Friday, November 8, 2013

October 24th - The day we found out.

On Sunday, 10/20, Daniel started using tilting/turning his head to the right to fix his vision.  He would turn to look at something and have to turn his entire body until it focused.  It was noticed at Sunday dinner and became a question of why is he doing that.  He had fallen the day before at the playground and had a scratch on the side of his eye.  Carley took him to the doctors the next day and was told to watch him.  On Tuesday he complained of a headache and was still looking out of his eye funny so they took him to Norwood hospital.  They were told to watch it and see their ophthalmologist, which they did and again told to watch it.  On Wednesday morning, Daniel’s eyes were crossed.  He told them he was seeing two tv's and everyone had two heads.  They called the doctor and went straight to Children’s hospital.  They spent the day there and eventually were admitted.  He saw and Ophthalmologist there and he said Daniel’s nerves in his eye looked great and that he seemed to have vision in his left eye.  He was then transported to the Neurology floor to wait for an MRI.
10/24/13 - Daniel went into the MRI around 11:30 AM.  My mother and I arrived and sat with Carley and Danny while we waited for the results we did not expect to get.  We sat with Neurology team and heard the most devastating news a parent/family member could ever hear.  Their 5 year old son has a brain tumor in his brain stem.  Something they call Diffuse Intrinsic Pontine Glioma.  A dangerous, aggressive tumor.  It cannot be operated on because it is in the Pons of the brain stem, which controls the 12 main nerves of the body.  Breathing, swallowing, movement, eyesight, etc.  What they can do is radiation and chemotherapy as well as a biopsy to find out exactly what the mutations of this horrible disease are.  The biopsy has only been done 20 times in the past year.  Thank god we live so close to the most amazing doctors in the world.

The problem with these types of tumors is they can't tell what it is unless they do a biopsy.  Typically with Chemo, the brain fights it so it cannot enter the brain. So a biopsy will help understand what type of tumor it is and what types of Chemo we can try.  We will not know that until next week.

They will be spending a lot of time in Boston at Dana Farber starting today.  He will begin radiation next week after recovering from the biopsy which is on Monday.  The radiation is 6 weeks, Monday - Friday,  no holidays or weekends.  During that time, they may also begin chemo.  Other things to think about...He cannot be around any kind of illness.  If you cough because you have a scratch in your throat stay away:)  You never know!

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