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Welcome to Ashley's Web Page detailing her life fighting Rhabdomyosarcoma - an aggressive cancer - since birth. Ashley was born with Embryonal Rhabdomyosarcoma, a soft tissue cancer, on the right side of her tongue. Her tumor measured 2.2 x 2.5cm and covered 1/3 of her tongue and we first noticed her tumor on the delivery table. Not what a BRAND NEW PARENT wants to experience during a "suppose to be" very joyous occasion. We were filled with terror and worry over our little girl. Ashley is the first recorded case in the U.S.A. of Rhabdo being present on the tongue, as well as developing in the fetus-showing up at birth. Rhabdomyosarcoma is the most aggressive form of childhood cancer, as well as the most common form of sarcoma. Rhabdo research does NOT get the funding it needs to STOP this monster from taking kids lives. I watch more and more kids dying from Rhabdo and it devastates me to know that the reason is noone (meaning pharmaceutical companies and a select few larger cancer organizations) wants to fund its research because it is considered "rare". 300 kids each year in the US alone die from Rhabdo.
We have started a 501c3 Non-profit org called Cancer Warriors, Inc. We help families with children with cancer find hope and encouragement, and joy in the midst of a devastating battle. We hope this ministry reaches out to the families and helps them find hope and faith in Jesus. I don't know how we would have gotten through it all without hope and faith in God.
Help support us so we can support all these children! www.CancerWarriors.org
Journal
Wednesday, July 23, 2008 10:33 AM CDT I realize I totally stink at updating this site!!! I am soo sorry, but hey...consider it a good sign we are finally moving on past cancer.
Ashley had a neuro-psych test done through the cancer clinic yesterday and we will have the full summary in about 2 weeks. They did tell me she is ADHD and I believe I read somewhere this is a possible long term side effect of treatment. I'll discuss with the docs in 2-3 weeks when we meet again and go over the summary. If that is ALL I have to deal with after treatment then Thank GOD!
Ashley is no longer dancing...she is cheerleading. I promised her last year if she'd do one mor eyear of dance she could switch to cheering if she really wanted. Finally a good use for her loud voice! LOL
AJ has started football as well. How cute is a 5 year old wearing pads and a helmet??? Just when I didn't think he could get any more adorable....he did! ;)
Tyler is still OFF all his medications for both the Tics and the Dissacridase Deficiency...and doing SUPERB!!! The docs never knew if the meds he was on for the DD would eventually STICK or if he'd be on them all his life so apparently he won't need the forever. What a Blessing that is!!!!!! He has been local touring all summer with his rock band and just had their biggest show so far last weekend. He is incredibly talented!!! If he gets a big break....I can see him making it. He and a friend of his wrote the best song recently and it is so catchy and talented I need to get him in a studio to record it. I know I am his mom but I have no problem telling him if something sucks. LOL THIS SONG ROCKS!!!!!!!
David and I are busy as ever. We just can't slow down between working full-time AND running an organization that does a lot of outreach. We have to schedule in a day to slow down once in a while!! We've spent the summer helping a couple families locally whose kids have cancer and have been in dire straights financially. What a joy it is to help though!!! These families deserve not to worry about where food will come from or how to pay a bill. They have enough going on. We can only do so much but it has been amazing what we've been able to do and how God opens up doors for who need it. PRAY WORKS!!!!
Go to our homepage and watch our ABOUT US video. It has Ashley's story along with some of our outreach. www.cancerwarriors.org
Thank you for checking in. I'll add some new pics as soon as I can.
Christy
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