Helping children successfully fight off Cancer

Clean – that too spotlessly so, bright, cheerful, yellow, green, and happy are the words I would use to describe St. Jude’s.

It took me way longer than expected to get to St. Judes’s; more so because it’s located in a part of Parel that I’m not familiar with. Yes, there’s way more to Parel than Phoenix Mills – as I learnt. Besides there were also a couple of diversions put in place for Lalbaugcha Raja and I went round in circles a couple of times till I finally reached there. Drenched in sweat after walking around in the midday Mumbai sun for a good 45 minutes, I climbed the two floors of the Indian Cancer Society building and I kid you not, was transported to another world! My first reaction to their CEO Mrs. Usha Banerji was, “Oh my God, your place looks exactly like it does in your photos!” And if you see any photos of St. Jude’s premises, you’ll understand how this statement can only be a compliment. Clean – that too spotlessly so, bright, cheerful, yellow, green, and happy are the words I would use to describe St. Jude’s.

And as I learnt as I walked around the venue with their team, cleanliness is top priority here. I was even shown into the bathrooms! Yes, these are spotless too – eat off the floor type spotless. Their reasoning for such cleanliness is simple – wet, dirty bathrooms can spur off infections. And given that St. Jude’s caters to children suffering from Cancer and other life threatening diseases, this becomes a really important step to take.

St. Jude’s mission is quite unique – to provide a safe and clean environment for children to recuperate during their Cancer treatment. These children, along with their families, travel to Mumbai from distant towns and villages, in the hope of being cured at the Tata Memorial Hospital, where they receive free of charge treatment. Unfortunately, while the hospital is able to provide medical treatment to these children, they often have no place to live and end up sleeping on the footpaths outside the hospital, in terribly unhygienic conditions. As we know from our own experiences with people suffering from chronic diseases like Cancer, the environment in which we convalesce is important to ensure that treatment is effective. However, these children, who already have severely weakened immunity systems due to their ongoing chemotherapy, become susceptible to various infections and other diseases which make the treatment they receive at Tata Memorial Hospital ineffective.

St. Jude with its centres in different cities provides free of cost housing for these children and their parents, along with free nutritional support, transportation services to take these children to the hospital, counseling services as well as activities such as ‘art-based therapy’ to keep them engaged and motivated during their time away from the hospital. Their goal is to create a “home away from home” for these children, by providing them with the physical and emotional necessities that will give them a better chance of beating Cancer. Says Mrs. Banerji, “St. Judes isn’t just a roof over their heads.”

The success of their model largely in the holistic care they provide and the level of cleanliness and hygiene that is maintained at the centres. Mrs. Banerji also shared that since most patient families have rural backgrounds, often coming from the poorest of homes where indoor sanitation is a distant dream, it can be quite a challenge to get them to use indoor toilets, especially since they are used to the open fields. She also shared instances of some fathers who had to given up smoking and drinking just so that their children could stay at St. Jude India ChildCare Centres!

Their well-thought of model comprises of 3 “circles”. The first and primary circle is the medical circle. This is their raison d’être. It encompasses both, the willingness of the doctors/hospitals to take on the case, and the availability of funds to pay for the treatment. These needs are met by the hospitals and aiding associations. Once the First Circle’s needs are secured, St. Jude’s steps into the picture; to meet the needs in the Second Circle. These are physical needs: shelter, safety, hygiene, nutrition and transport. It is only after the means to meet these needs are assured, that their action in the crucial Third Circle is enabled. Here the emotional needs of both, parents and children are met through education, therapy and a range of activities that generate a feeling of being cared for, a positive mindset, and a spirit of sharing. Work in the second and third circles seeks to influence behavior, and help speed recovery, facilitating success of the work in the First Circle.

When at the center, I couldn’t help but wonder if other similar organizations existed. Or perhaps the government was doing something in this space too? After all, St. Judes does turn away children every year simply because they cannot absorb every sick child out there. The team shared with me that there were just a handful of similar setups across the city that either provided free accommodation or charged a nominal fee to patients coming from other cities. Like the Sant Gadge Maharaj Dharamshala in Dadar.

Since the opening of its first prototype model centre in April 2006, over 800 children and their parents have been admitted and have benefited from the holistic care provided by St Judes India. They also have a team, known as the occupancy team, which is in charge of allotting rooms to new children and those who need to return for another course of treatment. “It’s like a well-run hotel,” says the Sneha, who is the main coordinator for the Mumbai centers. “We’ve managed a 100 percent occupancy rate till date,” she adds.

She also shared with me a fact that’s a little hard to digest. At one time, their teams actually had to go to the OPD at the Tata Memorial Hospital and convince families to avail of their facilities. Despite being desperate for accommodation, people were skeptical about this “free and safe” accommodation being offered. They were convinced there was a catch somewhere and were reluctant to venture close. So their initial numbers were a small trickle – which of course now no longer is the case.

Typically, a child needs to undergo chemotherapy for 3-4 years – a few months at a time. Says Mrs. Banerji, “Once a St. Jude’s child comes to us, we consider him/her a St. Jude’s child for life. If all funding dries up overnight, we have enough to fund all our current children for 2-3 years. We will need to just stop absorbing new children.”

While St. Jude’s does not charge for any of the services it offers, the families are paying varying amounts for treatment to the hospital. The bed at the hospital is free, but other expenditures include – chemotherapy, medicines (which may be subsidized, not free). It all really adds up – to anything between Rs. 2.5-4 lacs for complete 3-4 years therapy for a child! St. Jude’s helps those at the bottom of the pyramid. They support the hospitals’ “no-charge” patients as well as those who earn less than Rs. 3,000 per month.

They also insist that both parents stay with the child as they undergo therapy. This is extremely important as there is a fair amount of running around to do (hospital visits, application for financial grants, purchasing medicines etc.) and at such a sensitive time, they believe, a child needs all the emotional support s/he can get. Chances of recovery only increase when this support is provided! They also believe that no one is as dedicated to getting the child’s treatment more than his or her parents. This certainly does put stress on the already strained financial condition of the family. And St. Jude’s is also aware of instances where fathers given up their jobs and families have sold off their jewelery to make up for the lack of income. But at the end of the day, it’s all for the children – to increase their chance of survival.

Thanks to St. Jude’s many children are successfully fighting off the disease. From seven centres in Mumbai (with 79 units) , two in Kolkata (29 units) and one in Delhi (22 units) today, they should have fully-functioning centers in Jaipur, Hyderabad, Bangalore and Pune, in the years to come.

Support this organization. Donations in kind are also welcome. However, only things in good and clean condition will be accepted – because as always, keeping infections at bay is important. So be it puzzles, educational toys to keep the children busy during their learning sessions, cloth material to be stitched by mothers in their free time, clothes/bedsheets which can be taken by the families when they go back home. A hygiene kit (a kit comprising of dettol, soap, shampoo) or fruits (important part of diets for ill children) can also be sponsored. Best to speak to the team before you donate in kind though.

St. Jude’s Mumbai has reached a stage where they have been forced to turn away patients because of a lack of space. This is soon going to be the case with their Calcutta and Delhi centers too. Which is why expansion of facilities tops their agenda right now. Your donations to this organization are clearly going to go a long way!

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.