Three Months with Sohail

Sohail Ansari, an 18 year old boy from Samastipur district in Bihar was admitted to our Centre on 23 Nov 2013 with bone cancer in the left side of his jaw. The tumour had enlarged in both directions and was rotting inside his mouth, emitting a mephitic and nauseating odour. This, compounded with his disfigured face, had led to his social ostracization. He was accompanied by his parents – both were looking bewildered and exhausted by their unending ordeal of witnessing their child in agony.

The son of a village tailor, Sohail was the eldest child with 5 siblings. He was an intelligent school going boy when he noticed a painful swelling on the left side of his jaw, about six months ago. Visiting the local dentist, quacks and doctors provided relief neither in the swelling nor in the unrelenting pain. It was only when the growth began to proliferate inside that an astute doctor in a Patna Hospital suspected something more ominous and advised the family to take Sohail to New Delhi.

With their limited resources, they landed up at AIIMS and finally got registered at IRCH after blundering about in various other departments. Since the fairly rapidly growing tumour compromised his breathing and led to progressive difficulty in swallowing, a naso-gastric feeding tube and a tracheostomy was done at the ENT department.

However, Sohail had already lost a lot of weight and his frail condition would not tolerate the deleterious effects of chemotherapy. It was at this point that he was contacted by a member of CanKids and advised to get admitted to our DC & TH for management of his pain and other symptoms.

From the Pain Clinic he had been prescribed a mere 5 mg of morphine every four hours – but this was inadequate to control his pain. We titrated his dose steadily upwards and gave him adjuvants and cleaned and dressed his wounds. His parents were taught the correct techniques of tube-feeding and suctioning the secretions from the tracheostomy opening. His cough cleared up within a couple of days, he was pain free and the putrefying smell that had permeated the wards gradually subsided.

Every morning he did a Namaste and attempted a lopsided grin to show that he was comfortable. For any problem he would write short notes in a copy – he had a remarkably neat handwriting. Gradually the care-worn expression of the mother faded away and the father too started interacting with other members of the ward. During our Christmas celebrations the father was very active in putting up the decorations and Sohail sat through the proceedings – although he could not eat anything.

 One sad day the parents were informed that no further treatment was possible. All three were deeply traumatized and went into a period of depression. We empathized with them – in fact, Sohail needed antidepressants before he became less withdrawn. As a last measure, the parents started looking around for alternate treatments. We did not actively dissuade them, but advised them of the various pros and cons of such approaches – the physical discomfort of going to faith healers and the financial motives of all charlatans. Eventually, the futility of these ventures dawned on them and they then did not waste their energy or resources any more. 

 

Sohail was with us from 23 Nov 2012 to 26 February 2013. His family back home were very keen to see him. Much against Sohail’s wishes, his parents booked rail passage and went back to Bihar. We provided them with a suction machine, pillows and blanket, ripple mattress and back rest and travelling expenses. He was also given milk, yoghurt and sattoo during his stay.
  

When I went to him to wish him farewell, Sohail looked up and gave me such a soulful look that moved me to tears. That look was akin to one Autua gives Adam Ewing in the film “Cloud Atlas”. It was look that spanned the spatial and temporal gap between the two of us. He looked at me maybe just for an instant but it seemed to last an eternity.

 
I kept in touch with the family over the phone advising changes in his medicine regimen. Sohail was actually quite happy to be back amidst his family.

One evening I got a call from the father that Sohail had breathed his last earlier that day. He had walked around his home, beckoned everyone to come near him and peacefully passed away.