My little sister

I still remember, it was around november 1996. I was four years old and my new born sister was diagnosed with Beta Thalassemia major. A disease in which the bone marrow is not capable of producing normal Red blood cells (Erythrocytes), it is a genetic disease.

My parents and relatives were worried as they had never heard of such a disease ever. The times were very difficult, my sister was just eight months old and she required blood transfusion every 15 days to keep her alive. The regular medical expenses were very costly. Then my parents visited bombay hospital where they came to know that the only cure to this disease was a bone marrow transplant(BMT). The survival chances were only 50% as the studies were still in experimental status. In bombay hospital none of the patients so far had had a successful BMT. The chances of survival were very dim. Then in 1997 we visited CMC Hospital ,Vellore,Tamil nadu. There thalessemia patients had successful BMT’s which was encouraging.

In that period my sister was just a year old, and used to go through regular transfusions, check ups. She could never go out in the our bunglow’s verandah too. She was deprived of many of those small pleasures that small children had. She used to be always with my mum or my maternal aunt.

In CMC my blood was checked, my blood group is AB+, but her’s was A+ve. It was a stumbling block. My bone marrow matched 99% with that of her’s but there was no surity if it would accepted by the host body, i.e my sister’s. For bone marrow transplants your siblings can be the donors, and getting the prefect match was often difficult. I have seen patients who did not have siblings and that is why their survival chances were as low as 10%. Some of the parents planned a baby to be the prospective donor. And some unfortunate patients died ‘cause they had no donor. It was very dicouraging.

 My bone marrow matched, the doctor was positive to carry out the operation,with just 1% uncertainty. The decision was like a big brick on my dad’s head, he was broken with the diagnosis in the first place and the thought of involving me in that operation was just too difficult for him. Our relatives were equally worried about my role in that. But my late maternal grandpa was by my dad’s side always, it was he who played catalyst in decision making. My grandparents were not supportive at all. But after my dad decided he was very sure and positive about everything. He wanted his daughters to be just as any other normal girls, and for that he was ready to do anything. He wanted to save his daughter, which was a big driving force. 

The treatment started in my first standard summer vacations. First of all my sister was given chemotherapy, she started losing hair, which is one of the side effects of chemo. The time was difficult, as my mother or father were not even allowed to hug her even if she was crying. She was administered her food through the catheter. In the BMT room no one was allowed except my mom and dad. Everything she was fed was sterilised before it was given to her. From her clothes to toys everything was sterilised. I had not seen my sister for five months when she was in BMT. One day i was missing her very much, when the sister helped me sneak in and i saw her. She looked horrible, i could never imagine her pain in that condition, i just knew it was painful.

Then i was admitted, and i had to live in the hospital for two days before my bone marrow was sucked out. My dad was very worried,and so was my grandpa. I was taken inside the OR and as the door closed i could see my dad’s heavy concerned expression. Everyone was praying for my well being. Around after two hours i was taken out to the recovery room. I didn’t remember anything other than the doctor’s face who injected a syringe of the anasthesia liquid, and in minutes i was alseep. I woke up in the hospital room around six.

  

The time i have spent in the hospital was so enormous that i was familiar with almost every patient. I had a friend Harijeet who’s sister had cancer and she had undergone BMT thrice, he was the donor. He was my companion, my guide,my best friend. We used to visit Roshal didi who also had blood cancer. Then there was another friend who had aplastic anaemia. I could converse with anyone ranging from patients to doctors of different languages. Everyone was my friend. Me  and Harijeet used to visit the hospital church everyday to light candles and pray for everyones’ well being. Just a short while after my discharge Roshal didi expired, she had third stage aggressive lymphoma(a type of blood cancer). Then  my other friend with aplastic anaemia also died one night at 2-30 am following a major complication. That day i had seen the doctors face after he came out of the room. It was very trying a time. I could feel death very near to me, in my friends and in my sister and inside me. I was just six years old.

My sister was given my bone marrow,then she also fought her GVHD’s bravely(graft versus host disease). For total recovery she required two full years after BMT. Today i am glad she is fine, and just like a normal girl. During her recovery time i used to tell her stories of how it was outside, how everyday i played in mud with my friends. She used to see me from the closed transparent door of her room. She lost her childhood to the disease, but it was worth the painstaking process.

She is now in grade nine, just like a normal girl. She is  happy, fit and fine. That’s  what i wish for her. My little sister, Aditi.