Ashley's Story

TUESDAY, JULY 8, 1997

HOME FROM HOSPITAL

Ashley finished up her week of chemotherapy and came home on Friday, June 27. It was good to be back home in our own beds once again after a week of camp and then a week in the hospital!

JILLIAN AND PRISCILLA

Before we left the hospital, we were saddened to learn that Jillian, who has been Ashley's nurse all along and has become one of our favorite people, will not be Ashley's chemo nurse any more. She has been moved back into the "nursing pool" and will be taking various nursing assignments throughout the hospital, but will no longer be assigned specifically to the Hematology/Oncology Clinic. Bummer! Jillian is a really cool person, and has carved a special place in our hearts because she has shown such love and friendship to our little girl. Thank you, Jillian, for being so special. Thank you for taking such good care of our little angel. You are a wonderful person! Our lives have been tremendously blessed by your friendship, and we love you.

(Jillian is a red-head, and we keep teasing Ashley that Jillian has been secretly giving her drugs along with her chemo that will make Ashley's hair come back red instead of blonde!)

Jillian's replacement is a nurse named Priscilla, who has worked in pediatric oncology before. She accessed Ashley's port-a-cath last Thursday during Ashley's clinic visit. Priscilla is a really nice person, very caring, and seems sincerely interested in her patients. Plus, Sheryl said that if they hadn't found someone good to replace Jillian, she (Sheryl) was going to quit! So Priscilla comes highly recommended. We have been so blessed to have such wonderful people taking care of Ashley (and us!), and it is good to know that the "changing of the guard" will not compromise the quality of care that Ashley will receive.

SHERYL'S NEW BABY!!

Nurse Sheryl, who has been noticeably pregnant the whole time we have known her, had her baby! Little Emily arrived on July 4 (that was very patriotic of her!), and from what we have heard, mother and baby are doing fine. Sheryl will be on maternity leave until November, so we will miss her for a while. But, hey, we understand how important those little bundles of joy are!

GCSF

So anyway, we got home from the hospital on Friday night, June 27. Ashley felt nauseated and threw up Saturday morning. Every time that happens, it stirs up lots of horrible memories from when this whole ordeal started, especially the Colorado trip. Ashley felt better after throwing up, and did great the rest of the day.

A home health nurse came to the house Saturday afternoon to bring Ashley's GCSF shots (a drug which stimulates blood-cell production in the bone marrow, to help make up for the reduced blood counts caused by chemo). She would have to have these shots once a day for five days, starting Saturday. Her blood counts on the following Thursday would determine whether she would need an additional five days of GCSF.

HERCULES

Saturday afternoon, after the home health nurse left, we went over to our friend Julie's new apartment and convinced her to go to the movies with us. We went to see Disney's new animated movie, "Hercules". It is really a good movie, and we all enjoyed it immensely. Obviously I don't actually believe in the Greek and Roman mythological "gods". Nor do I believe that animals have souls or can talk (but that never kept me from enjoying "Bambi" and "All Dogs Go To Heaven"). Realizing that the mythological gods stuff is all just make-believe, I highly recommend "Hercules". It is an enjoyable, entertaining, family-oriented movie, and even has a few good lessons in it (like when Zeus tells Hercules, "It's not the size of a man's muscles that makes him a hero, but the size of his heart" -- or something like that).

POPCORN AND REAL FOOD (SORT OF)

During the movie, Ashley ate half a bucket of popcorn all by herself (the little pig!). The rest of the crew didn't fall very far behind Ashley in the popcorn consumption category. We (they, actually -- I never have been a big popcorn eater, because I always end up digging the little kernel skins out from between my teeth for about three weeks afterwards, and it just doesn't seem worth the effort) put away two large buckets of the delicacy, complete with extra butter. Needless to say, when we emerged from the theater after the movie, nobody (except me) was hungry for supper. We went back to our house, Julie still in tow, and sat around waiting for the popcorn to settle in, so that we could go eat supper. It finally did, so we finally did. We decided to eat fancy, so we drove into Sonic and got grilled-cheese sandwiches and foot-long cheese coneys and stuff like that.

POST-CHEMO UPS AND DOWNS

Sunday was a good day. We all went to church Sunday morning and evening, and then went out with the teens to eat pizza after church Sunday night. Some teens from the nearby town of Burleson, who had been at camp with us the week before, showed up at church Sunday night and then went to eat pizza with us afterwards. That was a nice surprise! Ashley and Justin both had an enjoyable time.

Ashley threw up again Monday morning, which was to be the start of a very challenging week. We took her to our family doctor here in town on Monday to get blood work done. Her counts were quite a bit lower than they had been previously (due to the chemo), but were still in the "acceptable" range. Tuesday morning, Ashley threw up again, and we were beginning to get a little bit concerned that maybe this was something other than just residual nausea from the chemo. We knew, however, that there was no new tumor tissue in her brain, because the previous week's MRI showed nothing. Maybe she had picked up some kind of stomach bug or something. In addition to the throwing up, Ashley had lost her appetite, and began not eating or drinking much at all.

