|WEDNESDAY, JANUARY 7, 1998|
REVISED HOLIDAY CHEMO SCHEDULE
I failed to mention in the last update that Ashley's mid-December chemo schedule was revised. She was originally scheduled to be in the hospital the week of December 15, taking chemo Monday through Thursday. That would have caused her blood counts to bottom out on Christmas Day, compromising her immune system so that she could not be around a lot of people. This would have been a major problem for Christmas, because we were supposed to be at my Mom's house in Georgetown, Texas, with my four brothers and their families (and that is a LOT of people).
Instead of going into the hospital on the original date of Monday, December 15, she was admitted on the preceding Friday, December 12. She received a one-day treatment, rather than the originally-planned four-day regimen, to "tie her over" until after the holidays.
TEN DAYS OUT -- "I'M NOT GOING TO NEED ANYTHING!"
"Ten days out" has always been the dreaded number. Ten days after the first dose of chemo is typically when blood counts will bottom out and the immune system will be at its lowest. So, when we took Ashley in for her clinic visit on Monday, December 22 (ten days out from her single-dose chemo treatment, and the day before we were to leave town for Christmas), we just expected that her counts would be low and she would need blood and platelets.
Almost from the time she woke up that morning, Ashley was telling us, "I'm not going to need anything today. We're just going to go in there and come right back home!" She insisted that she would not need any blood or any platelets. We, however, being much older and much wiser, knew that she was probably just being overly-optimistic.
We got to the hospital, went up to the sixth floor and checked in at the clinic. Ashley was called into a treatment room to have her port-a-cath accessed and blood drawn. While waiting for the results to come back from her blood work, we visited a few of our hospital buddies and, of course, made a quick swing through the gift shop! When we got back to the clinic, Priscilla turned and looked at us, Ashley's blood work report in hand, and said, "Merry Christmas! You can go home!" Ashley's counts all looked fine! She didn't need any blood or platelets!! We were outa there!!!
(Naturally, Ashley took advantage of the opportunity to say, "See, I told you so!" Don't you just hate it when your children are right and you are wrong?!)
We had a wonderful Christmas!! Ashley felt good almost the whole time, and she and Justin thoroughly enjoyed opening gifts and being with grandmothers, aunts, uncles, and cousins. It was a marvelously happy time!! Praise the Lord for His bountiful blessings!
On Christmas night, after we had opened gifts at my Mom's house, Susan and the kids and I loaded up in the van and drove about 20 miles to Susan's Mom's house to have Christmas there. On the way back to my Mom's house afterwards, Ashley started complaining about her ear hurting. She had experienced an ear-ache the week before, but we just gave her some Tylenol and it went away. This time it was not going away. It got worse and worse.
We got back to my Mom's house and got ready for bed. By this time, Ashley was in tears because her ear was hurting so much. While we were struggling, trying to figure out what to do ("Should we call Children's? What if they tell us to bring her in? That would just kill her."), my brother Wes came into our room with a suggestion from Mom. When we were all little boys (a few years back), and one of us got an ear-ache, Mom would drop warm baby oil into the hurting ear to soothe it. It was late at night on December 25, and we didn't have a whole lot of options. Mom-tested formulas are sometimes the best medicine anyway, so we gave it a shot. And it worked!! Before long, Ashley was able to drift off to sleep.
The next day, we called the pediatrician to whom we had taken the kids during the two years we lived in Georgetown. Her office was open, and she could see Ashley that day. So off we went to the doctor. It had been over three years since Dr. Hossalla had seen our kids, and a LOT has obviously happened in those three years! We filled her in on Ashley's situation, and she then proceeded to check Ashley's ears. She immediately noticed a fluid build-up in the ear that was hurting. Ashley had an ear infection. She was put on antibiotics, and hasn't had any more ear trouble since.
After an enjoyable five days away for Christmas, we returned home on Saturday, December 27. The following Monday, we were back in the hospital. This time, however, it was our local hospital. And this time, it was Justin wearing the funny little hospital gown. (There were only two sizes available: way too small, and way too big. He chose way too big.) Justin was noticeably very nervous. But he was being such a brave boy! We arrived at the hospital at 6:45 AM, and he was taken into surgery right on time at 7:30.
