|SATURDAY, AUGUST 30, 1997|
FEEDING TUBE WOESAshley has really had a difficult time establishing an amiable relationship with her feeding tubes. She has gone through about six or seven different ones, because she keeps throwing them up and having to start over.
This past Wednesday (August 27), the feeding tube was placed once more (in the nose, down through the throat and into the stomach). A different formula was used this time, with twice the calories per serving as the kind we had been using. The pump was initially set at a slow rate of feeding, then the nurse increased the rate throughout the night. In the wee hours of the morning, Ashley woke up feeling sick to her stomach and threw up everything that was in her stomach, including the end of the feeding tube.
This posed a new problem for the doctors. The amount of formula which Ashley regurgitated was just about equal to the total amount of formula which she had ingested over the previous nine hours. Some of that formula should have started moving out of her stomach and through her digestive tract. Obviously it had not, or it would not have been still present in her stomach to be thrown up.
So now the doctors were trying to figure out why the digestive tract was not doing its job in transferring food out of the stomach and processing it. After much waiting around to see what was going to happen next, and several discussions with the doctors to review all of our options, it was decided to insert the feeding tube one more time, this time attempting to pass the end of the tube completely through the stomach cavity and into the duodenum. This would bypass the stomach completely and put the formula directly into the digestive tract, in an attempt to induce it into doing its job. We didn't get the tube back in until about 8:30 or 9:00 that evening (Thursday). Then we had to go down to Radiology to have an x-ray done to see if the end of the tube was where it was supposed to be. It wasn't. It had simply curled up inside Ashley's stomach.
Now we were presented with another problem. Do we go back and try again to correctly position the end of the tube in her duodenum? That would require monitoring with ultrasound or some other live-picture technique, to actually see what was going on with the end of the tube while attempting to position it. That wasn't going to happen probably until Friday morning because the necessary personnel were not available. After several discussions with our wonderful nurse, we decided to pull the tube back out just enough so that the end of the tube was properly positioned in her stomach, and then put her on very slow feeds throughout the night, along with a drug to artificially induce the digestive tract into doing its job. That procedure was implemented, and the feeding began at about 3:00 AM. Seven hours later she threw up once again, and guess what. The end of the feeding tube came up again.
That was it. By this time we were all fed up with this whole mess, no one more so than Ashley. She was sick and tired of having tubes shoved up her nose only to throw them up and then have them shoved back up her nose again, time after time. She was sick and tired of being stuck in the hospital for what was beginning to seem like the rest of her life. She had been in the hospital for most of the month of August. This particular stint had dragged on for almost two full weeks. It was Friday, and she was ready to go home. And so were we.
WE'RE BACK HOMESomewhat to our surprise, the doctors agreed yesterday to go ahead and let Ashley come home, and with no feeding tube to boot! Except for the feeding problems, all of the other problems are now under control. She is not throwing up (except for the few times lately because of the feedings), the rash on her bottom is gone, the fissure on her bottom has almost completely healed, she has been fever-free for several days, her tummy is not hurting her like it was, her blood counts have finally risen above the crucial point, the infection in her gum has just about disappeared, and the blood infection seems to be gone (I may have left out a problem or two!). We left the hospital yesterday evening and arrived home about 8:00 PM. Praise the Lord!!
We are supposed to call Dr. Winick on Tuesday to find out when they want us to come back in to begin the next round of chemo. Ashley was supposed to be getting Cisplatin ("the mean one") all last week, but they couldn't give it to her because of all the other problems that were going on, primarily her low blood counts. Hopefully she won't have to be re-admitted until Thursday. I'd like for it to be the following Monday, personally, so that she has a full week to build her strength back up. But that may be wishful thinking.
As I was typing the above information, Susan called me to come into the kids' room. Ashley was sitting on her bed, leaning all the way over and crying. Her stomach was hurting and she felt like she was going to throw up. She kept saying, "I don't want to throw up. I don't want to go back to the hospital!" Bless her heart!
We gave her some Zofran, and she calmed down. Hopefully, she will be OK through the night and will feel better in the morning. Please, God, let her stay home for a few days! She deserves at least that!!!
JUSTIN'S BIRTHDAYOn Thursday of last week (August 21), Justin turned 8 years old. That was the day Ashley went back into the hospital after being home for about 10 or 12 hours. One of the reasons she so desperately wanted to come home last week was so that we could all be at home for Justin's birthday. Well, since that didn't work out, we made arrangements through Ashley's wonderful Child Life Specialist, Lesley, to have the hospital kitchen staff bake a special birthday cake for Justin.
