19 sessions down , 11 to go.

This has been a pretty good week for so many reasons.  Adam and boys came last Saturday, and we have all been together for the week. When they arrived, Eli jumped out of the car and gave Noah the hugest hug on the planet.  It was so endearing, and reminded me about some of the positive ancillary effects of this experience.  The younger two boys can really not even begin to understand the things Noah has had to endure, but they have become more compassionate, more understanding of each other, and hopefully better human beings in the end.  They stuck by Noah's side every morning.  Even when we had to be at radiation at 7am, which felt like 4am to them, they got up without a complaint, and escorted him there.  They came inside the treatment room, watched him get set up on the table, and were exposed to a part of life I never imagined seeing myself.  They met the many kids and families that have become a part of our everyday, as we wait together while our kids get treated.  A few have become a little extended family, in particular, a family from Peru whose 3 year old daughter is being treated as well.  I am sure one day we will visit each other's homes and hopefully look back on this as a very distant memory.

We have spent a lot of quality time together this week, and I am sure the kids will never forget this experience.  We have spent many hours at the park just enjoying the fresh air, having dinners together, and going to Noah's endless appointments.  They have participated in all of the activities where we are staying including cooking with college students, playing with Harvard buddies, pumpkin carving, and the whole community even celebrated Simon's 7th birthday last night.

We can all appreciate how lucky we have been that Noah has not been terribly affected by the radiation yet.  Many of the kids are so nauseous and sick that they can't even get out of bed.  Noah has become a little more tired, and doesn't eat that much, but his spirit is high, and energy is pretty good.  We also celebrated on Tuesday because the protein in the blood that was rising has dropped significantly.  If it continues along the same trajectory, it should be normal by next week, which they expect.

Ten years ago, kids with Noah's diagnosis were not on the same protocol, and the prognosis was not as good.  They learned that they must administer 6 treatments of high dose chemo and radiation.  In his case, we had to get the remaining tumor out and so it delayed his radiation schedule by about a month.  They believe this was just enough time for the remaining cells to start multiplying again, and it was even further evidence that Noah absolutely needed the radiation, which I guess at one time was controversial.  So, we are feeling very positive and hoping that in 11 more treatments he will be done forever.  Though, I guess we will never be totally done.  Hopefully he won't have too many long term side effects from the radiation.  Only time will tell.

I am headed home on Sunday with the little ones, and Noah will be here with Adam for the remaining 2 weeks.  I am hoping it will be smooth and seamless, as things have become kind of routine now, and there are not really any surprises for him anymore.  Adam's parents will also visit, as will Noah's Uncle Josh, and Great Uncle David, so there will be a lot of love to be had.

3 boys back together for a little ice cream

Playing cards with a college student from Suffolk college

Noah and Simon in the Boston Commons

Starbucks snack

Favorite Park on the Esplanade

Waiting for radiation

Best Friend arrived - timing couldn't have been better

On Monday night, Noah's best friend arrived.  His name is Noah as well, and they have been friends since they were 6 months old.  They go to camp together every summer for a few weeks, and are incredibly bonded.  When we found out he was going to need the first spinal surgery, his friend was the first thing I thought about.  I wanted them to be able to see each other.  Though he lives in Southern California, they got on a plane, and came up immediately.  Throughout the past 8 months, he has come many times, and we are incredibly grateful and thankful for him.

His visit has brought such life to Noah.  He is running around Boston with his friend carefree. It brings absolute joy to him, and even more to me.  On Tuesday, we got the results back from the blood work that had been increasing.  I couldn't sleep an ounce on Monday night, and though the results are still slightly ambivalent, it appears that things are moving in the right direction.  The indicator in his blood count has been going up, indicating some cancer cells still hanging around.  They went up again this week, but only slightly, not on the same trajectory as the last few times.  So, the doctors are calling it a plateau and expecting it to go down the next week.  He said had we taken the blood work one more day, it probably would have made the difference.  However, they will still proceed with an MRI today to see if they can see anything.  If they find a cluster somewhere, they will add a boost of radiation to that area.  Though I am not totally relieved, I am cautiously optimistic.  

The next few days, we hope to pick apples in New England, and take the Noah's to a huge corn maze outside the city, and just enjoy the time here as best we can.  The rest of the family is coming on Saturday, and we just can't wait to see them either.  It has been a tough few weeks away from Adam and boys, and for them as well!!!

 Found an incredible park on the esplanade in Boston.  We visit almost every day.

 Two guys on the virtual reality roller coaster simulator.  Wasn't sure it was the best thing for his brain, but boy did he love it.

