For several years I cleaned my parents house on Fridays. Granpa had a supply of chocolate covered raisins that Ashleigh loved. She would call him at work and ask if she could please have a treat and of course he always said "yes". This picture would have been taken during the summer of 1990. Ashleigh is in Uncle David's room playing with his stuffed Gumby, and if you look closely at her mouth you can see that she has already had some of Granpa's chocolate raisins.The problem with our first attempts at RT (radiation therapy) was the fact that Ashleigh was not falling asleep after receiving her medication. Giving Ashleigh anesthesia had been a last resort, but it worked quickly and effectively and we had successful treatments for two weeks. When Dr. Wright found out what was going on she disagreed with it. She talked to the Oncologists and Radiologists and said to them, "let the mother give her the meds at home." I was quite satisfied with the way things were going at this point, but of course, my main focus was that Ashleigh was receiving her treatments. I didn't really want to disrupt the routine, but I still had a hope that if Ashleigh didn't need to receive anesthesia she would be able to have two radiation treatments a day. For some reason I had it stuck in my head that we would have better success if she had two treatments a day as originally planned... I recognize that I was grasping for any hope at that point, but would anyone expect any less of me? The decision was made that I would medicate her at home. The Monday following her Friday appointment with Dr. Wright, we began this new routine and Ashleigh was medicated so that she could receive radiation.
The following six weeks were quite different than the first two. Our appointments in the beginning had been at 6 am; now they were at 3 pm (she would only receive radiation once a day). Ashleigh was prescribed chloral hydrate which is a strong sedative. I was to give her the dose of meds at home at 2:30 and then drive to the hospital. Easily by the time we arrived she should have been asleep... or very close. As I sit here at the computer my head ends up in my hands. This is part of our experience that I remember very well and so many thoughts flood into my mind and I'm not exactly sure how to sort them out. So I'm just going to type.
The chloral hydrate was a terrible medicine. The memories of administering the medicine to her traumatizes me. It was a liquid and it came in an old fashioned brown medicine bottle; Ashleigh called it "brown medicine"... I hated that brown medicine, it caused a lot of anxiety in our home. It was a daily fight to get that medicine in her mouth. She kicked and screamed and spit it out... it was hard to hold the spoon and keep the medicine in it, while keeping her arms and legs from flailing and kicking, and her head from turning away from me... all with only my two hands. I tried disguising it in different drinks like chocolate milk and soda pop, but to no avail. The day I remember best was when I literally straddled her on the floor so that she couldn't move her arms and legs, as I forced it down her throat. Eventually Ashleigh seemed to have acquired somewhat of an immunity to it after having received so much of it. Once while re-filling the prescription at the LDS Hospital pharmacy, the Pharmacist seemed alarmed when he discovered the prescription was for a three-year-old girl. He said that the dose prescribed should "knock out an adult". Brown medicine was a painful experience... for both of us.
Most days when we arrived at RT Ashleigh was still awake, but drowsy, in my arms. There were only a few times that she was soundly asleep. Those were the best days. We went right into the radiation room and were finished and on our way home in minutes. That didn't happen very often. There were a few times that Ashleigh walked into the radiation department wide awake, those were the worst days, we were there a long time. There were a couple of times that we went home without even receiving a treatment.
When we arrived at RT and Ashleigh was wide awake or drowsy, we were put into a small room where we would wait until she fell asleep. It was a patient room with an exam table and a couple of chairs. On the wall there was an x-ray reader. The person who showed us to the room would turn out the lights in the room, then turn on the light to the reader which acted as a nightlight of sorts. They would then shut the door and Ashleigh and I were left alone so that she could fall asleep. It wasn't an easy task, falling asleep, even after the brown medicine. I sang to her or told her stories; there were days when it seemed as if we were in that room forever. Every once in a while the door would open slightly and someone would peek in to check on our progress. I would shake my head... not yet. The door would gently close and I would continue singing and story telling... eventually she became quiet and would no longer stir. I could always tell when she was in a deep, deep sleep, but just to be sure I'd make a noise, as a test to see if she would move. When she didn't, I knew that we were good to go.
