Children living in countries such as India account for 80% of the world's population of children and when these children are diagnosed with cancer, they are currently denied the right to hope for a cure. They struggle under a double burden of their disease and poverty. Cancer Patients Aid Association recognizes this double burden and has initiated steps to help children and parents to provide access to the resources and information they require to ensure their child gets appropriate treatment.
 
The treatment and care of childhood cancer requires the joint efforts of a team working together to provide medical treatment on one hand (surgery, chemotherapy and radiation) and psychosocial support for the child and the family as a whole.

Art Therapy for Children with Cancer

Life for children undergoing the long drawn out treatment for cancer revolves around trips to the treatment centre and hospitals. In order to ease the monotony a little bit, CPAA was invited to run playgroups at various hospitals. CPAA introduced art to distract the children's mind from their cancer related stress. We found that art could be used to help children voice their feelings and encourage communication. A study was done on how to use art as a therapeutic process. Given below is the oral and slide presentation made by Vinaya Chacko, Director, Patients Care Department at the 38th Congress of the International Society of Paediatric Oncology (SIOP) Geneva, 17-21 September 2006.

Download " Art Therapy" Slides

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Coping Mechanisms of Parents Who's Children Suffer From Cancer

A diagnosis of cancer in your child is devastating and probably the most distressing situation a parent will ever face. The parent must find the strength to adjust to this stressful situation. Coping is the effort made by an individual in order to adjust. Over the years, CPAA has interacted and helped countless parents to deal with their children's diagnosis and treatment for cancer and learnt from the techniques used by them to help other parents. Given below is the presentation on the topic made by Meghana Suchak, Counseling Psychologist, CPAA at the ICCCPO Regional Meeting - ASIA, 5-7 April 2007 in Bali.

Download "Coping Mechanisms Used by Parents of Childhood Cancer Patients" Slides

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Budgeted Aid

Cancer treatment can be a huge drain on family finances, even for the relatively well off. Through whatever limited funds we have, we try to disburse medical aid to as many patients as possible. We also find sponsors, help patients network with aid-giving organizations, guide them about circulating appeals in the proper channels, and organize medicines at wholesale rates through a tie-up with chemists and pharmaceutical companies.

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Education Aid

Prolonged treatment for childhood cancer means a draining of resources. One of the first places where families start budgeting is in the education of the child and siblings. CPAA has helped many families faced with this dilemma. The family of Abhsihek Poddar had to move from Kolkata for his ALL treatment. In making the shift, his elder sister had to be uprooted, too. A bright student, her father told her that when compared to the life and death situation her brother dealt with, her own troubles were trivial. She began to show aggressive tendencies and the normally docile child became difficult to manage. CPAA stepped in to get her admission to a well regarded convent school. Generous donors paid for her books, uniform, bus and tuition fees. She went on to shine academically. The good news is that Abhishek recovered completely and continues to do well. The family decided to shift to Mumbai permanently. 

SANTOSH THAPA is a 20 year old boy whose father was terminally ill with prostate cancer. Santosh's father worked as a watchman in a society in Andheri but lost his job due to his ill health. Santosh's mother worked as a maid. Santosh was doing his third year of BCom at a Mumbai college. A bright student, he secured 82% in SSC (2003) and 75% in HSC (2005). Through all the problems, he maintained a first division during his BCom studies. He studied for CA along with his first year BCom and passed in the first attempt and worked part time for which he was paid Rs. 1000/- per month. He expressed his desire to study further towards his CA for which the enrolment fees were Rs. 3650/- and tuition fees for special classes were Rs. 34,551/-. 

A sincere young man, he was determined to study and use that education to improve his life, but all available funds were being used for his father's treatment. CPAA appealed to Asian Paints Charitable Trust and the N.M. Budhrani Trust and an education grant was granted. CPAA also spoke to the coaching classes on his behalf. As a result, the fees were reduced and the administrator agreed to take special interest in Santosh's education. 

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Playgroup (Ernest Borges Home)

The Ernest Borges Memorial Home in Bandra, Mumbai, is a five story building affiliated to Tata Memorial Hospital. The Home provides accommodation for out-station patients while they are undergoing treatment at Tata Memorial Hospital. Every budget is catered to, from the almost free dormitory to five star accommodation with suites. There is also a free bus service to Tata Memorial Hospital, 4 times a day, which is a great help to patients undergoing treatment. Admission is given through the Social Work Department at Tata Memorial Hospital.

Ernest Borges Home shelters a number of children undergoing treatment at Tata Memorial Hospital. On the behest of Mr. Badwe, Superintendent of the Home we run a playgroup for the cancer affected children, whose lives revolve around trips to Mumbai and to and from the hospital. These kids miss out on the normal activities that other children take for granted. CPAA got in touch with Mrs. Neerja Birla who had earlier adopted many patients under our 'Adopt-a-Cancer-Patient’ Scheme and so began the Neerja Playgroup. The first contribution paid for a cupboard and toys.

Subsequently a fixed sum has been spent every month on toys, sweets and treats for the children. CPAA representatives go to the Home every Thursday between 3.30 pm and 6.30 pm to play with the children, and impart some amount of non-formal education. Volunteers from St. Xaviers College Social League have been roped in to teach them arts and crafts. Recently, at the request of CPAA, A.H. Wheeler, publishers, have been donating a large number of Hindi paperbacks for the adult inmates as well as the children.

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Blood requirements

Leukemia patients and those undergoing surgery need to arrange for blood, and that’s not always easy. Very often, in India, even the patient’s friends and family are reluctant to donate blood because of misconceptions about it causing harm. The fear of AIDS has exacerbated the situation. CPAA maintains a databank of willing donors, along with their blood groups. In an emergency, our employees have themselves donated blood. We also try to mobilize donations among the patients’ community, reassuring them that blood donation is perfectly safe.

Leukemia patients also sometimes need transfusion of platelets, the blood cells that help in clotting. This involves passing the donors blood through a cell separator, which extracts the platelets in a process called plateletpheresis, delivers them to the patient, and returns the rest of the blood to the donors’ body. Since only a part of the blood is actually transferred, platelet donation can be done more often than the once in six months allowed for blood donation.

If you are willing to be put on CPAA’s donor list, click here.

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 Grant A Wish Day

Childhood oncology patients struggle with their disease on a day to day basis. The pain, the nausea, the discomfort is a part of their lives for the duration of the treatment. While every effort is made to ensure that they receive the chemo, prostheses, blood components, in short the complete protocol the doctor prescribes, often the small ingredients that make childhood are forgotten.

Every child has a wish, but the desires of a childhood cancer patient are pushed to the background. Recognising this, 
Cancer Patients Aid Association worked with the Sadhu Vaswani Trust to fulfill the innocent wishes of some patients. On Saturday 3rd May, the children were first entertained by a magician, then invited to sing along with Kiran, a talented young singer. Snacks followed. Then the grand finale-each child was presented with the gift they had requested. Each gift 
was wrapped and addressed to the individual child. Immense efforts had gone into ensuring that there were no mistakes. From video games to dolls to cricket sets and cycles-the children were delighted and for an afternoon, childhood returned.

Many thanks to the generous members of the Sadhu Vaswani Trust who made this special occasion possible.

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