This Is How It Started!

Who would have thought that starting an NGO for children with cancer will make me a story teller? Every child and his/her family is a story, has a story. But like other children’s stories, not all stories have happy endings here. Well, the world is not perfect as in fairy tales.

This is a journey few of us embarked on May,2013 and Aroh-Giving Hope, an NGO for children with cancer was born. It has changed all of us in one way or other. Lot of things move us in life, but nothing like children. A child brings a smile to anyone’s face. And we associate all the good things in life with childhood. That’s why we think about childhood with nostalgia, that’s why we want every child to have a happy childhood. We are moved to tears when we see child labor, child abuse, hungry children, child soldiers and sick children. We want everything to be perfect for them. We don’t want them to suffer; we don’t want them to even see suffering.

Well, that’s the ideal world. In our world, children fall sick, suffer and sometimes die. In the world we consciously created for us, Aroh, there is chemotherapy, radiation, surgery, pain, suffering, poverty, and often death. Then why did we consciously choose it? Well, someone has to, right? We decided that we will do everything in our power to make the lives of these kids easier and that we will do it ethically and with integrity, every step of the way. Our motto is to help a child with cancer live, if it’s medically possible.

In the last two years, a lot of children passed through our lives. We lost a lot, a lot remains. We have 203 children under our care now. I don’t have to tell you that the incidence of cancer is on the rise. I don’t want to give you the statistics. I will not reduce these beautiful children to mere statistics. Each child has a family behind him/her, parents who are shattered by the news, siblings who don’t understand what is happening. We see them going from middle class to lower middle class, from lower middle class into abject poverty in the course of the treatment.

We see the heart-wrenching pain of losing a child, we see the amazing grace with which these children bear the pain, we come across absolute angels in the form of doctors, nurses and well wishers. We also see monsters in the form of doctors and nurses, though few.

I think all of you should hear about these children. I promise you, you will learn a lot from them. In the beginning, if we thought we are going to help them, we were wrong. They are the ones who help us, to grow, to be more patient, to tolerate, to stop complaining, to be grateful, or just to be….

I invite all of you to keep visiting this space for the stories about these wonderful, beautiful and amazing children……It will change you.


Deepak’s Story

The DNA make up of the species Human Beings is 99.99% same. So the immense diversity that we see around us, is because of that 0.01% difference. Unbelievable, isn’t it? That 0.01% makes people white or black, thin or fat, tall or short, healthy or sick. It could be as small as one of our 46 chromosomes playing a game of hide and seek. Imagine a part of chromosome 9 breaking off and joining chromosome 22, which it has no business to do! Like a naughty kid playing, isn’t it? Guess what it results in..Philadelphia Chromosome which in turn gives you CML or Chronic Myelogeous Leukemia.

Now the silver lining here is that this is good cancer, if there is a good cancer. Again, if you have the good CML, (believe me, there is a bad one), then it is more like a life-style disease. With medicine and good life style, you manage the disease and get to live a long life. CML doesn’t need the dreaded Chemotherapy or radiation. It just needs one tablet for the rest of your life called Glivac (Brand name). I am sure all of you have got a WhatsApp message about the wonder drug which cures Blood cancer and is given free at Adayar Cancer Institute called Imitinef Mercilet which is the generic name of Glivac. Well, it surely is a wonder drug and it controls CML. There are reports about people who have been on Glivac for the last 35 years. Glivac used to cost lacs of rupees in the beginning, making it impossible for patients to buy it. It has come down to thousands now and Max Foundation gives it free for CML patients all around the world.
But this story is about Deepak who was diagnosed with CML 3 years back at the age of 13. His father used to own two shops at that time and he went to a major Pediatric Oncology Hospital in Coimbatore. The Doctor there did not bother to put them on to Max Foundation (He is their registered doctor) and within the next 2 years both the shops were gone. Few months back, Deepak’s mother asked us to take him to another hospital for a second opinion and we did.
The very pleasant Doctor there gently tells us that she is shocked beyond belief. With Glivac, Deepak should have gone into remission within the first 3-6 months. The rest of it goes like this:
Doctor : There is either something wrong with the diagnosis or with the treatment. If the diagnosis is wrong, this could be the bad CML.
(Amma, Deepak and I are shocked. We look at each other, worried)
Appa: (Laughs)
Doctor (Puzzled) : Sir, this is no joke. If this continues, your son won’t last long. I am sorry.
Appa : (This time he couldn’t control himself and bursts out laughing) The boy is eating well, playing well, he plays cricket, you know..he even goes to school. Don’t worry, he is alright.
(Akka looks at me ashamed. Deepak looks at me pleadingly, as if telling me, Aunty, you know my father. Please bear with him)
Doctor: You are the Doctor here or I am? He might look alright but his blood is not alright.
Appa : (Looks at the Doctor like a father looking at the stubborn child. For a moment, I thought he will pat her shoulder) I am telling you, he is alright.
Doctor: Bindu, I give up.
So we file out of the room, worried. Appa happily looks around and comments that the hospital is not bad. And he laughs his belly-shaking laugh. I lost it by that time. So I tell him, “Sir, you can laugh all you want but your son is dying. Go back to your Doctor and find out what is wrong or come back to this hospital and start fresh. Whatever it is, let me know and I don’t want to hear anything from you.”
We wait for the next 2 weeks and no news from them. So Sushila and I pay a surprise visit to their house. Appa laughs and welcomes and as usual starts talking nonstop. Nothing about CML, everything about how well Deepak is doing and about his achievements. Certificates and trophies are brought out and displayed. We try to ask Akka about what they have done or decided. But, no way..Appa won’t let us get a word in between. Then the unthinkable happens. Sushila turns to him and says politely but with a killer look in her eyes, “Sir, could you please not talk for some time?” There is a deadly silence. Appa is too stunned to say anything. Akka looks at Sushila with awe and love and reverence. I interpreted that look as,” Here is the Jhansi Rani of Coimbatore. Finally someone has asked my husband to shut up and he shut up!” Sushila calmly turns to Akka and says, “Speak Akka. What do you think?”
With the Jhansi Rani beside her, Akka speaks her mind. Says she wants her son to have the best treatment and she doesn’t agree with her husband. Since Appa is still dazed, everything goes off well. We make Akka promise that she will go to the current Doctor and will find out what is wrong.
We meet Akka every month at the office and she says no luck. Appa won’t let her go to the hospital. Few months go by. Then, a friend of mine, she herself has CML, offers to come with me to talk to the family. So, we go one day there and only Deepak and Akka are there. Deepak has gone down very much and looks sickly. Akka almost faints when she is told that my friend has CML. She is plump and looks to be in the pink of health (She really is pink…) She tells Akka that this is how Deepak should look, healthy. And she says with his blood count, he must be in horrible pain, always. She remembers that before she was diagnosed, she was in pain always and finally when the diagnosis happened, even though it was cancer, she was relieved that now the pain will go away. She said since he has been in pain for the last 3 years, he might not even know that there is another way to exist.
Akka is in tears by now. My friend asks, “Why are you not doing anything about this? He is your son, right? Doesn’t it hurt you when he is in pain?” And Akka says she can’t do anything without Appa’s permission. Without batting an eyelid, my friend says, “Then leave him. Take your child and leave him.” It has been 3 weeks since that. Akka came to office few days back and requested me to talk to Appa once again, with my friend.
Recently, someone whom I hold in high regard put me in my place. In the course of our conversation, he asked me,

