Burkitt no Sistema Nervoso Central

2013-11-11 21.23.21In July 2012 , during the winter vacation at my mother’s house , I realized that my son’s left hand was not moving , he is left-handed and could not draw …. I ran to him and took him to the emergency in a great hospital in Sao Paulo , Albert Einstein …. Orthopaedics , Pediatrics,  and Neurology found nothing wrong with him. They said he was fine and he must have suffered a nerve injury of the hand due to some effort. A week passed with no improvement. I took him to another neurologist, he said the same thing: nerve injury of the hand , spend 10 physiotherapy sessions and Electromyography.  After 1 week more he showed no improvement.  I scheduled another neurologist who said he had nothing but ordered a CT scan. 

 It had been two months and I had just moved to another area in my job, I was in training on my first day, when the doctor’s secretary called me saying that the doctor wanted to see me the next day. I almost died when she called me, in all my 32 years no doctor ever called me, this could only be something serious. I tried to talk to him the same day, I spoke with the laboratory, I was like a crazy person- I could see the report on the internet almost at midnight saying that there was something there like a Cavernoma it seemed. I began to read about it and I was desperate! Cavernoma (little did I know it could be even worse). The next day we arrived at the doctor for our consultation, he asked for the tomography images. 

 We had the in-house CT technicians get another set of images. We went back to the doctor he said no, that is not tumor, but may be a bleed if not a leak. Run to the hospital and ask for an MRI. We went home , got my hero and went to the hospital.  After fighting with 3 attendants who said they could not ask for MRI , I would have to schedule … I could go on and PS asked the medical ICU and asked an internist to  MRI in ICU- it just came in two months ago. About 3 days later Neurology’s report came to us that it was not bleeding , it was a tumor, 7 cm wide by 6cm in the Thalamus, a difficult place to access. It would not be good to operate, and he was too young to undergo radiation … We scheduled a biopsy, and frankly, in the brain, when the result came, we know Dr. Maria Lydia, she told us that the report was that he had a lymphoma. We didn’t know what lymphoma was, but she said smile because we had seen other types of brain tumors, but never Lymphoma … so this could be good news.  She said she had high hopes with Cassio, but he would have to hurry, because he had to start chemo that day, we learned that only then that this is a tumor that has a high rate of cure, but it is very aggressive.

 It was a long year, full of hospitalizations, more time in the hospital than at home, decreased immunity, antibiotics , endless needles, as you know, but we are very happy. Cassio’s treatment  began in August 2012 and it ended in July 2013.  He returned to school, returned to swimming lessons.

 (and yet) …I’m crazy with every symptom that comes along, scared thinking back on this terror, but I thank God and Doctor Maria Lydia every day for him to be with me and that it was a  Burkitt’s lymphoma, rather than a Glioblastoma , Astrocytoma …. All strength to all of you that are fighting this monster.  That he is with me at all makes me very, very happy. It was a miracle… Thanks, Jeff Runyan for everything, for sending methe articles about Primary Burkitt in the CNS, very rare…

 

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