Students from Suffolk University came to cook dinner with some of the kids.  And best friend Noah of course.  On the menu:  waffles, eggs, and whipped cream

Breakfast for dinner

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

Day 7 and ambiguous test results

He is just finishing up his 7th treatment as I write.  In general, things have really been going well this week, and so far the side effects from treatment are tolerable.  His 2 major complaints have to do with the smell of the radiation and also its effects on his skin.  For whatever reason, when they are radiating his brain, he is very bothered by the smell.  However, there is no scent in the air that anyone else can smell.  It is something within his brain.  It happens to many people receiving treatment, and they don't really know why.  It is some kind of hallucination within the brain.  We have tried a variety of solutions to mitigate the smell, but nothing has worked that well yet.  I mix aquaphor with some food grade oils (the same oils that candy is made with like a Jolly Rancher) and then we put it under his nose.  He seems to prefer watermelon, but it is not a perfect solution, and the smell still really bothers him. In fact, I am not even sure it does anything, but he thinks that it does, and that is what is important.   As the days drag on, I am worried this will be our next fight to overcome.  The other main side effect he is dealing with is skin irritation.  It is particularly uncomfortable on his relatively fresh scar.  It is extremely red, itchy, and painful.  We cover his head daily in a thick thick cream, but most people we see that have had a few weeks of treatment are very red, and dry.  In fact, there is a possibility that he will have a permanent "sunburn" down his spine.

Thus far, all of his blood counts and what not have come back favorably.  However, since last month a cancer indicator particular to his tumor called AFP has slowly been rising.  When he was first diagnosed, the number was around 1500, which is extremely high, and directly related to his type of cancer.  After chemo, his numbers were down to about 2.5.  Unfortunately, these numbers are slowly climbing.  Post surgery it was 6, last week 13, and after bloodwork yesterday, it came back at 20.  They have ordered a PET scan and a new MRI for next week to see if they can find anything if the numbers don't go down.   They are looking for cancer cells throughout his body, not just in his spinal cord or brain now.  If the cells are just within the spinal cord or brain, then the radiation should take care of these errant cells.  If they are somewhere else, then I guess there will be a new plan.  Right now we will have to suffer with the anxiety.  There is no clear reason this is happening, and as of right now, his treatment will not change.  And although they don't know why this is happening, it is definitely not the trajectory we were hoping for.  The best case scenario would be errant cancer cells left after chemo, and his numbers are climbing because he has yet to be radiated.  We try not to go to the worst case.  Though, there have only been 2-3 documented cases where the cells have migrated outside the brain and spinal cord.

The unknown is one of the hardest things to deal with.  There are so many unknowns, and since his disease is so rare, there are not immense amounts of data.  It is also a balancing act on what to tell him.  He likes to know everything, and deserves to know, but it always needs to be tempered.  His attitude is incredible, and that is so much of this battle because the treatment is so grueling.  Since we can't do anything about it, we try to just get through each day because this does not have an easy solution or an easy answer.

On a more positive note, we explored Boston a little more in the afternoon.  He had been dying to take the T, so he mapped out the station closest to our house, and navigated the system to get us where we needed to go.  Though he's not in school, there have been many life skills he has picked up beyond the hardest skill which is that he can endure anything.  The cutest skill he has learned is doing laundry in a communal building.  He has navigated the card system to buy minutes for the machine, learned that you must get your laundry out as soon as it is done because someone else is waiting, and commercial dryers ruin your favorite clothes.  He thinks the whole thing is fun.  I figure he will be well trained for college.   His personality has just blossomed throughout this entire experience as well.  He is comfortable dealing with all different kinds of people and all different kinds of situations.  He is confident, conversational, and engaging with everyone.  A far cry from the reserved little guy before this started.  We are so proud of him.  He is adorable.

Lastly, some college students from Suffolk University came to cook dinner with a bunch of kids staying at the same place that we are.  Noah enjoyed himself so much.  They made caesar salad, pasta with tomato sauce, and we hung out in the evening with a few kids and their families who are  receiving similar treatments for all different kinds of cancers.  Everyone has a different story, but we are all fighting the same fight.

 This is an electricity/lighting show at the museum of science.  We spend about an hour there each day exploring.  It is right across the street from our apartment, and is an incredible museum.

                                                                      Selfie on the T

This is the Boston Public Market.  There must be 50-70 artisan vendors selling incredibly delicious food.  We have tried apple cider doughnuts which is a specialty of New England, fudge, lobster, hand cured meats.  Our goal is to try something from each vendor before we go home.

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.

First Day of Radiation

We flew back to Boston on Sunday, landing around 4:30pm.  This was our 3rd trip there in 5 or 6 weeks so by now it has become routine.   In a way, I was feeling a little relieved because I felt like this is the last hurdle of treatment.  Hopefully, of course.  We have made each of our stays in Boston feel like a vacation as much as possible, and he too was looking forward to returning.  We arrived to our apartment around 5:30, and Whole Foods had already delivered us our order through an app Noah found called Insta Cart.  He was so proud.  He ordered all of his favorites; smoked salmon, avocado, cream cheese, bagels, and there it was at our door waiting.  We put our things away, and headed up Charles Street in Beacon Hill for some dinner.  He ordered his new favorite, pasta with tomato sauce with a fillet of grilled salmon.  And to start, buratta.  He savored every bite, and I must admit, it is so fun watching him enjoy the food so much.

