Casey’s Story

Site created on October 19, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.

Casey had a sudden onset of double vision around October 10.   After some doctor’s visits Casey went to Children’s Hospital on October 18 for an MRI.

Unfortunately we learned from the MRI that Casey has a 1.7”x1” tumor in his brain (left cerebral hemisphere, parietal lobe), as well as a 2.5”x1.7” fluid filled area around the tumor.  We are in the ICU now.  We will be at Children’s until he undergoes surgery to remove the tumor, and test the tissues, so we can understand next steps.  Good news is he’s not experiencing any effects from the tumor besides the double vision at this time, and it sounds like the tumor is in a ‘favorable location’ for operation, and sounds like tumors that present like this are more often benign than cancerous (no promises).

On October 19 Casey will have a cerebral angiogram.  A catheter is inserted into an artery in the leg and threaded through the circulatory system to the brain.  This allows doctors to capture images of the brain and the tumor, and may allow doctors to block blood flow to the tumor in advance of the surgery.

Casey will undergo brain surgery to remove the tumor early next week.  Exact day and time is TBD.

Casey has been in good spirits.  He has no symptoms other than double vision.

We are confident we are in great hands at Children’s Hospital.

We will update this site as we learn more.

Newest Update

Journal entry by Chris and Erica Welch

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.
Patients and caregivers love hearing from you; add a comment to show your support.
Help Casey Stay Connected to Family and Friends

Your $30 donation to CaringBridge will help keep this site online for one month. And if you donate by Dec. 11, the CaringBridge Board of Directors will match your donation, dollar for dollar, up to $20,000.

Make your gift in honor of Casey by midnight on Dec. 11 to be counted!

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Tasks