Radiation Therapy Part 3: Brown Medicine

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.  

Radiation Therapy Part 2: Anesthesia and a Meltdown

Radiation therapy was vitally important to Ashleigh's survival. The fact that we had already lost valuable time and had gone through so much trauma before Ashleigh finally started her treatments, was extremely frightening to me.

As I mentioned in my previous post the entire game plan had changed. Receiving treatments twice a day was no longer an option. That concerned me deeply and I really worried about it. I was afraid that Ashleigh would not receive all of the radiation that she needed, that we had some how "blown it". But that wasn't the case at all... everything just had to be rearranged. In the original plan she would have undergone treatments for about six weeks, the new plan was going to take almost eight.

Because of the anesthesia Ashleigh couldn't eat or drink anything after midnight, so, her RT (radiation therapy) was scheduled early each morning. Every morning I woke up at 6:00 or sooner. I literally threw on my clothes (probably the clothes I had worn the night before) and picked up a sleeping Ashleigh from her bed. I wrapped her in her blanket and the two of us got into the car and headed for Salt Lake City. It was still very dark each morning when we left home and I was surprised at how much pre-dawn traffic was on the freeway. As I looked ahead or in my rear-view mirror all I could see were headlights and taillights coming and going in both directions.

Once we arrived at the hospital we were directed to the room that I described in my last post; the room where the treatment would take place. The Anesthesiologist was sometimes already there, or else on his way. I don't remember his name, but he was very kind to me and to Ashleigh. We still had to lay Ashleigh on the table and strap her into the papoose board, but once the mask was put over he nose and mouth she was quickly asleep. Then the technicians were able to arrange her head exactly as they wanted with the dots all lined up perfectly for the green beams to enter. Once everything was as it should be, we all left the room closing the big, heavy door and went into the room where we could watch her on the TV screen as the green beams were put into action. It only took a few minutes.

After the treatment was through, Ashleigh was taken upstairs to the surgical recovery room where we waited about 45 minutes for her to wake up. The staff there attended to her with much kindness and compassion. It was as if she had just come out of surgery every morning. She wore an oxygen mask as she slept and they kept warm blankets on her. The nurses were so kind to me also. So very compassionate. Every morning when we were finally able to leave I carried Ashleigh to the car. Sometimes we would take her oxygen masks home for the boys. I thought Jeremy would really enjoy that.

Most days when I arrived home the boys had already gone to school; Andy who was in Jr. High (7th grade) left home earlier than Jeff (5th grade) and Jeremy (2nd grade). Sometimes I got home just in time to see Jeff and Jeremy before they left for the day; but not always. Something that has been (very) hard for me in the years following Ashleigh's death, are thoughts of what did my sons go through during this time. Did I take care of them? Were they scared? Did they know how much I loved them? Were their needs met? I don't "go there" very often or "stay there" very long because it actually causes me a lot of pain and guilt. I will dedicate an entire future post on this subject.

I believe that each of the boys had the opportunity to go to RT with me and Ashleigh. Jeff went on more than one or two occasions. He was a little trooper. It really was comforting to have him there with me.

On one of our first mornings of RT I had a bit of a traumatic experience. We would have still been within the first month of finding out about Ashleigh's tumor. Quick review of the month from my position: I just found out that my youngest child (3 years old), my only daughter, had an inoperable brain tumor; she could have radiation therapy, but it would only buy us some time, in actuality... she had 1-2 years to live; following surgery she had several unsuccessful attempts at RT; now she was successfully having RT, but only because she was receiving anesthesia on a daily basis in order to have her treatments... and I'm just giving the basic facts here; there is so much more.

That morning as Ashleigh and I drove to SLC in rush hour traffic before the sun had even risen, she got out of her seat and started acting up. Now I just mentioned all that I was going through... imagine all she was going through at that time. She tried to climb between the two front seats and wouldn't cooperate when I told her to sit down. I drove with my left arm as I braced my right arm across the seats so she couldn't get through. In one of my earlier posts on this blog I explained that Ashleigh had exhibited some behaviors that weren't normal for her; this was one of those moments. In her frustration she clamped down on my arm with her mouth in a bite like I've never experienced in my life. The pain was excruciating, but it was nothing like the pain that coursed through my heart. At that moment all of the pain, fear, grief, anxiety, guilt, sorrow, unhappiness... came spewing from my mouth in a scream that even I couldn't believe I was hearing. I wasn't screaming at Ashleigh... I was just screaming in anguish. It was as if I were all alone for an instant and it just all.came.out. Ashleigh let go of my arm and slumped back into her seat without a sound. I don't know how long I screamed and ranted and sobbed, but by the time I reached the hospital I had it "all together" again and we went inside.

I'll never forget the Anesthesiologist that morning as he escorted the two of us to the room. His eyes were filled with compassion as he kindly asked me if I was okay, I'm sure my face looked terrible and I had a huge bruise, complete with a full set of teethmarks on my arm.

After Ashleigh's second week of RT was finished, we had our first post surgery follow-up with Dr. Wright at PCMC. When Dr. Wright discovered that Ashleigh was receiving anesthesia on a daily basis in order to receive her treatments, she quickly put an end to that. Everything had been going so well... but Dr. Wright said that Ashleigh shouldn't have to go through that every day, so now a new plan was in the works... and it was going to get a lot worse before it got better.

