To Duke and Back Again

The Preston Robert Tisch Brain Tumor Center
# 3 Baker House

Perhaps we had set our sights too high, but the trip to Duke was a strange mix of ups and downs.  After an intake session and extensive exam by Dr. Emil Lou, we spoke for several minutes with Dr. Friedman.  The MRI and pathology are uncertain -- the doctors at Duke think the tumor may be a grade 3 instead of grade 4.  This would be wonderful news, but comes with no guarantees and makes us ineligible for any of the trials or vaccines, so we've been sent back home with a juiced up protocol for chemotherapy (which will be monitored by our local oncologist) and a repeat MRI in one month.   We'll be heading back to Duke in November for a follow up.  We have a team working for us at Duke which includes neuro-oncologist Dr. Vredenburgh, his PA, a nurse practioner and a social worker along with Dr. Valente here in Jacksonville.  We met with the nurse practioner and the social worker on our second day and they provided us with some really good information and resources.  It's a great team to have on our side, but we are finding that there are no easy answers and very little is black and white in the world of brain tumors. 

Feeling a little worn out and need more positive energy sent our way.

Love,  Billy and Darlene

2 Weeks Post Treatment

We completed radiation and chemo on August 31st and headed up to New England to meet Kaylee, visit with Justin and Larissa and spend a couple of days in NYC where we got to have dinner with Cooper, Dave and Sylvia.  It was a tiring trip and we traveled slowly -- but it was well worth the time and energy 

As you can see, Kaylee is absolutely adorable.

We went for a follow up MRI yesterday.  We are undecided whether to get the results here in Jacksonville or wait to see what Dr. Friedman at Duke has to say.  It is a challenging time but we remain hopeful. 

On Sunday we'll be driving up to Durham for 2 days of appointments with Dr. Friedman and the Duke staff.  Keep your fingers crossed for a good outcome. 

We need your support now more than ever.

Love, 

Billy and Darlene