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.