He: “So you help these people, right? You were using this word ‘help’ often in the last few minutes.”
I : Yes.
He : You seem to think that you are someone because you help.
I : I think I am not bad…
He : So how exactly do you give this help? You go around the street offering help or sit at the office with a board which says ‘Help Given’?
I : Nooooooo. People come to us for help because they know we help.
He : people come to you.
I : Yes.
He : So if these people don’t come to you, you can’t actually help. There is no point in you wanting to help unless there are people wanting that help.
I : That sounds right.
Sir….point taken.
In the meantime, my friend and I are building our stamina. We are going to talk to Appa!!!!!

Thus Goes Jyothika…

People around us never cease to amaze us or disappoint us. We, in turn, do the same. Over the years, we have seen a lot of children dying. We have seen all those parents going through the most intense pain possible, that of losing a child. By now, we think we know what to expect and we think we know how to handle it.

Then comes Jyothika. We met Jyothika long before Aroh, in Make-A-Wish. She was a pretty, bubbly 11-year-old whose wish was to have a “big Teddy Bear”. She was diagnosed with ALL (Acute Lymphoblastic Leukemia) then and was admitted at Ramakrishna Hospital. It was before the disease got the better of her or before the chemo ravaged her. Volunteers met her 3 or 4 times and one thing that stood out in those meetings was that Jyothika’s bystander was always her father, and never her mother.

Three years went by and we started Aroh. Few months later, we met Jyothika again in Ramakrishna. She had relapsed and this time ALL had done its work on her. She was a very pale and bald version of her former self, but still bubbly. She was sent home soon after as nothing more could be done at that stage. Again, it was her father with her in the hospital. This time we noticed it more as she was a 14 year old teenager now. Aroh kept in touch with the father and when she started deteriorating, we arranged for her to be brought to the hospice, Raksha.

We were all waiting at Raksha when the ambulance came. Though we knew what to expect, we were shocked at Jyothika’s appearance when the stretcher came out of the ambulance (As you can see in the picture). Jyothika’s father got out from the front seat, in tears. 2 more people came out through the back and we all turned and started walking into the hospice, following the stretcher. Then comes the delicious smell of jasmine flowers, the seductive “jhil jhil” of anklet, the tinkling sound of glass bangles and all of us turned, including the stretcher bearers. She comes out..khol-lined eyes, big red bindi, lips smeared red with pan, a flowing red sari and blouse, jasmine in her hair, bangles on both her hands, she smiled at us. There was something surreal about that moment. In my mind, everything is in slow motion. The shock in everyone’s eyes, the contrast between the child on the stretcher and this woman, and in the background Jyothika’s father saying, “Jyothika’s Amma”.

Jyothika was barely conscious and in severe pain. She was in Raksha for 3 days. Second day when we visited, the nurses asked us if it was really Jyothik’s mother. According to them, she changes her sari 2 times a day and is very particular about the flowers in her hair and having biriyani for lunch!!! Father was a silent figure, sitting in a corner, always crying. Jyothika’s mother became the star in Raksha! And Jyothika screamed “Go away” every time her mother was near her. She kept on asking for her Patti. We learned that Jyothika had 2 elder brothers in their 20s, who never came to visit her. 3 days later, it was decided that they were taking her home as she wanted Patti and Patti also wanted to see her.

Our volunteers met Jyothika immediately after that at her house. Patti was always with her and her mother was not allowed inside the room. Jyothika passed away few days later. Usually, our bereavement services will continue but it was not needed here.

We can never understand the dynamics of a relationship by peeking into it as an outsider. My last blog about Deepak’s father started a heated discussion in our WhatsApp group, which I appreciate. I am not judging here but merely observing. I write about kids and parents who made an impact on me and on those around me. I will never forget the first sight of Jyothika’s mother…the scent of jasmine…jhil..jhil..happy tinkling of bangles…red bindi….the smile….:)