16 years after Josh passed away, a dear friend of mine is fighting alongside her daughter, Ava, against the terrible C word. This is how The Gold Hope Project was born. Childhood cancer is extremely underfunded, awareness should be raised. This year alone, approximately 13,500 parents will have to listen to a doctor tell them, "Your child has cancer." Can you imagine? Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years...these are the type of tumors that Josh and Ava have.
Let's get to the happier part of this post, shall we?
Monday at Jewels Avenue Photography studio, Ava came to visit and have her Gold session. There was glitter, smiles, laughter and the booger song. I have watched this video every day, and each time I have a huge sad smile and tears.
They say girls are sugar and spice and everything nice. That is definitely what Ava is made of! Her eyes light up a room and her laugh is so contagious. She is a complete girly girl and must wear a dress everyday (she prefers pink ones). She has such a kind heart and loves all animals, especially dogs. She showers everyone she meets with hugs and kisses. Last winter Ava had a cold but she was also experiencing some odd symptoms like falling down and not being able to swallow. A routine trip to her doctor turned into much more after a brain tumor was discovered in her pons (the middle of the brain stem). A few days later we received her official diagnosis of Diffused Intrinsic Pontine Glioma or DIPG. This kind of tumor can not be removed because of its location on the brain stem. There is also no cure and most children with DIPG pass away within a year after being diagnosed. There were not many treatment options for Ava but we did participate in a clinical trial but her tumor spread to her spine and she was removed from it. The tumors in her spine are causing nerve damage and she is unable to walk. Ava amazes me throughout this journey. She is strong when I am weak. She laughs when I want to cry. She has pulled me through when I wanted to give up. She keeps fighting, so I keep fighting. She has taught me more about life in the last 9 months than I thought I knew in all my years before. We really live now and are so grateful for the tiny moments that would have gotten ignored before. Everyday I wake up to see her beautiful eyes and smile is truly a gift.
-Cynthia, Mom to Ava
We will be participating in the CureSearch for Children's Cancer in Austin, TX. The money we raise will fund and support collaborative research to find a cure for all cancers affecting children. I need your support, so please join my team, register as an individual or make a donation to CureSearch for Children's Cancer on my behalf. Together, we will conquer children's cancer.
Join us, if you can!
If you are unable to attend, consider making a general donation