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.

Ashleigh's Baby

In my last post I wrote about Ashleigh and Christopher. This post is about Ashleigh, and Christopher's baby sister Tara.

At the time of Christopher's death he was Alan and Marivic's only child. I can only imagine how hard it must have been for them to be to be left alone as a couple. Our situation was much different, when Ashleigh passed away we still had three sons we needed to take care of. We still had the "noise" of children in our home as well as the responsibilities and obligations that come with having children.

Now, it is extremely important to understand that one child can not replace the loss of another. But empty arms can be filled with the love of another. It was the best news to receive when a few months following Christopher's death, Alan and Marivic announced that they were expecting a baby.

On the day of Tara's birth, Ashleigh was half-way through her series of radiation treatments (story still to come). Ashleigh and I waited patiently at the hospital for the baby's arrival, and were two of the first to meet her when Alan brought her from the delivery room. She was a beautiful baby girl, and a precious gift not only to Alan and Marivic... but to all of us. It was so good to see them with a child in their arms again.


Ashleigh of course, was the youngest child in our family. Many of her little friends had younger siblings, including her best friend Morgan. Since Ashleigh didn't have a baby in her family, she began to refer to Tara as her baby. Just as we had tended Christopher, we also tended Tara. On the days that Tara came to our house Ashleigh got to play "big sister", and she truly enjoyed it. When her little friends talked of their "babies" Ashleigh would say, "my baby is Tara."

In those final months of Ashleigh's life, when we knew that the tumor was growing, she slowly began to lose a lot of her abilities... things like walking, and eating, and talking; just to name a few. When her speech was affected it became slow and slurred, until the time came that she couldn't speak at all.

But before that time came, we did plenty of talking and singing and laughing as I lay in her bed with her night after night. One of our favorite songs to sing was A Happy Family. Every night we would sing:

I love Ashleigh; she loves me
we love daddy, yes siree;
He loves us, and so you see,
we are a happy family.

It was a song that lasted a long time, because we sang a verse for daddy and each of her boys, and her Granpa's and Granma's and every aunt, uncle and cousin in the Marsden and Leger families. When we sang "...we love Tara, yes siree..." Ashleigh would always chime in with "my baby is Tara" with her slow and slurred speech. To this day I love to sing that song quietly into the ears of my grandbabies, and in the car with the pre-school grandchildren as we go on "Grandma Days". We always sing "...we love Ashleigh, yes siree..." and we know that she loves us, and that she loves Tara, and all of the rest of our family.

Twenty years is a long time ago. So many memories that I have... and so many that I wish I could recall. I don't know what the last words Ashleigh said to me actually were. But I can tell you that the last words I remember hearing her say, were... "my baby is Tara."

Love you Tara.

Ashleigh and Christopher

If this picture was featured in my "Classics and Favorites" series on my other blog... hands down it is a classic. Alan and I often traded baby-sitting. He took this picture while I attended the temple one morning. I love the expressions on their faces. What were they thinking? I LOVE them!!!

A few days ago while preparing dinner I was listening to the weather report on the news. Our winter has been unusually warm and on this particular day... February 7, it looked and felt like a beautiful spring day outside. As I listened to the news, my mind suddenly went back twenty-two years ago to February 7, 1990. It was my nephew Christopher's third birthday. But Christopher wasn't with us that day... he had passed away just eight weeks and one day earlier.

Christopher's passing was sudden, unexpected, and a shock to all of our family. I found out that day, in a very real way, that a broken heart was an actual physical pain. I couldn't even begin to comprehend how my brother and sister-in-law felt.

On this "first" birthday after Christopher's passing, the weather was much different than what I previously described. It snowed, and snowed all day long. It was winter at it's finest. Nonetheless, I felt a deep desire to go and visit the cemetery, so I drove up the mountain and parked the car. The snow was very deep on the hillside and still falling heavily from the sky. Through the years, there have been many times that we have waded through deep snow to find our little ones graves. The cemetery is a cold and lonely place on a stormy winter day.

I didn't know on that day, twenty-two years ago, what was looming ahead for me and my child. I didn't know then that my brother would become my "ally" of sorts, as we would soon be siblings both living the same... yet different experiences of going through this life with the devastating loss of a beloved child.

