Hypothalamic Optic Glioma

An  MRI was ultimately done to get a better look and make a plan for placing the shunt.  Pediatric MRI are done with sedation in order to keep the baby still.  It was so scary to send our little baby to be put under.  As Mark and I waited we tried to focus on the possibility that this could change everything for us.  Kai maybe a happy bouncing baby someday soon.  He may be smiling and playing and enjoying life.  We were so excited to finally see him happy.  We talked of all the things we wanted to do once he was feeling better.  We would be able to go out and do things with him.  Make it threw a full hour at mom and baby meetup. We were so excited start over.  And after months of talking about never being able to do this again, we even talked about the possibility of having another baby…someday.

The MRI seemed to take forever.  When someone finally came out to talk to us, instead of saying it was over they were asking us for consent to do a contrast to get a better look.  I knew at that moment there was something else going on.  My heart dropped and time seemed to slow even more.  It was agonizing.  I just wanted to see my baby. We were trying to prepare ourselves for brain surgery to place a shunt, isn’t that enough scary news for one day.

After Kai had recovered from the MRI his Neurosurgeon told us the plan for the shunt and let us know that they also found a growth, which was the cause of the Hydrocephalus. A Hypothalamic Optic glioma.  A tumor growing in the space between his optic nerve and Hypothalamus. Because of the location they can not operate on it.  He then explained it would likely need to be treated by chemotherapy. The good news was because of the fluid build up they would have enough access to take a biopsy during the surgery to place the shunt.  This way we will at least be able to learn a little more about the tumor.

Off to surgery in the morning.

One thought on “Hypothalamic Optic Glioma

  1. I came across a brief descripton of your sweet son and his family.. Im intrested on learning more about your son. Is there a facebook page or anything else that i chould read and learn.. god bless!

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