Cure Alveolar Soft Part Sarcoma International (iCureASPS)

my son had a brain met on his Dec. 2007 scan and a craniotomy to remove it in early January. In his March follow-up mri there were two new brain mets, these were treated by cyberknife at Georgetown University hospital last week. my son has a long history of brain mets, see my posts under brain metastases. From late August 2007 until last week coinciding with the cyberknife treatment he was on Gleevec and Abraxane following the supposition that since he did quite well while in a clinical trial of Gleevec and Taxol on a course from Sept. 2004-Apr. 2005 (the drugs kept him stable according to trial criteria -- we opted out to have thoracotomies to lung mets) we'd try it again, this time off trial and we got Abraxane. Once again, the drug combo kept his disease stable -- everywhere of course except for the brain because of the blood-brain barrier.
This is when the docs tell you that the drugs are no longer working. bless their hearts my son has had the best docs anyone can ask for but conventional medicine still cannot seem to accept any kind of multi-modal treatment philosophy, e.g., if it's working everywhere else but doesn't get through to the brain well then it's just not working period. I think we all know what would open their minds.
The Gleevec/Taxol trial is still listed at Georgetown's Lombardi Cancer Center's site under phase 1 trials. We are heading up to Dana Farber in a couple of weeks, hoping and praying that they will have some options for us.

It is with deep sorrow that I share the news of the loss of my dear and precious son, Jonathan Guay. He is at peace and in perfect health and happiness now, and because this is so, I am comforted in my sorrow. I am copying the death notice from the Washington Post. We love him dearly and will miss our beautiful, kind, and gentle son and brother and friend to so many who had the honor of knowing him.

GUAY JONATHAN F. GUAY On Sunday, August 2, 2009, Jonathan F. Guay of Washington, DC. Beloved son of John F. and Beth Guay. Loving brother of Lisa, Charles and Paul. Grandson of Charles and Jeanette Dolbow and the late Fernand and Mary O'Donnell Guay. Uncle of Lily and Gabriel Winebrenner. Also survived by beloved friend, Amanda Leddick. Friends may call at DeVol Funeral Home, 2222 Wisconsin Ave., NW, parking opposite 2233 Wisconsin Ave., on Wednesday from 6 to 8 p.m. Mass of Christian Burial will be offered at Cathedral of St. Matthew the Apostle, 17th. Street and Rhode Island Ave., NW, on Thursday, August 6 at 10 a.m. Interment Mt. Olivet Cemetery. In lieu of flowers, contributions in his memory may be made to Foundation for Georgetown University Hospital, Hospital Administration Main 1, 3800 Reservoir Rd., NW, Washington, DC 20007

Dear Beth,
It is with numbing shock, profound sorrow, and endless tears that I just read your devastating update. Words are far too inadequate to express the depth of my sympathy for the tragic loss of your beloved Jonathan, but please know how deeply I share your and your family's immense pain and grief. Although I did not have the privilege and joy of personally meeting Jonathan, I closely followed his extremely courageous battle through your faithful updates. I came to know him too through the incredible strength, invincible courage, and undeterred perseverance that he demonstrated throughout his increasingly challenging battle with his relentless disease. The legacy of his great courage and determination will continue to inspire all of us who share this terrible ASPS journey, and we will continue to fight the battle which his body was devastatingly unable to win. The deep and abundant love, devotion, and support which you and your family provided to Jonathan throughout each difficult step of his increasingly challenging battle is truly a portrait of what love can do, and certainly all that love could do was done. May the love of family and friends strengthen and sustain you through your grief and sorrow, and may cherished memories of your beloved Jonathan bring comfort to your broken heart.
So deeply sharing your profound pain and sorrow, and reaching out heart to heart with gentle love and deepest sympathy in this time of such enormous loss for your family, for your friends, for the ASPS Community, and for the World,
Bonni

Dearest Bonnie and all,

This battle will be won for certain, and our dear and precious soldiers who remain steadfast in their fight will lead us to the victory. Our job is to see that they have all they need to continue this fight. Jonny never stopped fighting, and that strengthened us all. My prayers for all of our dear loved ones who continue this fight will go on. Jonathan and our dear other loved ones who have gone before him will lead the way in prayer. God is with us always, He is our comforter, He will guide us to victory in heaven and here on earth. God bless our precious loved ones.

Beth

Dear Beth,

I am so sorry for your loss. He was such a brave and remarkable young man. Praying for your family's peace and comfort through this grief. Thankful also for our Father who knew and loved Jonathan before he was born, thankful that he is finally free of the terrible cancer.

Keeping you all in prayer, 'F'

Dear Beth,
I am so sorry to hear about Jonny's death. These are hard times for the ASPS community, but you are right, we must continue the search for a cure for the dear loved ones still fighting ASPS.
My sympathy to you and your family.
Best,
Eva Mitchell

Dear Beth,
Though i am new to the forums seeing your post broke my heart and reading the posts from others about your wonderful child put me in tears! I have not posted because to be honest it just hurt so deeply that he is no longer walking this earth in beauty! I truly believe he is smiling and he is in the loving arms of our lord now.

May the lord hold him and you and your family and friends in his arms and comfort you and give strength!

God bless your son and family..

In loving light!

AmandaR

Dear 'F', Eva, and Amanda,

You have my sincere thanks and deep affection -- I miss him more than I could have ever imagined. My consolation lies in knowing that I'll be together with him again when the time is right. Until then I'll try to do what I can to honor his courageous battle, that shared by Adam and those who have gone before us, and to support you and your loved ones who continue to fight in this war.

God bless,
Beth