Ashley decorated her hospital room with all kinds of Happy Birthday decorations (I guess Lesley came through with those, as well), and when Justin and I arrived that evening, we had a small birthday celebration right there in the hospital. Ashley's wonderful Social Worker, Diane, stayed around after work so that she could be there when Justin arrived. (What an INCREDIBLE bunch of people the Children's crew is!!) Justin seemed to have a good time.
MRIYesterday afternoon, before being discharged to come home, Ashley had another MRI done. She wasn't scheduled to have one for another month, but with all the recent problems, the doctors just wanted to look and make sure there wasn't any new tumor growth contributing to some of the problems. I am very happy to report that the MRI pictures came back clean. There is still no new tumor growth and no new spots showing up! Praise the Lord for that wonderful news!!
CLEAR LAKE YOUTH GROUPIn my last couple of reports, I told you about the youth group at the Clear Lake Church of Christ near Houston, where my brother and his family worship, who had a special garage sale to raise money to help our family. We had planned to travel to Houston last weekend so that they could meet Ashley and present us the check in person. The trip had to be canceled because of Ashley's stay-over in the hospital.
Well, since we couldn't go to them, they are coming to us. We are expecting a group of about 25 adults and teens to arrive in Waxahachie tomorrow morning. After our morning worship service, we will eat lunch with the Houston bunch and give them a chance to meet Ashley (and vice versa). They will present us with the funds from the garage sale, and then head back home. They will end up driving about nine hours, round trip, just to deliver a bit of sunshine and love in person to a little girl who has stolen their hearts. What a wonderful example of the love of Christ!
RACHEL, MICHELLE, AND JONATHANAnd now a quick update on Ashley's "three amigos" from Children's.
Bobby and Cecilia received some wonderful news on Thursday. A perfect-match bone marrow donor has been found for Baby Rachel!! Praise God!! (I certainly don't intend for that phrase to become trite or overused, but I believe God deserves to be praised for such wonderful things as the saving of a child's life!!) Rachel has been brought back to her room from ICU and is doing wonderful! Thank you for your many prayers for this precious little angel. It looks like God is mercifully answering those prayers with a resounding "YES"!!
Michelle has had some rough days recently, due to the chemotherapy. The intense chemo is designed to put her system into remission from the recent relapse with leukemia, so that the bone marrow transplant can take place. Please continue to pray that she will tolerate the chemo without an inordinate amount of suffering. We continue to praise God that Michelle's sister Cheryl was a perfect bone marrow match, and continue to pray that the bone marrow transplant will completely cure Michelle of her leukemia. God is certainly powerful enough to make that happen!!
Jonathan has begun his three months of chemo. Gregg and Stacey continue to be upbeat and optimistic about Jonathan's survival and his future. But then, they too believe in the God who created all things and who is in control. Please continue to pray for God's blessings on this sweet family. Jonathan is a precious and beautiful baby, and Gregg and Stacey are really neat people. We have developed a very special bond with them in a very short amount of time (as we have with Michelle's parents and with Rachel's parents). Also pray for Jonathan's big sister Meghan (4 years old). Siblings often have a tough time dealing with all the issues involved in a brother or sister having cancer.
CANCER KIDSIn the past few days, I have been blessed to have a special dream of mine come true in a very short period of time. Sometime last week, I began thinking how neat it would be to have a web site dedicated to letting cancer kids tell their stories to the world. I even thought it would be neat if that web site could have a special Internet address, like www.cancerkids.org or something similar. So I found a web hosting service that could handle what I wanted to do, and applied through the "powers that be" for the special address. I was ecstatic when I learned that the special address I wanted was available! I filled out the application, submitted it, and a few days later the address www.cancerkids.org was working.
Now I have created what I think is a very special web site (special not because I created it, but because of the strength and determination represented in the stories told there). You can check out the main page of the Cancer Kids web site at http://www.cancerkids.org.
The Cancer Kids web site is in its infancy right now. But the seed has been planted. Over the next few months and years, I expect that seed to grow and the web site to take on a life of its own. I don't know how big this thing will become, but I do have some personal dreams and visions of what I would like to see it accomplish. If God chooses to bless this endeavor, I believe much good can come from it.
Go read some of the Cancer Kids stories. You will be inspired. You will be moved to tears. You will be encouraged. And you will fall in love with some beautiful kids. More stories will be created, and others will be linked to, in the days ahead.
THANK YOUAs always, thank you for your love and concern for Ashley, for our family, and for Ashley's "three amigos" -- Jonathan, Michelle, and Rachel. My prayer for you is that God will continue to richly bless you and those you love with His mercy and grace.