The last laugh

I don't know where to begin.  It's hard to even imagine describing the events of the past few days in detail, so I am going to keep it as simple as possible so everyone has a true understanding of what happened to Ty, why, and how we plan to "fix it."

First, let me explain the part of the brain that is being destroyed as a result of Ty's current radiation necrosis.  Most of you know all of this, but just to recap: Ty's original tumor was growing at the base of his skull, the clivus, which is the bone that ends behind the nose/right above where the throat begins. The tumor was about 1.5 centimeters and it was discovered because it began to cause pressure on his brainstem and give him headaches/sweating at night. The brainstem is like "mission control."  It controls the flow of messages between the brain and the rest of the body, and it also controls basic body functions such as breathing, swallowing, heart rate, blood pressure, consciousness, and whether one is awake or sleepy. The brain stem consists of the midbrain, pons, and medulla oblongata.

Ty's original tumor was surgically removed endoscopically through the nose and mouth.  We didn't get all of it, and what was left was a piece that was closer to the brainstem area that was too dangerous to remove.  We treated with chemo but Ty got so sick, there were a bazillion complications, and in the end the tumor was a raging beast, growing rapidly, and his neurosurgeon went in again for an almost complete resection last February.  There was tumor artifact left on the wall of the brainstem/medulla, but this time we were able to go to radiation to destroy it.  There is more to the story, of course (the metastases in the cerebellum, additional radiation, countless CNS infections) but there's no need to recount all of that horror right now.

Radiation saved Ty's life.  His cancer is an extremely aggressive one and we don't ever doubt our choice to move forward with this option.  Unfortunately, Ty is now suffering from radiation necrosis and it is devastating.  Children under three years old can't even receive radiation.  Ty was only three and four months.  The risks are great.  I still can't believe that after all of this time, with so many advances in cancer care, that children are radiated in the same machines as adults.  That the chemo they receive is the same as adults - stronger actually.  That the advances in pediatric cancer care pale in comparison to those geared toward common adult cancers.  It's tragic and it's callous.  Lou and I so desperately want to help to change this in any way we can, and when Ty's health allows us more time we vow that we will find a way to better contribute to the cause and we hope we can inspire others to do the same.  But, I digress.  Back to Ty's current situation.

Today, Ty can't move his arms or legs very much at all. Both of his hands are in a very rigid, cramped position at all times. He can't hold his head up and his trunk is too weak for sitting. His head slumps down to the left. He is back in diapers. His chewing is weak and his speech is a whisper.  We are being advised to prepare for this new reality.  That physical recovery from this kind of brain trauma is not likely.  Of course, Lou and I believe otherwise.  Always believe. 

Our doctor provided a good analogy to help us understand what has happened.  Imagine that Ty's healthy brainstem tissue was coated with a layer of tumor that was being destroyed by the radiation over the short period of time during which it was administered.  At some point during the treatment, the radiation harmed some of the healthy brain cells, too.  They weren't killed, but let's imagine that a cluster of healthy cells were aged 90 years in the process.  So, they survived radiation and allowed Ty to heal and to grow stronger every day - still making all of those critical connections between the brain and the rest of the body, until one day they reached their maximum lifespan and began dying off (necrosis).  That is why radiation necrosis doesn't present itself for a year or two - even ten years - post treatment.   And when it does begin, especially in a critical area like the Medulla where the slightest change has a tremendous impact, the result is devastating - sometimes even terminal.

Everyone is pretty sure that Ty's latest episode has peaked, and that the necrosis has slowed down or stopped.  Can it start again?  Yes.  At any time.  There may be the next layer of healthy tissue that begins to show treatment effect.  But, as I said a bazillion times before, we have to believe in our hearts that this won't happen again. Ever. 

Ty seems to be approaching a safe zone because we are finally seeing slight signs of improvement.  The biggest one being his pain... it is finally slowing down.  We dropped his morphine dose down and spread it out a bit.  I am also seeing some physical improvement.  It is minimal, but I swear it fills me to the brim with positive thoughts and hope for amazing things.  Why wouldn't it?  We have seen amazing things from this little boy before.  Many times.  Today I swear I saw him open his left hand and lift a couple of fingers.  Lou got tough with him and made him straighten out his head to watch Max and Ruby on the TV above instead of on the ipad that we placed in his bed.  After a long, stubborn fight Ty proved that he was able to do it - to move his head.  His tone in his legs has diminished, he isn't so stiff.  We are happy about all of these tiny triumphs.   

The doctors are realists.  And I appreciate it.  I truly do.  We need to know what we are facing, and how challenging the road ahead may be.  But, I am Ty's mom.  Lou is Ty's dad.  We will be hopeful to no end.  We have seen him overcome even worse news with miraculous triumph, and we expect the same this time around.  If that doesn't happen, our faith will remain stronger than ever and our love for Ty unwavering no matter what. 

Yesterday was a day for being completely destroyed.  I was depressed beyond my own comprehension.  Throughout this entire journey and all of its ups and downs, I don't think I ever stared at a wall, blank, for as long as I did yesterday afternoon.  I even went home in an effort to enjoy Gavin and I felt like a stranger to him.  I felt as if I was incapable of being his mom anymore because I was just too sad to function.  As much as I wanted to be, I simply was not there.  I cried and I prayed and finally I found respite later last night. 

I was an emotional wreck when Ty's physical therapist stopped by the house and she gave me the best advice of anyone yet.  She said we should consider putting Ty in an inpatient physical therapy facility to squeeze out the most recovery possible during these most critical weeks.  At first I couldn't fathom it... more indefinite time living within the walls of another medical institution.  More time away from home, away from Gavin.  But it didn't take long for my dread to turn into inspiration.   

When I called Lou on my way back to the hospital last night, we were both feeling the same way.  We were energized.  We were excited.  We were practically talking over one another with ideas on how we can help Ty recover to his maximum potential.  We are still in the process of researching facilities and thinking about our next steps, but at least we know the direction in which we want to go - and it is 100% focused on recovery.  We will be there for Ty every step of the way, as always, and we will celebrate every small step with all of you.

I entitled this post "the last laugh" because I pray this latest setback is the last one Ty will have to endure.  I imagine cancer wanted to have one last chance at hurting us before we destroyed it for good.  But I hope to have the last laugh when all is said and done.  To watch my boy do amazing things so I can laugh out loud on his wedding day.  Cancer never wins.  Even if Ty eventually dies of cancer, then the cancer dies too.  Nice try, cancer.  Handicapped or not, I know that Ty's future will be a happy one.  God is guiding him and no matter how all of this turns out, I know we will all be okay.  So HAHAHAHAHAHAHA!!!!!  Fuck you.