Seeing is Believing

I wish I had my video camera with me, because you wouldn't otherwise believe how amazing Ty is doing today.  His MRI was performed this morning at around 9AM (everything is always late).  He was brought back to the room and easily extubated soon after. 

The MRI showed that all of the visible cancer has been removed, and that he is recovering surprisingly well.  There is a sinus membrane where one of the tumors was arising from that is a concern because it is a sensitive area to work with.  The surgeon removed all of the visible cancer by scraping at the membrane, but he had to be cautious due to the chance of fatal bleeding.  He is concerned about an aggressive recurrence in that area, so we are exploring our options with focal radiation at Sloan Kettering.  We feel there is a benefit knowing that the new chemo (the Temodar) is also at work… swimming away in this body… so I like to visualize that killing any microscopic disease left over or at least keeping it at bay until we can zap it with radiation.  I want so badly to declare Ty cancer free.  I prayed so hard for a successful surgery.  That all cancer could be removed without causing him harm, and that it NEVER COMES BACK.  I know what I've been told, but I don't care.  I will never stop praying for that.  NEVER EVER EVER EVER EVER EVER EVER COME BACK!!

When Ty was lying in bed with the tube in this mouth earlier today, he was obviously unable to speak.  But, when Lou asked him "who's the best good boy in the world?" he mouthed the word "me!"  Despite the high dose steroids he is on, he is also showing tremendous strength in his arms and legs.  You should have seen him pulling at his arm restraints trying to bring his hands up to his face to feel what the heck was going on.  And the kicking!  I am excited to get him tapered off the steroids and home quickly so he can restart a physical therapy regimen to get him back on his feet.  I was thinking about that today, and even though he was standing and walking somewhat independently back in October (around Halloween), he never even had a chance to physically recover from the MRSA meningitis he suffered after his very first surgery so he hasn't actually been able to walk normally since August 20th, 2010.  My dream is to see him walking proud on his one year anniversary - and never looking back.   

Yesterday morning, Ty's pupils were dilated and unresponsive to light.  His eyes were crossed.  His heartrate was very low and his blood pressure high.  He was lethargic and shaky.  His coordination was so off he couldn't slap me five, clap his hands, or play with his toys.   Today he has no problems clapping whatsoever.  He is sitting with an ipad on his lap navigating his TV shows.  He is speaking perfectly well and all of his vitals are almost perfect.  I'm telling you, you would not believe he underwent such a major surgery just yesterday.  The brain is so amazing how it can bounce back like this.  He looks amazing.  That's why we call him SUPERTY - our little fighter!!

The incision on Ty's head is about 5 or 6 inches long and it is right smack on the back of his head.  Up and down from the neck, just like the last one which runs alongside his right ear.  He has several scars on the top of his head over an inch or two in length from all the shunt revisions, two large horizontal scars on his stomach, the scar on the other side that his G-tube will make, a two inch scar on his leg from a skin graft, a scar from his medi-port placement and a scar on the other shoulder from another small procedure.  Lou and I sometimes talk about how hard it might be for Ty, feeling like people stare in gym class or something, but lately I've been thinking the complete opposite.  I see Ty as a healthy teenager who is proud to show his scars and talk about what happened with him.  I think he would proudly shave his head in honor of the pediatric cancer cause to show other kids that they can get through it and he won't have any fear about the potential of going bald as he gets older.  He will embrace it as more opportunity to talk about the cause.  I pray that he has that chance.  The chance to be the incredible person I know he will be. 

I am just so ecstatic.  Ty may even be able to go home as early as Friday, but we need to wait for the results from another CT scan tomorrow.  His ventricles looked enlarged in the MRI so they dialed down his shunt and we need to make sure that's working.  If not, well, let's not even think about that right now :) If I can get out of here and back home to Gavin by this weekend I will be the happiest mommy in the whole world.  If I have to stick it out until early next week, I can handle it, as long as my hospital neighbors don't mind my scraggly appearance for a few more days because I am showering in that hellhole as little as possible while I'm here. 

Love you all so much.  Thank you for loving Ty.