Monthly Report, July 2000

A Letter From Israel

Readers of CPAA’s Monthly Report are familiar with Benhur Joseph and his parents. Here are excerpts from a letter from his father, Reuben, which recounts the 4 1/2 year long struggle against his son’s disease. This moving letter provides inspiration for all of us.

18/7/2000
Jerusalem.

Dear friends at CPAA,

Got your Email requesting for some details about Benhur and his illness, which could encourage a lot of people. Any parent in our position would have done the same thing for their child and we have had our ups and downs and times of frustration. But we have kept one goal in mind come what may and that is the survival of our child. This obsession has kept us going even when under tremendous stress.

Benhur was first diagnosed as having ALL (acute lymphoblastic leukemia) in February 1996. He was admitted to Hinduja Hospital with gums bleeding and a platelet count of 9000 on 10^th May 1996. Induction, the first stage of treatment was started immediately. This is the most frightening stage of treatment in cancer. Benhur started losing weight, his hair fell in clumps and his blood count remained dangerously low. His appetite was zero and every time he ate he vomited violently. It was heart wrenching to see him in pain always, but we focused on his survival and tried our best to not get emotionally devastated.

I was working at Hindujas in the Engineering section and so there was no financial strain on us. Financial stress can be one of the worst attacks on a family. Benhur also had Central Nervous System involvement, which required him to have 20 sittings of radiation treatment at Nanavati Hospital. Radiation has its own side effects and so we had to see our son once again suffer. To keep Benhur in a good mental state, we would give him an incentive every time he went through the treatment with a brave mind by giving him toys, books and special food. Benhur slowly started getting better and finally was discharged from hospital after one and half months with his bone marrow in total remission.

Then started the second stage of the treatment known as Consolidation. This involved taking Benhur daily to the hospital at first and twice or thrice a week later. Traveling had to be done only in taxies since public areas were still forbidden because of the risk of infection. The savings of the family slowly started depleting. However, we decided we would make things work. This stage of the treatment takes about two years. Benhur missed his academic year. We used to get his studies at home and my wife would teach him his subjects. But this was not possible at times since Benhur was weak and tired. Benhur drew tremendous strength from my wife, Leah, especially when going for his Bone Marrow Aspirations. This is one of the most painful procedures of the treatment in which marrow is removed from the bone to check its condition and stage of the disease. All throughout the consolidation stage of treatment Benhur’s bone marrow remained in remission. This was a big encouragement.

Now the financial position of our family worsened and I had to think of an alternative job. So at the age of 41 I went back to sea, my old job, which involved doing all the stipulated courses and exams to get my certificate revalidated. I went back to sea in 1998 February.

In the meanwhile the 3^rd stage of the treatment, the Maintenance stage started. Benhur was attending school regularly, though he had to remain back in the same class. Leah took Benhur regularly for the treatment. All his doctors felt that Benhur was doing very well and would complete his treatment soon.

In August 1999 Benhur’s treatment was completed. After four years we could breathe freely. I had decided to join a foreign company and was supposed to fly on 24^th November to Singapore. Benhur was not due for a checkup but I requested my wife to take him for a checkup to set my mind at rest before I left. Our world came crashing down on us once again on 23^rd November 1999. Benhur was diagnosed as having had a relapse of the disease. The doctors told us we had to take Benhur for a Bone Marrow Transplant urgently. Even so, the chances of survival given to us were only 20%.

A Bone Marrow Transplant is very expensive. In India it costs Rs.11 lakh, in UK 70,000 pounds and in the USA $1,80,000. And all this is only possible if there is a donor. We had no other children, who would have been the best choice. Benhur was again admitted to the hospital. Frustration set in. Where would we find a donor, the money and who would take Benhur’s case?

