Our journey is over at 6 years 8 months

My dear husband lost his battle last week. We thought we just might have another miracle in him as he had been on avastin for 5 months for a second recurrence. The MRI's looked better, but he was not improving in spite of getting down to 1 mg of decadron a day. The tipping point seemed to be his second gamma knife a year ago, which put him back on steroids for a while. We'll never know, but perhaps he'd have been better off on avastin then and skipped the gamma knife. But then avastin wasn't FDA approved for brain till May of this year. Just think, folks, when he was diagnosed there wasn't even Temodar. So we have seen progress over these 6 1/2 years and we pray you will be there long enough when the next new treatments start to pan out. Never give up hope.

I am so sorry for your loss.

My condolenses to you and your family.

I have to say that reading your post the only words out my mouth are WOW. 6 1/2 years, that is amazing, what a battle you both fought.

Really does show that we are making progress.

God Bless you and your family in your time of need.

 

Sounds like you were QUITE the team, and yes each year there is more hope. Even when we run out of time, we can hope that the information helps the next person too. Someday maybe there will be a cure. Please.

Much love and healing time for you and your family.

Sarah

mother of Andy 27 dx gbm/pnet 1/09

You are so right that anything may be found at anytime... so sorry for your loss but so happy that you had 6.5 years. I do hope they were good years! Blessings...

 

On 10/15/2009 winningteam2 wrote:

My dear husband lost his battle last week. We thought we just might have another miracle in him as he had been on avastin for 5 months for a second recurrence. The MRI's looked better, but he was not improving in spite of getting down to 1 mg of decadron a day. The tipping point seemed to be his second gamma knife a year ago, which put him back on steroids for a while. We'll never know, but perhaps he'd have been better off on avastin then and skipped the gamma knife. But then avastin wasn't FDA approved for brain till May of this year. Just think, folks, when he was diagnosed there wasn't even Temodar. So we have seen progress over these 6 1/2 years and we pray you will be there long enough when the next new treatments start to pan out. Never give up hope.

Deeply sorry for your loss. 6 1/2 years is encouraging but I know you would have liked more time than that -- as we all do.  They are making great advances and maybe one day there will be a cure. You can't second guess any of the decisions you made.  Everything you did was to keep your husband healthy and alive.  You are in my prayers as you begin a new journey in your life.

Husband dx GBM IV 2/09

I'm sorry for your loss.  Almost 7 years is amazing.  Peace and best wishes to you. 

You still are a winning team...just one of you is seeing the bigger picture now.  God bless you for being a caring wife, and may He comfort you in the days to come.  Well fought.You inspire us all.

I am sorry to hear of your lose.  Please take care of yourself now.  Don't "what if" anything, 6 1/2 years is such a hard fought journey.  You did good and don't let your mind go anywhere else. Not one of us knows what is the best thing, we can only do the best with what we know or the whole medical community knows for that matter.  We all pray for a cure.  So happy you had some good time.

Donna, Rob's wife

 

My prayers to you and your family. I truly admire the long fight that you and your husband fought. Rich M.

Thank you all. Never have the words of people I never met been so helpful in my grief.  I wish I could share all that we learned so it might help you. I posted on 10/11/07 about steroids, a particularly bad outcome for us if you want to look back. As my late husband said regarding education,      " You can never have enough and you can never give enough". So maybe I will find a way to keep telling our story.