SATURDAY, JUNE 21, 1997
 

CAMP

We just returned last night from spending a week at Iron Springs Christian Camp. Since I am a youth minister, summer camps have been a part of our family's life from the beginning. Ashley really wanted to go to this camp (she attended the same camp last year), so the nurses at Children's Medical Center postponed the start of Ashley's chemotherapy treatments for a week so that Ashley could go to camp.

Our whole family attended the camp. Susan and I both served as counselors. Ashley was in Susan's cabin. Justin isn't quite old enough yet to attend as a camper, so he just stayed in my cabin with the high school guys and made himself right at home! Justin is 7 years old and is quite the ladies' man! All week long, any time we wanted to know where Justin was, all we had to do was look for the biggest gathering of pretty girls (usually Jr. High or High School age), and there was a good chance that Justin would be right in the middle of them! Susan and I both have the feeling that we are in for some interesting years when he becomes a teenager.

Ashley had a WONDERFUL time at camp. She participated in most of the activities, including swimming. It was really neat to see God's love showing through other kids as they showed special interest in Ashley. There were several of the older girls who especially took Ashley under their wings and became her buddies. They didn't treat her like she was sick, or try to baby her. They just befriended her like she was a normal 10-year-old little girl, and she loved it!

Ashley and Friends at Camp Ashley Swimming at Camp Ashley Studying at Camp

POIGNANT REMINDER

I think that is one of the reasons I so enjoy working with young people. There is a sweet innocence in most young people that hasn't yet become hardened or pessimistic about life. Their hearts are especially permeable and receptive to God's love. And maybe that's one of the reasons I have always loved being a youth minister at summer camp ... it gives me a golden opportunity to fall in love with kids all over again, and to be poignantly reminded of why I chose this line of work in the first place.

LITTLE WORRIES

We did get worried a little bit about Ashley at camp. The last couple of days, she slept a LOT. She was always tired, and missed several of the activities because she was in the cabin asleep. Thursday morning, she woke up feeling nauseated and threw up. That brought back a flood of horrible memories and fears. However, I think these problems were probably due more to being worn out than anything else. It helped knowing that the camp nurse is a former oncology nurse, and that Ashley will be going into the hospital next week anyway. That way, if there is something wrong, we should be able to find it and "nip it in the bud".

E-MAIL

It still blows my mind (small explosion) to realize what an awesome communication tool we have available to us in e-mail and the Internet. The message you are now reading was sent via e-mail to 403 different people, and will be forwarded by some of those people to countless others. Some people will stumble across this web site, and learn of Ashley's story that way. There is no telling how many people will read this update by the time it finishes making the rounds. And I am still regularly adding people to that list of over 400, as requests come in almost daily.

I know for a fact that there are people all over the United States (including Alaska and Hawaii) who will read this, as well as people in Canada, Argentina, Venezuela, Australia, England, Russia, Thailand, and I'm sure numerous other places that I am either forgetting about or am not even aware of at this moment!

I currently have over 900 e-mail messages archived, which I have received over the past three months. We have heard from LOTS of other cancer patients, as well as people with diseases other than cancer, and family members of people with these ailments. We have received numerous stories of hope and words of encouragement. We have heard from several people who either are, or have been, oncology nurses.

SPECIAL MESSAGES FROM SPECIAL PEOPLE

We have heard from two young ladies (one of them 15 years old), both of whom plan to become pediatric oncologists. I was especially uplifted by their messages. We know first-hand the value of having loving, caring, top-notch cancer health-care professionals, because we have been cared for by some of the BEST! I would strongly encourage anyone who is seriously considering entering this profession to GO FOR IT, always remembering that the people you will care for are not just cancer patients ... they are PEOPLE. People with hopes and dreams and plans for the future. People with tremendous fears and apprehensions related to the cancer monster, because this is not medical textbook stuff for them; it is a real-life horror that they are facing for the FIRST TIME.

We have also heard from several people who have found the strength to deal with their own struggles with cancer and other health problems, because of Ashley's story. One lady wrote that she was recently diagnosed with breast cancer. As she faced the scary reality of the diagnosis and the resulting treatments, she said that she kept telling herself, "If Ashley can do it, then I can too." She faced her own nightmare with renewed courage and faith, because of Ashley. For that we give God all praise and glory! We hope that Ashley's story will continue to inspire and encourage others, and in fact that has become one of the reasons that we continue to tell Ashley's story and provide these updates.

