Ill rewing...yesterday morning my dad, step mom, and step brother got here around 9:30am. The kids were so excited to see them! Riley of course was at school, but she knew they would be here when she got home so she was also super excited!!
We left for the appointment around 11am. When we got in the parking lot I was so nervous. I just wanted things to hurry up and be over with. We went and got checked in and did height and weight check.
9 Months 3 weeks 3days
Weight: 19lbs 2ozs
Then, waited to go see the doctor to get the history & physical done (it was by our neurologist so this I was happy about). He asked lots of new questions and looked Grayson over completely and cleared him for the MRI. So then we went down to the 3rd floor to wait for the MRI, but we got to go right in. No waiting! Good or bad??!
Well waiting was a pain-we did have to wait a half hour while the patient ahead of us was in the scanner. Grayson was not happy...he was super hungry and I sooo wanted to feed him! They had toys but he wasnt really interested.
Well our time came and they took him away...that part is the worst. The waiting wasnt so bad, not as bad as last time. It was cool in the waiting room because they have TV's with patients names and lets you know how things are going. So, yep we sat right in front of the Screen and watched it the whole time LOL.
The nurse came back and got us, and it was nice because it was the same male nurse we had before and I really like him, and so did Grayson.
Grayson looked so much better waking up this time as opposed to last time. He looked super comfy and they had him wrapped in his favorite blanky. I wanted to grab him and hold him but I didnt want to wake him because he was just snoring away.
Finally, the nurse took out him IV and that woke him up YAY! Right away he ate 2 bottles of the odd salty water hahah but he loves that stuff.
After he was doing ok we traveled back upstairs to meet back with the neurologist.
This is where things just dont seem right.
We went in to the room and I could tell the nurse was crying. She wouldnt really make eye contact so I knew things werent ok.
The neurologist came in, his eyes were red too, he pulled up Grayson's MRI and said the tumor is bigger. Its grown, not much, but there isnt much room for it to grow...he said it is pressing on a nerve that triggers throwing up so this explains the throwing up now.
He said its not good, Jesse started crying right away...and so did the neurologist even though he was trying to hide it. Me, I think I was numb...in shock...I just wanted to know answers on where to go now. What to make him better....what do I need to do to keep him here with me.
The neurologist said there isnt very many options because of where it is at. Its right in the brain stem.
He is referring us to one of "the best" children cancer doctors that he knows of. He said he called her on her cell phone because he knew she was on vacation, and she answered and said she wants to see Grayson.
So, this is where we are headed some time next week.
We are traveling down a road that I dont know where it goes or what is at the end.
I dont want my son to have to live a life like this, its just not fair.
I want to trade places with him!