Max and I spent a few days up at Seattle Children's for lots of tests and appointments. No shocking findings or major news. We spread the appointments across a few days to try and conserve Max's energy so he could enjoy visiting his team versus sleeping through his appointments like last time. Here is the short version of his appts:

1. Ambulatory EEG/Neuro appt - This is why he was wearing the white cap. We watched his brain activity over 3 days to see if he had underlying seizures we were seeing outwardly. His neurologist described the results as looking like what we would expect from this type of tumor at this stage. There is a general slowness in his brain activity from the tumor and/or treatments. This is contributing to his delay/difficulty with speech. Nothing that they are seeing that require changes to his meds.

2. Echocardiogram - Checking to see if his heart has healed from his previous rounds of chemo. It has not just healed but is actually stronger than prior to beginning the chemo. We are cleared to resume the old chemo (Mekinist). It was the one he took daily and I often referred to as the "backbone" of his treatment. Working on insurance to get this prescription back.

3. Blood work/Oncology appt - Dr. Crotty is thrilled that the heart looks as good as it does. Bloodwork is also fine to begin another round of etoposide. No major developments. Got to see a lot of his favorite staff including Wade our social worker. Max had a lot of fun showing everyone that he can still use his middle finger to flip people off!

4. Botox injections into pec muscle - Max's left arm his been getting wedged under his body in bed as his mobility has lessened. Our physical therapy docs suggested trying a few botox shots into his chest muscles to try and relax that. No noticeable difference yet but it can take up to 4 weeks to reach maximum effect. 

Next up: MRI to look for tumor growth. Total crapshoot on how it will look. At this point, I have much less anxiety because he already looks outwardly how kids look in progression. So I am just viewing it as information to help guide our decisions. Mostly I am curious if the newest spot has grown in the globus pallidus. His symptoms are all basically the same so I could see it going either way.

-Katy, Maximus & Family