Childhood cancer survivorship and late effects: The landscape in India in 2020

Cure from childhood cancer is now a justifies expectation and with the right treatment most children would get cured of their cancer and achieve long-term survival. While the goal is that this long-term survival is normal, experience has taught us that some survivors suffer from late side-effects. This has been an area of intense focus in the last few decades and there is now growing evidence on how to prevent and treat these late side-effect.

So far, the information from India has been limited and scattered. We mad an attempt to bring this all together and are happy to share our recent publication on this in the Pediatric Blood Cancer - Childhood cancer survivorship and late effects: The landscape in India in 2020

We highlight not only the steadily increasing work going on with childhood cancer survivors in the hospitals, but also the efforts taken by healthcare providers, and other stakeholders in developing this service, advocating for this cause and providing survivors with a platform. A special mention of two such organisations - Ugam and Cankids - who contributed to this effort.

We Are One!

Earlier this year, Childhood Cancer International, the largest patient support organization for childhood cancer with 181 member organizations in 90 countries, teamed up with Christophe Beck, famous for his creation of the soundtrack to Disney’s smash hit Frozen, and his 12-year-old daughter to record a new song, “We Are One,” written just for International Childhood Cancer Day (February 15th). While the verses are sung by up-and-coming musical talents including Sophie Beck, Alexa Curtis (winner of The Voice Kids Australia 2014), Livvy Stubenrauch (the voice of Anna in Disney’s Frozen), and Robbie Firmin (Britain’s Got Talent), the chorus is a global choir of all the children who participated in this amazing event! The creative responses have been overwhelming with More than 900,000 children and teens recorded their voices singing the chorus to the song, creating dances, lip-syncing videos, and even creating some amazing covers! Here is the official video below. Enjoy!

Samkisha Foundation - Bangalore

The article from Deccan Herald below brought to my attention Samiksha Foundation which provides support to children with cancer and their families in Bangalors

For a childhood with hope - Deccan Herald

Happy International Childhood Cancer Day

Amaan Shah Foundation for Child Cancer

Amaan Shah is a 11 year old boy from Andhra Pradesh who was diagnosed with Burkitt's lypmphoma. Very sadly, he died while undergoing treatment. His mother very poignantly describes his journey - as only mothers can and I would strongly recommend all us health professionals and parents to read it. It brings to our attention the familiar challenges of delay in recognising the symptoms and diagnosis, the lack of referral pathways, the toxicity of treatment, the inadequate palliation of symptoms, and above all the large vacuum of information and guidance.

Amaan's parents have very bravely and courageously decided to join the cause of children with cancer and set up a foundation in his name Amaan Shah Foundation for Child Cancer. Amaan's mother Asma Pasha says "I don't want all our efforts to go waste, specially MY SON'S... I want to get strong with my emotions and lead for a good cause. What my son..me..my whole family has faced.. i wish and pray Almighty no parents and children should face that. well its all Almighty's command but still our efforts can make a difference".

I sincerely admire how Amaan's family is trying to turn personal loss and grief into a force for change. I wish them all the best.

Aman Tu Mera Hero – a very special musical fundraiser featuring Kailash Kher and his band Kailasa

From Cankids

Aman Saxena, was 17 years old when he was diagnosed with Rhabdomyosarcoma, with a tumor in his throat. He wanted to play the guitar and sing and perform. Instead he battled and survived cancer at AIIMS, New Delhi, even as he became an active part of Kidscan Konnect (KCK– the teenage and young adult survivor group of Cankids), cleared his Class 12 exams and took admission in Desh Bandhu College, Delhi University. Life was looking up for Aman. He joined Jazba theatre group at DU – and at the audition proceeded to teach the group how to sing Saiyan – the right way! For yes – Aman is a huge fan of Kailash Kher. His dearest wish – to meet his hero, to sing like him. Sadly, in February 2013, Aman’s cancer returned and his fight against the disease started all over. He lost his voice, and with it his will. All the other KCK survivors rallied around him, trying to raise his spirits, encouraging him to take his treatment, building up hope. 

