 Nothing can give us a better in-depth insight into Akash’s colourful, fruitful and meaningful life than his grandma’s open letter and so the family decided to share this...
A Grandma’s Open Letter for Akash
June 2012
We have just bid farewell to our grandson Akash Dube, an ordinary teenager who changed into an extraordinary human being after he was diagnosed with Leukaemia at sixteen.
Born to Sujatha, a chemical engineer and Ravi, a food technologist, Akash was a fun loving happy kid. He was warm and had scores of "bestest" friends, everyone very special to him. Because he had studied at Ibn Seena English School from kindergarten, it was understandable that he treated his classmates as family, but he went further and reached out to all the drivers and conductors who loved his jaunty greetings. "Mumtaz Uncle, kya haal hai" or "uncle, Aakash beta pass ho Gaya?," always engaging, and always respectful.
Ever interested in being useful to others, even as a fourteen year old, he had sold old CD's and books to start to libraries in village schools in MP. He had this romantic streak, probably a result of a lot of reading that made him want to be a shining knight. He gave up most of his pocket money for two years to pay the fees for a boy in Rishi Valley village school. Every year, from the age of nine to sixteen, he participated in the Terry Fox Run for Cancer Awareness in Dubai, and would charm his teachers and friends into contributing to the cause.
Then, when Akash was just sixteen, lightning struck as he went from a tennis court to a hospital bed in twenty four hours. Out of the blue, Leukaemia, full blown had struck, he lay in bed we thought he didn't know of his ailment but much later we learned that he knew exactly what he had and had told his friend Zaid about it and asked him not to tell anyone else because he did not want to be pitied. We were asked to shift Akash out of Sharjah in twenty four hours and tried to keep up the facade with him that he had dengue. The truth was that he was playing the part to comfort us! This concern for his family and friends would continue throughout the four years of his treatment. That evening, en route to Chennai, a hero was born.
At the Apollo Speciality Hospital Chennai Dr Revathy saw him; it was love at first sight and the doctor remained connected with Akash till the day he was no more. She broke the news of leukaemia to him officially that afternoon and was surprised to see that he took it so calmly. So when asked why he was not angry at the Gods or whatever? I still remember his reply which brings goose bumps to me even after all these years, "Why should I be angry, and with whom? I am just a statistic in the number of people who get leukaemia each year. Infact, I am luckier than most because I have the best doctor and my father can afford to get me treated whereas so many are not so lucky,” this from a sixteen year old who had never known any hardship.
Akash was told that the chemotherapy and treatment would keep him in Chennai for over a year. It must have been hard for him to be away from his home, his friends and his dog, but he never let on. Confined to a room in his grandparents' home, segregated from the world, and wracked by the treatment, he must have been terrified and lonely, but he never let on. Whenever anyone asked, he'd smile genuinely and answers, "I'm O.K.," he did not want pity and he did not want his family to suffer. I would be broken by the sight of his emancipated body and the terrible physical suffering he was going through, and he was perceptive enough to sense this. "Don't worry, Daadi, it's alright. I have not lived yet so how can I die?" How many sixteen year olds would be brave enough to be cheerful and upbeat in those circumstances?
One day he asked about the Terry Fox Run in Chennai and when he learned that there was no Run in Chennai, he decided, on the spur of the moment, to initiate one, right from his sick bed under the banner “Today’s research is tomorrow’s cure”. Even though his body was terribly weakened by the chemotherapy, he sallied forth and reached out to the people of Chennai who embraced his idea wholeheartedly. Frail and in constant danger of catching any infection, he put on a mask and went from school to school to talk about the run. He talked to the newspapers and the TV people, the IIT and the Rotary and pretty much everybody with a fire and a conviction to do the Run. Wherever he went, he immediately established a warm relationship. This sixteen year old whose only venture into public speaking was when he addressed his school assembly to ask for their vote as he stood for School Captain, who was essentially a quiet and shy person except with friends, spoke to strangers all over Chennai with a fervour that ignited people. He spoke with confidence on NDTV and to seasoned reporters and stretched his stamina to the utmost to get the Terry Fox Run started.
The Rotary and the IIT came on board and Pepsi and ETA and many others. Finally on a rainy day on 30th August 2009 the first Chennai Terry Fox Run was born in the YMCA campus, with the Canadian Counsel (Terry Fox was a Canadian) in attendance. Twelve hundred people, including the staff of Apollo Hospital took part. A bald and gaunt Akash could be seen doing some laps - he had practiced at night when the streets were quiet, against all odds to muster the stamina to take part. Where did this determination and courage come from to this ordinary young boy?