BLUE WIG

Well, Ashley finally got her blue wig. A few weeks ago, when Susan took the kids down to Houston to visit my brother Mark and his family, Mark made good on his promise to buy Ashley a blue wig. And, boy, is it blue! Ashley hasn't worn it, yet. Maybe it would look good with one of her Cat-in-the-Hat hats!

STEROIDS

We finally got Ashley completely off of the steroids, for which we are extremely thankful. With the steroids out of her system, we have noticed that her mood swings are not nearly as severe as they had been for a while. Her appetite has also tapered back down to normal. She was eating voraciously for a while, and has gained quite a bit of weight. I am hoping that we can keep her off of the steroids from now on. Time will tell.

TREATMENT PROTOCOL

On Monday of next week, June 23, Ashley will be re-admitted to Children's Medical Center in Dallas. An audiogram will be performed to establish a baseline reference for her hearing. This will allow us to keep tabs on any hearing problems that might arise as a result of the chemotherapy drugs.

Ashley will be in the hospital for five days, and will receive infusions of two chemotherapy drugs on each of those days.

  • VP-16 (generic name Etoposide) is "a natural product; a semi-synthetic podophyllotoxin, which damages cell protein and stops cell division". Possible side effects include low blood counts with increased risk of infection, nausea/vomiting, and hair loss. The drug will be administered intravenously by slow infusion (IV) over a period of one hour, once a day on each of the five days she is in the hospital. Ashley's blood pressure will be monitored every 15 minutes during infusion as a precautionary measure.

  • CYTOXAN (generic name Cyclophosphamide), or CTX, is an "alkalyting agent which interferes with cell division (stop or slow down cell growth). It attacks cells in a tumor whether the cells are resting or dividing." Possible side effects include low blood counts with increased risk of infection, nausea/vomiting, hair loss, and hemorrhagic cystitis (blood in urine). The drug will be administered intravenously, injected into a vein as a fluid drip (IV), once a day on each of the five days she is in the hospital.

  • G-CSF. After being released from the hospital on Friday, Ashley will need to be given an injection of G-CSF daily for ten days. "Almost all chemotherapy drugs lower the blood counts. A decrease in the number of infection fighting cells (called neutrophils) makes it easier for your child to develop an infection. G-CSF (Granulocyte colony stimulating factor) helps to speed the recovery of neutrophils after chemotherapy." A nurse friend of ours here in Waxahachie has said that she will help us give Ashley the injections until we are comfortable doing it ourselves.

  • BACTRIM is an "antibiotic usually given three days each week to help prevent infections which can develop while your body has a decreased ability to fight infections because of chemotherapy". Ashley has been taking Bactrim three days a week from the start, and will continue to do so throughout the entire chemotherapy protocol (48 weeks).

On July 14 Ashley will once again be admitted to Children's for another five days. This time she will receive the following drugs.

  • VINCRISTINE (VCR) is "a plant alkaloid which interferes with cell division. It is derived from the periwinkle plant." Possible side effects include constipation, stomach cramps, hair loss, loss of reflexes, numbness, pain, tingling, jaw pain, nausea, and fever. The drug is administered intravenously, into a vein (IV push). This is the chemo drug that Ashley received once a week for six weeks while taking radiation treatments. She did not experience ANY of the listed side effects during previous administration of this drug (except for possibly hair loss, though her hair loss was attributed more to the radiation than the Vincristine). This drug will be administered once, on the first day of her hospital stay.

  • CISPLATIN (CDDP), is an "alkalyting agent which interferes with cell division (stop or slow down cell growth). It attacks cells in a tumor whether the cells are resting or dividing." Possible side effects include low blood count with increased risk of infection, and severe nausea/vomiting. The drug is administered intravenously, injected into a vein as a slow infusion (IV), usually over a 4-6 hour period. Ashley will receive this drug daily during her five-day hospital stay in July.

  • G-CSF will once again be required for the ten-day period following her release from the hospital. Ashley will return to the outpatient Hematology-Oncology clinic at Children's on the Monday after her release (July 21) for another injection of Vincristine.

All throughout the coming year, Ashley will be having bloodwork done (complete blood count, or CBC) once a week, and twice a week while she is receiving the G-CSF injections.

