On February 19th, Max had a regularly scheduled MRI.  Over the weeks prior, we had been seeing increasing symptoms in nearly every area.  He has been having trouble holding his upper body up, difficulty taken even a step with assistance, drooling, difficulty speaking, barely eating and times of reduced cognition and awareness.  Some of the symptoms are constant and some are intermittent such a random focal seizure.

Going in to the scan, we were expecting to see growth in either the new tumor lesion (in the new previously uninvolved area) or growth in his old tumor area.  The targeted drug therapies we are on are new to him (within the last few months) so our confidence in how they will work is still in question.  Based on how rough he looks clinically (outwardly), we were all surprised to see a stable scan.  They look nearly identical to his November scans.

Though no tumor growth is great news, it leaves us wondering what is causing such a dramatic increase in symptoms.  Because the tumor is stable, we don't want to leave those drugs but are also scratching our heads at what to change to reduce the symptoms.  Or if we even can.  I think we all suspect this is just the pre-cursor to the tumor figuring the drugs out and kicking off growth.  (Previously he experienced an area of tumor doubling in 4 weeks before we made this medication change.)

As Max just wrapped up the start of a cycle which usually leaves him VERY sick, we managed to keep it under control with additional anti-nausea drugs but this has also exacerbated his symptoms in terms of balance, strength and awareness.  So as we leave some of those meds behind for the remainder of the cycle, we are hoping he will stabilize.  

This Friday the 28th, his favorite band (Rare Americans) is coming to town so we are praying we can get everything under control so he can go and meet the band with his special VIP pass.  Send all your prayers and good vibes this way so we can hopefully make this dream come true for him.


-Katy, Max & Family

Recent pic is from a snow storm we had.  Max likes to have me make him snowballs that he throws at me while I try to hit them with the snowball maker!