|FRIDAY, OCTOBER 23, 1998|
SUMMARY OF CONTENTS:
Those of you who have kept up with Ashley's progress for the past year-and-a-half may remember that last year she attended summer church camp during the break between radiation treatments and the beginning of her chemo treatments. She went to Iron Springs Christian Camp along with a number of other pre-teens and teenagers from our church, and had a blast.
Well, this summer Ashley returned to Iron Springs. The camp is only about an hour's drive from our house, and we made the trip down there on Sunday, July 5. Upon arrival, we learned that some friends of ours from Keller, Texas, had brought a golf cart to camp so that Ashley wouldn't have to walk all over the place, since she was still weak and wobbly. That golf cart (and those wonderful friends) turned out to be an absolute God-send. Ashley was able to get around the camp just like the rest of the kids, and was able to participate in all camp activities. She participated in group sports, swimming, and crafts every day. She went to all the devotionals and Bible studies. She even swung from the camp's big tree swing. She climbed up the ladder to the "jumping off" platform, got strapped in, and JUMPED. She had LOTS of fun!
Ashley made lots of new friends at camp, and renewed old friendships as well. She didn't get sick the entire week, and had a wonderful time. At the end of the week, she was awarded the "Best Camper" award for her cabin.
We returned home from Iron Springs Camp on Friday night, July 10. The next day, Saturday, Ashley entered Children's Medical Center for what was supposed to be her final chemo treatment. She was in the hospital Saturday, Sunday, and Monday. On Monday, some of Ashley's friends from camp (all BOYS, by the way) came to the hospital to see her. I think she really enjoyed that!
Later that day, one of the nurses came into the room. She had been going back through Ashley's chart, and said that Ashley would still need to be admitted for one more chemo treatment after this one. Susan hit the roof! Ashley's excitement about being finished with chemo was completely deflated. All along, we had been looking forward to this treatment as being the final one. Our conversations with the doctors over the previous couple of months all reflected that anticipation. There had been no indication otherwise, from anyone, prior to this unexpected announcement.
Ashley came home on Monday. She was distraught over the prospect of yet another chemo treatment, and Susan was fit to be tied. Over the course of the next couple of weeks, we had several conversations with the doctors about the sudden revelation that there was one treatment left. Susan and I discussed it at length. Ashley's recovery from the most recent chemo treatment was taking longer than normal. Her body was obviously wiped out. A year-and-a-half of one-chemo-treatment-after-another had taken its toll on her system.
And then there was school. If she did go back for one more treatment, that would mean that her immune system would be "bottomed out" right when Ashley was supposed to start school. That would keep her from being able to start school with the rest of her class. And this was 6th grade. This was a whole different campus, a whole different environment. This was Middle School, which is a huge adjustment even for healthy children. Delaying Ashley's ability to start school by two or three weeks would put her way behind.
After much discussion, Susan and I decided that, even if the doctors insisted that Ashley needed to have one more chemo treatment to finish her protocol, we would simply refuse treatment. I mean, after a year-and-a-half of treatments, what real difference would one more make? Anyway, I was completely convinced that Ashley's cancer was already gone. I believe God answered our prayer to remove the cancer over a year ago. After the completion of her six weeks of radiation treatments, every MRI (even the one taken BEFORE we started chemo) had shown absolutely NOTHING. Ashley had beaten her cancer monster a long time ago. With all these things taken into consideration, it seemed senseless to us to subject Ashley to another chemo treatment. We discussed all of our concerns about the additional treatment with one of the doctors. The doctor agreed that our concerns were valid, and that our refusal to subject Ashley to one more treatment was "not unreasonable". So, the "other last treatment" was cancelled. That meant that "no more chemo" was finally a reality!! We had come to the end of the journey, and Ashley was the winner!
We had spent the previous day decorating the fellowship hall of our church. We had gone back through all the mementos from Ashley's year-and-a-half journey: pictures, autographs, programs, souvenirs, gifts. There were the autographed pictures of Troy Aikman, Roger Staubach, Kidd Kraddick and the Morning Gang from Dallas radio station KISS-FM, nationally-syndicated radio talk show host Mark Davis (who had conducted a brief interview with Ashley on one of his shows), Michael Irvin, the Dallas Cowboys Cheerleaders, Chuck Norris, and many others. There were stuffed animals from all over the world. There were printed copies of nearly 3,000 e-mails (that's almost 6 reams of paper!). There were all the pictures and souvenirs from the Disney World trip. There were the pictures of Buddy, the movie star dog from "Air Bud" who came to visit at Children's Medical Center. There were reminders of the Dallas Christmas Parade, the "Over The Rainbow" mega-fund-raiser luncheon and fashion show, and "The $6,000 Pig". There was the poster with a picture of Ashley golfing with LPGA Co-Founder Marilynn Smith.