I'm sure that to our extended family the names Christopher and Ashleigh are synonymous to each other; they often are to me. During their short lives they knew each other well. They were playmates and friends, as well as cousins. They were born just three months apart and they left this earth in just over twenty-one months of each other. Each day that goes by takes us one day further from the time we spent with them here on earth, and at the same time... is a day closer to the unimaginably glorious reunion that will take place between parents and children. As the years have passed, my confidence has increased in my belief that Ashleigh and Christopher's "timing" together on earth and in heaven, is not coincidental.

They were the best of friends from their infancy.

As the "big" sister in the family, I always felt a certain responsibility to look out for my younger siblings. Isn't that what big sisters do? On August 16, 1990, it was my little brother Alan who was one of the first to arrive at my home upon hearing the news about Ashleigh. During a conversation between me and Alan before that fateful day, I clearly remember him saying to me that I would never have to worry about losing a child, because lightening never strikes twice. But lightening did strike twice, and this time when it hit, it was my little brother that was looking out for me.

My memories of Christopher are tender (you can read more here). He was an intelligent child. I can still hear his little voice in my mind and see his handsome face. Although I have mourned the loss of my own child, I can still shed tears that are exclusively for Christopher. He has a piece of my heart. I am grateful he is my family. I believe with all of my heart that he and Ashleigh are together, and that thought has brought me much comfort. They are lights to all of our family. A reminder to each of us that families really are eternal, that we must put effort into our relationships, and love one another unconditionally.

I love Alan and Marivic. They have been a source of strength to me through these many years; they are "rocks". Not only are they our family, but they have been friends to Mike and I, as the four of us have been on this "journey".

When I try to comprehend that joyous reunion I mentioned earlier, well... there are no words to describe. But, I'm hoping that my brother and I will someday be trading baby-sitting again when we give up our "empty-nester" lifestyles in order to raise our little ones during the millennium. Can you just imagine that day?

Love you Alan and Marivic!

All of the Marsden cousins in August of 1989, just a few months before Christopher passed away. I have always loved the fact that Christopher and Ashleigh stand together in this picture.

Christmas Wreathes

December 12, 2011

Another Christmas season has come and gone; and just like that... it's almost the middle of January. I think that many of us share similar traditions during the holidays; work parties, church parties, family parties, school concerts, visits with Santa at the mall, "The Nutcracker" ballet, the lights at Temple Square. We missed Temple Square this year; but, I finally got to go to "The Forgotten Carols" which I hope is a new tradition.

Although many families have similar traditions, we have a tradition that I'm sure few of our acquaintances share... that is our Christmas visit to the cemetery to place wreathes at the graves of Ashleigh and Christopher. This always takes place on December the twelfth, because that is the anniversary of Christopher's death.

Usually it is Mike and I and my parents who make this Christmas visit (Christopher's parents; Alan and Marivic, live in California). For Michael and I, this was our twenty-first Christmas visit to the cemetery. Most years the cemetery is deep with snow, and we have to be very careful as we walk up hill to the graves so that we don't slip and fall (especially Dad and Mom). When there is snow we have to dig to uncover our two markers. This is always done by my Dad and Mike, who then situate the wreath stands (after Mike confirms with me, "Christopher's wreath is gold and Ashleigh's red?"} and secure them into the ground; which is difficult because the ground is frozen, and because the snow is so deep, we aren't sure if the stands are in the ground or just in the snow. This year there was no snow so it was an easy task to stick the wreath stands right into the ground where we were confident they would remain until wreath retrieval. Wreath retrieval is usually up to me. I always go before New Years, because if I don't, we run the risk of the wreathes being removed by the cemetery people (that happened one year).

Our cemetery visits vary each year. Sometimes we are quick, and other times we spend a little more time; sharing some tender moments, sometimes a prayer together, sometimes a tear or two. It is truly a sacred spot. It has been dedicated through the power of the priesthood. On the morning of the resurrection, this is where I will greet my daughter. Can you imagine how that is going to be?

December 12, 2009

So, what exactly does this Christmas wreath mean to me? To me it is a representation of two gifts. The first gift... a visual acknowledgement that she is remembered by us. I can't buy her dolls or dresses anymore, nor can I fill her stocking, all I can do is place this wreath at her grave to show whomever passes by, that the little girl who is buried there is loved. The second gift... it isn't something anyone can see as they pass by her grave. It is simply... me. It is my renewed commitment to be a better person; to try harder to be the person I am supposed to be. To be kinder, more forgiving, to have more patience, to show more tolerance, to be less selfish, to murmer less, to serve more, to sum it up... to be more Christlike. That is my gift to her, so that on that glorious morning I can take her by the hand and say, "let's go home." And as Ashleigh herself said, "Oh... what a day." It truly will be.

