We had a breakthrough with anesthesia today. It has been so difficult to feel his rage as he wakes up. The screaming, hitting, choking. All the things that are not even remotely our little guy. Dr. McDivitt is an angel. She saw him choking me two days ago and thought about it all night. She woke up thinking about it. Same here. 

She said she had only seen this a couple of times in her 46 year career. It clearly wasn’t delirium. He was angry. She tried yesterday and today without benzodiazepines.  Yesterday Matty told us he was better, and today was the best yet.  He woke up a little irritable but not angry, and he was almost his normal self within a few minutes of leaving the PACU!  We could breathe because he was tired and hungry but calm.

I said to Matty that it is interesting the things in life that you are grateful for when you experience something as devastating as aggressive brain cancer: we are thankful beyond measure for this. We are thankful to have a doctor like Dr. McDivitt in our lives. She cares so much about the families she helps to think about him all night. She was right! 🙏

I came back from a work trip to Minneapolis. It is so hard to be away and so hard to see him in pain. So hard to know what is best for Charlotte. So hard to be away from home. So hard to depend on our parents. So hard to lean on anyone. Everything. Is. So. HARD.

Seeing my physicians/friends and coworkers/family really helped ease being away. We are so lucky to be so loved. Charlotte has made a friend at RMH. He has cancer of the nervous system. His parents are in jail. His grandmother/caregiver passed away. His grandmother’s coworker adopted him. As I am always making lemonade, this reminded me that things can always be harder. 

I never thought I would think anything could be harder than fighting for your beloved son’s life. I suppose it is all about perspective.

We will have a new site that we hope you will follow! We are trying to set up text notifications as well. We have a Facebook group now as well where updates will be loaded. We want to be able to preserve his journey. Please share the word. 

And we have such cute shirts coming that 100% of the proceeds will go to Rally! Foundation to field childhood cancer research! We want know one to feel the way we feel. Ever. 

See photos for T-shirt sneak peek. Colors and cuts and sizes of all sorts.