The surgery to remove Justin's tonsils and adenoids went off without a hitch. The doctor said that Justin didn't even bleed very much. When he was brought back into the room, he was still pretty zonked from the anesthesia. Every time he would wake up a little bit, he would start crying and thrashing in the bed. He was obviously in a lot of pain. The nurse told us that Justin had to drink a full cup of Sprite (and keep it down) before they would give him any pain medicine. That was tough! And it took quite a while. I was tempted several times to pour out the remaining Sprite in the cup (while the nurse wasn't looking) so they would give my baby something to make his pain stop! But I didn't.
After five hours of post-op observation, Justin was discharged and we came home. He slept most of the rest of the day. When he was awake we were pushing cold liquids down him to help ease the pain in his throat, help reduce the swelling, and make sure he didn't get dehydrated. He woke up Tuesday morning still hurting, but by Tuesday afternoon the pain had remarkably subsided. It would still flare up from time to time, and we would give him pain medicine.
I took him in for his follow-up doctor visit today, and he is doing great! He hasn't had any pain at all for about two days now, and is back to his normal self. His voice sounds a little bit different, but his snoring seems to have improved tremendously.
Thank you to those of you who have sent him cards. That has made him feel pretty special!
ANOTHER TV APPEARANCE
The day after Justin's surgery, Susan took Ashley back up to Children's for another clinic visit. Once again, she didn't need any blood or platelets. Just before they were going to leave to come back home, they learned that the Aggie football team from Texas A&M University was about to make an appearance at the hospital. The football players were in town for the Cotton Bowl, and took time out of their busy schedule to stop by and bring some cheer to the kids at the hospital.
I attended Texas A&M for about a year-and-a-half, and have always been an Aggie at heart (whoop!). So Susan and Ashley decided they just HAD to stay and meet the Aggies. Ashley came home with an autographed plastic mug, an autographed Cotton Bowl poster, and a football jersey.
Oh, and guess what. A couple of the Dallas TV news teams were on hand to document the Aggies' visit. So we watched the news that night, and sure enough, one of the first images to pop up on the screen during that particular news story, was a close-up of Ashley as she sat in her wheel chair waving to the Aggies as they arrived! They showed a couple of more shots of her throughout the story. I don't know what it is about this child, but somehow she just seems to draw the camera in. Maybe there is a career in television or film in her future!
BACK FOR CHEMO THIS WEEK
As I write these words (late Wednesday night, January 7), Ashley is back in the hospital undergoing another week of chemo. She went in Monday for a four-day Cisplatin treatment, and is scheduled to come home tomorrow.
Monday evening, Ashley's G-tube (stomach feeding tube) was removed, and was replaced with a "button". The button is a small receptacle that is nearly flush with the skin, and uses a special adapter to hook up to the feeding pump. When the G-tube was initially inserted, the surgeon told us that it would be replaced with the button after about six weeks. I had envisioned that this would require another minor surgical procedure. But, nope. The nurse came into Ashley's room and simply gave a good pull on the tube, and out it came!! A pretty high-tech procedure, wouldn't you say!
The tube went down into the stomach, and then flared out at the end, just inside the stomach wall. Apparently, that flared out section at the bottom of the tube was about all that was holding the tube in place. Ashley said it was pretty painful when the tube was pulled out, because the flared-out section of tube was obviously bigger-around than the hole in Ashley's skin and stomach lining, through which it was pulled. She was given a little bit of morphine to help ease the pain.
The button (which replaced the tube) has a small balloon attached to it, which was inserted down into the hole in Ashley's stomach. The balloon was then inflated using a syringe filled with water. The inflated balloon acts in similar fashion to the flared-out section of tube, holding the button device in place. Pretty amazing stuff!!
MORE MEDICINE, PHYSICAL THERAPY
Today, Ashley had to be put back on some antibiotics for another sinus infection and a nagging cough which she has had for a few days now. She also started doing some physical therapy in the hospital's gymnasium, to help her re-gain her balance and improve her mobility. She still wobbles quite a bit when she walks, but is getting better all the time!
