the lump is giving me a headache. I even created a story of my own, which I call it my clingy friend because cancer is something that stays with you for lifetime, and it’s not that it goes away fast; you can’t forget it so soon.
The Miracle Baby
The whole process of cancer Journey was very smooth because everyone was positive at my place. It took one year for my treatment to get over, and the doctors used to call me a miracle baby because that lump was very small for a normal person to identify, and my mom did that. Secondly, when my treatment got over in 2003, I was asked to come for a routine check-up in 2004, since we had to go back to Nairobi at that time.
So in 2004, when I came back to Mumbai for a routine check-up, I had ruled out all the possibilities that the doctor had said would happen to me after the treatment. One was academic, as the doctor said that I might not excel well in academics, but I overcame, and I crossed the mark of what I normally used to be in school, secondly the hair, the doctor said that probably on the right side of the head where the surgery was done I might not get my hair but luckily I got it everywhere. I got proper hair because my mom did oiling and messaging after we went back, and 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 any part being sad, yes the pain was there during the treatment, I have cried no doubt, and any 12 years old would scream and cry and would not like going to the hospital, but my mom always used to explain it to me that if you want to get better, you have to pass through this phase.
So my Cancer Journey was not a sad one. 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 had gone through that phase so easily.
Repeating an Academic Year
In 2004, we decided to move back to Mumbai for our education and everything. So at that time, because of the surgery and treatment I missed one year of schooling, I had to repeat one academic year. I have a sister who is just one year younger than me, so now we both were in the same class, and the school in which we took admission in was a new school, so there were no divisions, and we both were together 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 because I was a cancer survivor and I had to repeat a year, so I was looked at like maybe I was not so good at academics, or I was dumb. But my mom never used to judge us on the mark sheet, and she always used to see that we have understood the concept, and that’s more than important, not the exams. But later, I overcame everything and again started excelling very well in my academics.
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 it took me straight to the ICU where I in a coma for a week.
I missed my board exams, and I had to repeat again, but I gained that strength back 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). It was upsetting in the beginning but with the help of my college mentor I developed my passion to be an Early Childhood Educator and worked really 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 had to compulsory do our internship. So 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 in 6 weeks with them.
The first two weeks, we were in the CanShala where the children who would not have their chemo cycles scheduled would come to the CanShala for their education. But on the 3rd week, it was not at all planned, but we suddenly had to go to Wadia Hospital and go for the chatai shala that was set up over there. When we were doing the sessions with the children there was one mother who was with her 5-year-old child, and they were not being involved with us in our activities, so after mine session was done, I went to the child and just talked to the mother that why are you sitting in a corner, let your child also be a part of it, he will learn and enjoy. And she broke down to me and sais I was not expecting that to happen to my child, he is just going normally to the school and suddenly what happened to him.
I thought to tell her my story of what had happened, so I just shared my journey and said to her that I am also a cancer survivor. I was also a normal school going child at that time when it had suddenly happened to me, but one thing that my mother did at that time was being positive. I told her that my mom even when we would go to the hospital, she would wear her makeup the way she did when she used to go to work; she would dress up herself and me properly. However, after going to the hospital, I have to change the clothes and wear hospital clothes, but still, that kept her positive, and that is what you need to do. 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 asked to read stories to him while he is taking the chemo, give him some activities to do. That time I had some coloring sheets, so I gave those to the child to do that, and he started coloring. He was not bothered about the IV that was on his hands, so I told her mother that see he is doing it, so just be positive about it, and you have to be very strong, it might not happen overnight but think of it that it’s just some common illness that had happened and not cancer and see how it works.
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. She said, from today, I will do all the activities with my child.
I changed that one person and a child’s life. After that, my internship got over, and we were not allowed to go there again, but I know it’s been six years now, and 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 anyone’s 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. So probably for you too something new is waiting after this phase. And the more positive you will be, the faster the phase will go, and the more closer you will come to the new gift that is waiting for you after you survive cancer.
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 get scared.
I know it’s a tough phase to fight, but you need to be positive and strong. The more positive you are, the more positive your child will be. When parents are positive about it, the child automatically turns out positive.
There are many advancements now for cancer, so be positive and strong and follow what the doctor says, don’t deviate from the doctor because the doctor knows it all they have studied, and they know what is right for your child so do as the doctor says and you see how your child will come out of it.
For other people – There are a lot of biases that are attached to the survivors. I had faced them once in school and second, when I met people for marriage prospects. Survivors can be a normal human being after they passed cancer, so please accept them the way they are and treat them like you would treat any other normal human being.