A tribute from a grandmother about an extraordinary boy....Akash

[calnet] Digest Number 3843 - sandip.kumar.dasverma@gmail.com - Gmail:
A tribute from a grandmother about an extraordinary boy....Akash

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, Apka 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 two libraries in village
schools in MP. He had this romantic streak, probably a result of a lot
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 student 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 basket
ball court at school to a hospital bed in twenty four hours. Out of the
blue, Leukaemia , full blown, had struck.As 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 Ziad 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 luekemia to him officially that afternoon and
was surprised to see that he took it so calmly. So she asked him why he was
not angry at the Gods or whatever. I still remember his reply which brings
goosebumps 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 luekemia 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 small room in
his grandparents' home, segregated from the world ,and wracked by the
treatment, he must have been terrified and lonely, but he never showed it.
Whenever anyone asked, he'd smile genuinely and answer "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 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 and 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
Agust 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, the Terry Fox Run this year had fifteen thousand
participants including the army; but Akash was no more. Over these Runs
about Rs.sixty 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 with Harley Davidson, to become the youngest contestant to ever do
so. This involves driving a thousand miles in 22 hours without a break, and
is monitored by Harley 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 and had a fever but he 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. He met a teenager who
had gone through bone cancer and was terribly disturbed. The boy saw his
positive approach and went on to start the first Terry Fox in Bangalaru.
All the while he was terrified of a relapse but always managed to put up a
brave front. Akash's commitment to cancer research persuaded the IIT Chennai
to take him on a short research project where his colleagues were all post
graduates and PhD students The research was on micro Rna which cause cancer
and the ones that prevent cancer. He was 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 Kellogs ,Yale, Columbia, Berkely, Warton
and Stanford. 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 anxiety .It was then that I realized how afraid 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 17 th it was full blown leukaemia. Can you imagine the
trauma to a nineteen year old who 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 40 mg 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, 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,transported
there in an air ambulance, accompanied by a very very kind oncologist
friend. Ever loyal, Akash's first thoughts were to go back to Dr Revathy in
Chennai, but she convinced him otherwise.

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 very 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.

The trial 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 doubt."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 is 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 else 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 in Houston who
helped keep Akash going by donating blood and platelets for almost four
months .Around 750 people donated blood products, some many time over. But
for these kind strangers, he would not have survived those many months.
There must be something very special and intangible in him that elicited
this response.

On eleventh May 2012 Akash left us for good, or did he? An ordinary boy who
had made every moment count, who had become a role model for many young
cancer patients ,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 a Cancer 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 donates 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 issue of
3rd 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 his death but celebrate his life.

Sumit Mehta
'via Blog this'