Radiation week 1, DONE and some weekend fun

As I write, he is receiving his 4th treatment of radiation, and we are both looking forward to 2 days off from the hospital.  I am not quite sure how, but the week seemed to zoom by, even though we don't have that much going on.  His tolerance for treatment has increased since day one, I am just not sure by how much.  Unfortunately, we have been scheduled at 7am every morning, which means he has to wake up by 6am so I can get him the medicine he needs before treatment.  It is a struggle every morning.  He wakes up tired, doesn't want to go, and I try my hardest not to engage with him.  We usually arrive within 1 minute of our scheduled appointment, and each day, he has reacted a little different.

The second day, I wasn't sure he would make it through this without anesthesia.  When we arrived, he started crying, but reluctantly got on the table.  However, as soon as the mask got on, he panicked that he couldn't breath, and was screaming at them to remove it.  I cannot even imagine how claustrophobic it must feel.  It looks almost barbaric, and I was up for many nights wondering how I was going to be able to support him, without having my own panic attack.  The thought of being clipped down to a table by a mask that covers your entire face and half of your chest is truly unthinkable.  It is difficult to see, and I can't even imagine how he must feel.  The technician was extremely patient and worked with him as best she could, and eventually he calmed down and they got the mask on.  He said he was ready, and I left.  When he emerged, he said it went ok, and I took a deep sigh of relief.  Tomorrow would be better.

Day 3, really went smooth.  He walked into the room, they had his favorite music playing on pandora which right now is Maroon 5, asked to have the remote control so he could control the lights, and hopped up on the table.  I couldn't believe it.  They put on the mask, attached it to the table, and off I went.  Phew.  I thought we'd get through the rest of this just fine.

I have been looking for various activities for him while we are here because his treatment takes about an hour, and he does a little school work, but then we have the rest of the day to explore, at least while he is still feeling well.  I feel so lucky to find the program I did.  After much research, I found out about a technology/creativity incubator where college age students mentor kids ages 10-17 in various forms. We entered the "clubhouse," and he lit up in a way I hadn't seen in months.  There was a music studio with all kinds of software to learn, a lego engineering corner, various computers with different coding programs, sewing machines, and the list went on and on.  There were about 6 kids there, and he can go a few days a week between 3-7pm.  The rules of the clubhouse are as follows:  you must create, and no parents allowed.  I left for about 90 min, and returned to find him engaged with a little girl about 13 years old designing some kind of computer program.  It was the first time since March that he was with peers, doing something he loves, and know one knowing what his story was.  No cancer, no hospitals, no blood draws, no MRI's, no mask.  He felt normal.  Happy.  I was thrilled.

Then day 4 came.  We got up early as usual so I could give him the medication he needs, and arrived right at 7am for his appointment.  It was Friday, and at the end of each week, they open a closet full of toys that he can pick from.  He lit up when he saw the cabinet, and picked some kind of boomerang ball.  He seemed so happy, I couldn't imagine what would come next.  But it did.  We got into the room, and the tears started coming down his face.  Reluctantly, he got on the table, but as soon as the mask got near him, he said he couldn't breathe, and screaming that it was choking him.  I figured he was having a panic attack and that for the rest of the 26 sessions, he'd have to receive anesthesia.  I of course was trying to calm him down and reassure him, but nothing worked.  He was inconsolable.  Then, just like a 2 year old has a tantrum and is done all of the sudden, he was too.  He stopped crying, said "ok, put it on," and laid down on the table.  That was that.  They got the mask on, I left the room, and he was done 45 min. later.  He came out smiling that it was over, and we were headed to NYC for the weekend, which was an adventure in itself.

I decided to drive so we could see some of New England.  Plus, it seemed like driving, flying, or taking the train all took about the same time.  We rented a car, and headed south.  I felt like we were on a road trip adventure like 2 twenty somethings.  He played DJ in the car, and was truly rocking out.  He sang the whole time, carefree, and happy.  It was amazing.  Windows down, hair blowing in the wind, music up, and watching the fall scenery of New England pass by.  It was absolutely beautiful, and it was super special.  We stopped in New Haven at Yale University for lunch and to check it out, and then continued onto NYC to my brother's house to celebrate my nephew's 12th birthday.  He was so happy to be with his cousins, and it was truly a great weekend for him.

Week one is behind us and we have 5 more to go.

The carpenters who work at the hospital put together a building activity for the kids here.  He built a birdhouse with them.  Art and building things are so therapeutic for him, and a huge part of how he is able to manage.  I was so grateful for these guys.

This is a part of "the clubhouse"  One huge room to explore

 This is Noah after his treatment with our nurse coordinator Rachel.  She is warm and kind and makes the experience here as good as possible.

 Cousins in NYC

 Though his appetite has already decreased significantly, he couldn't pass these pancakes up.  They were lemon ricotta pancakes, and he said, "Mom, there is no mix that could possibly compare to these."

Noah with cousins Emmett and Adrian in NYC.