Celebration of Life

On Saturday, May 21st, we celebrated Billy's life with a gathering of his closest family and friends at our home on Amelia Island.  We shared memories, photos and music.  There were tears but also a lot of laughter -- as he would have wanted.

We had dinner at Pablo's -- our favorite restaurant here on the Island.  It was very special to spend this time with everyone.

Following dinner, we finished the evening with a sand scripting -- Heather, Crescent and I put Billy's ashes in some meaningful words and drawings on the beach that

he loved. 

The tide came in and spread him far and wide. 

As Billy often said, "The ocean goes everywhere."

 We will have a cd of the photos and music from the Celebration to distribute to all who attended.

Thanks to everyone for your love, support and kindness. 

I couldn't have done it without you.

Love,

Darlene

"and you, vast sea, are Peace and Freedom..."

From Kristen

I received this email from my niece, Kristen.  I hope you enjoy her memory as much as I.  Perhaps it will be a catalyst for others to write.

Kristen writes: 
 All our love and thoughts are with you. I am so inspired by the incredibly persistent positive energy you have brought forth throughout this process. I love you and am so proud of you, for your strength, for celebrating life, for sharing this with all of us.

One of my most recent memories of Billy is from Nantucket for Aunt Jo's party. I had to get up really early to catch a flight, and Billy had already been on a big bike ride. He was so full of exuberance and happy to be experiencing the open road, his brow wet with sweat, his eyes wide like those of a child exploring nature...this is how I will remember him.

xoxo

Kristen (Jon & Wren)

Reflections of My Life

Billy slipped quietly away on Thursday morning, dying peacefully at home, exactly as he wanted. We received the support of Community Hospice during the last few weeks of Billy’s life and we are so thankful for their help. We plan to have a Celebration of Life later this summer and we hope you will be able to join us then. We are appreciative of everyone's love and support and encourage you to continue to use this blog.  We also welcome donations to Community Hospice as a way to “pay it forward” on behalf of Billy.  Their contact information:

Community Hospice
4266 Sunbeam Road
Jacksonville FL
904-268-5200
http://www.communityhospice.com/

Billy asked that the following be conveyed to all:  

• I want you to know that I love you.
• I wish to be forgiven for the times I have hurt you. 
• I forgive you if you may may have hurt me in my life.
• I wish for my family and friends to know that I do not fear death itself. I think it is not the end, but a new beginning for me.
• I want all of my family to make peace with each other, if they can.
• Think about what I was like before I became seriously ill. Remember me in this way.
• I wish for my family and friends to respect my wishes even if they don’t agree with them.
• I want you to look at my dying as a time of personal growth for everyone, including me. This will help give meaning to my life.
• I wish for my family and friends to get counseling if they have trouble with my death. I want memories of my life to give you joy and not sorrow.

If anyone asks how I want to be remembered, please tell them:
 -- "Some of it’s magic, some of it’s tragic, but I had a good life all the way."

Love Billy and Darlene

Changes -- quick update

Billy has been talking a lot lately about quality vs quantity of life.  We've been having this conversation since he was diagnosed, but recently it's become a focal point. 

Although his recent MRI seemed positive, the fact remains that there is nothing absolute about the treatment and symptoms of GBM.  The last few weeks have been more and more trying -- fatigue (sleeping 20 hours a day) and weakness with the inability to stand; more confusion and loss of short term memory.  We were supposed to see his oncologist last week and Billy just didn't want to go.  He has chosen (for the time being) to give treatment (Avastin and Chemo) a break.  To ensure the best "quality" of life, we met with Community Hospice this morning.  We will be receiving medical and psycho/social assistance here at home with Darlene continuing as his primary caregiver.  We are keeping our options open, and can restart treatment at any time. 

Your love and support is encouraged and appreciated although Billy has a very difficult time with the phone.  He is fighting a thrush infection which has reduced his voice to a whisper.  Cards, text messages, emails and this blog are a great way to let him know you're thinking of him.

We want everyone to understand that this is a positive step and should not be construed as "refusing" treatment or "giving up."  Our outlook remains optomistic and we find something to smile about every day.

We'll keep you posted.  Everyday is a new adventure.

Love,

Billy and Darlene

Happy Spring!

Has it really been nearly 3 months since we've updated the blog?  Those 3 months have been a blur as we continually learn and adjust, learn and adjust.  We continue to be so appreciative of our friends and families as they support us in so many ways.  We love getting your cards, e-mails, texts and calls.  Know that each one is important to us even though we may not always reply.  Our daily routine keeps us pretty busy between Darlene's work, schedules for medications, doctors appointments and normal household responsibilities.  Billy even has his own personal trainer who comes 3 days a week to help him work out and build up some muscle strength.  When Arnold (yep, that's really his name) doesn't show up to put Billy through his paces, we still try to get in at least one exercise session a day.  This week we were back to Duke for a check-up and got good news.  The tumor does not show any growth and may even have shrunk slightly.  This means that the treatment regimen we've been following seems to be working which is wonderful news.  We will probably work with our doctors to see if we can tweak things slightly as Billy sleeps quite a bit during the day and we'd like to see if adjusting medicine will result in less fatigue.

We are scheduled to go back to Duke on May 24th and our goal between now and then will be to continue to help Billy regain his strength.  Although he is dependent on his wheelchair now, he promises a walk on the beach by the summer.  We continue to find joy in simple pleasures and Billy's sense of humor keeps us smiling.

Keep us in your thoughts and prayers as we keep you in ours.

Darlene and Billy

Happy New Year!

We had a quiet Christmas at home and headed off to Duke on December 27th.  Billy had an MRI the prior Thursday and his doctor at Duke was pleased with the results.  The tumor has not increased in size and the swelling has continued to lessen.  What that means for us is an improvement in speech and comprehension although severe fatigue and weakness continues to be a problem.  Bill had another round of Avastin and Temodar last Thursday and had a couple of very difficult days but seems to be on the upswing today.

Cassidy brought her mommy and daddy all the way from Oregon for a visit.  Heather and her friend, Fred, are here with us as well.  They have all been so helpful and it has lifted our spirits so much.  Sometimes you don't even recognize the burden you are under until someone comes along and takes the weight for you.

We hope that everyone got everything they wanted for Christmas and that the New Year brings all good things.

Love,

Billy and Darlene

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