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.