Dear Sir,

My daughter Vasundhara was born in Beirut ( Lebanon ) on October 20, 1997 as a normal baby.

She was quite active till the age of 15 months and was having vision after which we noticed squint

and change in the size of her right eye. On obtaining the MRI of her brain and



orbits in American University of Beirut of Medical Centre in Lebanon , it was



detected that a multilobulated mass measuring 4x4x5 cm. in the suprasellar region,



extending into the right temporal lobe and superiorly into the right midbrain



and both basal ganglia up to the level of third ventricle with mild compression



by other mass on its right side.. This tumor extends into both optic nerves



more on the right side. Minimal edema was seen around the tumor. Both ICA arteries



and major branches are encased by the tumor. The medical term of the disease



is known Bilateral Optic Nerve Gliomas with chiasmatic and rettochiasmatic



extension Or Optic Chiasmatic Glioma. The tumor was fast



increasing and malignant in nature. A team of neurologist, neurosurgeon, oncologist



and ophthalmologist got involved for further course of action .Due to the fast



increasing size of the tumor Sonal had left lower and upper extremities weakness



and had to be hospitalised for treatment.. She was started on a protocol of



chemotherapy for optic glioma including Procarbazine, Oncovin, Carmustine and



Decadron. She showed remarkable improvement. However, optic atrophy (seen initially) persisted.Sonal could not



finish the full course of chemotherapy (eight cycles of 1-1/2 month each) and



after six cycles of chemotherapy she developed severe toxicity to the lungs



and had to be admitted to the Intensive Care Unit of the same hospital in February



2000. She was kept on high speed ventilator for almost 10 days and one week



later by the grace of God discharged from the hospital in good



condition. She is off therapy after that and is doing well, clinically.We visited USA in



July 2002 for her any further treatment. But the doctors in New York opined that there was no chance to revive the optic nerves.



and that now there is 50% possibility of the tumor



to grow again and if it happens they may go for another course of chemotherapy



or radiotherapy or surgery whichever is necessary at that time.At present Vasundhara



attends regular school with special support in Braille.







At present tumor is in stable condition. I try to have some kind of treatment/Medecine which can stimulate her optic nerves and simultaneously treat the remaining tumor. please reply to my email as soon as possible , i need your guide









Thank you

Regards

M.S.M.Munas



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