Ashley was also given another honor today. She was asked to be a "fashion model" for Children's Medical Center's annual Spring Fashion Show which will be held March 4. Lots of local celebrities will be on hand to escort the models for this fund-raiser luncheon for the hospital. It promises to be a very exciting event!
QUEEN OF THE GIFT SHOP
Ashley's favorite spot in the hospital is definitely the gift shop. There have not been very many days (if ANY) when Ashley was in the hospital, that she didn't make at least one trip down to the first floor to visit Children's Corner. Faye, the lady who runs the place, is a beautifully sweet person. Right from the very beginning of Ashley's ordeal, Ashley won a special place in Faye's heart. Faye's sidekick is a wonderful lady named Rose. Faye and Rose have become very special to us. Even when Ashley doesn't have anything in particular that she wants to buy (which isn't very often!), she still wants to go down to the gift shop to see her pals, Faye and Rose.
Today, Faye was putting out some new merchandise for Easter when the O'Rear clan showed up for the daily visit. Ashley helped her put prices on the merchandise, while Justin learned how to operate the cash register and actually waited on customers. If Ashley doesn't end up on TV or in the movies, maybe she and Justin can open up their own gift shop some day! The kids both had a lot of fun helping out.
THE THREE AMIGOS
It breaks my heart to have to tell you that Jonathan and Michelle, two of Ashley's special hospital buddies, have both received very discouraging news recently. We have grown to love baby Jonathan and sweet Michelle (Michelle just celebrated her 16th birthday last week.) Their families have become dear friends of ours, and our hearts are aching with them right now.
Jonathan was doing great, until the most recent MRI showed new tumor growth. The following is the text of an e-mail received from Gregg Parker, Jonathan's Dad, dated Monday, December 29, 1997.
Unfortunately, we were informed today that Jonathan's cancer is re-growing in his brain. With the exception of a couple of experimental drugs/treatments that we will discuss later in the week, he probably only has 4-6 months of life left. Needless to say, this "floored" us. But because of all the support that all of you have been, we felt you had the right to know. At this point, if you pray on his behalf, "please" pray that he will suffer little in the time he has left.
I am going to beg each of you to take your prayers one step further. Certainly we need to pray for Jonathan's comfort, as Gregg has requested. But let's also pray that God will see fit to extend Jonathan's life, to ultimately make the cancer go away, to heal sweet, precious, little Jonathan. I believe with every ounce of my being that God has the POWER to completely eradicate this cancer with the blink of an eye, if it is His will to do so. I also believe that God hears our prayers. So I am begging you to get down on your knees right now, and pray fervently that God will heal baby Jonathan. Pray also that Gregg and Stacey will receive special comfort and strength to deal with whatever God's will is. They have been through so MUCH emotional turmoil, and this latest news has hit them hard. BUT PLEASE PRAY FOR JONATHAN'S HEALING LIKE YOU BELIEVE GOD CAN DO IT!!
We love you, Gregg and Stacey. You have so many people out here who are praying for you and for Jonathan. PLEASE don't give up just yet!! I know it must seem hopeless in light of this latest news. But surely there is still at least a glimmer of hope as long as God is still in heaven and Jonathan is still hanging on.
Michelle has also been through some rough waters lately, and is battling for her very life even tonight. She has developed a couple of different infections, and the doctors have apparently given John and Kim (Michelle's parents) a fairly grim prognosis. I will beg of you once more, this time on Michelle's behalf, to pour your heart out to God and petition His healing. Yes, we pray for His will to be done in all things, but He has instructed us to let OUR requests be made known to Him, and our earnest request at this moment is for His intervention in Michelle's health.
I still have not heard any more recent news on baby Rachel. However, the last time I talked to Cecilia (Rachel's Mom), things were going well.
As always, thank you SO MUCH to each of you who continue to be concerned about Ashley. Thank you for your prayers, thank you for your cards and letters, thank you for your gifts and monetary contributions ... thank you for caring so deeply and sharing so beautifully. Our lives have been greatly blessed because of each of you. Please continue to pray for Ashley and for us. May God bless each of you richly in this new year.