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Pilocytic astrocytoma

Published on March 15, 2018 in Share Your Story

My name is Ruby. I am from Nepal born in middle class family. I am sharing my small sister’s experience who is now 11. On January 2016, my small sis was suffering from headache, nausea, and vomiting. She was 9 when she got a brain tumor called Pilocytic astrocytoma. At that time, in Nepal doctor were not sure whether it was Craniopharyngioma or Pilocytic astrocytoma. They had to send the sample to India, to find out the exact name of the tumor.

Before doing MRI or CTs, we went to hospital in emergency department for checkup because she was showing signs and symptoms like headache, committing and fever. After few blood and urine tests they told that everything was normal and just gave some medicines for fever and vomiting. Then later we admitted her to a children hospital for like 8-15days. There the doctors recommended for CT but later they told they do not need to do it. My sister started getting blurred eyes. After thinking and talking to the doctors of that hospital about the improvement, we changed to another hospital which is the biggest government hospital of Nepal. There the doctors told us to get the MRI done immediately.

My big sister was studying nursing and I was in year 12. When we got the MRI results, there were no doctors to consult with. So, me and my big sis searched in the internet about the MRI report and found out about the tumor. We were so devastated and could not think of anything. The next day we went to hospital and my sister was admitted emergently because the tumor was so big. The doctor told us to prepare which was the worst. She partially lost her vision. Doctors told that she might be able to see after the surgery or after releasing the pressure created by hydrocephalus. She got a first surgery for hydrocephalus in both right and left side. On March 7, 2016 the doctors performed 10-12 hours surgery to remove the benign tumor which was near optic nerve and pituitary gland. Fortunately, the surgery was successful and she was in ICU for only 24hours. But her vision did not return.

She has been recovered from the tumor but she cannot see at all.. We are so glad that she is healed but sad that she cannot see. It took time to adapt for her. She stayed at home playing. Then from August, 2017 we started taking her to a institute where they teach Braille. Learning and understanding Braille was difficult because she used to study and go to school. She used to be in top 3 when she was in school. She studied till half of grade 3.

Now she has been attending government school but government schools of Nepal are neither competent nor provides proper education and care. My sister knows how to read and write in Braille that’s to the institution. She went to the school but there is still no any improvement in her education. We found that there is a school for visually challenged people. But that school is so expensive for a middle class family like us. And we have been searching for a person to sponsor her education since then.

I wish she could see again. I wish there was any materials or things that could make her life easier and independent. My small sis is very energetic and has a positive attitude. She cares about others deeply and hides her feelings most of the time. She has become so mature when it is time to play for her.

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