The Ride is Over

My beautiful daughter passed away one week ago at the age of 32 after a two year ride on the GBM roller coaster.  The past month began with an MRI that showed some changes after being stable on Avastin for a few months.  She had been having trouble processing language for a few weeks prior to the MRI and our NO suggested this might be due to late effects from radiation.  Like a flash, we were off to see the wizard (our neurosurgeon) hoping surgery might be an option. It was not.  We headed back home with a plan to add Etoposide to Avastin.  She had her Avastin treatment the next day while our regular oncologist tried to connect with the NO to discuss Etoposide dosage.  In the meantime, our daughter started to get unsteady on her feet.  She appeared to have weakness on her right side (her past tumors were in her left temporal and frontal lobes).  She began to fall without warning.  We could no longer leave her alone in her apartment.  She got worse each day until we realized it would not make sense to add Etoposide to her already weakened state.  We decided to bring hospice in still hoping she would be with us for at least a couple of months.  By the time we got a wheel chair and hospital bed she was essentially bedridden.  It all happened so fast.

I was able to be with her from the beginning to the end.   Her son was able to be with her before and after she died.  She passed away peacefully in the home she loved with the people she loved.  I'm grateful but I'm still so sad to be here without her.  Her obituary can be seen at http://www.legacy.com/obituaries/burlingtonfreepress/obituar

Thank you all for sharing your experiences.  While it's comforting to know we are not alone, it's also disturbing to know how many people suffer with this awful disease.  I wish you all time with your loved ones -- opportunities to laugh and express your love for each other.  All the best to you.

Mama Warrier -- I am so so sad for you.  This disease sucks big time and it's horrible that the life of a 32 year old woman with a child was taken. 

It sounds as though everything happened very quickly which meant little suffering (although not for you) and I'm sure you are grateful for at least that.

I wish peace for you and her son!  Thanks for sharing with us.

MamaWarrier,

I am deeply, deeply sorry for your loss. You are a wonderful mother and grandmother. I will keep you in my prayers and know that your daughter's memory will be a blessing.

H

MamaWarrier,

I am so sorry to hear about the loss of your daughter.  What a privilege to say you were with her from the beginning to the end.  You will never regret a minute of the time shared between the two of you. Oh...so many memories made in those two years!  How as a daughter, I would feel so at peace leaving this world knowing my mom would be there for my child.  And what a beautiful reminder you will have of her every time you look at that precious grandson of yours.

God bless~

Mama warrior,

I am so sad to hear this. There will never be another one like her...  each is so precious. I've been thinking about how each of us gives something to each other in life. Whatever she gave to you, I know you will hold with love and gratitude forever.

I've heard that the transition from caregiving to mourning is not easy. I guess it's more of the same, in some ways: one moment at a time... meaning: trust your heart, and tell others, as best you can, what it is you need. And live the best life you can, in her memory and honor.

With love,
Sarah

mother of Andy 27 dx gbm/pnet 1/09

Hello MamaWarrier,

I am so sorry to hear about the passing of your daughter. My deepest condolences to you and your family. I think it is wonderful that you were there for your daughter helping and supporting her during this difficult battle. I hope you can find comfort in knowing that, because I am sure that was a tremendous comfort to your daughter.

I will keep your family in my thoughts and prayers along with everyone and their loved ones fighting GBM, praying for a cure.

Take care,

Lori

May the peace of Christ be with you.  So horrible.  I hate it.  Roxy

I am so sorry to hear that you lost your beautiful daughter to the gbm monster. Thank you for sharing her beautiful picture and obituary with us. My prayers are with your whole family.

-Diana 

How sad I was to read about your lovely daughter's passing. This dreadful, evil dis ease robbing so many families of loved ones. My heart goes out to you and yours. Prayers and blessings to you all.

Clarabelle NZ 

My daughter seemed to be able to understand what we were saying much of the time but she had trouble finding words and putting sentences together.  She had short phrases she could manage to say and she knew she was having trouble.  It was frustrating for her.  Apparently her deficits were in the area of her brain responsible for language output. Eventually we were able to adjust and we tried to keep our communications simple.  Her facial expressions were priceless and she had her sense of humor and incredible smile throughout.

All I can say is have all those conversations you need to have before you find yourselves unable to communicate.  I send my best to you and your family.  This is so hard.