We had a full day of appointments at Mayo today. Within the first few minutes of our long drive, an eagle flew over our car. Coby started with an EEG where they measure his brain activity. He wore a cap with electrodes glued to his head. First they put glue all over his head and slipped on a cap full of electrodes. Once that was on, they used a syringe of solution that they pushed into each electrode. To get them to connect, they pushed a small wooden dowel into the hole of each electrode to get them to connect to the brain waves. Once every thing was set up, they asked Coby to close his eyes and then open them. They asked him a series of math questions, gave him a picture to look at, then read a short passage. After that, he laid on the bed and had to look at a series of flashing lights. When that was as finished he closed his eyes and had to take fast deep breaths for 3 minutes. They wanted him to take a nap next ,  but we all laughed at that one. He hasn’t taken a nap since he was 1! 

After the EEG was finished we walked into the lobby of Mayo and I heard someone shout my name. Guess what, it was my friend from high school who was recently diagnosed with a brain tumor. We hugged and cried.  It was the exact sign we both needed today. Mayo is like a city. There are several buildings and 20 floors. We ended up on the same floor at the exact same time…. If that wasn’t God, I don’t know what is!!! Please say a prayer for my friend, Ashley as she undergoes surgery next month.

Our next appointment was with the infectious disease team where they reviewed Coby’s recent labs. Due to the high dose chemo and stem cell transplant, all of Coby’s vaccinations have been wiped out and need to be repeated. His lymphocytes were at 950 and they need to be at 1,000 to begin vaccinations. They felt he was so close that we could begin today. Coby was given 5 different vaccinations and was such a trooper.  We talked a little about the measles, mumps and rubella vaccine. That vaccine is a live vaccine and he can’t have that one for two more years. Right now, there’s more cases of measles in 2024 than all of 2023.  If we happen to get a case at Coby’s school, he’ll need to be homeschooled to keep him safe.  Pretty crazy stuff! He picked out two toys, one for Brek and one for Aspen. 

In the waiting room we saw Coby’s favorite Child Life Specialist, Emily! Coby gave her a big hug and chatted for a bit. While waiting, he had to fill out a questionnaire about his feelings, fatigue, and side effects. One of the questions was, “How happy are you with your life?” Coby said, “I’m so happy, I love my life.”  It just makes me so ecstatic to see his joy again! Our last appointment was with the neurologist to review the results of the EEG and test his cognitive abilities. The EEG looked great and the brain activity was normal. Coby performed a series of memory activities. One of them he had to remember 4 random words for a long time. The words were trap, pop, eagle, and Friday. How crazy that she gave him the world EAGLE!!!!!🦅 (Thank you, God for another sign). Coby has been on an anti-seizure medication since his diagnosis. They believe his seizure was from hydrocephalus, a fluid build up from his tumor. We needed to use the medication, Keppra, to help his brain settle during all the treatment. However, we are now ready to begin the weaning process and are praying for a smooth transition off the medicine!! 

Coby also received his survivor charm from Beads of Courage! 

#godsgotthis #cobystrong