Radiation Therapy Part 1: The Beginning

I have been procrastinating writing this post for a long time. In one of the earliest posts on this blog I mentioned a video tape journal that I had created shortly before Ashleigh died. After writing that post I actually watched the entire tape for the very first time. It was an quite emotional experience for me to do that. I listened to myself, more than twenty years ago, talking about the experiences of Ashleigh's illness, just weeks before she died and with her just feet away from me... it was surreal. One thing that I talked about at length was our experience at radiation therapy. Those eight weeks were some of the hardest, most painful, heartbreaking, terrifying weeks of my entire life.

The week following Ashleigh's surgery at PCMC we arrived at the radiology department at LDS Hospital. Our first appointment was not for an actual radiation treatment, but more of a consultation and to take CT scans in preparation for the treatments. Of course, we were all still in shock and adjusting to this situation that we were now in. Little Ashleigh was frightened and very un-cooperative in the attempts to get x-rays of her head. The people at RT (I will use the abbreviation from now on) tried bribing her with treats and money to get her to cooperate, but after a couple of hours they gave up and asked us to come back in two days to try again. When we returned, there were still struggles with getting Ashleigh to cooperate and finally she was sedated so that the "pictures" (that became Ashleigh's terminology for RT) could be taken. The picture on this post was taken just after Ashleigh was finished that day. She is obviously sedated, but smiling, and has treats in both hands. There were two women from radiology with us at that moment, one of them looked at the photo and said sadly, "when you look at this picture in a couple of years it will make you cry." I witnessed a look from the other woman as if to say to her, "I can't believe you just said that." I couldn't either. I don't remember if the picture has ever made me cry, in fact, as I look at it now I can't help but smile as I remember that she got her treats, we got our pictures... and she's still smiling, although it's a bit crooked.

Ashleigh was scheduled to have RT twice a day, five days a week, for six weeks. This was going to be challenging for us. At the time we only had one car, and it was Mike's company car. I needed a car to drive to Salt Lake City twice a day. We also had to consider the boys schedules with school, carpools, etc. This was going to be our life now and we had to make it work. I am so grateful to my sister-in-law Bibi who literally "gave" me her car for the duration of radiation therapy.

After the "pictures" were taken on our previous visit to RT, Ashleigh's head was marked in three different places with a permanent marker. I was handed a marker and told that it was my responsibility to make sure that those marks NEVER washed off for the duration of her RT. For the next eight weeks Ashleigh had a dot on her forehead and one behind each ear. It was a huge responsibility for me to make sure her "dots" were always visible and in the right place. This is where the radiation beams would be aimed at her head.

All Ashleigh had to do was lie down on a table, strapped from chin to toes in a papoose board with her head in a "dish" to hold it steady. While she was completely imprisoned in the papoose board the technicians were making their preparations. It took much longer to prepare for the treatments than the actual treatments; which only lasted a couple of minutes. There is no room for error in RT, and in Ashleigh's case she was being radiated very near the optic nerve. It was vital that she DID.NOT.MOVE.A.MUSCLE.

Once the machinery was in place everyone left the room and Ashleigh was all alone. Can you imagine leaving a three-year-old alone in a dark unfamiliar room, restrained from chin to toe, with her head in a dish (which didn't hold it perfectly still), while all of the adults; including her mommy left her? I can't imagine it... but I did it. I had no choice.

A rather over sized and heavy door was tightly shut behind us and a red light flashed as if to say "DANGER" is in here. The technicians and I watched on a television screen from a different room as they began the treatment. Green beams came out of the machines on both sides of her head landing perfectly on the tiny black dots, that had been perfectly attended to by me, as another beam came from above and landed precisely on the dot that was on her forehead. The beams continued for several minutes as Ashleigh just laid there and enjoyed the view.

This was how Ashleigh's radiation treatments were supposed to happen. Do you think that is what actually happened? NO NO NO NO NO NO NO NO NO NO NO NO NO NO NO!!!!!!!!!! I can't type enough No's nor enough exclamation points to drive my point home. It didn't work that way!!! It didn't work that way at all!!! And that fact was terrifying me.

The day after Labor Day was Ashleigh's first day of RT, and it was a nightmare. The sedative didn't work effectively enough to put her completely "out". She had to be in a deep sleep so that there was no chance of her moving her head as she lay there receiving her treatment. She screamed in terror as she was strapped to the papoose board and left alone in the dark room. We spent hours there and she received only a partial, insignificant treatment. I remember mimicking an old television advertisement when I said to her, "if you don't do it for yourself, do it for the loved ones in your life." I was desperately fighting for her life. How do you get a three-year-old to understand that?

Clearly radiation therapy was not happening the way it was supposed to. We were given the rest of the week "off" as the Oncologists and Technicians reassessed Ashleigh's case. A plan was formulated that Ashleigh would receive anesthesia each day in order to proceed with RT. This changed things up a bit. She could no longer go for her treatments twice a day, she would only go once, and it would be early in the morning.

We left home every morning at 6:15. I literally got out of bed and threw on some clothes, I then picked up Ashleigh from her bed and wrapped her in a blanket and carried her to the car and the two of us drove to SLC. When we arrived at LDS Hospital we went strait to Radiology, where I was able to lay her on the papoose board and the Anesthesiologist came from upstairs and administered the anesthesia. She was asleep in moments. I was so relieved that she was finally receiving her treatments. I thought it would be smooth sailing from then on... I thought wrong.