Our appointment was scheduled for 11 am the next day, and we had had a long day, so we went to bed early, and got ready in the morning for the first treatment.  But, as we have learned the hard way, life is not perfect, and there are always glitches.  One thing that cancer has taught us is that you cannot plan for anything and must role with the punches.  We got a call around 9am; the software for the radiation machines were malfunctioning, there would be no radiation today.  I think he felt kind of let down in a way.  He was mentally prepared to start.  We made the best of it, and toured more of Boston.  We went to Quincy Market and Fanueil hall and just sort of roamed the streets.  The weather was perfect, and we just enjoyed the day together.

Today, he was scheduled for a 7am start.  That time wasn't as convenient for us because it meant getting up early, and getting him the medications he needed, but it was fine.  He woke up around 6:20, and I gave him zofran which should control any nausea that he may have, and an ativan which should help him stay calm.  I figured if we can get him through the first week, then we can drop the ativan next week.

We arrived on time, and I thought he was psychologically ready for this.  He seemed calm, cool, and collected for the most part.  Then, his name was called.  He jumped out of his chair as if a loud bang dropped beneath him.  I realized then how anxious he was.  They asked him to put on a gown, he asked why.  "Uh oh," I thought to myself, what is coming next with him.  He got the gown on, and we entered the room, which he had already seen once.  The questions started.  "Which table?"  Why is it white, not black?" "Can he change the lights?"  Let the stalling begin.  I have learned by now not to get involved and let the techs and professionals handle this.  Thats what they do all day long.  They were extremely patient with him, and got him onto the table.  Thats when the tears started.  Another thing i have learned is not to talk to him and ask whats happening...the best way to handle these situations is just to sit by him, hold his arm or leg and wait out the tears.  He would finish crying about something, and then say ok, he was ready for the next step.  All in all, it would take 45 min just to get him situated.  I am sure the techs were thinking this would really push them back and make them late the entire day, but they didn't say or do anything different.  Just helped him through it.  

Eventually the mask was on, he was attached to the table, and they were ready to begin.  I left the room, and waited.  The whole thing took about an hour.  When he came out, he broke out into tears of happiness.  It was over.  He can do it.  1 down, 29 to go.  There was an art therapist waiting for him to make a duct tape wallet.  It couldn't have been better.  Tomorrow will be better!!

Tonight we are headed to a Red Sox game.  On our first trip out here, I met the nicest man on the plane who was coming back from California after visiting his 5th grandchild.  He was so saddened by our story, and asked me for my email.  He sent us his season tickets to the Red Sox tonight.  People's humanity has just shone through in so many ways with this process.  We are so thankful for that.  Noah is super excited about tonight and gives him a lot to look forward to.  Thank you Jim Silver!!!

This is the Proton Radiation Machine.  It is actually 4 stories high.  Each patient requires slightly different equipment depending on the place they receive the radiation.  It takes cranes to move the equipment around which they do several times a day.  He has a remote control and can make the lights in the room any color he wants. They also play pandora for him.

Iron Man came to visit the apartment where we are staying.

Red Sox Game

One week of hospital stay and on our way HOME!!!

The first day after surgery was truly better than expected.  He had vomited quite a bit the night before, and though he was asking for food a drink, he really couldn't hold anything down.  After they were able to get his pain under control, we just couldn't believe how well he tolerated the surgery.  He did refuse to move his neck or body for that matter, but his spirits were up, and I'm sure some it was just pure relief that everything was working well.  He even told the doctor he loved having the catheter in place, which was an absolute first for the physician.  They like to remove the catheters as soon as possible to limit the risk of infection.  Plus, getting it out forces the patient to move around a little more.  I am certain Noah understood this perfectly, and would have rather risked infection than having to move his very sore neck and head.  So, he won, and they kept it in for an extra 24 hours.

The nursing shifts at UCSF are 12 hours long each so you only have 2 nurses per day, which I think is very positive for the patient. At Oakland, the shifts are 8 hours each, so just when you're settling into the person, they change shifts.  We were also very fortunate to have 2 male nurses.  I never realized how important nurse gender was to Noah.  He relates to the male nurses so much better, feels more comfortable with his body, and frankly is so much more cooperative with them.  Our 2 nurses in the ICU were both kind of cool, hip, in their late 20's men, and they truly contributed to his sense of well being.  It really was a different dynamic than a female nurse is for him, and I can't stress the value of having men in the nursing field.  I am more and more appreciative all the time.

By Friday evening, which was about 48 hours after the surgery, we were transferred to a transitional unit where he would stay until we were released.  It is here that things took a turn for the worse, and brought us back to "Roid Rage" all over again.  From about Friday evening until Monday afternoon, the steroids they gave him to keep the swelling in the brain down, really started to affect him negatively.  We had been through this before so it was not as frightening, but it was still very difficult to watch him suffer so greatly.  He was totally paranoid about his IV lines and his port.  He had IV lines in each arm crease, and they were also using his port to deliver meds and fluids.  He really wasn't able to see that well which I am sure contributed to the problem, but if someone got within 5 feet of him, he'd scream "don't touch me, don't touch my IV, don't touch my port."  He was super agitated, and very combative to the nurses.  He refused to eat, drink, or even have his leg rubbed.  He was miserable.  They tried various meds to keep him a little calmer, but they sedated him too much, and that was unacceptable to him, so he refused the medication as well.

