No smile today :(

Today was a day of rest for Ty.  It was not a smiling day.  It was a hot sweaty, uncomfortable, feverish day.  Ty was feeling so terrible, and I overheard Lou whispering to him, "I'm so, so sorry, Ty.  We tried so hard.  All of that medicine you've had, and all of those surgeries.  We really wanted them to work.  You have been so brave.  I'm so sorry."  I've uttered those same words a thousand times, as well. 

Everyone asks how we are doing.  The truth is that we are usually okay because we are so consumed with taking care of Ty.  As always.  We are in overdrive just going through the motions and keeping our mind, body and souls very busy by focusing on our special boy.  But on days like this, we feel like we are failing him. We watch Ty on the couch and we hear ourselves sharing our most brutally honest thoughts.  How we want him to leave us so he can finally feel better.  So this nightmare can be over for him.  We, too, will be given a sense of freedom that we won't even know what to do with after all this time living this life, but the absence of Ty will be so severe and so destructive, I don't know how Lou and I will survive it.  The void will be ever-present and oh so painful. 

We say, in our most rational voices, that we want the fight to be over.  We tell each other we are ready for Ty to be free.  But as soon as something happens where we realize it might actually happen?  That maybe the miracle of Ty jumping off the couch - fully healed - isn't in the cards?!?... we panic.  We freak out like you can't imagine.  Today was definitely one of those freak-out days.  This was a crazy house.

Ty was running a low fever for the duration of the day.  This has happened before.  He hovers around 100.5 - 101 degrees and just sleeps it off.  Today was different, though.  Today he had a cold, clammy sweat throughout his body the entire day.  His face was very pale and pasty. He was wincing in pain while in and out of sleep.  His hands and feet were cold when my usual tell-tale sign for a fever is hot palms coupled with a warm kiss on the forehead.  I've told you before what I've read about cold extremities - how it is a sign that the body is working hard to stay alive - so Lou and I walked around with heavy hearts all day.  We met each others eyes and exchanged a thousand concerns with wild panic in our eyes.

I spoke to his hospice nurse, who advised me to give Tylenol around the clock and we'll wait it out 24 hours before changing anything in his medication.  I spoke to his nurse and doctor from Sloan Kettering later in the day who asked tons of questions to help us determine whether we might be dealing with a bacterial infection, a virus, or something related to disease progression. Dr. Kevin seemed less worried knowing that Ty was up and down throughout the day and hovering at a relatively low temperature.  We covered the various scenarios so it was understood what Lou and I would and would not be willing to do and in the end we agreed to wait it out. 

Lou and I are not willing to take Ty to the hospital anymore.  He doesn't want to be there. We don't want to be there.  And, we are afraid that if we ever step foot in that place again, we would end up leaving without our son.  His doctor did not disagree with that fear.  Rather, he felt that would be a likely scenario as well, and spoke about the various things that would have to take place in the hospital setting in order to treat Ty given his symptoms (blood cultures, urine cultures, chest x-rays, CT, a potential lumbar puncture, etc.).  No thank you. This boy has done enough of that.  We tried so hard for so long.  What a fighter he is!  But, we have agreed that "no more" is the only option for Ty, and what happens next is in God's hands (as it always has been).  Thank you for helping us with your constant prayers, and for those of you who are not the praying kind - your positive thoughts and kind words are working wonders as well.

In true Ty fashion, he waited to get really sick until just 1/2 hour after I hung up the phone with his nurses and doctors who called it a day.  I checked his temperature and it started going up, up, up!  Stopped at 103.2 and I had already given him Tylenol an hour prior.  Even the cold compresses weren't helping.  Of course, we began to panic.  What if it keeps going up?  What do we do?  Can he die of a fever?  That's not what we want, is it?  Will his pain get worse and worse as his fever worsens?  What should we do!!!!  Thankfully, Ty has a very compassionate doctor who answers text messages and had me call him on his cell phone. He talked me through it again and I felt comforted.  We had an on-call hospice nurse visit who also reassured us that his cold hands and feet really weren't that kind of cold, and that if his fever goes up, well, it goes up.  We are taking it one step at a time because no one wants Ty to go through any additional tests or unnecessary antibiotics when we know he has underlying, terminal disease progression.  We all know he has been through enough already and she reassured us that he is comfortable right now as he sleeps through this fever. 

Lou and I were able to change him into fresh pajamas without waking him.  I carried him up to bed in my arms and didn't want to let him go.  I could carry him in my arms like that for eternity.  I don't ever, ever, ever want to let him go.

Ty's nurse at Sloan Kettering saw the newspaper article about the hawk release in Ty's honor.  She lives in Westchester and thought it was such a beautiful idea.  We both agreed that from now on, whenever we see a hawk in flight we will wonder if it's TLC :)  I love the idea of that.  Thank you, again, to everyone who was responsible for that.  What a beautiful way to symbolize all that Ty has endured and the freedom he deserves. 

Goodnight.  Tomorrow will be a smiling day.  I can feel it.