{mosimage}Date: 2nd November 2008
Time: 10:30am thru 4pm
Venue: CSI School for Deaf and Dumb – Chennai
Rajee reports:
We planned to celebrate Max’s birthday on the 2nd November 2008 with children of CSI School for the Deaf. This is what it is called – not hearing impaired or anything like that. This school is located in Chennai near Marina Beach. I take this opportunity to thank the headmaster and the lovely children who encouraged us in every way they could. We gathered there at around 10:30 am that Sunday morning .The group included GIPAP members – Friends of Max Chennai, their caregivers and doctors.
Adds Sriram:
We had already had one celebration for Max’s Birth Anniversary on the 19th of October with the children at the Adyar Cancer Institute (CI). We had distributed kits with useful items for all the children in the ward but since Viji was in Chennai this time around, we had planned to meet up with a bigger crowd and have a planned meeting along with the doctors.
Know what, dear readers? The edifices and structures of the school were over 150 years old. We were so impressed by the beautiful architecture of especially one big building; sadly, it has begun to crumble and fallen into a sorry state of disrepair. The grounds are huge with lots of trees. It is indeed quite difficult to find such places in Chennai, that too near the Marina. As part of the day long FOM meeting we had arranged for lunch for all the 130 plus children of the school and already we could see some of them going about their daily routine; cheerful and energetic.
So there we met on the 2nd of November, a crisp, unusually cool Sunday in Chennai. Viji was accompanied by Venkatesh (Appa). Geetha who is the patient coordinator at the Adyar CI also joined us. The core group – Sasi, Vedamuthu, Ashwath, Rajee, Venkatesh (Royam) and myself were the early birds at the venue. We started with the registration where my mother Mrs Jaya , Rajee and Geetha handled the responsibility while others were busy with arranging the material and putting up banners and setting up the tea table. Royam and Anu had arranged to bring all the refreshments we had ordered for the day. Slowly people started pouring in and started having tea and snacks after registration. It was nice to see a lot of new members and their families joining us. The members started interacting with each other. Dr. Bharath who was earlier with the Tata Memorial hospital, Mumbai also joined us.
Rajee continues
At registration we gave colored name tags to each member and there was curiosity as to what could be the reason behind this.
The day’s program began with the National Anthem as all our FOM meetings do and then it was over to Sriram’s introduction to the gathering about the purpose of this meeting. He explained the agenda as follows:
- Introduction by Sriram and Vedamuthu
- Presentation by Viji aunty
- Doctor’s address and FAQ’s to be answered by them
- Lunch with School children
- Interactive Workshop
- Celebrating Max’s Birthday with a cake cutting ceremony
The introduction by Sriram and Vedamuthu explained why we gathered in this school; what was the occasion; what meaning Max‘s life held for us and how we were all related.
It was a fact that we are all benefited by GIPAP. Novartis is helping us with Glivec at no cost and The Max Foundation looking after the welfare of all the people in the programme; seeing we got the medication on time and putting us in touch with each other. We were celebrating the birthday of Max who is so close to our hearts. It’s because of him and his courage that so many of us are having a simple and happy life.
Sriram takes over:
Our introduction was followed by Viji thanking all those who had come. By now the doctors had also begun to come in and we began the patient testimonial sharing session where Vedamuthu, Venkatesh, Rajee, myself spoke. Dr.Ramanan, who was so dear to all of us, Dr.Rejiv and his wife and Dr.Biswajit from the Adayar Cancer Institute were happy to take over from us. Dr.Ramanan spoke about the criticality of having the medicines regularly. He stressed upon the importance of regular follow up and the need to respect the guidelines of the programme. Dr. Rejiv had interestingly prepared a list of Q&A for us. So through our questions he gave us all the answers we were looking for. This was followed by Dr. Bharath and Dr.Biswajit. The Bharath shared his experiences looking after CML in Tata Hospital. Dr Biswajit invited all of us to participate in the conference the Institute was having later in the month. Now it was time for the Panel Discussion where all these specialists answered almost all questions raised by us. Must say it was very informative and to hear it from the Horses’ mouth (Oops Dr’s mouth) was the icing in the cake.