We felt very lucky to have the family support during this time. In addition to our parents who have been at our side since the beginiing, Adam's aunt came to stay with Eli and Simon for the week, and also brought her daughter who is Simon's age.  They were so well taken care of and loved, we will never forget how much she helped us.  She brought the kids to the hospital a few days in a row, and even brought friends as well.  Unfortunately, Noah was either too sleepy or too agitated to engage, but I know how much it meant to Eli especially to be there, even it was for a few min.  By Monday, the steroids had begun tapering off, and we could see he was returning back to normal.  It was a very long 5 days, but we were starting to see the light at the end of the tunnel.  The physical therapist came and was able to get him off the bed, albeit screaming and shouting at her, but he did it.  And we know its this fighting spirit that has made him so strong throughout.  By Tuesday, the doctor told us there was no medical reason he needed to be here anymore, but that he had to be able to walk on his own, and eat.  As soon as he heard that, the light went on!!  He said to send in the physical therapist, and he ordered a huge plate of food.

When she arrived he used all of his might and strength to pull himself out of that bed and walk a little down the hall.  He made it about 20 feet to a a little step which was another ticket out of the hospital.  He climbed that step with all his might, took a rest in a chair, and then headed back.  She said it was sufficient, and I assured her we could manage him at home.  She gave us the green light and we were out of there.  Very happily I must say.

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.

Day of Surgery

I havent really had a chance to sit down and spend the time I have needed to update the blog.  This week has been solely focused on Noah's recovery and trying to be with Eli and Simon as much as possible.  It has been a very long, exhausting week for all of us, and we are starting to come out the other side.

We left for the surgery last Wednesday around 6am, and headed to UCSF medical center for Noah's surgery.  He actually came into our room at 4am, and wondered when it was time to go.  It was the first time in a while he had shown any anxiety about the surgery.  He crawled in our bed, and stayed with us until it was time to go.  I didn't want to get out of the bed.  I just wanted to stay there with him cuddled up next to us because I knew in some way his life was going to be different after the surgery, I just wasn't sure how.  But the thought of it had kept me awake for the 3 weeks prior since I found out he was going to have to do this.  In fact many nights, I would crawl into his bed after he had gone to sleep, just to breathe him in.  I just couldn't believe he was going to have to go through with this.  Meanwhile, he was super brave as usual, never once mentioning to me how afraid he was.  He sat through all of our meetings with doctors, had heard much of the possible side effects, and still never once flinched or said he didn't want the surgery.  He is a warrior.

6am finally arrived, and it was time to leave.  We loaded up the car, and headed out the door.  We were all anxious of course, and I wanted the car ride to be as slow as possible.  When we arrived at the hospital, they checked us in very quickly, and we headed to pre-op.  Things went as smoothly as they could.  Blood pressure check.  Fever, none.  Height and weight, check.  We met the operating nurse, the anesthesiologist, the resident, our neurosurgeon.  We signed papers which felt like signing our lives away, and by 8:30am it was time to take him in.  He was given the choice to have his port accessed first and put the medecine through there to fall asleep, or to get some gas and then they would access him.  He chose the gas, and I wondered how he would deal with that, since he was relatively comforatable getting his port accessed and then have the anasthesia administered through it.

They said one of us could be with him until he fell asleep, and he asked for me to go.  As we walked down the hall to the OR, he started crying.  He was so afraid.  It felt like the longest walk ever.  I wanted to just keep walking on out of there.  I just didn't know what the outcome would be.  He was so anxious, and it was all starting to come out.  We got to the OR, and he laid on the table.  They showed him the mask, and he started to freak out.  He was hysterical.  He didn't like the smell.  He didn't like the feeling.  He was stalling, and I was just fine with it.  The anesthesiologist cradled his head like a baby, assured him he was safe, and held the mask there until he went to sleep.  I stayed until he was totally asleep, and then walked out.  The clock began.  I was dreading this day.

The nurse escorted me down the hall, and I went to find Adam.  He was going to have an MRI before the surgery began, and then they would begin around 9am.  They said they would update us every few hours, so we went downstairs to get something to eat.  They called at 9 to tell us he was entering the OR, and would call with an update when the surgery began.  We didn't hear from them until 10:45am to let us know they were beginning.  Thats how long it takes to set up for this kind of surgery.  He was face down on a table because they enter the brain through the back of the head.  They must secure his head with some kind of apparatus.  In fact, when he came out of surgery he had 3 little holes, 2 near his forehead and one on the side.  These were pins they used to secure his head.

