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.