Avastin Rocks

The last month has had it's ups and downs, but the latest MRI results are positive.  The tumor has reduced in size and the amount of swelling in Bill's brain has gone down enough so that his midline is no longer off-center.  This has resulted in clearing thinking, less aphasia and confusion.  We're still working on getting stronger -- both the temodar and avastin cause fatigue and the steroids have reduced muscle mass by about 85%.  Bill's workout is a walk from the bed to the recliner to the bathroom and back again.  Stairs give him a lot of trouble -- but with the the positive MRI results he is inclined to work harder.  Hopefully he'll decide to embrace physical therapy in the next week or so and that improved strength will make it a little easier to get out of the house.

Learn more about avastin here:  Avastin

We were able to get to Connecticut for Thanksgiving where Heather (who is now living in Massachusetts) and Cooper (NYC) joined us at Justin and Larissa's along with Larissa's parents.  A grueling trip but Kaylee's smiles and Thanksgiving with family made it worthwhile. 

Our most recent motto:  Carpe Diem.

We need your positive energy and well wishes now more than ever.  Keep us in your thoughts and prayers.

Love to all.

Billy and Darlene

The last month

When we started out, we thought we'd be able to give you at least weekly updates...but here it is a month since the last one and the time just disappears. We don’t really have much news, but at the same time, every day brings something different.

Over the course of the last month, we’ve had a hospital stay, another trip to Duke and an addition to the treatment protocol. The radiation and Temodar (chemo) were not as successful as hoped so the doctors have added Avastin to the mix. Avastin is a fairly new drug which has been found to successfully restrict blood flow to tumors and (in some cases) to actually destroy existing blood vessels. The first infusion was about 10 days ago and we are seeing some improvement. Billy seems to be thinking more clearly and is able to express himself with less confusion. He is more aware of his limitations and is anxious to get back in shape. So we are encouraged while still being sorely aware of what a miserable affliction this is.

We hope to start physical therapy next week, although Bill is acutely fatigued this weekend. The combination of Temodar and Avastin is taking its toll and his platelet count is lower than we would like. Jay is here helping out this week.

We return to the Jacksonville oncologist on Thursday to get the next infusion of Avastin (if his platelet count is high enough). So if everyone can give a rousing cheer for high platelets, we would be eternally grateful.


We are so thankful for all the well wishes and warm thoughts you continue to send our way. A special thanks to Susie and Joe for making us their vacation destination and to the Derek Smith family for the awesome get well package and fabulous pictures of Wyoming.


We’ll try to stay updated more frequently. But even when the blog remains silent, we have you all in our thoughts.

Love,
Billy and Darlene

One day at a time

We completed the first round of "juiced-up" chemo and Bill has spent the week recovering.  It is nasty stuff -- hopefully the tumor will think so too.  We're glad that Bill has a strong constitution and that he hasn't had much nausea, but the fatigue is debilitating and he sleeps most of the time.  We have begun to see an improvement, although by the end of the day (even after multiple naps), the aphasia, balance issues, weakness and memory loss worsen.  But -- we are hoping to get to the beach this weekend.

The plan is to repeat the chemo protocol once every 4 weeks with 3 weeks in between to recover.  We'll be going for another MRI on October 22nd and then it's back to Duke on November 16th.  We'll be meeting the oncologist who'll be handling Bill's care going forward.  Routine care is monitored by the oncologist here in Jacksonville, but at this point, she is taking direction from Duke.

We are hoping the next MRI shows some significant shrinkage in the tumor and surrounding brain tissue.  The last MRI was not definitive, but did show that there was still a lot of swelling and the area involving the tumor had not gotten any smaller.

We continue to be hopeful and have begun trying to get our lives back to "normal."  The last several months have been so full of doctor appointments and symptom and medication management that sometimes we forget to breathe the ocean air.  On occasion, when the aphasia (the inability to find the right word or understand what is said) is particulary troublesome, Bill will use the word "Heaven" as a substitute.  We think it poignant that's the word his brain has chosen.  We truly do live in paradise.  Check out the slide show on the right side of the Blog -- We really do live here!

Love,

Billy and Darlene

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.

The Dude Travels to Virginia

We made a quick trip to Virginia for Cassidy's baptism last weekend. It was a trying trip for Bill, but we are really glad we went. Spencer, Nicole, and Cassidy are moving to Portland, Oregon the beginning of September, so we feel very lucky to have had the opportunity to visit with them before they leave.

For the record, Cassidy was the "best" baby at the service.

Nice Surprise

Brianna and her family came for a surprise visit. The kids enjoyed feeding the turtles with the Turtle Whisperer.

The Journey Begins Here

Bill has been diagnosed with a glioblastoma -- a rapid growth inoperable brain tumor that is presently taking up most of the left side of his head. It is putting pressure on his speech center so his speech is slurred and he sometimes has trouble finding the right words. He is also prone to weakness on his right, dizziness and balance issues. He is at risk of seizures. However, his sense of humor is intact.

We have decided to go forward with treatment here in Jacksonville and have great confidence in his team of physicians. Justin was able (through a friend) to get us in touch with Ted Kennedy's doctor at the Dana Farber Institute in Boston. (Bill has the same type of tumor as Kennedy), but due to the urgency of getting started on radiation and chemotherapy as soon as possible, we'll be holding on to that option for some time in the future.

We will know much more in the next few weeks. Today Bill was fitted with a plastic mask which is used to hold his head in place and "build" a model of his brain and tumor for computer directed radiation treatments. We expect to start with radiation and chemotherapy on Monday or Tuesday next week. The treatments run for 5 days a week for 5-6 weeks and then a month off. The treatments can cause swelling and actually make his symptoms worse in the initial few weeks but should then significantly reduce the size of the tumor and improve his quality of life. The tumor cannot be cured so we are looking at getting the best out of the time we have. (Average 1 1/2 years...but we're looking for 7).

We apologize for not calling you individually. There is a lot going on and we don't have the wherewithal right now. We are keeping an optimistic outlook and are touched by your outpouring of love and positive energy. (keep it coming).

We love you all and our doors are always open. We expect to be spending a lot of time at the beach.

Bill and Darlene