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Submitted by Dr S. Patel on 15 February 2018
A child with cancer with his parents

Javed Khan and his wife describe their 14 year old son, Tavish’s journey with cancer - from diagnosis to treatment and the support they received from Accesslife.

5 months ago, Tavish started complaining of knee pain in his left leg. He was an avid hockey player and noticed frequent falls during a game and while riding his bicycle. Initially the pain was dismissed but soon it grew more intense and would be worse at night time. Tavish would often be unable to sleep all night due to the pain and discomfort. After seeing a GP and Orthopedic doctor and even getting an MRI done, no problem was detected. Finally a biopsy was done which revealed Osteogenic Sarcoma in the left leg.

We become very worried and kept the diagnosis from their son. We have no history of cancer in our family so didn’t understand how this happened. We were referred to go to Tata Memorial Hospital (TMH) in Mumbai for treatment. We lived in a small town called Amravati in Maharashtra, which had limited treatment options for cancer.

In November, 2017 we arrived in Mumbai and headed straight to TMH. Tavish had further testing done and was started on Chemotherapy. After the first few days, we started looking for affordable housing and our social worker told us about Accesslife Foundation. We have been living with Accesslife since then and Tavish has finished 4 cycles of Chemo now. He has an appointment in 2 days when the Onco-surgeon will assess him for surgery.

The Chemotherapy so far has been helpful in reducing the swelling on the leg and bringing back flexibility of the knee. However, the Chemo has several side-effects. After each cycle, Tavish would get fever, weakness, irritability and continued sores in his throat. With any fever reaching above 99.50C, he is rushed back to the hospital for analgesics and antibiotic shot. He has also lost all his hair and battles acid reflux and constipation. His doctor has educated us on all the side-effects so we were prepared but seeing a child suffer is never easy. Tavish’s appetite usually does not return for almost 7-8 days after a Chemo.

We have to force him during that time so that he does not become weaker. Handling an irritable child is additionally difficult. Regarding his diet, the doctor and dietician has recommended feeding Tavish every 2 hours. Lots of fruits, eggs, dry fruits etc. are suggested. At least 3-4 liters of water and 1 liter of milk is a must! Certain nutritional supplements are also given when he is particularly weak.

He is currently on multivitamin syrup, antacids and laxatives that he takes daily. We feel that there has been 80% improvement post the Chemo and Tavish often tries to even walk without crutches now, but his doctor has advised against it. We are hoping that surgery is not required and that all the cancer has been cleared with the Chemo itself.

We have a younger son who we have left behind with a relative in Amravati and we miss him a lot. Staying in a home-like environment has been very helpful and economical.

Our advice to other parents would be to stay calm and take steps immediately so that time is not lost. We wish we had more awareness so that we would have avoided wasting those few months when his pain first started.

Girish Nair, the Founder of Accesslife tells us how he got inspired to start his NGO. "As a volunteer at a cancer organisation, I visited Wadia hospital in Mumbai and saw several patients & their families sleeping on the floor or on the sidewalk outside the hospital due to lack of funds to stay at a hotel. I realized that such families often abandoned treatment due to this inconvenience. After securing a place where we could house cancer kids and their parents, we soon realized that hygiene education, a working kitchen, food supplies, and transportation too had to be arranged. We now have 3 facilities that house about 34 families; each family stays for an average of 6-8 months totally free of cost.

We don’t function like a typical NGO and tell them this is their second home, says Executive Director Ankeet Dave. Our motto is to keep parents happy so that the child is also happy! The goal is to provide them a stress free environment so that they can focus on their child and treatment. We have various recreational activities that happen daily such as yoga, music, art therapy, meditation etc for both the children and their parents. We even have nuns coming from a nearby school now to teach the kids once a week.

Along with their physical needs, their mental health is also addressed by psychology counselors who attend to all the patients says Director, Dr Suresh Sundar. This helps tackle issues such as depression, stress, anxiety etc which is commonly seen in caregivers and patients.

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