Roid Rage, Pain, and Humiliation

The last two days have kind of been blurred into one. The morning he woke up from surgery was like the beginning of a whole new life for him. Up until now, he only knew he had a lump on his back, and that it needed to be removed. He also knew that they were not going to be able to remove the entire thing, and that he would need medicine to get rid of the rest of it, but we wouldn't know what until after the surgery. I assume that he thought that after surgery, his back would feel better, and that his ordeal might soon be coming to an end. 

Quite the contrary. He woke up to find a catheter attached to him, an inability to move on his own, and a tremendous amount of pain. He was screaming, agitated, crying, and hurting, and could not understand nor comprehend why he had to be here and suffering so much. I was the main target for anger, and took quite a beating. Pinching, hitting, and screaming at me. Blaming me for the entire thing. But mostly, I think internally he knew that we were here for the long run, and the life he was telling me "I ruined" was now changed forever.

They scheduled him for an MRI this morning for both his brain and his cord. We were told initially that they would need to do a brain scan post surgery, and it sounded like something that was way down the line. Apparently because of the uniqueness of the tumor, they moved up the MRI to this morning.

It was a disaster. His worst nightmare coming true again. The dreaded anesthesia. He is so fearful of being put to sleep again that he was an absolute mess. Adam stayed the night, and helped him through the anxiety. I wasn't here to witness what happened, but he was overly anxious, screaming at people, and inconsolable. Once he came out of surgery, the mix of the anesthesia and steroids came into full effect. 

He was telling the nurses to f-off and shut their mouths, and more superlatives than I knew he knew.  I was kind of embarrassed, although deep down, I was kind of happy for him that he was able to scream whatever he wanted. It was almost an out of body experience, and one that the in house psychiatrist decided needed more medication. 

MRI came back with good and bad news. They found the tumor actually originated in his brain near the pineal gland. It then dropped a "seed" into his spinal cord where the other tumor was found. He has a very rare form of tumor called a Yolk Sac tumor, and they don't believe it's been there very long. Maybe a few months.  The upside is that the treatment is very effective and the cure rate quite high.  

The treatment plan will consist of chemo six times every 3 weeks. Sometimes we will be outpatient, sometimes inpatient for 6 days depending on which cocktail he needs. After those 18 weeks, we will take about a month long break and then start 6 weeks of radiation. If all goes well, we are hoping he will be able to start 5th grade on time. Its very likely we will go to San Diego for the radiation because of the state of the art equipment they have there that doesn't radiate more than what is needed. 

We are waiting for him to get a port right now and then they will begin chemo tonight.