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Submitted by PatientsEngage on 7 May 2020
Profile pic of Acute Lymphoblastic Leukemia survivor a man in a red shirt blue tie and dark jacker

Anirudh Jamadagni, 27 from Bengaluru was diagnosed with ALL, Acute lymphotic leukemia, when he was 6 months old. He and his mother share Anirudh's journey with ALL, the side effects, the societal challenges and the triumphs and how his mother has been his strength.

Anirudh’s mother, Savitha:

Please tell us about Anirudh’s diagnosis

Anirudh was diagnosed with Acute lymphocytic leukemia or ALL type 2, Stage 3. On 6th March 1995 when he was just a one year and five-month-old baby.

Learn about Acute Lymphoblastic Leukemia here

What were his early symptoms?

Anirudh was a premature baby but grew up to be chubby and healthy. One day, I noticed he was unusually quiet and tired. He was quite a foodie but was refusing food that day. I was worried he would lose weight and had seen some measles like marks on him. I took him to his Pediatrician who saw the bluish spots and immediately ordered some blood tests. That soon followed with severe fever around 102F. When the test report came back, our Pediatrician told us that it was cancer and immediately referred us to the Kidwai Cancer hospital in Bangalore.

Please describe your experience of managing his condition.

We were residents of Mysore but luckily my parents lived in Bangalore, so we moved him there and started treatment. His initial blood report had WBC at 90,000 and platelets at 80,000 but after just one cycle of Chemo, both his counts increased. I used to take him for every hospital visit. For lumbar puncture, we would have to hold his head down and keep him still in a bend position, he would cry so much and call me the “devil”. But he was a good boy, he would be easily cajoled with mythological stories or a new Hotwheels car. After he turned 2, they started him on Radiation.

I used to only serve him hot homemade meals, no outside foods. Only me or my husband were permitted to feed him, that too small meals through the day. On most days, it would be dal, rice, dosas, and lots of dry fruit.

When he was old enough to start kindergarten, his teachers were very nice and would allow me to sit outside his class. We were very careful that he never injure himself or have a fall. His doctors had warned us that till age 8, he had to be looked after meticulously.

When his hair started falling, my husband shaved it off telling him it was Lord Balaji. I remember the scariest episode was when his breathing became shallow during a Chemo session. He also had high fever and abnormal heart rate. I started crying and the medical staff around me was ready with Oxygen, but he pulled through.

Anirudh:

What is your present condition?

In 1999, all injections and maintenance doses had stopped. In 2005, I had my last bone marrow transplant and steroid course. Follow-ups initially were a blood test every 6 months, my last follow-up was in March 2010. I am now am a psychologist and also running an IT Software business in Bangalore.

Do you have a family history of your condition?

No 

Have you had any related complications from your primary condition?

  • Had many complications such as a fungal Infection on my tongue which affected eating and drinking for a whole week.
  • Arm veins were burnt because of an IV Injection VCR Daunomycin.
  • Multiple fractures due to calcium deficiency

What was your course of treatment?

In all, I have had 32 cycles of Chemotherapy, 48 bone marrow transplants, 28 lumber punctures, and 42 cycles radiation given to brain.

Were there any side-effects of treatment?

Yes, in 2nd standard, my teachers and parents noticed that my grades were suddenly dropping. In one exam, I had got a complete zero, which was shocking because I had been a good student till then. My mom was called and she took me to an ENT doctor to get me checked. He told her that both the ear drums had a hole due to which there was loss of 99% of hearing. It was treated with a surgery named tympanoplasty.

I also had low immunity.

Obesity due to steroids during teenage years and was teased at school for it.

Was also diagnosed with learning disability (dyslexia and attention deficiency) and developmental disorders due to the radiation given at early age. I had a lot of trouble with math.

What kind of counselor or specialists (including Physio/ Occupational therapist/ Psychiatrist etc)do you consult and how often?

By the time I knew about my condition, I had already reached halfway. It was during a maintenance period, that I was sat down with a counselor who explained my condition to me. Since I was a baby, I have been going through treatment, so I never knew anything different. I used to wonder if I will ever be normal again. Later in 6th grade when I would get fractures, bone pains and weight gain, I realized that all these side-effects were not going to subside easily.

I had to consult Psychiatrist for my Learning Disability and Developmental Disorders in Mysore. I was in 1st standard and it lasted for 2 years, 4 times a week. It was most helpful.

What changes have you made to your lifestyle because of your condition?

As I was very young and the biological defense system was not in good condition and also dealing with obesity because of steroids given, made me weak physically. But later I changed my entire physical lifestyle with exercise and good food habits.

Have you tried complementary medicine or therapies, like homeopathy or yoga? If yes, did it help?

No

How did you mentally/emotionally cope with your condition?

My mom played a vital role, she is my strength! Being with such a strong lady inculcated that  emotional strength from her. Have undergone lots of physical pain and emotional pain. I was allowed to be physically active only when I attained the age of 14, because of side effects.My condition taught me that belief. determination, positivity, patience and family support are key to succeed.

How has your family supported you? Who has been your biggest support/companion through it all?

Was treated as a taboo in my family, our own relatives would keep away from me. Continuous Support was from my maternal grandparents and my uncle Dr Krishnamurthy. Many kids at school or their parents would think that I’m contagious and would spread my cancer to their children.I was not touched by anyone in school or family functions.

I was managed by my mother, Savitha and my maternal grandparents were my backbone during those days. Dad used to prefer not to see me in pain as he was emotionally not that strong.

How did your friends treat you? Were you isolated?

I wasn’t isolated, they helped with my classes and notes.

What were some of the challenges you faced and what is your advice to patients who face similar challenges?

Everything is a challenge! Belief and positivity in an individual can cure anything with best family support.

How has your diagnosis changed your life perspectives and ambitions?

By the time I was in 9th grade, I was determined to help other patients going through mental issues. That got me interested in Psychology and become a Psychologist. Nothing is easy here, keep calm and wait for your turn and serve the needy.

What keeps you awake at night?

Thirst for achievement and to serve the needy. I just want to remove this taboo from our society.

 

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