As I stood back and looked at all this stuff, I was truly amazed. What an INCREDIBLE journey we have been on during the past year-and-a-half! Not only do we have all these wonderful memories, WE STILL HAVE ASHLEY to share the memories with! God has blessed us abundantly!
Susan and I estimated that approximately 250 people attended Ashley's big bash. We had a dunking tank set up out in the parking lot. Ashley talked our preacher, Walter Buchanan, into climbing in the dunking tank. Walter had not come to the party prepared to get wet, but he got in anyway!
Next Ashley talked one of our church's elders, Bill Lierman, into getting dunked as well.
And finally, dear old Dad got dunked. (I must admit, though, it was a nice relief from the heat!)
Some dear friends from church brought their concession stand and served free sno-cones on the parking lot. They also let us use their popcorn machine to make fresh popcorn. We served ice cold watermelon from the back of my pickup truck. And Susan had a special cake made for the occasion, plus several other cakes were brought by different friends. There were games set up for the kids to play.
Some people drove several hours to come to the party. My Mom and brothers all came, as did Susan's Mom and sisters. Lots of people who couldn't come had sent cards and letters and e-mails. Once again, we were overwhelmed by the outpouring of love for our precious daughter and for us. We had been anticipating this party for over a year, and we were not disappointed in the least!
Ashley is in the 6th grade this year. In Waxahachie, 6th grade has its own campus, and is classified as Middle School. The students are no longer in elementary school, and have not yet made it to Junior High. It is a big transition, and can be a tough adjustment to make. At first, Ashley was having a rough time. I think she was overwhelmed. She has eight different classes with seven different teachers. She still can't write very well because of the loss of fine motor skills from the tumor and the initial surgery, so she has a hard time keeping up with note-taking and writing assignments. She can't get around quite as well as the other students, because she is still in her wheelchair most of the time. She wants so bad to just be a normal kid, and she gets frustrated quite often with her physical limitations.
At first, Ashley was spending four or five hours every night working on homework. That has tapered off some. She puts a lot of pressure on herself to excel (which I think is a good thing as long as she doesn't overdo it or create unrealistic expectations for herself). One day she got a 91 on a test, and was very upset at the "low grade"!
The principal and teachers at the Middle School have been wonderful! They are all very accepting of Ashley and very understanding of her situation. So far, Susan has been going to school with Ashley every day this school year. We are working towards Ashley being able to go to school without Susan, but I think the teachers have gotten accustomed to having Susan there as well, and are enjoying her help.
BLOOD COUNTS - All of Ashley's blood counts have recovered into the "safe" zone, except for her Magnesium level. That has remained low, and Ashley is taking Magnesium supplements every day. We have been given the "green light", based on her blood counts, to proceed with any surgeries that are needed.
NEUROPSYCHOLOGICAL TESTING - Back in August, Ashley underwent a battery of neuropsychological tests to determine if there have been any long-lasting (permanent) negative effects from the radiation in areas such as memory, cognitive functioning, learning ability, and thinking skills. They were also looking for signs of depression or other emotional concerns. Susan and I went back a couple of weeks later to sit down with the neuropsych doctor and find out the results of Ashley's tests. We were pleased. She did exhibit a small deficit in her ability to learn new things quickly. It is not so much a learning disability as it is a greater need for repetition of new information in order for her to fully learn it. This is something we will keep an eye on. However, I think Ashley's progress in school will be a more accurate indicator of the real side effects, if any, of the radiation. So far, we have been very pleased with what we have seen in Ashley's ability to function in a standard learning environment.
SINUS CT SCAN - Ashley had a CT scan of her sinuses done on Wednesday, October 7, to see if her sinus infection was still bad enough to warrant sinus surgery. I had expected the answer to be "yes", because Ashley continues to have sinus and allergy-type problems. However, the scan showed that there is very little infection remaining in her sinuses, meaning that surgery will NOT be required. Medicine was prescribed for her allergies.
MRI - Ashley had an MRI done of her head on the same day as the CT scan. It had been several months since the last MRI. I expected the scan to be clear, showing no signs of recurring tumors. But even with that confidence, there is always a little bit of uneasiness waiting for the results to come back. We have seen too many kids relapse with no warning. However, as expected, Ashley's MRI came back showing nothing. Praise God for His merciful healing! I firmly believe that Ashley's cancer is gone for good. As I already mentioned, I believe God answered that prayer over a year ago. We are looking forward to watching Ashley grow up, go to college, get married, have a family, and give us grandchildren that we can spoil rotten the way her grandparents have spoiled her rotten!! Ashley has a full life ahead of her, and her future looks bright. For that, we thank God and give Him all praise!