Susan had a softball game Tuesday evening, and Ashley and Justin went with her while I was in Dallas with the church teens at a youth function. Ashley started feeling bad at the ball park, and threw up again at home later that night. She still wasn't eating or drinking much, and was throwing up what little bit we were able to get into her tummy.

Wednesday was rather non-eventful. Ashley just lay around the house all day feeling lousy. Her tummy was hurting almost constantly, and she felt nauseated off and on. The nurses had told us that her immune system would bottom out about the middle of the week following chemo. We kept her home from church that night so that she wouldn't be around lots of people in a closed-in area. That's where people usually pick up airborne germs and bacteria and viruses. With Ashley's immune system compromised, we couldn't take that chance. Besides, Ashley had been feeling rather puny all day long anyway.

This past Thursday, July 3, Ashley had an appointment at Children's to have blood work done. Her counts came back extremely low. In fact, two of the really important measurements (segs and bands) were zero, meaning that her immune system was basically non-existent (temporarily). She was also dehydrated, because she had not been eating or drinking very much. Because of the dehydration, they had to access her port-a-cath and give her IV fluids, so we ended up staying at the hospital for a few hours.

FOURTH OF JULY

Even though Ashley's counts had hit rock-bottom, the doctors said it would be OK for us to travel to the Austin area (a couple of hours away) for the holiday weekend, to spend time with grandmothers. After we got back home from the Thursday clinic visit, we started packing. We left Waxahachie late Thursday night, and arrived at my Mom's house in Georgetown around midnight. We spent the night there and hung around on Friday until my brother Wes and his family arrived from Tomball. They have a new baby, Caleb, who I had not seen before. He is really cute!

After visiting briefly with Wes and his family, we loaded up and drove about 30 minutes or so to Susan's Mom's house near Pflugerville. We ate home-grilled hamburgers and watched fireworks. Susan's Mom lives out in the country, and we could see three or four different fireworks shows from the surrounding towns. It was pretty neat. Susan's Mom's air conditioner wasn't working, and it was pretty warm. Ashley's fever started climbing, so we put a fan blowing on her, a wet towel around her head, and took her temperature often. That night, we spent the night with Susan's sister Bobbie and her family in Pflugerville, then got up Saturday morning and went back to my Mom's house.

JUSTIN'S SPECIAL TIME

Wes and Pam were going to spend Saturday at Sea World in San Antonio, and invited Justin to go with them. He jumped at the opportunity! They ended up spending most of their time driving to San Antonio, trying to find Sea World, standing in line to buy tickets, deciding not to do Sea World because it was so crowded, going to another attraction that had a two-hour wait, deciding not to do that, then driving back to Georgetown and taking the kids swimming in the river. The swimming was apparently more fun than anything else would have been, anyway, and Justin had a blast!

HERE COMES THE FEVER

While we were at my Mom's house and Justin was gone, Ashley's temperature started climbing again. The nurses had told us that if her fever reached 101.5 degrees Fahrenheit while her counts were low, we would have to call the hospital and would probably have to take her in. Saturday afternoon her fever got up to 102 degrees, according to our thermometer. Reluctantly, I called Children's in Dallas from my Mom's house in Georgetown. The doctor said that we had two choices: take Ashley to the hospital in Austin, or drive back to Dallas and take her to Children's. We decided that we would rather have Ashley in Children's, where the doctors and nurses know Ashley and we know them. So we loaded up the car and headed for Dallas. Justin wasn't back yet, and wasn't supposed to be back for another two hours, so we had to leave without him.

We got to Children's about 7:30 PM Saturday, and Ashley was admitted. She was put on IV fluids and antibiotics that night. Saturday night's bloodwork showed that her platelet count was low, so they gave her a unit of platelets. Her red blood cell count was also low, so Monday they gave her two units of whole blood. She started feeling better, started eating a little bit more, and was in a good mood. She was released from the hospital this morning (Tuesday), and we brought her home.

For Ashley, one of the highlights of this short hospital stay was making homemade GAK in the playroom. For those of you who are not adequately enlightened, GAK is an ooey gooey slimey gross substance invented by the people at the Nickelodeon children's TV network. It sort of resembles a cross between Silly Putty, Playdough, and green slime. You can actually spend your hard-earned money and buy the stuff at Wal-Mart and such places, or you can go to the hospital and make it your very own self. We have now done both, and both are equally disgusting!

