Tuesday, March 25, 2014

Thank you all for your prayers and support over the last few weeks.  Radiation has officially started. 
After a stressful and emotional goodbye Jacob and I made our way to Orlando Monday morning.  Jacob's first radiation was at 3:00 at the UF Health Cancer Center.  It was 2:45 pm when we scanned Jacob's bar code number on his ID card and proceeded to radiation waiting. We then met Bernadette and Sadira, who are the two nurses who will be taking care of Jacob during his time with Novalis.  They showed us to the table and got Jacob as comfortable as possible in his mask.  Since Jacob's iPhone playlist has some less than desirable music on it Bernadette turned on Pandora's Today's Country station for Jacob to listen to while on the table.  After readjusting Jacob a few times he was securely stabilized in his full face and head mask.  There is a huge tv screen in the room that shows imaging of Jacob's brain and skull.  It is used to make sure everything is lined up before the treatments start.  They also take x rays before every treatment.   I wished Jacob well and left the room with the nurses.  There is a small room in front of the radiation room where the nurses sit and operate things.  There are several monitors they watch Jacob on and are there if he needs them.  Jacob was calm and said he was only a little scared. Before his appointment he talked about spray painting his mask lime green (That made for a happy runners heart in me.) when his treatments are done to make it look cooler as a keepsake. I on the other hand fought back the flood of tears as I returned to the waiting room without him.  It's hard to believe we are at another unimaginable NF2 trial so close to the last one. These last few years have been relentless.  I am overwhelmed with the pain of wondering how much more Jacob can endure and the feelings of how unfair this journey has been.  Sitting in the waiting room I could hear the whistling sounds of the machine. The increments sounded roughly six seconds each time. I wasn't even sure it was Jacob's machine I could hear. The "beam on" lights were flashing on the machine door directly in front of me too but the sounds were not consistent, so it really could have been any of the machines.  There are at least four. It took roughly 20 minutes and the most work was removing Jacob's earrings and necklace and putting them back on. We made our appointments for the week and were all done.  Jacob's nurses were very nice.   
Our next stop was the Ronald McDonald House. I spoke with them before we left Tallahassee so I knew we had a room.  Phil, the day manager greeted us with everything ready. We were given a ground floor room with a desk and two beds. It is the best room here for us and I hope we will have it the entire six weeks, but when we leave on Fridays we will have to give it up if there are any families on the waiting list.  We will worry about that when it comes.  Tonight we are thankful for the help of so many and be glad one day of treatment is done! 

Jacob had some slight nausea and felt tired.  We have been told the side effects take time to manifest since the doses of radiation occur over time. 

I will update more later! 
Peace and Love,

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