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, February 20, 2008 10:47 AM CST

I hope everyone is getting spring fever - we sure are! All is going pretty good. I've been absolutely overwhelmed lately. I am juggling a full-time job, 3 kids who are active in something, home, trying to operate Cancer Warriors by myself mainly...whew! It's near impossible to NOT make mistakes in every area and I am such a perfectionist it makes me nuts! lol I am "trying" to slow down. I have been dealing with a Baker's Cyst on the back of my left knee for over 6 months and those things are "little bugars" and it was finally diagnosed in January and removed a week ago. I have been limping for too long! Glad that was all it was because it did worry me at first.

Ashley continues to do well. I did talk with the survivor clinic doctor about having Ashley tested for ADHD. She says the treatment she had doesn't really show ADHD but the treatment and trauma she went through does show a lot of psychological and emotional issues and they want me to bring her in so they can test her. She's having some trouble understanding her reading comprehension and other language arts tests/work at school but the work is WAY ABOVE 1st grade. She is having to learn 8 new things all at one time right now and it is overwhelming her to the point she can't concentrate. Ashley doesn't sit still either so that can't help. She has to be doing something...touching, figgiting, something....it is disruptive during homework, school, church, etc. She gets worse later in the day when she's starting to get tired. I know some of this can be a typical strong-willed child and the work is soooo hard for every kid in her class so it might not just be "her problem" or caused by cancer treatment. It's hard to tell! I just know she's difficult to teach anything to so wonder if she has ADD or ADHD. It can't hurt to have her tested no matter what the "cause" is. I just want to help her do better with her schoolwork and not always be getting into trouble. I haven't scheduled the appt yet because I missed so much work with my surgery. I will probably schedule it for sometime in April. She has developed another wierd brown spot on her head that looks identical to the other brown spot on her head. The doctor's are just looking at it when she comes in and said I could take her to a dermatologist to have them look at it too. I couldn't find the spot 2 years ago when we were at the oncology office so they haven't actually seen the 2 spots. I'll show them when she goes in just to see if they can put a name to it. I've heard of several RHABDOMYOSARCOMA kids developing these spots and their docs are all watching them because it is strange. So far...nothing and I continue to believe she's JUST FINE! Just noting it here in case anyone else out there has heard of these spots developing after treatment and if anything has ever come of them so we'll know.

Our oldest, Ty, is doing really well. He has "Dissachridase Deficiency" and it has caused him MAJOR problems for over 14 years. He's 15 yrs old now and the meds have worked sooooo incredibly well that he is trying to come off of them to see if "maybe" they repaired the problem and he can do without them. So far...so good! PRAISE GOD! He's in a Christian Rock Band "Escaping Trial" and I hope to see big things from him. He's awesome! He plays lead guitar and sings too. He is new to this already performaing band and they are about to sign a record deal next month. I'm nervous about letting him go into the "rock world". I just have to pray that the life lessons and Christian background will carry him on and he will keep God close to his heart. I can't believe he'll be driving at the end of summer! Yikes! Where did all this time go?!!?

AJ turns 5 this weekend. Yea for him! He's sooo excited. His classmates are coming over and we are doing a whole Monster Jam theme. It'll be fun! I finally have all my kids sleeping by themself in their own rooms! It wasn't them that needed to be broken...it was MOMMY! I love my babies sooo much that I don't want them to grow up and not need me. They go to bed, I tuck them in and kiss them goodnight and they fall to sleep on their own and "rarely" wake me up through the night anymore. I am actually sleeping!!!!! I haven't slept all night in 15 years!!!!!! I am a whole new person without dark circles and bags under my eyes. I might even look younger...ha ha!

I surprised David last night with whole weekend tickets to the Nascar race here at the Atlanta Motor Speedway on March 7-9th. Just he and I are going and the kids will all stay with the in-laws the entire weekend. David and I are really spending more time together doing even the smallest of things with just the two of us and it has transformed my marriage. It was hard to do things with him without the kids at first but seeing how much it is helping our marriage I have gotten use to it. It's not like we are avid at leaving the house every week. Just at least once every couple weeks or once a month David and I go out to eat just to be together. Ty doesn't mind because he gets paid to babysit for just a couple hours.

Okay...I better get busy at work. lol Thanks for checking in!

HUGS!
Christy Lillig

Hospital Information:

Off Treatment since 8/30/02
Followed by Aflac Cancer Center - Scottish Rite

Links:

E-mail Author: Christina@cancerwarriors.org

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