My Dad had cancer

May 2009, Dad was diagnosed with pancreatic cancer. We were shocked, he was hospitalized and chemotherapy started. Mom went into a shock, we had calls from everyone.

Life was in a roller coaster. Dad was in and out . I managed to run the home with Sush and running to the hospital. Doctor said he will not live much longer. it had metastasized.

We could not do much, we three sisters talked on conference calls. Decided to do what we can for him. Dad was Dad. We never were close to him as much. He was a quiet soul but he did his best or us.

I did not know worst was yet to come..

How it all started

I did not wanted to share my story with the world but my sister wants me to. She says it will help others someday, it might even make many people appreciate what they have today.

where do I begin, I must start from the very beginning before Sush ended up in coma.Her life that was filled with so much , how people loved her in karkala. She loved life , she was always laughing inspite of all the pain she had , medications she had to take, hsopitalizations. she went to school, she went to dance classes like other kids. She love eating bhel , she loved washing clothes with the maids, she sooooo loved animals.

She was born 1998 June 20th, a year after Deeksha was born. Deeksha is my niece that my sister had left in my care for a year, i loved her like my own. Looking after Deeksha I wanted a child of own..Anil was already grow up.

So sushmita , was born, she was so beautiful everyone said. She was 6 months when we noticed her knees twitched all the time and took her to the doctor. Thats the begining of my Journey.

She was diagnosed with having epilepsy. They call it fits in India.People thought it was contagious in India for some time. The endless trips to the hospital began , we started seeing different doctors and were always in some new hospital running a newer test.

My mother was always there with me helping me , as Sush would have seizures sometimes 20 times a day.. it went on like that until she was a year old. Then we hear about Dr P. She was the angel that God sent to me , well I did not think too much about it untill now. At the time she was for me the miracle Doc who helped my child stop having seizures. At least she would not have one that lasted a day.

Now and then she would have an attack in a month, or sometimes in a row in week. some times it would not come for about months. Sush continued growing like any other child with normal fits and excitement. She was slower than others. She had motor co ordination issues, she had learning disorders. but she loved what life enabled her to. She loved people instantly. She loved everyone including the maids that were hired to look after her.

She loved me and that still is the most beautiful thing that ever happened in my life. Her love filled my otherwise empty world. There was nothing in my life as my husband was too busy working and my son was caught up growing up.. sometimes I am guilty that I was never there for him as Sush needed so much hospitalizations.

He loved his sister too much, who would not?? she would call him Anil Anna( Anna is brother in konkani). She always wanted to people to love her. Moke madu she would ask us which meant I wanted a hug.

once my sister moved to US my parents moved with me as I needed help with Sush a lot.

Life was begining to Settle down, I joined Chethana School for kids with special needs. I though life had a new meaning for me now that there was something I could do to help other kids with Special needs. I helped the School collect funds, went to anyone that would donate money to the school. Even made my husband donate hefty amounts to school hoping some how helping others would help me too. Eventually I fell in love with those kids, between my Chethana and Sushmitha my life was going on as smooth as i thought life could be.

I was not content with life. I complained to God once a while, why did you take my sister so far away from me? she was my best friend, my mentor and my sister everything as I was to her.

We always hung out together, we were different than others. We never needed anyone else in life if we had each other for company. Then one day my sister moved to US. My life changed then but i had mom and I had you baby, I had you.

A SMALL RAY OF HOPE

I am very sure she shows tongue now. First she used to look at Dimple for sometime then after her much telling to show tongue she used to bring tongue out(not fully). Then she started showing just by giving command- jeeb dakayi. Even while she was eating sugarcane she used to watch Dimple then wait for her to say kacchu(bite) then again bite and stop again untill she says kacchu bega bega(bite fast) They are changing physiotherapists every month.So what one achieves if other person does not follow that improvement goes.Even they have more patients in thier clinic so thier time is also reduced.So when she is improving I am having these kind of problems.We are now paying Rs 15000/ for month. I think best option is hire some physiotherapist and hire him fulltime.

Sushmitha hospitalised so again that hindered her improvement

Sushmitha had stiffness in left leg. So physiotherapyst Dimple gave extra steching. She developed swelling in vboth legs. So she was given ice pack treatment. This led to severe cold and this again led to fever. She had rapid breathing. So I panicked and phoned my doctor she told me to come immediately. When I thought she was improving I never expected this. Again it will take another week for her to recover. She was much awake in the hospital. So in the discharge summary they wrote she is more awake now which she is. I saw her turning neck and seeing but that is also restricted to one side she turns mostly to left.

Shows tongue.

Today I felt she was showing her tongue after i said zeeb dakayi(show your tongue). I felt happy.But mom said what is the use if she just shows tongue, if she can say amma then atleast ok. I told mom that also she will do. let her do this first.today she has much cough. She has tightness in the legs. So Dimple gave extra stretching. Both the legs developed swelling. Then they gave ice rub to reduce swelling. Now she has cold. Hope it will not increase and cause fever.

Please anyone save my child

Now physiotherapists are giving severe physiotherapy. They are making her sit by holding her hands and bringing them forward. Putting her upside down. with her head down and the lifting her. It looks very scaring to me. God save my child.

Pleae call me Amma which i long to hear

Sushmitha is improving physically. She is gaining neck control.She looks at people now. I dont know if she will call me amma again. Few days back I had gone to Udupi and her face kept coming in front of me. I am just happy she is alive and I will care for her as long as she lives.But I dont know whether being alive is torture for her. I dont know how she feels. I am trying in everyway to make her sit and eat by giving a bit of swallowing but i dont know whether she wants all that. Anitha tells she may not want to sit and talk or she just can be very much tired or she just cannot do all these.But I just want you to call me amma my dear. I want to hold you in my arms once again.