Cure Alveolar Soft Part Sarcoma International (iCureASPS)

My name is nani, my son is keola. (Olamon). It is with a heavy heart that we said goodbye to Keola on June 15, 2017. Diagnosed at 19, he fought a 5 year battle with ASPS. Within those 5 years he also earned a bachelors degree in History, a masters degree in religion. He married his longtime girlfriend and in June 2016 he had a beautful baby girl. His journey with asps proved to be tough but he didn't let it stop him from accomplishing his goals.

He may no longer be with in body, but he will forever remain with us in our hearts, minds, and souls.

For those families who are in this battle, my biggest advice to you......LOVE. Love each other so much that it hurts.

https://youtu.be/fn0JzpMW7So

https://youtu.be/fn0JzpMW7So

Dear Nani,
I am so deeply saddened by the devastating loss of your beloved son Keola who I came to know briefly through a couple of communications with him on the ASPS Facebook site. Despite the immense challenges of his own courageous battle, he always expressed a very positive upbeat attitude and a genuine caring concern for those in the ASPS patient/family Community. Thank you for sharing the link to the very beautiful and emotionally powerful memorial tribute to him which certainly reflects what an incredible young man he was, and how many Lives he touched in his MUCH too short time in this World. Keola obviously strongly embraced and Lived his proud Hawaiian heritage, and deeply loved Hawaii and his family to the point that when a recommendation was made for him to possibly seek Clinical Trial treatment in Miami, Florida, he rejected it saying that he would not want to leave Hawaii or be away from his dear family. As the mother of an ASPS patient who has courageously fought this insidious disease for the past 16 years since being diagnosed at age 19, and as a mother who devastatingly lost my oldest son in a tragic vehicle accident 12 years ago, I truly know and understand your profound pain and grief through not only the very difficult ASPS journey, but also the devastating loss of a beloved child. Please know how deeply I share your pain and sorrow dear Nani, and feel the embrace of my special hugs and deepest caring. Mother to mother and heart to heart with deepest shared sympathy, Bonni Hess, mother of now 35 year old ASPS patient Brittany diagnosed at age 19 in July 2001

Bonnie, thank you so much for your kind and heartfelt words. Hawaii is his home.....and here is where he will stay. The battle is real and I wish this feeling of loving a child onto no one. My heart weighs heavy but I promised him many things. I will keep my promises to my son. I will carry him with me in my heart, mind and soul. I wish you and your family many more years of love, happiness and good health.

Hello Nani

Our families heart felt condolences to you and you
family . Keola was such a kind soul always wanting to help the other person on face book. His kindness and
faith shined brightly.
I see his family had a big part in that .

As a mom of an ASPS diagnosised child, Josh , I too agree that life has sure thrown us all a curve ball when death can take them before ourselves . However it sounds as though Keola has handed you the torch to carry on his behalf and I'm sure he is very proud of you for so couragiously doing just that in letting us know of his passing .

Hugs to you and your families today and forever .

Love
The Pearson's