We didn't get another call until 12:30 to let us know they had reached the tumor and they were beginning the resection.  It takes almost 2 hours to reach that part of the brain.  Actually, once they separate out the muscles in the back of the neck, they retract the brain to the side, and can get a clear entry to the pineal region without cutting anything.  It is one of the most difficult areas to reach in the brain, as it is smack in the middle.  He told us it would take between 1.5- 4 hours to get the tumor depending how stuck it was to the varioius areas.  They called about 2 hours later to let us know everything was going well and they were still resecting the tumor.  By 3:30pm my patience was weaning and I wanted this to be over.  Thankfully, we had lots of friends and family there to pass the time, and at this point I was counting every second.  They called around 4:30, close to 4 hours after they began resecting the tumor, and told us they had removed the entire thing, and were preparing to close up.  We were so happy and relieved.  It was the first full breath I had taken all day.

It took about another 1.5 hours to close him up, and then he had a final MRI to make sure they got everything. The doctor came out to speak with us, and told us that the surgery went as well as it could, and he was quite pleased.  I told him I felt like kissing him.  He was pretty funny, and told me a handshake would be just fine, and I should kiss my husband.   Around 6:45 pm, he was out of the operating room, and in ICU, and within 30 minutes starting to stir and wake up.  He woke up around 7:15, and the first thing he said was, "will my body work the same?"  We were overcome with joy.  His brain was working just fine, though I realized we will need to help him psychologically for months to come.  He clearly wasn't sharing much of his fears, and they were real.

That evening went as well as one could expect.  He was so darling when he was waking up.  I think he must have felt so happy his brain was working just fine.  He was asking the nurse about everything he could, just as he usually does, and once again he could run all of the equipment had he needed to.  He was in quite a bit of pain as soon as the anasthesia wore off, but once they got the right dose of pain meds, he was ok.  He was extremely thirsty, and I kept feeding him ice chips, but he really couldn't hold anything down.  Ice chips, then throwing up.  More ice chips, more throw up.  He had a pretty rough night, but by the morning, he had stopped throwing up, and we he was able to hold down a little ginger ale.

His vision seems to be the only thing affected so far.  He has double vision, and at first he kind of looked like a deer in headlights.  In the ICU, he put on a patch rather quickly and kept reading us the time, down to the second, and I'm sure this was his way to make sure he could still see.  He was also calculating how many seconds and minutes until something else would happen, which was another way he was assuring himself that his brain was working just fine.  Which it was, and we were super thankful for.  So far, he is unable to look up.  He can look to the sides and in front of him, and is having trouble focusing, but all of this should improve with time.  Probably over the next 3-6 weeks he will have a marked improvement.  Swelling in the brain needs to go down, and his brain needs to recover from the trauma.

10 hours of surgery - total success

Thank you for all of your prayers and love and support today.  We felt so incredibly supported and can't convey enough to everyone how much we appreciate it.  Noah is awake and the surgery was extremely successful. Our incredibly talented surgeon got the entire tumor without leaving an ounce.  He worked diligently for 10 straight hours. 

Noah needs a lot of attention right now, but I will post more tomorrow. 

Gearing up for next phase of treatment

Many people are constantly asking me if I have posted lately. There is a feature on the blog to follow us, and it will send you an email when I post. If you have problems finding it, please let me know and I will help you.  You do need have a google email account I believe.

It's been close to a month since Noah has finished chemo, and it's been a nice break not having to run back and forth to the hospital and blood draws, etc. We had an amazing week in Lake Arrowhead with many friends and family, and it was an absolute joy to see Noah so happy. He spent a lot of time with his cousins from New York who he adores, and had a lot of quality time with Eli and Simon which was so wonderful to see. It was like he was back to himself again. He was running around like every other kid. Boating, arts and crafts, capture the flag, soccer, games, archery, etc.  The only thing he didn't do was swim.  We know it's because of his hair loss, which makes us so sad that he feels that way, but it made him uncomfortable so we didn't say a word. He even ate like any growing 10 year old boy, and I think he must have put on at least 3-4 lbs. from the 10-12 he lost during treatment. He has an appetite for destruction and it is very fun to feed him because he is a gourmet kid. He can't get enough salmon.  He can eat it all day long. Smoked, roasted, bbq, poached....it's so interesting. His body just craves it. 

Along with the week of bliss for him, came endless stress for Adam and I for a variety of reasons, mainly his upcoming brain surgery and finding the right surgeon for the job. His tumor is in the pineal gland of the brain which regulates the circadian rhythm. Tumors in this area of the brain are extremely rare. Top surgeons around the country only remove 6-10 per year, which is really very minimal.  We have amazing friends and contacts that helped us to get appointments with top doctors across the state for their opinions. Each surgeon has their own approach and technique, and it is hard to determine what's the best option. In the end, we decided that the surgery is part art form, and the technique they used was less important than the surgeon. We are so thankful to have had so many amazing choices. These surgeons are brilliantly skilled people with many many years of training at top institutions in the country. We felt so lucky to have so many great options. 

