Boston Round 2 and Baseball

We returned to Boston the last week of August, just 10 days after brain surgery, to get him set up for the radiation.  We spent 3 days there, mostly in the hospital; neurology appointments, oncology appointments, social workers, labs drawn, CT scans, and MRIs.  Most everything routine except for one thing.  Because he needs to be perfectly still for the radiation, they make a custom mask that attaches to the table so he is immobilized.  I had been having nightmares about it for 2 months, just thinking about the idea.  And because they need to radiate his entire brain and spine, he also needs to be still for 45 min to an hour each day.  He needs 30 radiation treatments, and then we are praying that this is the end of his cancer therapies.  He will go for radiation 5 days per week for 6 weeks straight.  He is receiving a special kind of radiation called proton radiation.  The hope is that it will spare the healthy tissue and target just the area that needs to be treated.  This is what makes proton radiation unique.  It is extremely precise and spares the healthy tissue.  This is why we came all the way across the country to get it done.  Boston had the first machine in the country, and they have the most experience.  There are only about 15 machines nationwide, many of which are very new.

Most kids who are 10 are unable to be immobilized for such a long period, so they must be sedated via general anesthesia every day for their therapy.  This obviously comes with its own risks and annoyances, and he was determined not to need anesthesia.  We had talked about this mask for weeks, and what it would be like, and even looked at pictures online often.  He was 100% sure he could do this, and was as prepared as one could be.  

The man at Mass General Hospital in Boston who makes the masks is named Jim, and he has been doing his job or some form of it for over 30 years.  He was absolutely wonderful and was extremely patient with Noah's millions of questions.  And I mean millions!!  In fact, he said in 30 years, he had never had so many questions.  This was not unusual to hear, as Noah needs to know everything.  He has always been like that.  He not only craves information, I think its also soothing for him.  Jim explained the entire process to Noah, and even gave him a little piece of plastic to practice with.  They basically start with a piece of hard plastic that has holes in it and then heat it in some kind of solution so it is malleable.  With Noah laid down on a table, 3 men placed the now soft plastic over his entire head and part of his chest, and mold it as close as they can to the contours on his face until it hardens.  The whole process from start to finish took about 10 min.  They then attach the mask to the table and that is the position he must stay in while his radiation takes place.  

With the new custom mask in hand, we headed to the CT scanner where they would take many images to build the software needed for his radiation.  Its amazing to me how many people are involved and how many jobs that are involved for this one patient.  A physicist decides where the beams should go, x-ray technicians, CT scanner techs, nurses, even specialized proton radiation techs. When we arrived to the CT room, they needed to put some dye into his veins called contrast dye.  He has done that numerous times before for his MRIs, but this time was an absolute disaster.  Ever since his surgery, he has had a hang up and a complex about his port, and he refused to allow them to access it.  Instead, he wanted them to insert the contrast dye through his IV.  We had the skin on both of his arms numb so they could decide which was the best vein. However due to the IVs in his arm for so long from surgery, they couldn't get the IV in the vein. I had to ask for a different nurse thinking maybe it was her technique, but when the second nurse came in to try the other arm, she too had no luck.  He was screaming at them, at me, at everyone, and eventually we said stop.  It was enough.  After calming down, he said they could do the part of the CT scan that didn't require the contrast dye, but he refused any more poking, which was perfectly acceptable to me.  They loaded him up onto the table, put his mask on, attached him to the table, and he was able to lay there perfectly still for 30 min.  He passed the test.  He would not need anesthesia.  

There was one more thing that needed to be done, and I wasn't about to tell him.  They needed to make 2 small tattoo marks on his stomach so that when he comes in for radiation each day, he would be perfectly lined up.  I suggested to the nurse that they tell him they needed to make a mark on his skin to make sure he is in the same place every day.  I also told her it would be best to have 2 people at the same time make the marks because they were going to get one chance.  He'd never let them do it twice.  So thats exactly what happened.  2 nurses, simultaneously, gave him the little tattoos which at the end of the day was just a little pinprick.  He was angry, hysterical, and screaming once again, but it was over.

At this point, I myself could have used some sedation.  It was an extremely stressful day, and I was ready to go home.  I am 100% convinced that if it were me, and I had to be attached to the table, I need to be in a psych ward or a straight jacket.  It is claustrophobic, scary, and he made me so proud, once again.  He is a strong, incredible human being, and we all admire him.

We headed home that night, knowing we had a very exciting day the next day.  He was going to throw the first pitch at the Oakland A's baseball game.  September is pediatric cancer awareness month, and many teams across the nation, honor the kids in various ways.  He was asked to throw the first pitch and nothing was going to stop him.  It was a perfect way to end a not so perfect week, and he was super excited.  We were all excited for him.   

Adam surprised him us a party bus, and we had our close friends join us on the bus.  It was a so fun.  The party bus had strobe lights, and tons of music and the kids just loved it.  We got to the game a little early, and Noah headed straight to the field to meet the players and get ready.  It was his moment to shine and he stole the spotlight.  He threw the pitch from the mound all the way to the plate.  He was up on the screen, and the announcer was talking about his journey.  We cried.  We were so proud.  It was his moment to shine, and shine he did.  We couldn't believe it.  Just 15 days out from major brain surgery, and there he was standing proud.  He is truly a warrior or our hero.

Some Pics 

This is how the mask starts out.  Hard plastic that then gets heated to mold to face

This was a practice piece to feel what the warm mask was going to feel like.  He seemed to like it.

 This took about 5-10 min.  They placed the mask on his head and molded it to his face.  Then, we waited for it to harden.

 This is a CT scanner.  With the images, they are able to design the software needed specific to his treatment.

 This is the mask with him attached to the table.  The green lasers allow them to line him up in the same place daily

 First Pitch!!  Rock Star

 Noah with Catcher Stephen Vogt.  He was incredibly motivating and kind.