|FRIDAY, APRIL 25, 1997|
ANXIOUSLY AWAITING NEWS
I realize that it has been two weeks since my last update, and I know that many of you have been anxiously awaiting the latest news. Thank you for your interest in Ashley's well-being, and please accept my apology for being so long in getting this update posted. The love, concern, and prayers of so many people from all over the world has truly been a blessing in our lives, and for that we thank you.
MAILING LIST GROWS
Besides posting these updates on the internet, I also send them out to people on my e-mail "update list". The list now stands at 318 people. A friend of mine told me that when he prints out the e-mail updates, the "To" section takes up a page and a half all by itself! That was getting to be a problem, because I started getting some "returned mail" messages indicating that some e-mail systems were unable to accept the messages because the header was too long. To solve the problem, I split my update list into seven separate lists. That seems to have done the trick, and it has also made my mailing list more manageable.
ZOFRAN, THE WONDER DRUG (A.K.A. "GOLD" MEDICINE)
We give thanks to God that Ashley has not experienced any more of the horrible nausea and vomitting spells like she did following her first two radiation treatments. Zofran is a relatively new medicine, and seems to be living up to its reputation as a "wonder drug" in preventing nausea and vomitting. Ashley takes one 4mg tablet each morning about 30 minutes before her radiation treatment, and it works like a charm! Zofran is the drug that we refer to as Ashley's "gold" medicine, because it is so expensive.
Two days ago, a friend of ours who works for a doctor came by the house carrying a big box. She said she had a surprise for us. She brought the box inside the house, opened it up, and inside was enough Zofran to last us for a very long time (probably throughout the entire rest of Ashley's radiation and chemotherapy)! I was dumbfounded.
This friend of ours had explained our situation (Ashley's cancer, huge medical bills, no insurance) to a pharmaceutical rep, who proceeded to obtain an entire case of Zofran samples from the manufacturer specifically for us ... at NO COST to us! The pharmaceutical rep even went out of her way to deliver the box to our town, which is not even in her territory. I am continually amazed at the goodness and compassion I see in people's hearts! God is indeed a good God!
THE INEVITABLE LOSS OF HAIR
Ever since we learned that Ashley's tumor was malignant, and that she would be treated with radiation and chemo, we have known that she would lose her beautiful, blonde hair. We have talked about it with Ashley, joked about it, and tried to help her prepare herself for that eventual reality. I guess I was pretty naive to think that we could prepare her sufficiently that it would not bother her when it actually happened.
Ashley began gradually losing her hair last weekend. Susan noticed that, when she brushed Ashley's hair, more hair than usual was staying in the brush. Then we began noticing quite a few strands of hair on Ashley's shirt. We would pick them off, and later there would be more. This continued throughout the weekend. Ashley knew what was happening, and seemed to be taking it quite well (which really didn't surprise us).
Over the weekend, Susan took the kids and travelled down to Round Rock, Texas (about two-and-a-half hours away), to see her Mom. Before coming home, they stopped in Georgetown (ten miles up the road from Round Rock) to see my Mom and to visit with Mrs. Shaner, who had been Ashley's first grade teacher when we lived in Georgetown. Mrs. Shaner has always been one of Ashley's favorite people in the whole wide world, and I kind of get the impression that the feeling is mutual. Anyway, Mrs. Shaner french-braided Ashley's hair Sunday evening, and Ashley left it braided overnight.
Monday evening while we were sitting at home, Ashley asked Susan to take out her braids because they were bothering her. As Susan began loosening the braids, Ashley's hair started coming out in large clumps. By the time Susan was finished, most of Ashley's hair was gone -- just like that, all at once. We knew that she would lose her hair, but we just didn't realize that it would happen this soon, or that it would come out all at once like that (though she does still have a very thin layer of hair). Ashley went to the back of the house several times to look at herself in the mirror. She moped around for a little bit and then went into her room. I went back after a few minutes and found her curled up on her bed crying. That absolutely broke my heart in two! I knew she had every right to be sad and upset and even angry, and I knew that I needed to let her experience those emotions. I sat there with silent tears in my own eyes, stroking her arm gently. I didn't have any idea what to say or how to make her pain go away. That has to be the worst part about being a parent, watching your child suffer and not being able to do a thing about it.
I have heard that, when someone loses a hand or an arm or a leg, they go through a genuine grieving process similar to that experienced by someone who has lost a loved one to death. I think that, for a short time, Ashley was experiencing these same feelings and emotions of grief over the loss of her hair. However, she never ceases to amaze us with her uncanny ability to "bounce back".
Ashley's fourth grade teacher came over about the time that Ashley went back to her room. Miss Mayberry had come to conduct Ashley's tutoring session. I was called away for a short while. When I returned home, Ashley and Miss Mayberry and Susan were all sitting at the table working on Ashley's school work. Ashley was in good spirits, laughing and joking. I think it really helped having Miss Mayberry there.