The surgery will be 6-10 hours long. He will have a craniotomy which is something we were hoping to avoid, and find someone with a less invasive technique. Unfortunately, the location of the tumor is smack in the middle of the brain, so a full craniotomy is our only option. It will take the surgeon 90 min to even get to that part of the brain, and then the removal of the actual tumor could take up to 4 hours. In total, he will likely be in surgery 8-10 hours. It will be a very long day. The risks are many. If everything goes perfect, he will still likely have some lifelong side effects, though they may be minimal.  We expect that he will have double vision immediately post-operative.  He will come home with a patch over one eye, and within 4-6 weeks, most of the double vision should subside.  It will probably be something lifelong, though only noticeable to him when he is extremely tired or has to really stretch his vision.  Most parents whose children have had the same surgery that I have been in contact with report that their kids bare notice it, and it really does not affect them.  The other possibility is some loss of coordination.  I believe he said this was only in 25% of cases, and with physical therapy most of that will go away.  Then, of course, there are major risks like stroke and paralysis, however, we have the utmost confidence in this surgeon that things will go as they should, and we are hoping for the best possilbe outcome.  His surgery will be at UCSF on Wednesday, August 16th.  Two weeks later, we will return to Boston to get him set up once again for radiation, and it should begin the 2nd week of September if everything goes smoothly.

Eli and Simon start school tomorrow, and I know it will be very difficult for Noah. He is one of those kids who just loved school, and truly defined himself as a student. I know he wishes more than anything that he too could go back tomorrow and feel like every other 10 year old he knows.    As time has gone by, he has become more and more attached to me, and less interested in seeing his friends.  We don't think he is depressed, and his attitude is just incredible.  He doesn't feel sorry for himself, but he just seems to feel most comfortable around family and some very close friends that are kind of like cousins.  My biggest hope for him is that he too can return to school as soon as he is done with radiation, but we will just have to see how he feels.  One thing we have learned through all this is that you can't plan too far ahead.

I will post after his surgery to let everyone know how he is doing.

Some pics from the last month

 Eli and Noah at the car museum in LA.  We went to meet with some doctors and were able to get some fun in.  Car museum, fun with cousisn, and even a trip to Universal Studios

 Our annual trip to Bruin Woods.  This was the first day.  He was so happy all week.

 Some of our Bruin Cheerleaders.  These were some of Noah's counselors during the week.  They made him feel like a "king" and awarded him the "warrior" award.  He was so happy.

A trip to Universal Studios in between many doctor appointments in LA.  His very best friend in the whole world came as well!!!  He has flown to Northern California 3 times to see him and it gives him a major boost each time.  We love you Noah Barme.

SFO - BOS - SFO

I am sitting in the airport right now as I write this post.  We are headed to UCLA family camp, a place where we have been going for the past 6 years.  It is like a haven for the kids, and Noah has been hoping and crossing his fingers we could go for the past 3 months.  He has successfully finished his 6 rounds of chemo, and we get to take a break from cancer for the next week to be with old and new friends, family, and most important to him, his cousins.  We are so happy this is able to happen, knowing what's ahead for him.  I am hoping he will participate like any other 10 year old, fishing, swimming, tennis, etc. and forget about blood draws, MRI's, spinal taps, exams, chemo, and everything else that has become part of this new normal. 

We have noticed he has become a little more clingy to us. He really doesn't seem to want to go to friend's houses, and when kids come to our house, he kind of hangs out in the background.  Although we don't think he is depressed, he just seems to want to be nearer to us and to home.  He did have one incident that we know about that was absolutely heartbreaking, and I know it scarred him slightly.  We sent him to an art camp last month for 3 hours each morning, with 2 very close friends.  Towards the end of the week, some of the kids asked him why he was always wearing a cap, and he didn't really respond.  Apparently, a 10 year old girl came from behind him and took off his cap. He was totally humiliated.  The friends he was with gave the girl hell, supported him, and everyone seemed to move on, but I know deep down it left him scarred and a little more aware of his appearance.  It infuriated us, left us so sad that he has to deal with stuff like that on top of everything he is going through, and has left us to protect him even more.  I have dreams of revenge.  Of course nothing substantial, but I'd love to have a word with that girl. 

We took him to Boston this week to get him set up for radiation.   The plan was to have an MRI, a CT scan, and simulations of the radiation so they could build the software necessary to obliterate the tumor.  Then, we were to return to Boston on August 15th to start radiation for 6 weeks.  I guess the best laid out plans are never as you expect them.   He spent 3 hours in the MRI machine, which by the way is absolutely torturous no matter what age you are, and he handles it better than I could.  His head must be secured in a cage like device so it is still, and then his body is buckled into a belt.  It is loud, hot, and clausterphobic all the way back inside that tube, but he handles it like a warrior.  He doesn't complain much, and typically gets through the whole thing with just one break for the bathroom.  I have a present waiting for him each time he finishes one, and  this time, I brought him a new lego set.  I've learned that little surprises for him go a long way, and he truly appreciates them.

