Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Wonderful news! thanks Bonni!

love,
Beth

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...

Dear Eva,

I am so saddened to hear of Adam's passing. My heart aches so for your family.

In deep sympathy and sorrow,

Beth

Dear Charity, Happy Birthday! My son lost much weight over the years, and not until he was admitted to the hospital a week before he passed away did we get to see a nutritionist who asked why he was never advised to have a feeding tube to his stomach. He would have had a much better nutritional stat...

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 praye...

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 o...

God bless Brittany. My son fared well on the reduced dose, it will help Brittany too.

I am happy to share the news that NCI is up and running with a trial for adults. I just spoke to the Research Nurse, Mary Ann Yancey, who asked me to share the news. I don't know any of the details, other than it is a Phase II trial. Contact Mary Ann at 301 435-9227 for more information.

I'm sorry I can only post a brief note--my son is off the trial --I can't get into details, but his AST was increasing, and a bone met in his pelvis progressed from this most recent scan compared to his April scan, so we are going to see his radiation oncologist. We are of course devastated about th...

Amanda,

thanks! one thing -- my son doesn't like green tea -- just plain black lipton tea with a little sugar and lots of lemon

Beth

Hi Amanda -- my son is sleepy all the time too -- he drinks lots of iced tea with lemon (home-made, not too sweet) -- tea is good for you, and he says the energy drinks are great -- he drinks the kind called fuel -- they have B-vitamins in them ... good luck!

Beth

Ivan,

You Rock! Thanks for sharing!!!

Beth

Bonni,
thanks for sharing the wonderful news!
Beth

Dear Olga, I will try to get a copy of my son's ct scan tomorrow since we are going to NIH for labs, EKG, and consult with Endocrinology (it seems that the cediranib indeed may be affecting the thyroid but I will report on that when I know more). Since my son's cancer is quite advanced, I'm guessing...

Dear Charity,
I am so sorry to hear of the pain. Keeping you in my prayers, especially, that you will gain the strength to take Bonni and 'F''s suggestions back to your doctors -- my hopes and prayers are with you,
Beth