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.