We went to Tata’s for the bone marrow matching and the biggest surprise was that Leah my wife matched Benhur 100%. We consulted Dr. Saikia, the leading Bone Marrow specialist, at Tata Hospital. He advised us to do the Bone Marrow Transplant under Dr. Shimon Slavin at Hadassah Hospital, Israel. But he did not know how to contact him. God intervened again. In walked Dr. Das who had Dr. Slavin’s e-mail address. Then started dialogues with him to get Benhur to Israel for his transplant. Prof. Slavin agreed to take Benhur’s case, the cost of treatment would be 77,000 US dollars. All arrangements were made on e-mail.

I had gone to Dr. Mrs. S. V. Kotwalliwala’s clinic to do Benhur’s chromosomal tests. There I read an article by Mr. Marzban Adeshir whose daughter had been treated successfully in London. He approached organizations and colleges for funds for the treatment. Mr. Marzban Adeshir was instrumental in putting me on track of how to go about things. We approached the CPAA to help us. This was the best thing that happened to us. We also approached Benhur’s Principal who circulated appeal letters. Funds started pouring in and 50,000 US dollars were collected. For the rest we put up our house for mortgage against a loan of 20,000 US dollars.

Benhur’s health deteriorated on 25^th December 1999. On 31^st December 1999 when the world was celebrating the new millennium, Benhur started bleeding profusely from the nose. This is a bad sign and the doctors were worried. Fortunately, the bleeding stopped. Benhur went back in to remission on 6^th January 2000. Once again there was a ray of hope.

Being Jews, we had applied for migration to Israel. The formalities normally take 6 months, but our papers were put through in 25 days. Benhur was discharged from hospital on 7^th January after a months stay. We packed, cleared all our government affairs and on 13^th January flew to Israel where we were received by our relatives. We were taken to our home in Jerusalem given to us by the Jewish Agency.

The same afternoon we met Prof. Shimon Slavin. We were explained the full line of treatment and after a few initial tests Benhur was admitted on the 17^th January. After some pre treatment the transplant was done on the 30^th and 31^st January. All went well and Benhur was discharged on 21^st Feb. We then had to take Benhur regularly for check ups.

On April 19^th Benhur was again admitted with high fever and severe body ache. Tests revealed that the disease had struck once again. During the 15 days it took for the doctors to come to a conclusion about the further line of action, all we could do was pray. Benhur grew weak and thin and very depressed. The doctors finally decided to do a splenectomy. Benhur again had to undergo a major operation of 2 hours. The splenectomy was carried out in end April and Benhur was kept under observation in the hospital for a month. Finally in early June he was discharged once again in good health.

So we come to date. The position today looks good and Benhur is in good health. He is yet weak and thin and has to put on weight and eat well. This will take time and we will wait. We are here in a strange land, with a strange language and strange ways and no source of income except the support given to us financially by the government. But God willing we will see our son through this and hope to celebrate his Bar Mitzvah in 2002 January which is the ceremony to celebrate the coming into manhood for a boy at the age of 13 in the Jewish faith. We wish this story to be made known to people who are going through this ordeal and we hope they draw courage from this experience of ours. We know it is not easy but FIGHT and you will succeed. And to you the CPAA team. We could not have done this without you. God will bless you and your families for this Godly work you are doing. I can only say thank you and keep it up.

Your friend always in debt,

Reuben

Department Reports

Cancer Awareness Programme

During the month of July awareness lectures were conducted in BMC Bhandup S Ward and Kandivli R Ward and at the Income Tax Department’s Main Branch at Marine Lines. 5000 people were covered in the talks.

As a part of the Anti-Tobacco educational initiative for schools, a talk was given at the Hindi Vidya Bhawan. Many such talks have been scheduled for the next few months in an effort to educate school children on the hazards of smoking and chewing tobacco.

CPAA employees were the audience at a talk held at the Srimati Panadevi Dalmia Cancer Management Centre by members of the organization SEVHA. Ameeta Kalokhe and her friends are a group of students attending college in the US, who come back every summer vacation to address various schools in Mumbai and Gujarat with an interactive, thought provoking anti-tobacco lecture. The lecture was indeed very informative and we wish to thank Ameeta for taking time off from her holiday to share her experiences with us on two occasions.

