Day one. I thought the count was over, but here we go again.
The countdown to feeling crappy. But at least it’s not day two. That is the day we do chemo and immunotherapy.
I wish I could say it was easier and that with my new found acceptance I barreled through it, but it has had its challenges. We have new behavior issues. Jacob is done with cancer. Over it. And I have new emotion in this drama, jealousy.
First the behavior…I could use some advice.
How do you deal with behavioral issues with a child going through cancer? How do you know what is behavioral and what is an “I don’t feel good” tantrum? And can you blame his behavior?! I mean the kid is going through things that most adults couldn’t imagine?! I really don’t know what to do, but all I do know is that we can’t continue a YEAR like this. Our nerves are shot. The screams are painful. It’s giving Steve migraines even.
Jacob screamed all the way into the hospital. We were the spectacle of the floor again. Screaming and screaming at the top of his lungs. I get him not wanting to be here, but I can’t pretend that this is the only place this is happening.
If anything doesn’t go Jacob’s way… he screams. We are all at our wit’s end. Benno included who shares a room with his brother. Last night, for example, Jacob screamed for an hour about bedtime. I’M NOT GOING TO BED! Then the threats…I WILL ONLY GO TO BED IF YOU BUY ME XXXX.
We may have created a monster.
When Jacob got dianosed the presents did not stop and then we started giving him presents on hospital days. We had no idea that the days would turn into years. So when someone asks…how many days have you been in the hospital? JUST COUNT.
But even this count couldn’t count this crap.
This is only half of it.
Yes. Half of it.
I walk in and want to vomit. My apartment is now a hoarders paradise.
So we are swimming in stuff and he wants and wants. He expects a present every day. And he really has us wrapped around his finger because we can’t even pick him up. We can’t grab him and throw him in the car, because his body is still healing surgery so it takes us forever to get him here. So he usually wins. No winning.
And today he had reason to scream. We had to access Jacob’s new port which does require a needle. When we made this decision we never imagined chemo, but here we are. However, he did it.
And then came the jealousy. I don’t think I’ve ever really been jealous. I know that sounds ridiculous, but this emotion felt very new to me. I never felt anything like it.
During the screams I ran into the neuroblastoma parent with the closest profile to Jacob. Same age, sex, diagnosis, etc. We both had scans last week. We are at the exact same spot in the process. She was so excited to see me. I get it, we are a rare breed. She proudly anounced that they have no masses and are NED. They fall within the majority like the rest of the families I know. It was like a punch in the gut. I wanted to rip her face off. It was intense. “We are ecstatic! We are NED!” she shared. AHHHHHHH (pee wee playhouse version).
But at least it’s not tomorrow.