Last Wednesday (January 23) marked the 3 month anniversary of Casey’s brain surgery. We spent the day at Children’s Hospital at several follow up appointments. Casey will have an MRI every 3 months for a while to see how his brain is healing. Wednesday’s MRI showed some scar tissue where the tumor had been removed. This is common and is not cause for alarm. The first review of the MRI raised concern that the tumor may be growing back (which we knew was unlikely but possible). Later in the day a large team of doctors reviewed the MRI images and concluded that what they were seeing was scar tissue from surgery, not regrowth of the tumor. To be cautious, Casey’s next MRI will be moved up to six weeks from now.
Casey still has intermittent head pain most days. Wednesday’s MRI showed that Casey’s ventricles are a little smaller than before surgery. This could indicate that Casey’s shunt is draining too much cerebrospinal fluid, so a doctor adjusted Casey’s shunt to drain a little less fluid. This may reduce headaches.
Casey has been back at school since the end of November. He’s now taking 3 classes: Jazz Band, AP Language Arts, and US History. He has attended just over half of his class periods. The quality of his work is similar to before surgery, but his endurance is still very limited. He sometimes needs long breaks after as little as 15-30 minutes of schoolwork. We’re considering dropping down to 2 classes next semester. Casey’s goal is to stay on track to graduate in 2020.
Overall, Casey has observed that the pace of recovery has slowed. This is both expected and disappointing. It’s reasonable to anticipate that Casey’s energy and endurance may eventually approach pre-surgery levels, but the timeframe for that is probably closer to 2 years than 3 months. It’s challenging to adjust to new limitations and the new normal. It’s disappointing when doing homework or spending time with friends leads to a headache. And it’s a drag to be awake with head pain from 2-4AM. It’s frustrating to feel tired and need to lie down many times throughout the day.
Casey is spending a lot of time playing the piano, focusing particularly on the music of Thelonious Monk. His playing is as sharp as before surgery and he is continuing to improve. He is able to hang out with friends, go for walks, play video games, listen to music, and do most of the things he enjoyed before surgery, just for much shorter time periods.
We continue to be thankful every day for Casey's amazing medical care and for the love and support of so many people in our lives.