Prevention and Early Detection

After a change of guard from Ms. Viji Venkatesh, who left CPAA last month, Ms. Neeta More and her team continue to organise the highly effective Early Diagnostic departmental activities. 10 camps and 13 OPDs were held during the month of July.

6 camps were held for Rotary Club of Mumbai, Queen’s Necklace and 2 camps each were organised at Ghatim Safala and Aga Khan Jamatkhana, Mazgaon. A total of 416 people, 229 males and 187 females were screened in the camps. 105 were advised follow up. 23 OPDs were held. 66 males and 122 females were screened. 53 people were advised follow up. One case of breast cancer was detected at the Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre. 31 women were screened under the Well Woman Clinic programme and follow up was indicated for 11.

Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre

The Smt. Lila Kishanchand Shahani Clinical Diagnostic Centre screened a total of 187 patients during July. 524 tests were performed, out of which 422 were pathological tests. 3 free tests were performed. 14 sonography, 41 x-ray and 47 mammography investigations were carried out. 38 free mammographies were done under the four Well Woman Clinic OPDs held during the month.

Insurance

17 new policies were registered in July, bringing the total to 6465. 50 people were examined, 24 males and 26 females of whom 15 had come for the first check-up and 35 for renewal check up.

Patient Care

At Smt. Panadevi Dalmia Cancer Management Centre

64 new patients were registered during the month of July, 33 under the Aid category, 26 under the Adoption category and 5 under the Special Adoption category. Out of this number, 18 children were registered. 294 patients were aided, counseled and given guidance. 150 patients availed of ambulance facilities. 100 sets of clothes and 88 packets of Complan were distributed. 13 home and institutional visits were made. Donations amounting to Rs. 50,500 were collected and Rs. 2.62 lakhs were disbursed. Four of our patients expired during the month.

The importance of an optimistic frame of mind in cancer patients in effectively fighting their condition has been reported in several research papers. CPAA organized a lecture covering the concept of Silva Mind Control for patients and employees. Many thanks to Mr. Bimol Rakshit, Director, Silva Method, India for his revealing inputs and for granting a scholarship and paying special attention to one of our patients who benefited from the complete Workshop, emerging with a positive attitude.

Vijay Pande is the 18-year-old brother of Vikas Pande who was suffering from ALL. Totally immersed in Vikas’s treatment, their parents had no time to attend to Vijay who appeared for his SSC examination this year. With absolutely no support from any quarter, Vijay managed to secure 67.5%. When most children’s parents were assisting their children with college admissions, Vijay’s parents were at Vikas’s bedside where he lay in a critical condition. It was his last wish that Vijay should get admission in the science stream. CPAA was able to help realize the family’s dreams by securing admission for Vijay in Chandibai College, Ulhasnagar through the intervention of Mr. Gulab Malkani and Mr. Ashok Advani. CPAA wishes Vijay the very best in his future endeavours.

At Tata Memorial Hospital

190 patients were aided, guided and counseled by CPAA’s Halima Aurangabadkar at Tata Memorial Hospital during July. 18 ward visits were made. 150 packets of biscuits were distributed. 4 patients were given clothes. 3 kgs of sweets were distributed. 15 referred cases were helped. 7 children were given toys and 3 patients were given Complan.

Mrs. Farhat Jasani visited the children’s ward on 28^th July. She distributed toys, t-shirts and biscuits to 30 children undergoing treatment there. These visits go a long way in bringing joy and cheer into the lives of these brave children who are gamely fighting their disease and are also much appreciated by the patients, their parents and staff members.

CPAA’s regular playgroup at Ernest Borges Home in Bandra got support from Cadbury’s in the form of a donation of chocolates every week for distribution to children who attend. Thanks to Mr. Bharat Puri and Mahrukh from Cadbury’s, the children now have another reason to look forward to Saturdays!

