Aadhar kyon? (Why we established Aadhar?)

Ever since Aadhar started, I have met so many people with my bhiksha patra (begging bowl) in hand. I have got various responses. Lots of people have wholeheartedly supported us. Not only with funds, but also with advice, volunteering and with tremendous faith that I am honest in all my dealings with their hard earned money. But there were also those who felt that they did not want to support cancer patients because they were not sure if the patient would survive.

Why I started this cancer fund is what I am asked lots of times. So I sat down to think about what really deep down motivated me to do this work. To tell you the truth, when I was diagnosed with lymphoma it devastated the people around me so much that I did not have the time to sit and mope around for myself. Just looking at them was bad enough. But later as the treatment started, I went through a lot of feelings of guilt and sadness because I felt I was the reason for all of this stress, uncertainty and anxiety. At the same time there was a deep thankfulness in my heart that whatever happened had happened to me and not to my children or my husband or my brothers. As the treatment started the visits to the hospital were like a mini nightmare. We had to stand at least an hour or so in the line to see the oncologist. This was after we already had an appointment and the oncologist was kind enough to see us asap  as we were both doctors. It was a learning experience especially for Avinash. In his clinic patients had to wait to see him. And here he was waiting to see what the doctor had to say. But watching him being rudely spoken to or ignored by staff in the government hospital was one of my worst experiences. I used to feel terrible that because of me he had to go through all this nonsense. Then the bills started. I have to say that the cancer did not cause a single symptom. No pain, no fever, nothing. Only a painless lump. I used to take my chemo cycles in our own nursing home with caring and concerned people hovering around me. Even then I had a lot of stress and anxiety before each cycle. After the first 6 cycles I took interferon injections daily for one year. Each injection was Rs.1500/- at that time. Cost of more than Rs 40,000/- a month. (We managed to get some discount) . I used to feel terrible. I was working only as much as I could manage. But each month this money was being spent on my treatment. And this was only the cost of the medicine. No one said anything to me. My every wish was fulfilled immediately. But I used to feel a deep sense of guilt at the trouble I as causing.

I used to think all the time about all the people who I saw in the OPD. They were all mainly middle class and poor patients.  They were pushed around and had to wait for hours for their turn. If the time finished, they would just have to come back for the next OPD 2-3 days later. Then they would be handed the prescription and told to buy medicines from outside as they were not available in the hospital. Where would a person buy medicines worth thousands, if his or her salary was only 4000/- to 5000/-? This was not the only claim on his /her salary. What about food, house rent, school fees of the children? We were well off. Still 40,000/- a month was a job. How would a young parent or a villager who had come from outside Delhi or a salaried or retired person manage?? In such a situation how guilty and stressed would a patient feel, is what I always used to think!  In the hospital I met a woman with stage 4 cancer in the hospital, who did not come earlier because she had no money for treatment. The wonder of it was that this lady who I thought was going to die in a few weeks, survived for 5 years when we raised money for her treatment. Then there was a 20 year old boy whose father had retired. He could see that they would not be able to afford the treatment. But his father was running from pillar to post trying to collect money. The poor child walked up to the roof and jumped off. Imagine his sense of despair and guilt. I used to feel terrible when I saw all this. Imagine if I felt guilty when everything was easy and available, what would a less fortunate person feel?

There were a lot of emotional support groups working there. They were doing a very good, kind and sympathetic job. And emotional support is extremely important. But…. What is the point of telling a person dying of thirst or starvation that all will become well with time. Would it not be better to give that person a little water or food instead?

I had joined an emotional support group for some time. We used to visit hospitals and see cancer patients and talk to them. It was excellent in its own place. But for me it was a little frustrating. I decided to start whatever I could do with whatever amount I got or could put in. Many of our well to do patients wanted to sponsor a poor person’s treatment. So that’s how I started. One patient at a time.  My close friends were my greatest supporters. Six of us - three doctors, two lawyers and a chartered accountant started this venture. Since then slowly and steadily we have been collecting money in small and large amounts and helping patients go through their treatment by providing support in the form of medicines and counseling. Aadhar started with Rs.3000/- (Rs.1000/- from each couple as first donation).The target group we chose was children. Hence the Child Cancers Fund.

