You know what I want to blog about? I want to blog about all of the fantastic things that are happening and HAVE happened. Mostly, the fact that Gideon's numbers went up enough to receive the Methotrexate spinal chemotherapy and the Vincristine push. We are starting our next phase, and it looks like this: one week of Decadron (steroids), 6MP chemo daily, Methotrexate chemo once a week, Bactrim three days a week, and any indigestion/tummy meds he may need to deal of all of these toxins. He can do this! We can do this!
If it sounds like I am trying to cheer myself into a rah-rah-rah induced state of euphoria, you're right. The steroid raging is the worse it has ever been. Ever. Maybe I have blocked it out, but I don't think so.
I have to be near Gideon at every moment of the day because there is no telling what he might do. Brody was coloring a detailed puzzle that is decorated first, and then taken apart to reassemble. Gideon tore a marker out of his hand, scribbled all over his creation, and ran off. Brody had been working on this project for over an hour and he was absolutely crestfallen. He yelled, "You RUINED it Gideon! Why would you do that?" Gideon's answer? Beating Brody over the head with a Hotwheel car. I pulled that boy off of his brother so fast. Unfortunately, he is a strong little guy and kicked me in the face. It was my turn to have a bloody nose.
The saddest part is the guilt Gideon feels once he realizes what he's done. It's difficult to console him as his body shakes with silent sobs. Tears just pour, his mouth is agape, and all he can do is suck in air. How do I do this? Anyone have any pointers? I don't want him to feel like his behavior is acceptable, but he really is not himself. I bet I would be a MONSTER if I was given what he's given.
Today was a cling-on day. He asked to wear jammies all day. He wanted to lay on me. He is also complaining about his fingertips feeling like there are little shots "eating them"... He complained about this with his feet the last time he had Vincristine, and at that time he wanted to wear shoes too tight to help with it. Today he wanted me to squeeze his hands.
At nap time, I didn't wrap him in his blankets the way he wanted me to. He tried to explain this new form of bundling, but I guess I wasn't getting it. He started to scream in a way that scared me into feeling like I should call a priest and get an exorcism underway, STAT. It was intense. I tried to deflect attention. I tried to make a cozy blanket fort. I sang. I danced. The scary screams only escalated, followed by punching me and clawing me. I held his little arms and said, "Breathe! Breathe!" I let him go once he started to calm down. And then, it got crazier. Gideon started pounding on the window with his fists and screaming, "Don't LOOK at me, SAAAAAAAAANNNNTTTAAA!" over and over and over. "I don't want Santa to SEEEEEEEEE me!" and he continued to flail and cry.
He then collapsed on his pillow in his trademark brokenhearted cry. "I'm on Santa's MEAN list!" he wailed. Oh. Sweet baby. Thankfully, "Santa" called soon after, assured Gideon he still loved him, asked him to say sorry to mommy to make up for it, and Gideon was better. He fell right to sleep.
The nap was a 30 minute bliss-inducing silent stretch. I laid on the bed and just stared at the ceiling. I drooled. I turned off my brain. So, my house looks worse than any frat house I have ever witnessed, but so help me, I could not move.
Gideon woke up HUNGRY. Hi, steroids. He asked for a bagel. A Big Apple bagel. I tried to make the bagel just like his favorite bagelery (as compared to a "bakery"), but when he took a bite, he glared at me and barked, "This is NOT a good bagel for a Leukemia boy!" I had to smirk a little at that comment. Although annoying, it was a wee-bit cute. I asked why and he said, "It tastes like POOP! This is a POOP BAGEL!" and then he threw it at my face. The boy has good aim.
Tom and Brody were skiing all day and then went to a hockey game after that. Anyone want to break me out of here tomorrow? Please? They have another hockey game to attend tomorrow, but they may have to cancel all for mommy's sanity.
I always feel guilty when I complain like this. Gideon's cancer is under control. He is responding beautifully to the chemo. He has ENERGY and vitality. There are too many mommies with babies who are not doing even fractionally as well as our boy. I realize we are blessed in all of this, but right now I'm all wah-wah-wah. Let me wah. And, be my getaway car driver, PLEASE.