At Bai Jerbai Wadia Hospital for Children

22 new patients were registered during the month. 366 patients attended follow up of whom 94 patients are undergoing chemotherapy. 10 patients were counseled and guided and 3 patients were visited in their wards. 2 group meetings were held about cleanliness and diet during the month. 30 packets of puzzles and toffees were distributed.

Mrs. Laltia Savoor and her daughter, Anjali visited the ward along with Ms. Zakia Topiwalla on 11^th June. She distributed puzzles and toffees to the 20 children there. This follows the visits of Mr. Murgan and the Choksis last month.

Rehabilitation

The Rehabilitation Centre adopted 9 new patients and relatives this month. A total of 79 patients were helped. 10 cases of mastectomy were attended and breast prostheses were provided. 159 patients were given rations worth Rs. 20,063. Rs. 24,990 was spent on teachers’ salaries, for patient education and vocational training. Rs. 93,394 was spent on patient wages and Rs. 41,764 was spent on welfare activities, conveyance and diet supplements. The Rehabilitation Centre’s total income for the month, exclusive of CPAA transfer, was Rs. 3.34 lakh.

Items produced by The Gift Shop of the Rehabilitation Centre were included in the brochure of products from different establishments participating in the scheme run by HSBC Bank for their credit card holders. The brochure reaches 3.6 lakh members who will be able to purchase Rehab Centre’s products and also learn more about CPAA’s activities.

New entrants to the Rehab family are Chandramohan and Rupali Bagul, siblings from Mirzapur, Uttar Pradesh. In August 1999, their mother was diagnosed as having breast cancer. In spite of treatment at the Civil Hospital, the disease went from bad to worse until they were advised to go to Tata Memorial Hospital as her only chance of survival. Their father ran a general store there, but the family immediately sold everything they had and came to Mumbai. Chandramohan had completed his 12^th standard and had done part of a Financial Management course by correspondence from Chennai and was employed in a TVS Suzuki dealership where he worked as a computer operator, largely self-taught on the job. In Mumbai, their funds had run out, when Chandramohan heard about jobs at CPAA’s Rehabilitation Centre. He started out helping with small jobs in cutting and screen printing, when he came to the attention of Ms. Manju Gupta, head of the center. Impressed with his qualifications and appreciating his abilities, she promoted him to his present post helping with accounts. Rupali too helps with the day to day administration of the center. Their mother is undergoing radiotherapy preparatory to undergoing surgery at TMH. It is creditable that in the face of adversity these siblings have taken the opportunity given and come out successful. Congratulations to this hard working pair!

New Projects

Cancer Patients Aid Association, Contests 2 Win and Pepsi came together with a novel approach aimed at younger adults. The game was intended to stress that tobacco abuse can lead to many different kinds of cancers, Head and Neck, Mouth, Throat, Lung, Kidney, Stomach and Colon and in a wide spectrum of people from different backgrounds, from a little boy to a young adult and from a businessman to a professional lady. In a variation of the regular games, the reward this time was a "virtual contribution’ made on behalf of the participant by Contests 2 Win and Pepsi to a fund for CPAA. For every game played Rs.5 was contributed to the fund. A mark of the popularity of the game was that as many as 8119 responses were registered from June 26^th to July 17th. We thank Mr. Ranganath Thota, Ms. Sangita Iyer and their team at Contests 2 Win and Mr. Arvind Kumar at Pepsi. Interactive games of the kind described will go a long way in convincing impressionable youngsters about the dangers they expose themselves to when they embark on the road to tobacco addiction.

Announcing CPAA’s Chat

On July 15^th, CPAA’s website, www.cpaaindia.org introduced the chat facility, "Cancer Talk". Visitors to the site can chat with CPAA representatives, doctors, counselors and survivors. Doctors from Jaslok, Nanvati and Hinduja Hospitals are involved on different days of the week, covering various aspects of cancer treatment.

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