Weekend was great, Mondays are tough

After his treatment on Friday, he felt such relief to be done for the week.  Showing up every morning at 7:00 am for the radiation which lasts about an hour becomes grueling day after day.  I guess you never really get used to being strapped down to a table and immobilized via a hard mask that covers your entire head and half of your chest.  He had a very rough day on Wednesday, and I got a call from the social worker, that she wanted to speak to us in her office.  I knew what was coming.  It felt as though I was being called into the principal's office.  He was super agitated by a smell that is created during the beams that target his brain.  Apparently, he was screaming and clearing his throat, and trying to do anything he could to get rid of the smell.  Of course, they can't have him do that.  He needs to be perfectly still because the beams are so targeted and specific that any movement can throw them off.

We got to her office.  She explained to Noah that his brain is like a computer, and sometimes when the computer breaks down, it needs to be reprogrammed.  She then continued by saying that he could reprogram his brain to not be affected by the smell.  She asked him if he could think of any things that might work, and he just rolled his eyes.  Clearly annoyed that we even had to be in there.  I sort of felt the same way.  She then went on to suggest some ideas.  They could do visualization techniques, play soft music instead of what he picks, count down for 2 minutes during the beam, read riddles during that time to him through the microphone.  They were all interesting ideas, none of which I thought would work, and definitely nothing that he would even consider.  In the end since he had to pick something.  He said he'd try listening to riddles and jokes during  the time the smell is created, and she said she would prepare them daily to read over the microphone when he needs them.
When we arrived the next morning, she was prepared, they went over the process with him, and they strapped him down on the table.  I left, as usual, and about an hour later, he emerged with a smile.  It worked.  Amazing.  I was truly surprised, and I think he was too.

By weeks end, he had finished 9 treatments.  We have 21 more to go.  He was happy for the weekend.  My mom has been in town helping, which has been a big boost to Noah and myself.  We decided to explore New England a little on Saturday, and we went to Martha's Vineyard.  It is very beautiful, and we spent the day touring the island, and learning about its history.  Some of the landscape actually reminds me of the Northern California coastline.  He enjoyed himself by trying all the goodies tourists do.  Fudge, saltwater taffy, lobster rolls.  It was so fun watching him enjoy himself.

When Monday came, I wasn't prepared for what happened.  We got to the radiation room, and he started crying.  He said he just hates this, and though he couldn't really calm down, he agreed to let them put the mask on.  I left, and he said, "bye mom," while trying to catch his breath from crying.  I could have died.  I felt horrible.  I went to the waiting room, and 20 min later they came out to tell me  he was really struggling, and couldn't continue.  They had only gotten through the X-rays to line him up in position.  They said they would take him off the table, and he could have a break.  They suggested increasing his dose of ativan, which I did reluctantly, and we waited for about an hour so the ativan could kick in and they could squeeze him back on the schedule.  The agony seemed to pass, and when he went back in he was ok.

This time the social worker told me it was time to make an appointment with the psychiatrist, which I was happy about because I am not sure increasing his medication was the only answer.  We got an appointment that afternoon, and she was just terrific.  We chalked up his hiccup that morning to an anomaly, and hoped for the best Tuesday.  She was right.  Tuesday he did just fine.

Grandma Susan and Noah on ferry to Martha's Vineyard

The 3 of us on Martha's Vineyard