The above protocol represents a six-week cycle:

  • Week 1: Hospitalized (VP-16, CTX)
  • Week 2: At home (G-CSF, bloodwork twice)
  • Week 3: At home (finish G-CSF, bloodwork once)
  • Week 4: Hospitalized (VCR, CDDP)
  • Week 5: At home (VCR once, G-CSF, bloodwork twice)
  • Week 6: At home (VCR once, finish G-CSF, bloodwork once)

This six-week cycle will be repeated for a total of eight times, or 48 weeks. Hopefully, Week 1 can later be changed to daily outpatient treatments rather than a week of hospitalization.

PARTY TIME!

If the above protocol does not change over the course of the 48-week period, then the week of May 17, 1998 will be PARTY TIME, because that will be the week that Ashley is completely finished with her cancer treatments FOREVER!!! Boy, that is going to have to be some kind of MAJOR party!!! It may just be the event of the decade!! Who knows?

JUSTIN

Many of you have asked about Justin. Many of you have sent him e-mails and cards and letters along with the ones you have sent to Ashley, and many of you have specifically included him in your prayers. THANK YOU! Justin kind of comes up on the short end of the stick quite often in this whole ordeal, and that's sometimes tough for a 7-year-old to deal with and understand. So thank you for remembering Justin as well as Ashley. He will be staying the week with some friends (who will therapeutically spoil him rotten!) while we are in the hospital with Ashley. We will certainly not be completely isolated from him, but he will be apart from us for quite a large chunk of next week.

NEWSPAPER ARTICLES

Several of you have e-mailed me and graciously complimented me on my writing abilities, and have even suggested that I pursue becoming a writer. That is interesting, considering that, when I was a boy, I had dreams of one day being a published writer. One of the people who sent me such an e-mail was the publisher of our local newspaper (he has been on my e-mail update list almost from the start). You may recall from a previous update that he is the one who wrote several wonderful newspaper articles about Ashley. In his e-mail, he asked me if I would consider writing a weekly guest column for the Waxahachie Daily Light. I accepted his offer, though with a certain amount of apprehension as to whether or not I would be able to consistently meet his expectations. The fourth of my weekly columns ran this past week. Thank you for the encouragement that several of you have given me in this area.

Here is an index of my newspaper articles.

HOW DO WE DO IT?

Just this morning I was going back through a number of recently received e-mails, looking for questions people have asked that I might be able to answer in this update. Much of the material above is the result of some of those questions. One question which really caught my attention was this: "How do you stay so strong in Christ as you and your family go through this?" I could answer that in a nutshell simply by saying, "That's just the way I was raised." My parents instilled a faith in me and my brothers that does not blame God when things go wrong. Each of us has gone on to personalize that faith and make it our own through personal study and growth.

However, to elaborate a little more in answering that question, let me share with you an excerpt from the most recent of my weekly newspaper columns, which dealt with choosing to be happy. I think this will help in answering the question. In the article, I talked about Ashley's brain tumor and everything that has happened in the past three months related to her cancer.

"We are faced with a set of circumstances that we would not have chosen if we had been given the option. But we weren't given the option. The circumstances are here, so we have to deal with them. There are certain options that we DO have, however.

"Ashley has cancer. We can be miserable and walk around with a poor-pitiful-us-look-at-what-we-have-to-go-through attitude; or we can choose to be happy and decide to go ahead and laugh and have fun anyway. We simply choose to be happy and laugh and have fun. Did that make the cancer go away? Nope. Did that keep her hair from falling out? Nope. Did that cause her vision to return to normal? Nope. But I'll tell you what our decision does do. It makes the cancer, and the hair loss, and the double vision, and this whole big mess that we are having to go through ... a whole lot EASIER to go through.

"Now I'm gonna get religious on you for just a minute (sorry, it's an occupational hazard!). God never promised us that life would be peachy keen and trouble-free if we followed Him. What He did promise us, in Romans 8:28, is that He could take ANYTHING that happens to us, good or bad, and make good stuff come from it. Is Ashley's cancer a good thing? Nope. Can something good come from it? You better believe it! We have already seen that happen, and are continuing to see it happen on a regular basis.

"So it's your choice. Problems are going to come around and visit you. That's a given. The money will run out before the month does. You will get sick. If you get married, you will have a mother-in-law. (By the way, just in case anyone is wondering, I have a WONDERFUL mother-in-law!) The cat will have fleas, the baby will puke all over your best Sunday clothes, your brand new car will get a ding or scratch right where everyone can see it. And someone you love will probably get cancer. And even when all of those things happen on the same day, you can be happy if you want to be. It's that simple!"

And I really do believe that it IS that simple.

God bless you.


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