Byron’s Story

Site created on September 16, 2020

Just yesterday, Byron mentioned he was in the best shape of his life; minus the brain tumor of course!  What a wild ride these last few weeks have been.  A month ago after an epic river trip in the Grand Canyon with family, we received Byron's MRI results showing a large (1.8" approx) skull tumor that has tossed our world upside down in the already crazy year this has been.  :(  Ironically, the  only symptom that led us down the road to the eventual MRI was double vision on 3 occasions over the period of 4 years.  Each time, eye therapy over the period of a few months helped the problem - and thus we were told it was age and muscle weakness.   After the third time (and after a mtn bike crash landing on the right side where the tumor is where he had blurry vision for several minutes this year), we thought it prudent to rule anything out with an MRI.  Other than knowing it's a slow growing tumor that has been there for years, the news of the location and size took the neurosurgeons by surprise and they quickly had a CT scan (which showed where the tumor had chewed through bone and parts of his skull) and referred us to the best skull surgeon at OHSU in a matter of days.  Unfortunately, we are out of network with our Pacific Source insurance with OHSU, which had us searching elsewhere since surgery is his only option.  The surgeons mentioned that a year from now, it would have been inoperable, so we count ourselves lucky he crashed on his mountain bike! Wendy's family grew up in NC, which led us to the neurosurgeons at Duke (you kind of want the best possible, right?), which ironically is 'In Network' for us (go figure).  We may hate their basketball but we LOVE their hospital!  So, we get one shot at removing as much of the tumor as possible (no biopsy in order not to disturb the site to make it more difficult for surgery), which surrounds the carotid artery by 180 degrees, chewed away some of his ocular nerve (hence the double vision) and a portion is sitting right next to his brain on the top of his head.  The tumor itself isn't connected to any brain tissue just sitting deep underneath and around a bunch of delicate auditory, visual, balance and facial nerves - YAY :(. Scary to say the least but Byron (and for everyone that knows him, knows this) is in positive spirits and very hopeful for a positive outcome.  Exuding positivity is just who he his; why would a brain tumor stop him? Another question we get asked is if it's benign or cancer.  We just don't know but it could be either.  It would be unlucky if it is a Chordoma vs a Chondrosarcoma (which is what the initial diagnosis is).  Pathology will be done during the long (8-10hr+) surgery so they know what margins are needed and next steps for radiation.  Surgery is scheduled for Oct 8th.  We will be doing a prayer circle during several times during this day and will update here on times.   Thank you for your support and love during this difficult time for our family - we have certainly felt it!  In order to keep everyone up-to-date, we will be updating this page and welcome your love, thoughts, well wishes in the comments. A GoFundMe page  - https://www.gofundme.com/f/roe-family-support - has also been setup to offset some of the financial strain in 'Ways To Help'. All our love, Byron, Wendy & Shelby (6)

Newest Update

February 11, 2021 - The End.

Journal entry by Wendy Roe —

It is with the greatest pleasure and biggest sigh of relief that we can finally proclaim this our 'last update!'

Byron came home 2 weeks ago and although still dealing with some side effects, like the neverending nausea (with each week we hope will actually end), we are all excited to finally adapt to our new normal and do the things we love to do together again!

We have barely kept it together these last 6 months but because of our family and community that came together for us and still continues to do so in beautiful and surprising ways - we did it!! We love you and are so grateful.

We are in process to put a ceremony together (and destroy the mask he had to use for treatment! ) to mark the end of this difficult journey and count our blessings it wasn't worse with the myriad of ways it could have been.

Now...onward to brighter days filled with adventures and growth as we can delightfully put this time in our lives behind us.  See you Cancer, you suck!  

Xo, The Roes

PS Yes that is a 220K bill, not including the 100k surgery.  If it wasn't for the help of our parents, the GoFundme donations, Sue & Greg as our Seattle hosts and Smartz (my company that was so flexible for 6 months, 4 of which I was off completely) - and of course our insurance (which was still 15k), everything we would have built in 20 years would be lost.  Man our country needs a change....just saying!

The second Polaroid is of the team in Seattle helping with his treatment...and lastly our welcome home celebrations!

Read More of the journal titled "February 11, 2021 - The End."
Patients and caregivers love hearing from you; add a comment to show your support.
Help Byron Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Byron's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Byron

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

Comments Hide comments

Load more comments
Read More Journal Entries

Show Your Support

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

Personal Fundraiser
Support Links
Helpful Requests
Go to Ways to Help
SVG_Icons_Back_To_Top
Top