Update from Friday's appointment

We had a long day Friday, filled with doctor visits.  Ty was so scared that we would have to stay at the hospital it breaks our hearts, but then to see how excited he gets when we are able to fulfill our promise and say "it's time to go home now," it was totally adorable.  

His doctors think that Ty is slowly improving, but they had few answers for better managing his pain and nausea.  Unfortunately, they believe Ty is suffering from what is called "pressure waves" resulting from the fact that he still has some residual tumor on his brain stem.  There aren't any options in treatment that will better address his pain because it is something that is completely unpredictable and we wouldn't want to keep him on a steady, high dose of morphine in anticipation of pain, but we will continue to give him pain meds as they occur.  He will continue to have good days and bad days.

If you're wondering why he is experiencing pressure if he has a shunt that is intended to relieve that pressure - join the club.  I'm told the shunt is working properly, but That the receptors controling his intracranial pressure are located on his brainstem and doing wacky things. The pressure waves do trigger the shunt to drain, but the reaction isn't always quick enough to avoid the resulting pain and nausea.  Who knows, I get so much thrown at me during these discussions (it's a stomach bug... it's from the surgery... he's dehydrated... he's doing great... he shouldn't be so tired... it's fine if he sleeps all day...) I don't know what to believe anymore.  But I do know he is one tough little kid and I do know that his doctors are doing everything they can.

I just sent off the last package to Boston to see if Ty is a candidate for Proton beam therapy. you wouldnt believe all of the records I had to pull together and what a fiasco it was.  I hope we will know by Tuesday whether we are going to Boston or staying in New York for therapy, we'll see.  We are meeting with the pediatric radio-oncologist at Sloan early next week in order to move forward with a plan on next steps for radiation and corresponding chemotherapy in New York in case it turns out that Proton Beam isn't an option (based on the location of his tumor).  Bottom line either way, we are preparing to begin radiation in as little as two weeks.  We want to take advantage of the fact that there is minimal residual tumor post-surgery and we don't want to give this disgusting disease any time to grow again.  Our oncologist used a great analogy of the cancer being a weed, and we are ready to go after every last bit of it with everything weve got.

Thanks for all of your support and love.  Hope you enjoy the rest of the weekend :)