Dear Family and Friends,

Casey will return to Seattle Children’s Hospital on Friday, May 31, 2024 to have a brain surgery that we hope will make him seizure free.  This will be a craniotomy, similar in scope to the original brain tumor resection surgery of October 2018.  We expect to be in the hospital at least a week and possibly several weeks, depending on how the surgery goes, and whether he’ll need time in the rehab unit before returning home.  We’ve learned that it’s not uncommon for epilepsy to occur following the resection of a choroid plexus papilloma.  On May 31 the surgeons will remove the scar tissue that surrounds the original resection site – they believe the odds are in Casey’s favor that removing this scar tissue will make him seizure free and allow him to reduce or eliminate his seizure medications.  If seizure freedom is not achieved, it’s possible this surgery will still reduce seizure frequency.  There are no guarantees, but we feel hopeful.  And we continue to be grateful for the excellent care we’ve received to-date from everyone at Seattle Children’s Hospital.

Casey has spent significant time at Children’s this past year doing preparatory work for this seizure surgery (including an inpatient EEG, a weeklong inpatient stereo EEG and brain mapping), as well as undergoing laser ablation brain surgery of metastases.  Casey’s original choroid plexus papilloma diagnosis shifted in recent years to ‘atypical metastatic choroid plexus papilloma’, which means Casey will continue to battle metastases moving forward.  Some metastases are in inoperable positions, so frequent MRIs will continue, and Casey will start chemotherapy when the current metastases become large enough to be problematic for him.  The kidney disease that hit Casey right after he started experiencing seizures in spring of 2019 is currently well managed through medications, and his kidney numbers are significantly improved.  Casey hopes to feel well enough by the fall to resume his studies at Shoreline Community College.

It's so moving to return to the Caring Bridge site after a 5-year hiatus and be reminded of how our incredibly loving community rallied around us when Casey’s medical journey began.  We are grateful for each and every one of you.  Your sweet comments and words of encouragement got us through that shocking first stretch, and you have continued to buoy us through the past 5+ years.  We would be lost without your love.

Since Casey will be unable to communicate with his people for a time, we will be sharing updates on his behalf through this Caring Bridge site.

We welcome all the love and prayers you might send our way in the coming weeks. 

Much love,

Erica and Chris