I am in hell

We left for the hospital shortly after my last post.  Ty's breathing was becoming so labored and he was so congested that we got very worried.  I didn't want to spend another night wondering if he needed to go to the ER, so we left around 5PM with the hopes that he could receive a chest x-ray and some medications and we could return home tonight.

During the car ride, I squished myself between the two car seats so I could be closer to Ty.  He was so uncomfortable he kept asking me to snuggle him in his scraggly, fading voice.  I would try to get myself in the most awkward, twisted position to snuggle him but it just didn't help.  He got worse and worse as we were driving into the city, as did the traffic.  It took us twice as long as usual to get here.  There were severe thunderstorms and flooding on some of the roads, it was a disaster.  When we walked into Urgent Care at Sloan Kettering, Ty was completely pale and the skin under his eyes was very red.  The cheery nurse came up to us with the blood pressure machine saying "so, what brings you guys here."  Before we could even answer, she had us whisked off into a room, and about 15 people followed her.  I thought everyone was overreacting at first.   The crash cart was brought in and it was like a punch in the face when I saw the defibrillator that is used to "jump-start" the heart.  An oxygen mask was thrown on him, his shirt was pulled off, his mediport needle was pulled out in order to put in two larger ones to accommodate the emergency needs.  In fact, the nurse was so frantic he ripped out the needle without carefully removing the steri-strips that was holding it in place, tearing a huge gash into the skin under his arm that requires a stitch.  During all of this, Ty pulled the mask down to tell me that he didn't even cry when the needles went in.  It was hard to understand, but I knew what he was trying to say by the proud look on his face.   We have since been here for hours on end.  Right now, we are waiting for an ambulance to take us to the Pediatric ICU across the street at Cornell NY Presbyterian Hospital.  Ty is not well, but he is such a fighter it's unbelievable.  He hasn't slept this entire time, he just keeps tossing and turning and trying to pull the leeds off, and the blood pressure cuff, and the pulse-ox.  It's really amazing how his spirit just doesn't give up. 

As he lays in bed trying so hard to tell me what he wants, I can't help but break down over and over again.  Lou and I are taking turns crying.  I'm the Mommy!  All I want to do is give him what he wants, to hug him and make him feel better.  But tonight, nothing I do is what he wants.  He just wants to not be here.  He wants everyone to go away.  He wants to snuggle his mom and dad in his own bed at home.  He wants to be cured of this horrible thing called cancer. I want that, too, baby boy.  So very much. 

Ty had an emergency CT scan tonight, and the imaging showed the lesion in his Cerebellum to be more than 5 centimeters.  It was less than 1 centimeter when we began the chemotherapy in May.  All we know right now is either the tumor has broken through the chemo and grown five times in size over the last five weeks, or it had a bleed which created an enormous hemotoma in his brain.  Either way, it is absolutely horrifying.  I'm told if it is a bleed that it will not dissipate on it's own or be reabsorbed, that it would have to be surgically removed and it is not in an easy location for that.  If it is tumor, well, I don't think there are any other medical options to address that but I will keep on praying. 

All I know for sure is that I am in a place right now that is all too familiar.  I am in hell.  I'm watching my baby suffer, getting worse and worse before my eyes.  I am watching my husband suffer.  I am terrified of losing my baby boy.  And I am trying to stay focused on what happened every other time I was here in this place.  Ty defied the odds.  He kept fighting when everyone told him the game was over.  I keep looking over at him and waiting for him to come back to me and start talking again.  I'm counting on the MRI to show that it was swelling, and blood, and that yes, it is being reabsorbed by his body.  It won't require surgery after all!  He received a large dose of steroids again, which worked wonders the last time we were in a similar situation.  It's heartbreaking to think of him on steroids again for so many reasons, but if it will save his life we'll take it. 

I am not in denial.  I am very aware of the potential reality that is waiting for me.  But I will not lose hope, ever.  I will never give up on my baby boy and I will always do right by him.  Right now, I am doing right by him by keeping my faith and praying for a miracle.  Please do the same for Ty Louis Campbell - Our Little Fighter.