After the MRI, we went to meet the doctors for the proton radiation.  The hospital in Boston is like a city.  Not only is it huge, it feels like a college campus.   Instead of a political science hall, or math wing, we found ourselves in the Proton Radiation center.  We arrived and were greeted by the kindest human being who runs the center.  He immediately made a connection with Noah and told him they would be seeing a lot of each other and would become fast friends.  Nothing better than a tootsie pop and a massage chair for a 10 year old.  We then were led to a conference room to meet our new team of doctors and support staff. 

They took some measurements of Noah's height and weight, and also measured the length of his spine.  It is likely his growth will be slightly impaired from the radiation to the spine, and so they will track his growth for years to come. We feel fortunate he has genes to be super tall anyway. There were about 6 people in the room other than us.  The head radiation oncologist who specializes in this type of radiation, a pediatric oncologist, an attending, a researcher, a social worker, and a nurse.  The group didn't even phase him.  Six months ago, he would have been so shy and afraid, but now he addressed everyone, conversed, asked questions.  He was as adorable as ever, and we felt so proud of him.

Unfortunately, we had a major blow.  They told us that the non-cancerous part of the tumor, called the teratoma, had not shrunk enough to proceed forward with the radiation and before we begin, he will need to have 2nd look surgery, a nice way of saying brain surgery.  Though this is something they told us about from day one, we could have never imagined he would need one.  His tumor is called a Nongerminatous germ cell tumor in the pineal gland.  It is made up of cancer cells and non cancer cells.  While the chemo has taken care of the cancer, it does not affect the non-cancer cells.  We needed the tumor to be no more than 1.0-1.2 cm in order to avoid the operation.  His is about 1.6cm.  Four millimeters?  That's the difference between surgery and no surgery. Its so little.  The width of my nail bed.  It's nothing. But apparently it's more than something.   We don't seem to have a choice. 

Without surgery, the tumor can grow and impair him in unimaginable ways.  If we do the radiation first and then wait to see if he needs surgery, it becomes even more risky with the scar tissue and  that's left from radiation.  Furthermore, the radiation has the potential to be less effective if we don't remove what we can first.  So, with many tears, trepidation and anxiety, we will proceed forward and get the surgery done.  I laid in his bed while he slept in our hotel room with tears running down my face the entire evening.  I just can't even imagine what this is going to be like, and I definitely don't want him to have to experience any of it. Either of us would trade places with him in a heartbeat if we had the chance.  We have the utmost faith in our neurosurgeon, but no matter how good he is, we are devastated by this and what could be. The pineal gland is smack in the center of the brain, and it is not an easy place to access.  We are trying to just stay present and remember and acknowledge that he did an incredible job on his spinal surgery and that the outcome will be just as good for the brain.  We have our minds set that this is the only possibility, and nothing else.   As of right now, it will be scheduled for the 15th or 16th of August and then we will return to Boston for radiation around the 5th of September to begin the radiation.

For now, we will get on our plane, and enjoy this week together, hopefully putting all of this away from our thoughts for the week, and eventually behind us for good. 

Catching Up - Doing pretty well right now

Hi all,
I am sorry I haven't written in the longest time.  I know many of you have reached out personally to me to check on Noah, and everyday I have meant to sit down and let everyone know his status, but I never seem to get around to it. So forgive me.  I will try to update blog every 1-2 weeks from now on.  Also, if you "follow" the blog, then you will receive a notice when I post something. You will need a google account to do so.

In general things for the past 5-6 weeks have been going pretty well.  Chemotherapy has kind of become routine for him, and he really doesn't fight going.  He has completed cycle 5/6 and will go in for the last cycle on July 11.  This last cycle really beat him up and he was pretty sick for over a week after receiveing round 5.  The particular drugs he needs for that series seem to affect him much more than the in-hospital treatment which will be our next round.  So, I am crossing my fingers that he will tolerate this next round pretty well.

He was able to get rid of his brace mid June which has been so freeing.  He can run around and play with other kids much more easily and is not as uncomfortable.  We were all so happy to get rid of it.  Funny enough though, he ended up feeling more secure with it on.  He was so worried that his spine wouldn't heal as well, that he was super diligent with the brace.  It showed us how strong and comfortable he feels about his situation, and he feels very secure that he will heal and move on from this nightmare.

We have had some really positive, amazing opportunities large and small that we have been able to celebrate that he could participate in.  We cherish all of our family moments together, and the bond that the kids have created is priceless.  We used to get into the car and within 11 seconds flat, someone would start fighting.  Boy have times changed.  No more fighting.  Eli and Simon (Eli especially) has developed so much empathy and strength and supports Noah in a way that is so heartwarming.  He cheers when Noah is able to do something unexpected, he brings him little presents when he misses out on something, he sits with him when he's sick from chemo, he incudes him in his playdates with his friends, and the list goes on and on.  His humanity is increidble and we are so proud of him. The bond between the 3 of them has grown tremendously as well.  Simon had an incident with a friend that was truly upsetting to him.  They all sat around and listened to him, and then went to his room to read to him till he went to sleep.  I can't say I would ever ask for my child to be sick, but this is truly a special heartwarming outcome.