In September 2013, planning for a Indian Pediatric Oncology (childhood cancer) conference felicitation evening and fund raiser, we decided to theme it “Tu Mera Hero” –for Aman our hero, for the doctors who were treating him. A journalist friend suggested we needed a celebrity to promote the cause and create awareness. In 9 years of our existence, we have never been able to find one. We told him we would not chase for a Star. When the time was right he would come. 

We put Aman’s wish out there in the Universe – to meet his hero Kailash Kher. And amazingly, a Cankids advisory doctor found a way to him! He agreed to meet the cancer survivors at 6 pm of Sat 14th September but not to be part of our event later that evening. 

It was a dream come true for Aman – a meeting of joy and tears and disbelief. Kailash Kher tweeted “can’t express these kids happiness ...feeling fortunate to be with them.” An hour later, and a phone call from Kailash – and there he was on stage – with Aman and the survivors and the Jazba group – singing, most appropriately for his cancer survivor fans “tere naam se jee loonga – tere naam se mar jaoon” His message to Aman,’ “You can live each day in fear of dying, or live each moment in celebration of life.” 

The very next day, thanks to a generous donor and long time friend and supporter of Cankids, was conceived the idea of a musical evening by Kailash Kher and his band Kailasa. Said Kailash, “It is you who are my hero, Aman. I dedicate this concert to you. ” So moved was he by the young cancer survivors and children, he generously offered to waive his customary fees. 

“Aman - Tu mera Hero” – is a musical concert of heroes; of the hero within; of hope, support and motivation; of celebration of love, life and in praise of God. Of immortality. 

The concert will be held on 4th April 2014 at Thyagraj Stadium in New Delhi, on the occasion of the 13th International Childhood Cancer Day.

The Cankids Pediatric Palliative Care Day Care & Transition Home

I have known Poonam for a few years (www.cankidsindia.org) and watched in bewildered awe as her organisation has gone from strength to strength and now has a national presence. An important part of her efforts has been to establish a Day Care & Transition Home in Delhi. This dream is finally achieved today and the Home, which is located in proximity to AIIMS and Safdarjung Hospitals, has been opened today. I have been there last year when it was being developed and the ambition of the project as well as the attention to detail is incredible. I wish Poonam and her organisation many more such successes.

Brain Tumour Foundation of India

Brain tumours, the second most common group of childhood tumours, pose special challenges in diagnosis, management and long-term follow-up. A close co-operation between neurosurgeons, radiation oncologists, paediatric oncologists, neuroradiologists and neuropathologists is needed for optimal management of these children

The Brain Tumour Foundation of India is a non-profit organisation which is committed to reducing the physical, emotional and financial suffering associated with diagnosis, treatment and rehabilitation of patients with these tumours, and their families. Various health professionals and allied professionals from Tata Memorial Hospital and King Edward Memorial Hospital, along with other organisations in Mumbai who share an interest in patients with brain tumours came together and set up this foundation nearly 10 years ago.

Although based primarily in Mumbai, the foundation is keen to reach out to patients with brain tumour across the country. Its three main objectives are

1. Quality Treatment and Care: Support for chemotherapy drugs, materials/medicines needed during surgery and radiotherapy.
2. Social and Psychological Support: Activities included monthly support group meetings, celebrating festivals, organising art events, producing greeting cards (see figures) educational support, advocacy and other similar activities.
3. Research

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Eeshwar Child Welfare Foundation - Support Group from Lucknow

I hope to use this blog to generate awareness of the excellent work done by the various cancer support organisations in the country. I will focus on those groups which either exclusively work with children with cancer and their families, or who provide support to this group of patients along with other similar activities.

The focus of this post is on the Eeshwar Child Welfare Foundation which was set up in 2005 by Sapna Upadhyaya. They provide assistance to the children with cancer and their families who are being treated at Chhatrapati Sahuji Maharaj Medical University (formerly known as King George Medical College) in Lucknow under the care of the local paediatric oncologist, Dr Archana Kumar. In this time the have supported over 1200 children with direct medical costs (chemotherapy, diagnostic tests), indirect medical costs (food, clothing), access to social and educational services. Currently, the support group is involved in building a "Home away from Home" so that these children who travel from long distances have a suitable accommodation available for themselves and their families.