May 17, 2007

Shehar Bano Khan writes about a 12-year-old boy who suffered two types of cancer

Death –– that harsh yet inevitable face of reality touches people in more ways than one. In Faizaan’s case, it terminated his life leaving behind a family that died in some way with him. Life for the Jafris ceased to be the same, and the irony of it all is that life has to go on.

On March 5, 2007, 12-year-old Mohammad Faizaan died of cancer. He had been suffering from two types of cancer –– colon cancer and glioblastoma, a primary brain tumour. Colon cancer found rarely in children had been successfully treated, but glioblastoma, a malignant brain tumour, had recurred in Faizaan, causing him to finally surrender after fighting the fatal disease for over a year.

He had had five major surgeries in 18 months and had been through extensive chemotherapy. According to his doctors, Faizaan was one of the few children in the world to be diagnosed with those two types of primary cancer. His parents had been desperately hoping for groundbreaking research in glioblastoma in some corner of this world so that they could at least be equipped to fight an evenly keeled battle.

His parents sorrow was beyond the pale of description, but their lifeless expression said it all. His mother’s tightly clenched fists opened every time she heard a sound outside the drawing room. “I can’t believe he’s gone. Every time I hear a sound on the second storey of the house I feel that he’s still in his room, or sliding down the banister,” said Mrs Jafri, overwrought with emotion to speak audibly.

“My children and household were neglected for as long as Faizaan was under treatment. Our focus was Faizaan and he was our world. The other children of course felt neglected,” conceded Mrs Jafri.

His younger sister looked perilously weak and the elder brother, barely 15 years old, did not know how to console his parents. The vulnerability of the two children, trying to bring some solace to their parents had a strange irony to it because they themselves needed to be comforted, loved and reassured of their parents’ resilience to overcome pain. But two months on the pain lingered.

“I still can’t believe he’s gone. We spent all that we had, tapped every resource, but in the end you are left like a helpless observer distant from your own flesh and blood because you can’t do anything,” said the father, Zafar Abbas Jafri.

What was remarkable and extraordinary about Faizaan was that he knew about his condition and refused to give in to melancholia from the moment his mother, broke the news. Making use of the technological advances, he sat in front of a computer and looked up the two types of cancer on the Internet. “I didn’t understand anything. It was all too difficult,” said Faizaan in a casual talk with this scribe a couple of months before he died.

A few months after being operated for colon cancer, Faizaan was told he had glioblastoma, a malignant brain tumour. That, of course, did not mean much to him except that it was another kind of cancer. The dynamics of the recurrence of brain tumour remained Latin to him.

Glioblastomas tend to grow rapidly spreading into the surrounding brain tissue and often cannot be removed surgically. Glioblastoma, also known as metastatic brain tumour, is much more common in adults than in children.

According to the Department of Radiology at the State University of New York’s Health Science Centre at Syracuse, ‘glioblastoma multiforme is a highly malignant brain neoplasm that is very rarely discovered in childhood but accounts for approximately 17 per cent of intracranial tumours in adults. Only approximately 25 children with glioblastoma multiforme in the cerebellum have been described in the literature.’

Faizaan’s last report, taken as a second opinion from a consultant neurosurgeon practicing in London, sadly confirmed ‘a high grade glioma Grade IV…… and a recurrence of a small focal tumour….’

“He didn’t cry or do things expected of a child his age. He just looked at me blankly when I told him he had cancer and had to be treated,” said the bereaved mother. “To tell you the truth, were it not for him our entire house would have collapsed. He had been very brave about it all and didn’t let us feel that we might lose him one day. His last surgery was on October 9, 2006 in London, where Dr Simon Stapleton carried out surgery to remove tumour from his brain,” recalled Mrs Naveed Jafri.

In memoriam to Faizaan, Mr Zafar Abbas has decided to set up a palliative centre either at the Mayo Hospital or the Anmol Centre. “It is essential to help people deal with pain. That’s what I realised after finding out about Faizaan’s cancer. The availability or non-availability of treatment is one thing but managing pain is another. I want to set up such a centre which will help children in Faizaan’s condition to deal with pain and trauma,” affirmed Abbas.