Ashley seems to have come to terms with her hair loss. Ever since Monday night, Susan and I haven't noticed any signs of her being sad or upset or embarrassed about not having much hair. In fact, she has gone to her treatments, to church, to school, to the store, and several other places in public without even wearing a hat or her wig. She was upset, she got over it, and now it's no big deal! All in the course of one evening. Amazing!
OUT OF THE MOUTHS OF BABES
Recently we were sitting in church on a Wednesday evening, and the man giving the devotional talk mentioned Ashley's name. Like most normal 9-year-olds, she wasn't paying 100% attention, but she did hear her name. She leaned over and whispered to Susan, "What did he say about me?" "He's just talking about how you are sick," was the response; to which Ashley retorted, "I'm not sick, I just have a brain tumor!" What an amazing perspective.
SENSE OF HUMOR
Today, after we arrived back in town from Ashley's treatment, Susan and I accompanied Ashley to school. Her class was having a birthday party for Ashley, so we took a cake and some ice cream and soft drinks for the celebration (Ashley's birthday is this Sunday, April 27; she will turn 10 years old). As we got out of the car to go inside, Ashley put on this horrible-looking halloween mask. Over the mask went her eye patch (she has to wear it because she is still experiencing double vision). Then she pulled the hood from her jacket over her head. She walked into the room behind me so that no one could see her at first. When I stepped out of the way and everyone saw the mask, she proclaimed, "This is what radiation did to me!" Everyone got a big chuckle out of that.
I feel compelled to take just a few lines to say "thank you" to Jimmy Sexton, the publisher of our local daily newspaper, the Waxahachie Daily Light, for a series of articles which he wrote about Ashley for the Daily Light about a month ago. In his first article (which covered half of the editorial page), he wrote ...
I was surfing various Waxahachie web sites on the Internet Friday when I came across a page that absolutely stunned me. It wasn't so much the headline that grabbed my attention, as it was the photo of a cute, 9-year-old girl with a priceless smile.
Reading on, tears began to well up in my eyes.
Jimmy went on to share with his readers some of the details of Ashley's condition as we knew it at that time. He closed the article with a personal note to Ashley.
Ashley, I am praying for you. You are in God's hands, and He will take care of you. I pray that you will continue to make daily improvements in your recovery from surgery, and I pray that the lab tests will show the tumor to be benign.
I pray that you'll be back to your family and friends as soon as possible, doing all of the things that 9-year-old girls do. And I pray for your brother, mother and father, that they will discover strength and faith in God to see the O'Rear family through this difficult time.
You can read the full text of the article here.
That article was followed up with two "updates" later in the week, including an article joyfully announcing that Ashley was home from the hospital.
Thank you Jimmy. Your kindness touched us deeply.
RETURN TO NORMALCY
We are trying to go about the job of bringing some semblance of normalcy back into our lives. Everything was put on hold -- jobs, bills, household chores, everything -- while we were dealing with Ashley's immediate needs during her stay in the hospital. We realize that our "pre-cancer" daily routines won't have any chance of being fully re-established for at least the next year, while we finish the daily radiation treatments and then go through the chemotherapy treatments. However, one little piece at a time, we are striving to settle into new routines which will allow at least all the important things to still get done. Please pray for our success in making that happen.
A PLEA FOR PRAYERS
As I talk of our lives eventually returning to normal, however, I ask you to stop what you are doing, get down on your knees, and pour your heart out to God -- not for us this time, but for another family whose lives will never again be the same -- the Mouser family from here in Waxahachie. I hope and pray that Bill and Barbara will not be offended by my mentioning this, because I have learned the power and comfort that can be experienced when many people are praying for you, and I am asking you to do that for the Mousers before you go to bed tonight.
I have never met Bill Mouser or any of his family. Bill learned of Ashley's situation early on, and sent me a couple of e-mails offering me helpful information and encouragement. You see, Bill and Barbara's daughter Francesca was diagnosed with a brain tumor a couple of years ago. So Bill knew exactly what we were going through.
Yesterday I opened the newspaper and was flipping through it to see if there was anything noteworthy. As I caught a glimpse of the last page, my heart stopped and my mind went numb. There in the Obituaries column was a picture of a beautiful little 9-year-old girl, and the caption under the picture read "Francesca Mouser". Francesca lost her battle with cancer this past Monday, April 21. Her funeral was yesterday, Thursday.
Please pray for God's comforting hand to touch the Mouser family in the difficult days that lie ahead. Without even knowing them, I know that Francesca was a blessing from God. Bill and Barbara have three other daughters: Alexa, Geneva, and Veronica.