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.

International Childhood Cancer Day

The 15th of Feb i.e. today is the International Childhood Cancer Day. It is an opportunity to raise awareness of children who have cancer and also to advocate for change. One of the huge challenges facing developing countries including India is timely diagnosis, referral and treatment. Lack of awareness among parents as well as health professionals hampers timely presentation. Absence of clear referral pathways further delays the diagnosis and treatment. The child and its family often stagger from hospital to hospital, city to city before hopefully reaching an appropriate treatment centre. Besides the cost and frustration for the family, a delayed presentation is often linked with advance stage at presentation, particularly in solid tumours. This adversely affects the outcome with greater treatment intensity, greater supportive care, greater costs, greater treatment toxicity, greater treatment abandonment rates and poorer outcomes.

The focus of various international (SIOP, UICC, ICCCPO) and national (Cankids...Kidscan) organisations this year is on Access to Care and as part of the access to care Campaign, early warning signs posters created jointly by SIOP/ICCCPO and the International Union for Cancer Control (UICC) have been translated into Hindi, Marathi, Bengali, Gujarati, Tamil and Malyalam by Cankids. In addition, Cankids have also released a site map of centers where children are being treated for cancer in India.

Early Warning Signs of Cancer in a Child

Treatment Centres in India

Childhood Cancer and Gender Bias - Where are the missing girls?

I always enjoy my annual trips to the SIOP Congress which besides being a source of acquiring knowledge, is also an unparalleled opportunity to meet like-minded individuals (who are now friends) who are continuously striving to improve the outcomes of children with cancer across the world. Often at these meetings happened to meet a person or hear a presentation which leaves you spellbound. It was Shalini's presentation at SIOP 2012 in London and this year it was Ritu's presentation at SIOP 2013 in Hong Kong.

Ritu Bhalla is a two time childhood cancer survivor. She was diagnosed with non-Hodgkin lymphoma at the age of 4 years and with Acute lymphoblastic leukaemia at the age of 7 years. She now works for Cankids India (www.cankidsindia.org) and is their assistant awareness officer and girl child ambassador. Cankids is the larger childhood cancer support group in India and works in 34 centres across the country. They provide medical assistance and counselling and emotional support programs. One such centre is the Pt. BD Sharma PGIMS at Rohtak in Haryana. When they organised the International Childhood Cancer Day in Feb 2013, they felt that there were relatively few girls (patients or survivors) present. That was the stimulus to look more closely and identify the "missing girls".

There were 123 children with cancer in Rohtak from 2006 to 2013 who registered with Cankids. 1 out of 3 children at diagnosis were girls. However only 1 out of 13 children surviving at the end of treatment were girls. The was a disproportionately higher rate of abandonment of treatment among girls (14%) as compared to boys (6%). The gender of the child was a risk factor for adverse outcome (mortality or abandonment of treatment). The female gender has been previously reported as a risk factor for abandonment of treatment from India and China but this association is not consistent and studies from Central America and Indonesia did not show the same association. This may be a reflection of the variation of societal prejudices across the world.

Ritu and Cankids now want to take this forward and address the issue with the ultimate ambition of making sure that no girl with cancer in India has any lesser chance of diagnosis and treatment as a boy with cancer. I wish them all the best.

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It is not what you say, but how you say it that matters

So says Hanan El Malla, a psychologist at the Children’s Cancer Hospital, Cairo, Egypt. And very rightly so.  We as doctors are often guilty of so many basic communication errors when dealing with our patients. We don't talk enough, don't talk early enough, don't listen, don't simplify and then there are all the nuances of the way we talk - condescending, impatient, impersonal, lack of empathy. Traditionally, we in India have not paid attention to our communication skills (and have never been trained) and there are still many non-believers among us that remain to be convinced about the importance of communication. This becomes all the more relevant in children with cancer, where a treating physician will have to make several conversations (some difficult ones) with the child and the family over the period of their treatment.

In a study of 304 parents of children with cancer treated at the Children's Cancer Hospital in Cairo, Hanan and her colleagues looked at PARENTAL TRUST IN HEALTHCARE during treatment as a function of the communication with them at the beginning. There were six independent variables which were significantly related to parental trust.

1. Information received about the child’s disease
2. Information received about the child’s treatment
3. Opportunity to communicate with the child’s physicians
4. Being satisfied with the conversational style of the child’s physicians
5. Perception that the child’s physicians were sensitive to the parent’s emotional needs
6. Considering that the child’s physicians had met the parents with care

Further, parental trust in the physician and the medical care was NOT RELATED to the amount of information given to the parents of children with cancer.

Why is all this important? Because communication and trust are so inextricably linked with treatment abandonment. As part of initiatives to prevent and tackle treatment abandonment, one has to address communication.