Today had several things that were out of the ordinary. I was alone in OPD and we had a record 51 children who came to the OPD. I had to do a bone marrow and did it alone at around 4 PM – after I had a hurried lunch. The ward was so full that I had to shift the stable children to other wards.
But what I remember most is R – a chirpy 6 year old girl who has a deformed right arm from birth. She had come to us 3 weeks ago with fever and anemia and since we suspected Leukemia we had sent her to CMC for confirmatory tests. She came back with a confirmed diagnosis of Leukemia (Blood cancer) to continue the chemotherapy at our hospital.
The father had bought the medicines for the week and the child was ready to get the drugs through her IV central line (a special line that can be kept for a month to deliver her chemotherapy).
Just before I started, the father made a request that baffled me. “Doctor, please remove the IV line and we’ll go back home.” His reason sounded simple, “I can’t afford the treatment. It lasts three years and there is no 100% guarantee.”
But why the sudden change of mind, I wondered. Was it a genuine question of affordability? Was it the fact that she would be a burden to them? Was it the fact that she was a girl – and had a deformed arm? Were they trying to evade the huge responsibility?
I don’t think I will ever find out the true answer. I spoke to him in detail laying down facts, other experiences and the fact that the present course of medicines were already bought. He rallied back and forth, almost leaving the ward before he decided that we would give the next weeks chemotherapy before making any more decisions.
She got her 6 hour infusion, an IV push and an IM jab and left at 4 PM.
Over the next few days we will lay down the options available for them – including that of free treatment in selected centers, government and charity funding available, etc.
I’m really not sure what they will decide – or maybe the father has already decided.
I don’t think I will ever be able to truly put my feet in the father’s or the child’s shoes and feel their pain, confusion and dilemna. I just pray that whatever decision they make will be a genuine decision – not out of any bias or out of their inabilities.
Is it a question of affordability?
I wonder….