It was almost noon by then and the Children (Boys and Girls) had assembled outside the hall to catch up with us. They sang a song for us. The head master of the school introduced us to the children. Then while Viji was elaborating about the purpose of visit (About Max, Friends of Max), the head master was translating the same through sign language for the children. It was quite heart warming to see them all.
Rajee echoes Sriram’s sentiments:
Before breaking for lunch we met the kids, who had just finished their lunch. It was overwhelming to see how beautifully they communicated their feelings to us. They were no other children we had ever met before. Their disability was surely proved to be a different ability as they included us in their prayers and showered their love upon us and made us believe that together we can learn to live happily.
After lunch, Viji aunty gave her presentation. During the morning session as she was getting ready to show it us via her laptop the power had gone off and the doctors had so sportingly agreed to begin their session and now it was her turn. Her power point presentations had pictures of FOM meetings from other parts of the country and it was great to see all that.. She went through the slides that gave us more information about Max, his family, Novartis and Glivec and how the programme functions – what is our role in this assistance programme and how we should be responsible for ourselves. Viji Aunty’s words always are so refreshing. She also emphasized on taking medicines on regular basis. This made me wonder why and who is not taking medicines regularly for as far as I am considered I thought doing what your doctor says is mandatory for a healthy lifeJ and Novartis was providing this to us as a life long commitment. We had to respect it with our discipline. Aunty also played a cd with Pat’s message to all of us all the way from the US as well as Param ‘s Bangalore presentation – a video montage of the first All India meeting in Bombay set to a very moving song in Kannada. The video had the song’s lyrics in English and it was very apt for the occasion.
Now came the part when we understood why we had name tags with different colours !! We were in for some hard work for it was time to do a small workshop by splitting people with same colored tags into groups. Aunty asked each group to discuss their plans amongst themselves for FOM Chennai and come out with a with a project proposal. It has been a desire in all our minds to do something together , to give back some of the comforts and blessings we have got from GIPAP so this was a chance for us to share our ideas and put some form to these thoughts .
Chart papers and pens where distributed to each group. Each group had discussion on how we can improve the group activities and reach to more people from Tamil Nadu. A lot of good ideas came pouring out from this session.
Some of them are:
- Meets should be conducted in other towns like Coimbatore, Trichy and Salem to increase participation from all districts.
- We definitely need to have a central database of all the GIPAP members with their recent phone numbers and address.
- Volunteers of the core group could meet with the doctors and get training to be of help to those who needed guidance and informational support
- These volunteers could establish a good working relationship with the stockist and coordinators in the hospital so newer entrants could be trained in programme guidelines
- They could also establish these contacts according to their hospitals.
- Volunteers could plan field trips to the interiors once they were trained with all information to spread awareness
- One group could take the responsibility of helping Max India with translating their education material into the regional language
- It was suggested that all members be interactive and share each others’ phone numbers and e mail ids ( if any) and make an effort to meet regularly and be in touch – celebrate birthdays and anniversaries together
- There are a lot of people who don’t have enough money to come to collect their medicines. Some quit the program due to this. Whoever can donate, can give their contribution to the Friends of Max Trust that had been formed to help people from financially challenged backgrounds.
Sharing of our group session was a fun, noisy experience with many responses and suggestions being added to all that was being shared. Viji Aunty moved from group to group guiding and leading discussions from one to another.
Then it was Party Time and we cut Max’s Birthday cake celebrating our togetherness and remembering Max who is the reason for this togetherness.
Sriram adds that this was Chennai FOM’s SANSANI (Sensational News)
It was quite an eventful day ending with the children wearing their party caps and blowing whistles and cutting the Max’s Birth anniversary cake. Then all of us had the cake and the snacks and then called it a day.
Special thanks to so many of our new family members who had come for the first time. We all look forward to meeting as often as possible to take forward our thoughts into effective action
Reported by Sriram Ranganthan and Rajee Nedunchezhian