But over the years we have raised more than Rs 1 Crore for the aid of patients with cancer. All this money has come from individual donations. We have had no major government or corporate donors.

And that is why….!

Success Stories.

Back to writing after a long time. I have been meaning to write about this for sometime but was not finding the time.  Someone asked me about the success stories of Aadhar. When I sat down to think about it I realized one thing. Not just in cancer, but in any life threatening condition,I think it is the journey which matters and not whether one eventually wins or loses. In sports it said that  " It is not whether you won or lost , but how you played the game." I think in these major challenges in life also it is true. Whats important is how you went through the storm.
All these children who come for support and their parents are like teachers for me. Illiterate, poor people coming from places you haven't even heard of and who have never stepped out of their villages find their way around a huge city like Delhi.For the sake of their child, they will find a way to reach Aadhar or some other organization which can give them help to get medicines they cannot afford otherwise.And they strive and struggle to carry on.Sometimes it is only the  mothers who are bearing the entire burden. Husband is a drunkard or has simply disappeared.She has to manage on her own. I have seen fathers who take to rickshaw  pulling to earn money for food. Once the chemo is over, they stay on the pavement outside the hospital till the next cycle.
 Blood is required so many times. Once the close relatives have donated, they have to make other arrangements. My uncle recently needed to get multiple blood transfusion for his medical condition. After all at home who could, had donated I was under huge pressure to figure out whom to ask. Its really difficult. But these parents do that. They ask, beg , request anything for their child. One man was talking to me and just burst into tears. He said -- "Ab tho dost bhi muha chupa ke nikal jaate hain. Sochte hain ab ye khoon mangega."
What would be a success story ? Just when a child becomes cancer free and grows up to become an adult.
I feel it is so unfair to negate the efforts of all these other souls. I am going to write about patients who were truly remarkable and who were an example for others whatever the eventual outcome was.

Inspiration.

This is one inspirational story I really like. Its from Teaching your children about God By Henry Holt.

There is a marvellous story of a man who once stood before God, his heart breaking from the pain and injustice in the world.
"Dear God", he cried out, "look at all the suffering, the anguish and the distress in the world. Why don't you send help?"
God responded," I did send help. I sent you".
When we tell our children that story, we must tell them that each one of them was sent to help repair the broken world -- and that it is not the task of an instant,or of a year but of a lifetime!!

All too often we stand by the side, shake our heads and move on. We all feel -- what can I do??And then we wait for someone else to do something.
Surely you can do something! Maybe just smile and say a few soothing words. It makes more difference than you can imagine.
Believe me. Its my experience. No one can take the pain or discomfort away. But kindness and compassion can certainly make it more tolerable.

Saroja.

I have been remembering Saroja (name changed) frequently since I started to think of patients who I really admired for their attitude and the dignity with which they handled themselves.
I don't really remember how I came in contact with Saroja. I think she came to know that Aadhar was helping some patients with their medicines and met me regarding that.
She was a single mother who had breast cancer. Unfortunately she was one of those patients whose cancer was not responding to any treatment. She already had metastatic disease ( the cancer had spread to other parts of the body). The liver and bones were already involved. She had been a jewellery designer but had to stop working because she couldn't cope with the hospital visits and the work. Saroja had one son who was about 11 or 12 yrs at the time. She was trying to get this child adopted by a good family. And that was the first thing she asked me about. Her parents lived in Delhi but she had left home following disagreement with her father. Her mother was very supportive and was always with her during her chemotherapy.Her husband was nowhere in sight.I had never met anyone like her , who was managing alone even during this difficult time.We had lots of chats and I kept persuading her that the best place for her son would be with his grandparents. She even called up her father and made peace with him.
Saroja asked me if  Aadhar could help her get the supportive care she needed. Since Aadhar is a Child cancer fund, we decided to raise money separately for her. We raised about Rs. 40,000/- and I paid it into her account at the pharmacy of the hospital. After that we did not meet as I was out for about 2 months.
When I returned I visited the hospital again and went to the pharmacy to settle any pending bills. The manager immediately came out and met me. He asked if I had heard about Saroja. He knew about the amount we had deposited there for her medicines. He then told me she had passed away about a fortnight ago. Then he said she had come to the pharmacy a few days before that and had left instructions with him that whatever amount was left out of the Rs. 40.000/- was to be handed over to Aadhar.
I couldn't believe that this brave lady who was going through this major tragedy and the tension about her son had actually remembered to go to the pharmacy and pledge the remaining amount to Aadhar.
I can't explain what emotions went through my mind at that time. I felt totally humbled by the spirit and dignity of this lady. Hats off to you Saroja. Rest in peace.