GOING BACK FOR JUSTIN

Sunday morning, after church and lunch, I made a quick trip back to Georgetown to pick up Justin and bring him back home. Susan's Mom had said that he could spend the week out at her house if we needed him to, and he wanted to. I packed him some extra clothes, just in case he wanted to do that.

LEAVING, ONCE AGAIN, WITHOUT MY SON

Upon arriving at Mimi's house ("Mimi" is my Mom's special "grandmother" name), I discovered that Justin had received a third offer -- to go home with Wes and Pam for the week. He was having a difficult time deciding what he wanted to do. He wanted to come home with me, because he missed us. He wanted to go to Mammaw's house ("Mammaw" is Susan's Mom's special "grandmother" name), so that he could spend some time with her. And he wanted to go home with Wes and Pam, because that would be a lot of fun. Decisions, decisions.

Since it was such a tough choice to make, Justin asked for a glass of chocolate milk while he pondered his alternatives. After weighing the options and carefully considering each on its own merits (and putting away a glass or two of chocolate milk in the process), he finally reached a verdict. The envelope please. "I think I'll go with Wes and Pam." So Justin is in Tomball this week, going swimming, playing with his cousins, and I'm sure getting completely spoiled. (Actually, though, he started out completely spoiled, so where you go from there I'm not sure.)

BACK HOME

After arriving back home from the hospital today, I went back to work and Susan took Ashley swimming at a friend's house. They stayed for about an hour-and-a-half. When they got back home, Ashley proceeded to throw up, and then went to sleep for about two-and-a-half hours. I think she wore herself out swimming.

Tonight, I went with the teens from church to another youth function, this time in Fort Worth. Susan had another softball game. Ashley didn't feel up to sitting out at the ballpark this time, so she stayed at a friend's house.

PEDIATRIC OPHTHALMOLOGY

Back in March, the symptom that alerted us that something was wrong with Ashley, was her sudden development of double vision. That is what caused us to take her to an eye doctor who is a friend of ours. He is the one who referred us to Children's, where we discovered the brain tumor. For three months now, Ashley's double vision has never gone away. She wears a patch over one eye at all times (switching eyes regularly), except when she is sleeping. From the beginning, we have been told, "Don't worry about it, it will go away by itself."

Last week while we were in the clinic, we asked nurse Priscilla and one of the doctors about the possibility of having Ashley referred to a pediatric ophthalmologist (P.O.) to check out her eyes and see if there is anything we need to be doing besides just waiting for the double vision to correct itself. Dr. Winick, who we have really come to appreciate, got on the phone immediately and called a P.O. across town who she highly recommends. Before we left the clinic, we had an appointment set for this Thursday.

Some friends of ours have a little boy named Chay who also had a medulloblastoma (same kind of tumor as Ashley's). He also had double vision and had to wear an eye patch. Chay's double vision didn't improve for a couple of months, so his parents started asking questions about having his eyes examined by a P.O. They were referred to a specialist who treated Chay's eyes by injecting a special drug into the eye muscle that was causing the problem. It worked! His vision returned to normal. Chay's parents are the ones who suggested that we check into having Ashley's eyes looked at by a P.O.

LOSS OF FUNCTION IN RIGHT ARM

Immediately after Ashley's initial tumor resection surgery back in March, she lost most of the function of her right arm, which had been her dominant arm. She still had gross strength, but her coordination and fine motor skills were basically gone. She had tremendous difficulty even picking up or holding things. Through time and exercise, that has improved, and we are hoping will eventually be back to 100%.

NOW WHAT?

Ashley's next treatment will start on Monday of next week, July 14. She will be in the hospital for five days to receive the fourth chemo drug, Cisplatin ("the mean one", according to nurse Sheryl). To complicate the situation, our church's Vacation Bible School is also next week, and I am in charge of it. So I will not even be able to go with Susan to get Ashley checked in, and I won't be there in the mornings during the first half of the week. I hate leaving Susan to take care of Ashley all by herself, especially since we don't know yet how severe Ashley's side effects will be to this particular drug.

Please say a special prayer that Ashley will tolerate the Cisplatin without severe side effects, and that Susan will be given an extra measure of strength next week.

AWESOME GOD, AWESOME PEOPLE

I never cease to be amazed at the generosity of God's people. A couple of Sunday's ago, our church took up a special collection to help with Ashley's medical expenses. The elders challenged the congregation to "step up to the plate" and show how God's people can take care of one of their own. The response was unbelievable!! The incredible generosity of our church family will go a long way in helping to pay the medical bills. God is truly an awesome God, and His people are truly a compassionate, giving bunch of people! Praise God from whom all blessings flow!!

THANKS AGAIN

I know I say this often, but I mean it from the depth of my being every single time I say it. Thank you so much for your continued love, concern, prayers, and support. You have blessed our lives beyond measure. May God bless your lives richly.