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

Last 2 Days of Treatment

We are down to the last two days of treatment. Bill has held up well and had minimal side effects (except for the loss of hair and extreme fatigue). We now have two weeks off to let the radiation and chemo continue to do their work and will have an MRI on September 14th to evaluate the success of treatment so far.

Dr. Friedman at Duke has us scheduled for September 20th and 21st which will give him time to review Bill's medical records and scans and determine the best course of continued treatment. A number of our providers here in Jacksonville have reinterated that Bill is just the kind of guy Friedman is looking for -- his positive attitude and sense of humor give us all hope.

We are very excited by Dr. Friedman's message in the YouTube video. You can see it on the blog or click this link.

http://www.youtube.com/watch?v=P4p7LWaZhqE&feature

Keep the positive energy flowing -- it's what gets us through each day.
Love,
Billy and Darlene

We're going to Duke!

Dr. Henry Friedman at The Preston Robert Tisch Brain Cancer Center at Duke University will be meeting with us on September 20 and 21st. We are very excited.

Check out:

http://www.cancer.duke.edu/btc/

At Duke there is hope.

Nephews

Troy and Dean made a strong statement of support for their Uncle Billy when they showed up this weekend sporting shaved heads. They claim it made them more aerodynamic while bodysurfing. I don't know about that, but those Smith boys do have handsome heads.

Time Flies When You're Having Fun

As expected weeks 2 and 3 have been challenging. The head is bare, but the sense of humor is intact (if a little slower than usual). We've been struggling with extreme fatigue (both of us!!!) and although we have every intention of getting to the beach, most days even that is too much to accomplish. We did get to sit with our toes in the water on Sunday and a pod of dolphins entertained us for a little while.

Please keep the positive energy flowing. We need all the support we can get.

love you all.

B & D

Always Something to Smile About

Welcome Kaylee Mae Hora Morgenthau!

Kaylee was born to Larissa and Justin on Tuesday, August 3rd. Everyone is overjoyed!

Surf's Up

Stephanie and Dean came to help out for the weekend. Bill and Dean got in a little body surfing. The weather was beautiful.

Birthday

This week, daughters, Jocelin and Crescent were here for Bill's birthday-eve celebrations along with his brother Jay. Heather has been supporting us from day one and was here for the celebration as well.

Treatment Continues

Bill has completed his first week of chemo and radiation. He takes the chemo drugs 7 days a week and receives radiation treatments Monday through Friday. He'll be doing this until the end of August at which time they will reevaluate the tumor and decide what, if anything, to do next. We've decided that once this treatment is done, we'll probably talk to the folks at Duke who are on the leading edge of treatment for this type of tumor. For anyone who wants to google what we've got, the recommended site is http://www.abta.com/. The link is also in the side bar here. Bill's diagnosis is Stage 4 glioblastoma multiforme. As with anything on the internet, there's good info and bad info, but the American Brain Tumor Association is a highly respected site.

Week 2 promises to be challenging as Bill's brain is likely to swell from the ratiation and the tumor has not really had the opportunity to start shrinking. Most of his symptoms had significantly improved due to the steroids (he likes to show off his muscles :)), but now some of the initial symtoms have returned. The most frustrating is when he can't find the right word or becomes confused. He is also extremely fatigued. On the bright side, he still has his hair and his sense of humor.

We really appreciate all the notes, jokes, calls, cards, and text messages. Bill would like to respond to each of you personally, but just doesn't have the energy right now. We're hoping next week will be better. The doctors have cleared him for body surfing as soon as he feels up to it.

You can catch us at the beach.

Love hugs and kisses,
Darlene and Bill

P.S. Please pass this on to anyone who might be interested. Please also forward to me anyone's email who would like to be on the list.