Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Connie and Kevin,
We are so saddened as we read your latest post. Please know that you both are in our thoughts and will continue to be in our prayers. Our hearts are breaking. This horrible disease needs to be stopped. I want you to know how much you mean to all of us here. We are sending love from PA.

Connie, please relay my well wishes to Kevin. Enjoyed looking at your guys' wedding in sunny Hawaii..

Dear Connie and Kevin

All of our love and hugs coming your way from central Kansas.
Please know and feel our continued hugs and prayers always.
Please let us know if we can help in anyway.

Nou ka hale..

All our love
Debbie, Joshua and M

Dear Connie and Kelvin,
My heart breaks for Kelvin and you... I'm praying for less pain and less discomfort to Kelvin...

I just wanted you to know how much we are thinking about you!
Xoxo
kathy

Hey all, I am very sorry to tell you all that Kevin died last Friday morning, probably shortly before 9 am. He died at home, on the bed in my office. We were able to make him as comfortable as possible with oxygen and intravenous painkillers, and I'm thankful that he did not have to suffer long. Thanks everyone, I may go dark for a while but you can always reach me at cswgriffith@gmail.com.

Dearest Connie,
I am so profoundly sorry for this devastating and heart wrenching news whixh I was Hoping would never come, and my heart is broken and my grief and tears are endless for this overwhelming loss of your beloved husband and an incredible young man who I had the immense privilege to personally meet. I know how very difficult it must have been for you to somehow find the emotional strength to write to share this tragic information with the Board, and as extremely hard as it is to read and grasp the harsh reality that your words convery, I am grateful that you were able to let us know. The only thing that brings any comfort to my anguished heart is that dear Kevin was able to remain at Home with you surrounded by your love and made comfortable with the aid of hospice care and pain meds. There are truly no words to ever begin to adequately express the depth of my sorrow and the immensity of my anger towards this damn insidious disease that has now taken yet another precious and promising young Life, but I Hope that in the absence of those words, you can feel the caring embrace of my deepest sympathy and all my love dear Connie. You and dear Kevin will always be a very special part of our ASPS Family, and his physical absence from this World will never change that. Please know that we remain here for you, and that we will continue to fight the battle for Kevin with his great courage providing strength and inspiration.
From my broken and grieving heart to yours with deepest sympathy, profound sorrow, and all my love,
Bonni

Connie

We are so sorry to hear of Kevin's passing.
I've been away from my computer for several days or I sure would of said something sooner.
Please accept our families hugs as well.

All our shared sorrow and love
Debbie

Connie, I am so sad to hear this news, we are mourning with you and Kevin's family. You fought tooth and nail by his side. I wanted to share the link to some Kevin's sketches on his personal blog
http://cowandcheese.blogspot.ca
one of these has a special meaning for us. He drew it for one of our ASPS patients, they both met when traveling to Germany for the lung surgery back in 2012.
http://cowandcheese.blogspot.ca/2014/02 ... -2012.html
This drawing shows Zeratul killing ASPS tumors. I hope that Jussi does not mind me sharing this.

Dear Connie,
I am so sorry, we haven't been here for long, but we feel that this site is part of our family journey.

Take care.

Damian and family.

We are so deeply sorry...... Jussi said it is ok to share the drawing. The original is a very precious memory of Kevin.

Dear Connie, we're so deeply sorry to hear about it. Take care.

I am really sorry for your lost, quite frankly I hate writing a post that has this message. ASPS sucks and it really destroys not only our bodies as patients but those around us as well. I will pray for you and your family.

Mario

Thank you everyone. Your messages of love and support are so comforting. I miss him so.

I have started another blog as a way to remember these days of love and grief, and really, so friends and family can check to make sure I'm okay.

I have a very irreverent sense of humor and my appropriate filter broke around the same time Kevin died so apologies if you read anything and are offended.

http://toomuchinfoz.blogspot.com

Dearest Connie,
Thank you so much for sharing your blog information. You have a very special gift for writing, and you have so graciously opened your broken heart in your blog to honestly express your very valid feelings and the rawness of your grief and devastating loss which should certainly not be offensive to anyone and definitely does not need any apologies. Having devastatingly lost our beloved 30 year old son Tate in a tragic vehicle accident nine years ago, I so deeply share, and tragically truly know and understand your profound pain and sorrow which words are usually unable to ever begin to adequately express, but yet yours express and reflect it so well. Please know that I am here for you dear Connie to listen, to talk, to cry, to scream in anger together about the cruelty and unfairness of the loss of precious young Lives taken much too soon, and which held so much promise and who were and always will be loved so deeply.
Holding you and your beloved Kevin so closely in my aching heart, and reaching out to embrace you with warm and caring hugs, shared deepest sorrow, and all my love,
Bonni