Written by Melanie Averill (Ashley's mom):

Good Morning Friends,

She has continued a low fever for most of the week. Friday morning she was off to a great start. I was so refreshed to see her work on school assignments all morning. She also laughed w/her sister. After a late lunch, the girls and I worked on a crossword puzzle and the day was less stressful and enjoyable. After Ashley's nap, she commented she was not feeling well and she was running a low grade fever again.

At 6pm, John and I had a conference call w/a doctor from Oasis of Hope. They have a very comprehensive healing program. The facility will house 60 patients and their companions. Right now, they have a room available for Ashley. Patients begin their treatment w/an initial 18 day stay. Not only are the patients nourished, they attend classes and various programs to help them w/their illness. They even have companion support groups which is very appealing to me. Children are admitted and are cared for individually by a group of doctors. With Ashley's condition, one challenge we have faced is the adult oncologist who work w/her specific type do not take patients under 18 years old. The doctor at Oasis commented like all other doctors about how rare her condition is for a 13 year old girl.

At 7pm, I attended a Girl Scout cookie meeting to obtain the paperwork for Madison to begin selling cookies on Friday, 1/18. When I returned home shortly after 7:30pm, Ashley was curled up in a ball position and her fever was now 103.7. John had called the doctor. I placed her in a bath tub to bring relief.

At 8:30pm, Ashley and I were on our way to Egleston ER for another round of test. Flexibility is the key to our lives...Girl Scouts one minute, ER the next. When we visited on Tuesday, our visit was fairly quick and easy. At the time we arrived on Friday, three trauma patients had arrived and the wait time had been extended. I truly understand the trauma cases because three months ago, Ashley was in the trauma room with about 15 people surrounding her with each person working diligently to stabilize her condition. Anyway, her oncology status placed us at the top of the list and we were assigned a room immediately. The room was big w/two beds. Since I am becoming familiar with this kind of schedule, I went prepared wearing comfy warm clothes and we took two travel pillows. Ashley took one bed and I took the other one. We got blankets and camped out watching TV until the nurse finally came in at 12:30am to begin Ashley's treatment. It was simple but because of the traumas, we were delayed getting home. I made a quick drivethorugh at Krystal on the way home and we finally settled into our beds at 4am. Her tests continue to show negative results and the doctor has informed us to treat the symptoms w/Motrin. Her fever is the only symptom.

To end a sluggish Saturday, we made last minute dinner plans with precious friends. The fun, food and fellowship was exactly what we needed. We love you Mark, Tracey, and Emily. William, we missed you and we love you too!

Ashley woke at 4:30am with another fever and went back to sleep.

Tomorrow, we have an appointment at 2pm w/a doctor at Covenant Health Clinic in Roswell. He treats patients with a more comprehensive style to include immune system building, etc.

Recently, I have been reminded to take the manna God gives me and live only for that day. When the Israelites gathered their manna every morning, they always gathered as much as they needed. Some ignored Moses' instructions and gathered more then they needed and the manna rotted. (Exodus 16) In my Bible, I have written the manna test was not intended for failure but to know God. When the manna went bad because of not believing God would provide enough for the next day, it reminds me God is in charge. I find myself wanting more than I have today, but I must live on my daily manna and wait on Him the provide what I need on a daily basis.

Written by her mom, Melanie

I apologize for long delay in updating the care page. Ashley did have her tube removed on Friday and she has progressed really well without it. She is moving around w/much more ease. Last night she slept in her own bed! She is able to climb stairs and was ready to be in her room after being out of her own bed for a month. I enjoyed being in my bed as well after being absent from it for a month also.

I did not update the care page often last week because it was just one of those weeks where we were experiencing our lives as a roller coaster. The news I am about to share is old news, however, it is part of our journey so I thought I would share it. Sunday evening before last Ashley and I were up most of the night trying to get her comfortable. Needless to say, Monday afternoon we both took a long nap.

Last week you could say that all four of us took turns having emotional breakdowns. My day was Tuesday. I cried all day long. I cried everyday, but Tuesday was the day the emotions would not stop. Madison sat in front of me Tuesday night and cried for almost an hour. Her heart was so heavy from all the changes we have experienced over the past two months. Her heart was in the right place trying to understand Ashley's sudden illness, however, she had to let go of her feelings about how she was feeling about it had affected our home life. She is still a very secure young girl and I am thankful she can release her emotions which I think is important. It seemed every time I looked at John his eyes were red. We were all a mess!

In addition to crying a lot, all four of us took turns venting our frustrations as well. By Friday morning at 9:30am, we literally stopped what we were doing and gathered around our casual dining table. We focused on I Samuel 16:7 "...The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart." We all had to examine our hearts and talk about how to face our challenges with a better attitude.

Our week started off better by enjoying some holiday fun. Ashley told me that I needed to get going on my holiday shopping which I have tried to accomplish. It is Wednesday and I am exhausted, but making progress.

Dr. Katzenstein has made contact with the NCI, National Institute, regarding Ashley's enrollment in a clinical trial. The latest and greatest treatment for Ashley's condition is a medicine called Nexavar. It was approved for adults about 3-4 months ago, however, it is not approved for pediatric dosages. Therefore, in order for Ashley to receive the treatment, she must be placed in a clinical trial. If accepted, we will travel to Bethesda, Maryland for treatments. Specific prayer requests are as follows:

* She is tapering off her blood pressure/heart rate medication which will allow her to be accepted in the trial. Pray her vital signs will be normal without medication.

* Continued healing from surgery.

* She took a 3 hour nap today and is complaining of being sluggish. I am having to watch her closely for other symptoms. She did not have much of an appetite at dinner.

We have discovered a health drink called Goji juice. It appears to bring great results to your overall health. Ashley is drinking it twice a day. I can elaborate on our findings in another update. We pray this juice will bring healing to her body and that the bead like tumors in her lungs will respond and dissolve. Now that would be a miracle! (A gov't report indicated positive results w/tumors as John researched this product.)

We have received Christmas cards with very thoughtful messages and pictures of all our beautiful friends. Thank you for including our family on your card list.

I must go for now. Thank you for taking time to pray for Ashley during this busy time of year.

Love,
Melanie