Radhika Jaiswal.

Hi writing after a long time. This is about Radhika a little girl 8 yrs of age. She has Philadelphia chromosome positive ALL. She has been battling leukaemia for the last 4yrs. She has been on support of Aadhar since April 2008. Her treatment has been going on in Sir Ganga Ram Hospital.
Unfortunately Radhika is not getting any support from her father.Whatever is being done is by her mother and maternal grandmother. Her treatment regimen has now been changed to Dasatinib.  The cost of this medication for 1 month is Rs. 1.75 Lacs. However if she buys one months medication the company will give for free the next two months dose. But Rs. 1.75 Lacs is a big amount for any average middle class person to raise every three months. In this case the difficulty is compounded by the fact that the treatment has been going on  for the last 4 years. There is a lot of expenditure but no income.  She has been in support of Aadhar since the last 3 years.
Though we can't spend such a large amount of money for one child from our fund, I am posting this in my blog to request for donations for her treatment. Give whatever you can and whatever you want to give. Don't think - what difference can I make? Even if individually we can't do much, surely together we can raise some amount to help out this little girl and her mother. I admire this lady for her grit and patience. Handling an unhappy marriage is bad enough , but on top of that all this! Wherever she feels there is a chance of getting help for her child she goes and requests help. Radhika is one of the sweetest little girls I have seen. Inspite of the prolonged treatment, there is no sign of anger, disappointment or negativity in this child. Please do help in anyway you can and join us in our prayers for this little girl.
All donations can to be sent to AADHAR . A / 361 Meera Bagh, New Delhi- 110087.
Cheques to be made in the name of AADHAR.
In case of any queries please feel free to contact me on this email. aadhar1998@gmail.com.

This post is to acknowledge the advice and know how I received from Dr Prashant Kashyap who actually started the blog for me. I had no idea what a blog was all about.He showed me how to work it and all the photos and the slide show that is already uploaded is all thanks to him.Thanks Prashant.
Along the way so many people have touched my life and Aadhar and helped in bringing us to the place where we stand today.
And any acknowledgement would be totally incomplete without a special thanks to Radhika and Pradeep Agarwal who believed in me and what I wanted to do simply because I voiced my wish to them. If Radhika had not pushed me along probably this would have remained just that....a dream!!
Thank you God for standing by me in the form of my family and friends.. The Aadhar family is growing slowly and steadily as people are joining in. This is going to be a movement through which we stand by each other in times of distress. Not only by those we know and care for but also by those whom we don' t know and have not even met. To be able to lighten someones burden gives unparalleled happiness. Believe me ! The feeling cannot be described. You can sleep soundly feeling that someone somewhere is feeling a little better because of your action.
Thanks also to all the youngsters who have helped me so much and are going to be the future of this whole endeavor.
Long live Aadhar.

Finally FCRA approved.

The good news is that Aadhar has now got FCRA approval. This means we can start accepting donations from abroad directly. So many people staying abroad used to ask if they can donate and I had to tell them it could only be done in Indian rs . Now hopefully we will get more support.

As this financial year ends we found that this year Aadhar has raised and spent Rs 14,92,503/- on child cancer patients. The number is increasing every month and we need as much help as we can get. Aadhar has also got trademark registration for its name and logo now. So we are indeed moving ahead.

Youth against cancer organized a wonderful party for children on treatment. There was a magician and wall painting done by the kids and the Wall Project group. The children enjoyed themselves and the parents also had some relaxation from their tensions.

The photographs will be uploaded soon.