In its fourth year now, this year there were fifteen thousand participants including the army; but Akash was no more. Over these Runs about Rs.60 lacs have been collected and given to Tata Memorial Cancer Hospital .This year the Terry Fox Foundation has agreed to give the proceeds to Shanker Netralaya Chennai for cancer research.
All through that year of isolation in Chennai, his friends pepped him up through Facebook, SMS, and phone calls. He must have been lonely and lost but there was never a word of complaint. At the time no one thought much of his cheerfulness but now I wonder, how could he have been so composed? He was not yet a man and yet showed such maturity and depth.
Back in Sharjah after that year, Akash was a changed and a determined boy. By hindsight I can only guess that he had decided to live life to the full as he was unsure about the future. No fear, just determination. He learned to drive the car and the motorbike and then completed the Iron Butt challenge on Harley Davidson, to become one of the youngest contestants to ever do so. This involves driving a thousand miles in 21 hours without a break, and is monitored by Hoq staff. He partied hard and laughed a lot, as if he wanted to use up his share of laughter. He went dune bashing, driving over steep sand dunes at risky angles. All this despite a formidable array of daily doses of oral chemo and chemo by port every three weeks and the steroid injections weekly, which caused great pain in the bones.
He made us believe that all was well when infact he must have been scared and anxious about a relapse as the doctors had told him of the possibilities within five years. One of his friends told us that he was terrified and cried at night but did not want to cause pain to his family. How I wish he would have let us share his fears. He really was someone special.
During these three years of remission he went back to Chennai to canvass for two more Terry Fox Runs and was driven by the need to create awareness about cancer and the need for serious research by non pharmaceutical neutral scholars. He enrolled for and completed his A levels, and did the SAT exams to score near perfect scores. On the day of the exams he had a dose of chemo through the port, had a fever and came armed with a cold pack but pretended to be absolutely well. Princeton Review, the coaching institute were so proud of Akash's results - he had topped the entire Middle East - that they still use his picture for their promotional material.
In these years of remission he reached out to every friend of his, visited old teachers, helped the school drivers and conductors set up computers that he had charmed people into donating, helped a few people get jobs through his excellent networking, and even set up a company to develop herbs with medicinal properties and bring technology to help treatment of cancer. Akash regularly met other cancer patients and mentored them. Akash met a teenager who had gone through bone cancer and was terribly disturbed. He saw his positive infectious approach and went on to start the first Terry Fox Run in Bangalore.
All the while he was terrified of a relapse but always managed to put up a brave front. Akash’s curiosity persuaded the IIT Chennai to take him on a short research project where his colleagues were all post graduates and PhD students led him to a research about micro RNA which causes cancer and the ones that prevent cancer. Very convinced that one day oncogens will be switched off before their onset at genetic level eliminating harsh chemo therapy. Akash could be quite persistent when he really wanted something badly enough. The paper he wrote resulted in a research grant and mentors hip of a Nobel Laureate, along with admission to the graduate course in Colombia University. What added to the thrill was that he had secured admission at Harvard, Carnegie Mellon, Kellogs, Yale, Columbia, Berkeley, Wharton, Stanford and many more. He did University level courses at Harvard where he topped the Maths class. He was over the moon and chose Stanford where his brother had studied because of its excellent cancer research facility.
Like any grandmother, I was afraid to send him away while he was still on a rigorous regimen of chemotherapy because I knew that there would be no family to look after him. "Akash, postpone your going to Uni for one year, please" I pleaded. "Can you guarantee me another year of life, Daadi?" he asked, the smile hiding the uncertainty. It was then that I realized how anxious he must be and how uncertain of the future. God knows what demons must have plagued him and yet he shielded his family from these fears.
And so he left for Stanford for ten weeks of "most fun I had in my life" according to him.
Yes, just ten weeks later the cancer returned with a vengeance, as suddenly as it had occurred the first time. On the 10th of December his blood was clear and on the 17th it was full blown leukaemia. Can you imagine the trauma to a nineteen year old that was booked to return home for the Xmas holidays the next day, to be told that he had had a relapse? Yet he went to the hostel, and partied with his house mates as if nothing had happened; he wanted them to remember him as a vibrant happy person. The strength of character that can deliver this veneer under a broken and aching heart is phenomenal!