During the process that I just described, I also had to position Ashleigh just perfectly in my arms for an easy and non-disruptive transition when I took her into the radiation room. When she was in a deep sleep, her neck rested on my right wrist and her knees hung over my left arm. I carried her like that into the radiation room. I laid her down on the papoose board just like all the previous treatments when she had had anesthesia. There was a moment when I held my breath as I laid her down, a moment of truth of sorts... making sure she was really asleep. I helped them strap her in, sometimes laid her favorite blanket on her, made sure her head was in the dish. Then I left the room with everyone else. Sometimes I couldn't do those things...sometimes I couldn't take it and I just got out of there before I lost it. This is a quote from me on the video: "It's very hard to watch your child in that type of situation, especially one so young, when you can't really explain to them... 'Ashleigh I'm doing this because I love you and I want you to be better, I'm not trying to hurt you.' It was all so confusing and frightening to her."
After her treatment each day I went back into the radiation room and picked her up and carried her to the car. She was sound asleep, but I would whisper to her, "thank you Ashleigh, thank you for being such a good girl and getting your picture taken."
I remember one day as we were sitting in the exam room waiting; Ashleigh was already in position in my arms and had just slipped into her deep sleep. I was looking down at her face and feeling all of the grief and pain of our situation. At that moment, I felt the overwhelming feeling that the Savior stood just behind me and had surrounded us both with his arms, and that he was looking down at Ashleigh just as I was, and I knew that he loved us both.
Each day, whether it was after her early morning treatments in the beginning, or, when we continued with her afternoon treatments, I breathed a sigh of relief that we had one more successful treatment behind us. I was able to go home and put it behind me for the rest of the day. It didn't go away... it was always there, hanging over all of us, but for a few hours I could rest from it. Although I lived each day not knowing what the future would bring... I learned to live with it. I did it one day at a time... sometimes one moment at a time. I did it. And I'd like to think that I did it well.
On Ashleigh's final day of RT (Halloween 1990) we met with the Oncologist at LDS Hospital. I remember my heart pounding in my chest as he spoke to me. Going through RT had insured that Ashleigh's tumor was shrinking, but radiation was over now... this was it. We knew that the radiation had done some good... all of her symptoms, except her crossed eye (another post), had reversed. She looked and acted like a normal three-year-old. Nobody would have known that there was anything wrong with her at that point. I remember him telling me that if they could do unlimited radiation... they could probably cure all tumors. I felt so helpless when he told me that. This was something that was completely out of my control now. We had done all that we could. It wasn't in our hands anymore... if it ever was.
As I have been writing this blog (for nearly a year now) I have reflected so much on Ashleigh's and our story. As I have written this three part series about radiation therapy, a thought occurred to me that I've had before... it could have been so easy. Had Ashleigh simply understood, that all she had to do was lay on that papoose board with her head in a dish, and hold perfectly still for just a few moments and when she was finished... she could go home. Although she would still have had to go through this trial, it would have been easier; she would never have had to go through the traumas of anesthesia or brown medicine, she could have had RT twice a day, we wouldn't have spent countless hours at RT trying to accomplish such a simple task. But she didn't understand. She was just too young.
I can't help but wonder, how often do we make the daily situations in our lives much more complicated than they need to be? I know there are times that I do. The choices that we make sometimes result in consequences that we would rather not deal with. Sometimes we are prideful and we think we know it all but we aren't willing to learn. Sometimes we are stubborn.
Although I'm not grateful for the experience we had... I'm grateful for the lessons I've learned. And the lessons I'm still learning. I'm going to work harder at listening and understanding. You see, in the eternal scheme of things, like Ashleigh, I'm young too. She trusted me, but she still fought the circumstances... I trust God, but I still make mistakes; but I know if I just listen and follow His direction, when I'm finished... I can go home too. It's that easy.
