Day 38- ADJUSTING

A few days ago we came home from the Cancer Center, with an adjusted drug schedule that helped with the withdrawals that he had been suffering through. Each time we come home there's an adjustment period as we go from having all of his medications done for us, to handling it all ourselves. Each time I think 'how did they let us come home with all of this?!? We're not capable!!!' But somehow, we figure it out.

Our new normal is hard. It's a lengthy routine of medicines that we do 4 times a day. It's a careful feeding schedule to monitor his intake. It's a nighttime that's broken up into 2.5 hour segments where we are constantly refilling his feeding machine. It's constant stress as we always feel like we have forgotten something.

But home, even with it's stress, is still HOME. And it's sweet.

We have always been very social people, but caring well for Red means keeping him isolated from outside germs. This doesn't mean we can't leave the house at all, but we can't do all of the things we used to do. Go out to eat as a family, hang out with friends, or even have people in our home. We're having to be creative with ways to spend time together and feel like we're doing something special. We're creating new ways of 'going to the movies,'... where we all pile into the minivan, bring our own food, and drive somewhere, and then don't leave the van. I would laugh at anyone else that told me that was their version of family fun, but it's a HUGE deal for us!

And it will be like this for awhile... finding our new definition of 'fun', and trying to keep ourselves sane.

Today we went back in for ultrasounds to check blood flow to parts of the body that had been pushed by the tumor. Tomorrow morning we'll get up super early and be back at the hospital for an MRI to check the progress of the tumor shrinking. Next week is another MIBG scan. 

Giving Mommy nose crinkles while we wait on our scans.

To be honest, it's terrifying. The last time he went in for an MRI his airway closed as the tumor was pushing on his lungs too much, and his body couldn't handle breathing on his own without sedation. The moment they called a code blue for his room is something I'll never forget. I'm scared the tumor won't be shrinking as much as we need it to. I'm scared of more chemo. I'm scared of complications from sedation. 

I'm just scared.

Hoping, praying, believing for good news tomorrow.