At first, at Stanford Hospital Akash managed to remain cheerful even though his marrow created agony for his bones and he was on more than 40mg of morphine. He had implicit faith that the doctors would bring him under remission and then he could have a bone marrow transplant as his brother was a perfect match. This was a special quality in him, his trust of people around him. Even though he was brilliant and knew a lot about cancer, he never doubted the people around him would do the best they could. Under immense stress and pain, he bore the now familiar chemo regimen as cheerfully as he could. The scores of friends that came to visit him took home a belief that he would walk out of the hospital, hale and hearty and he made it appear so easy. I am seventy years old and I have never seen a braver youth under so much duress.
The chemo failed and so doctors gave him the last weapon in their arsenal, the harshest chemo they had, so harsh that he was left absolutely skin and bones. Now the doctors told him that they could do nothing more? Did he cry, rant, shout or blame anyone? No. His nurse remembers his reply "I am nineteen and I am willing to fight so why are you giving up on me doctor?" He volunteered for a trial drug at MD Anderson Hospital, Texas in an air ambulance, accompanied by a very kind oncologist friend. Ever loyal, Akash's first thoughts were to go back to Dr Revathy in Chennai.
At MD Anderson the trial drug failed but it had given him a month's respite in which he came home for about ten days to spend time with family and convinced his physician to allow him a dog. He sourced the Scottish Terrier from the Internet and requested his brother to drive out and get it. For ten days he spent every waking moment with the dog he named Chewbacca. I asked him who would look after the dog when he went back to college and he replied "Arjun" (his brother). Only after he was no more did I understand that he was leaving Chewy to his brother as solace, because he knew Arjun would be devastated. That is how thoughtful and perceptive he was.
At MD Anderson the drug failed and he volunteered for another. By then he was absolutely fatigued, like a boxer on his last reserves. I asked him towards the end, why he had volunteered again even though he knew it was so painful and the outcome in so much doubtful? "Daadi, I feel good that I am being useful for cancer research." He was too intelligent not to know that the end was near, but he wanted to go down fighting. He was convinced that the reasons for cancer need to be studied before a cure was found and he often spoke of independent fundamental research. Infact once we had this discussion, when he was in remission, where he said that he would like to work in Cambridge as a research scholar because he believed they were known for fundamental research.
During his battle with cancer at MD Anderson, no one ever heard him complain. He was a little boy of nineteen, frail, frightened and in terrible, terrible pain, but he never showed it, because he was acutely aware of the pain his family were going through. Once he said out of the blue, "What kind of a monster have I created? It’s all my fault!" I understood that he wanted to protect us all. I would like to add here an observation I do not know where to put in but I know I owe it to Akash. Please, family, have the courage to talk to the patient, talk to him about his fears and hopes and plans because the patient is in a lonely and terrifying place and that burden needs to be shared openly. Please talk to each other too about your fears as tragedies like these, if not brought into the open early, can devastate families.
However, this is Akash's story and it will not be complete unless I tell you of the dignity and calm with which he bore the excruciating pain and disappointment of the last few days. He could barely speak but he gestured calmly to his parents, his brother, his Uncle, his cousin and his grandma. He thanked all the nurses and doctors who were in tears. Ever polite, he had never asked for anything without prefacing it with a "please" and adding a suffix, "thank you".
This story will also be incomplete without mentioning the invaluable contribution of organizations like Pratham, IACAN, many Indian Associations, temples and churches, and people from neighbouring colleges who helped keep Akash going by donating blood and platelets for almost four months in Houston. Around 750 people donated blood products, some many time over. If not for these kind strangers, he would not have survived those many months. There must be something very special and intangible that elicited this response.
On eleventh May 2012 Akash left us for good, or did he? An ordinary bowhead become a brave role model who had made every moment count, who had become a role model for many young cancer patients, who has left the desire to do something for Cancer in the hearts of all those who knew him. One of his friends has become an active supporter of Leukaemia research in Perth; his cousins in Melbourne regularly volunteer for cancer support, be it a super shave or an awareness drive; another friend is organizing an awareness drive in Manipal where he studies; a cousin and aunt are organizing an Akash Dube run in Bhopal; his parents have set up an Akash Dube Foundation to help orphaned and disabled children. The foundation has adopted 117 children and intends to reach 1000 by 2014. Akash Dube Foundation also takes up treatment of Leukaemia patients and donated for cancer research, education and cancer research being close to Akash’s heart. There must be many more. Outlook magazine had put him on their 20 most promising youngsters list in January and again in the 3rd issue in September. If you Google search Akash Dube or Terry Fox Run Chennai, you will be heartened by his enthusiasm in the face of extreme adversity.
I am the proud grandmother of an extraordinary, brilliant and courageous youth and I will not moan him but celebrate him.
With lots of love,
Daadi
(Grandma)
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