In late May, Noah's immune numbers weren't very good, and he was not able to recieve chemo on time.  It ended up being the biggest gift ever.  Because of that, he was able to attend his 4th grade field trip to a mining town called Colombia.  We weren't 100% sure he would make it, so only his teacher knew.  We arrived at the school a few minutes behind everyone else and all of the kids were seated in at their desks.  Noah's teacher had left his desk open the whole year, and Noah walked into the room with confidence and self esteem and sat right down.  When the kids noticed he was there, they startted cheering and clapping.  I had tears rolling down my face uncontrollably.  What a high that was.  I drove him to the field trip and he as able to run around and buy candy, "mind for gold" and do everything else the other kids did.  His class had a horseshoe personally stamped with a message for him and presented it to him at the end.  It will be something he will cherish forever.

Also because his numbers delayed his chemo schedule, it also worked out that Adam was able to take him on the annual boys camping trip.  6 dads, 16 kids, 3 nights near Tahoe.  He was like one of the kids and it was so heartwarming and uplifting for him to feel like a normal kid for a little bit.  We were pinching ourselves that he did so well.

He had a spinal tap towards the end of June and we got very good news from that.  It appears that the cancer is undetectable.  While they are not able to test for errant cells, there was no cancer in his spinal fluid which was a huge victory.  He does still have a tumor in his brain however.  His particular tumor is made up of mixed cells.  Some of them were cancerous and then some were non cancercous cells called teratomas.  Chemo doesn't always destroy the non cancerous part very well.  Per his last MRI, his teratoma has not reduced to the size they were hoping, and so there is a strong possibility he will need a "clean out" or brain surgery to get rid of the teratoma before chemo.  Right now the teratoma was measured around 1.5 cm, and it needs to be 1 cm. or less to go straight to radiation.  We will have an MRI the week of July 25 and then have a better idea.  We are a bit hysterical about that possibility.  Because the tumor is in the pineal gland, they will need to enter through the back of the skull into the middle of the brain and remove what they can without affecting him.  The most common complication is that he wont be able to use his eyes to look up and rather have to move his head.  It is a rough thought to come to terms with.

Regardless of the brain surgery, our next big hill to climb will be radiation.  We will begin mid August, and we are going to Mass General in Boston for the radiation.  After doing extensive research, (and thank you to everyone who helped) we decided Boston or MD Anderson in Texas were our only 2 choices.  There are not that many of these proton machines in the country, and he needs something called crainal sacral radiation.  This means they will need to radiate his entire brain and spinal cord. While everyone who has the machine is very qualified, we found out that its in the art of the delivery that you minimize the effects.  Mass General has absolutely the most experience with this type of radiation, and so we are crossing our fingers big time that going there will make a difference.  The side effects (long term and short) can be horrible.  They range from extreme exhustion and hormone regulation issues, to a loss of processing abilities and even IQ.  The thought of what could be is terrifying, so its kind of a topic that is not discussed.  I have done a ton of research about it, but Adam is not able to even talk about it.

The radiation will not be a walk in the park.  It will be about an hour process every day.  They will customize a mask for him that they will put over his face and then attach it to the table so that he cannot move his head.  This part makes me the most upset.  The thought of him being bolted to a table makes the whole thing feel archaic and torturous.  They will do a lot of imaging to get him exactly in the right position, and then the actual delivery of the radiation takes about 7 minutes.  During this time I will not be able to stay in the room.  Apparantly the smell is horrible and many patients use vics vapor rub in the mask to cope with the smell.  They told us that 99% of 10 year olds are not able to get through the process without sedation, and so there is a strong possiblity that he will have general anasthesia 5 days a week for 6 weeks to get through the radiaiton.  I have been talking to him about this for weeks.  He is afraid of being put to sleep and feels that he will get through it.  I am sure if he can tolerate it for the first 3 days without sedation, then he will make it through the whole process.  We really would prefer he doesn't have to be sedated, but obviuosly we will do what we have to. We are headed to Boston to be set up for the therapy the week of July 25.  We will have a better idea then what his tolerance level is going to be.   I also found out that radiation may make him as sick as he's been with chemo or more.  Because it breaks down your bone marrow in the same way chemo does, patients can be very sick, so they are preparing us for that as well.

I have also slowly prepared him for the possibility of a brain surgery which he is deathly afraid of. (as are we)  I am hoping and praying that these last 2 rounds of chemo will have affected the turmor enough to give us a break!!!

Thank you to everyone for your love and support that you shower on us.  We feel it and plesae know that your prayers and support are truly appreciated and that we couldn't get throuth this without such a supportive group of friends and family.

 Receving outpatient chemo.  His quasi brother Eitan came to keep him company.  They played video games and had chipotle.

 End of the year party at our house.  We were thrilled.  Noah had about 10 friends over for swimming and BBQ.  Very special day!!!!

 An unforgettable memory.  Uncle Josh took Noah to the Warriors Final Game 5.  He was sooooo happy.

Boys from the 4th grade field trip.  Another special day!!!