As always, the burdensome side of Ashley's ordeal continues to be punctuated with lots of blessings and good times. On August 26, we took Ashley to a very nice country club north of Dallas for the Marilynn Smith Charity Golf Classic. Marilynn Smith is one of the co-founders of the LPGA, and this was her fifth year to sponsor a ladies' golf tournament benefiting the Children's Brain Tumor Foundation of the Southwest. Ashley was the "poster child" for this event, and helped hand out the prizes at the end of the day.
Justin turned 9 in August, and we celebrated by giving him a skating party at the local roller skating rink. Towards the end of the party, I put on some skates and took Ashley out on the floor in her wheelchair. I skated and pushed her for a good 10 or 15 minutes. We both had lots of fun!
During the last few days of September and the first few days of October, we took off and headed for the Texas coast. Justin was out of school for Fall Break, and we got permission to take Ashley out for a few days. We traveled to Corpus Christi, where Susan and I lived for seven-and-a-half years when we first got married. We stayed the week with some good friends of ours, and spent our time relaxing, shopping, and sea-shell hunting. It was a WONDERFUL week to just get away from everything and enjoy ourselves. The sea-shell hunting excursion at the end of the week was probably the highlight of the trip. We all got out into the ocean (including Ashley), and dug around in the sand for sea-shells and sand dollars. We ended up bringing home about 22 sand dollars, and several shells complete with hermit crabs!
We arrived back home from Corpus Christi on Friday evening, October 2. Early Saturday morning, Susan's Mom showed up at our house, and she took Susan and the kids to Canton for the big flea market. Busy week!
There is a group of people who we have never met, but who have impacted our lives in a big way. This group is known as Tiny Talk, and consists of people from all over the world who share a common interest: miniatures. These people create and collect miniatures of all kinds. They "meet" by way of the Internet to discuss their hobby and share it with others.
I got an e-mail one night several months back from one of the Tiny Talkers. She had run across Ashley's Story on the Internet and was deeply touched. She proposed that her group take on the project of providing Ashley with a handmade doll house and furnishing it with miniatures. Her group agreed, and soon there were packages arriving daily from all over the world with miniatures for Ashley's much-anticipated doll house. The doll house itself, we were told, was being custom-built and would be sent to Ashley when it was finished. In the meantime, packages kept arriving.
I have never seen so many tiny things in all my life!! It was like Christmas every day for about a month. Ashley got the biggest kick out of it all. And then the word came. The doll house was finished and was on its way. A couple of days later a huge package arrived at our door. The doll house was finally here! We opened the package eagerly, and marvelled at what we found inside. Ashley spent that evening going back through all her miniatures and trying to decide what things she would put in the doll house now, and what things she would save to swap out later. Few gifts have brought her as much joy. What an incredible act of kindness from an amazing group of people.
Click on the above picture to take a "virtual tour" of Ashley's doll house.
Susan and I never cease to be amazed at the wonderful blessings God has provided for us. We have just been through a year-and-a-half that should have been unbearable. We have watched our precious daughter suffer unmercifully at the hands of one of the most dreaded diseases known to man. Our lives have been completely turned upside down. We have lived at the hospital in Dallas about as much as we have lived in our own home. We have lived literally from one moment to the next, never knowing when our plans would suddenly and unexpectedly change due to Ashley's condition. Sounds like a miserable way to exist.
But you know what? Our lives have been anything BUT miserable. In fact, our lives have been just the opposite of miserable. Sure, there have been lots of scary times. Yes, it has been frustrating. Of course it was incredibly inconvenient and un-nerving. But the daily grind of dealing with Ashley's cancer has been often punctuated with the joyful sound of laughter. We have experienced some incredible things, met lots of wonderful people, and had FUN! We have learned some unforgettable lessons about life, and about God, and about what things are really important. And best of all, we have made it through that year-and-a-half, and have emerged victorious. Ashley has BEATEN the cancer monster!! Life is sweet! And God is good.
To all of you who have joined us on this journey ... who have lifted us up in prayer, who have offered encouragement, who have contributed financially, who have invested yourselves emotionally and followed Ashley's Story with eager anticipation (and hounded me when I didn't get the information to you fast enough!!) ... to all of you who have blessed our lives so tremendously with your love and concern -- we say "THANK YOU"! God has made my family the beneficiaries of your goodness. May He in turn shower great blessings on each of you and your families.
P.S. I will continue
to provide updates as the situation warrants (e.g. the results of Ashley's
periodic MRI's, or if her condition changes).