The Forgotten Carols

A happy Ashleigh on Christmas morning 1988.

Tonight I spent an evening with Michael McLean. Well, me and a couple of thousand other people at The Forgotten Carols. It is interesting to note that this is the 20th anniversary tour of The Forgotten Carols , just like it is Ashleigh's "20th anniversary" this year as well. I share this experience on this blog and not my other, because when I think of Michael McLean's music... I think of Ashleigh.

My first memories of Michael's music are from the early days of Ashleigh's illness. I somehow accumulated a cassette tape of Michael's songs, which I listened to in the car as Ashleigh and I drove to and from radiation therapy on a daily basis. In Ashleigh's final weeks, her home health care nurse loaned me a video tape of Michael performing some of those same songs. I watched that video every day. The final song on that tape is Together Forever during which he asks the audience to think of someone they love who was not with them, and then invites the audience to sing along to the phrase, "... we can be together forever someday..." and then with more conviction, "... we will be together forever someday...". As a young mother whose heart was breaking, and with so much uncertainty ahead of me, I bravely sang along with Michael and his audience as tears rolled down my face. Tonight at the conclusion of The Forgotten Carols, Michael sang Together Forever , and again, invited his audience to think of a loved one who wasn't with them and invited us to sing along. The words, "... we can be together forever someday..." filled the auditorium as did the spirit. My heart was touched and my eyes filled with tears, as I sang those words with conviction, because I know that they are true, "... we will be together forever one day...".

Caitlin's Thoughts

by guest blogger Caitlin Leger

Aren't these sisters beautiful!?! I am grateful to Caitlin for her willingness to share some of her feelings about her sister Ashleigh. Although they never met in this life, they are sisters, just like any other sisters who have had the opportunity to grow up together, and Caitlin and Ashleigh's time will come... I have no doubt. Thanks Caitlin for your willingness to share... I know it wasn't easy.

When my mom first asked me to write a post to go on her Ashleigh blog I was very hesitant. I first of all had not read the blog yet, and secondly felt like there was nothing I could say. I never met Ashleigh on earth and didn’t know what I could write on a post that would be of any benefit for anyone to read on her blog. My mind has however changed since I have finally read the blog. I go to college and felt like I was always busy and didn’t have time to keep up with any blogs, but just a couple days ago I decided I would start reading from the beginning, now every free moment I have, I immediately go to my last spot on the blog and read on. I regrettably decided to even read during a lecture class I was in where we had a guest speaker, and while streams rolled down my face, I just hoped that the speaker was somewhat inspirational, and my classmates may have thought I was touched by her words. I decided that immediately after I read the latest post to start writing this one because I have been so influenced by this blog, and definitely can say I feel closer to my sister than ever. Hearing all of these experiences are very new and eye opening. I have called my mom in tears every day after reading the blog, or sent text messages to her, because I can’t even imagine what a heartache my family must have been through during this time. I of course have grown up knowing I have a sister named Ashleigh who passed away of a brain tumor. I have always grown up knowing exactly who Ashleigh is, and seen pictures, videos, and heard stories now and then about her life and her experiences, but not until this blog have I heard these details which have made me have such a deeper appreciation for my parents and my brothers and all of my family because of the sorrow that they must have gone through seeing their little girl go through all that she went through. I have always felt a little…well for lack of a better term “left out” in my family because of their experiences with Ashleigh. I know that my family all knew Ashleigh and were able to be with her here on earth. I also know they had to have grown closer as they supported each other in getting through her passing away. One day very recently I expressed this feeling of being left out to my mother. She told me with all confidence that she knows that I knew and know Ashleigh too, and that she is my sister and I should always feel close to her. And though I wasn’t there to experience Ashleigh’s passing away, my role in our family is a gift. I know that my family all views me as a gift, and now after understanding that, I realize how important that role really is. I am so grateful that my family has a testimony and knows that we will be with Ashleigh again. I know that my family was able to get through, and move forward, from such a hard and sad experience because they had so much faith, and relied on the Lord. I have also been very impressed with all of my brothers and their wives in teaching their children about their Aunt Ashleigh, and I know they all know her and love her. When I was born, my mom had to go through a very long labor. My parents have always told me that it was so long because I was saying goodbye to my sister in heaven. Knowing that I have a sister waiting for me in heaven has been even more of an incentive and a goal for me to live righteously while on earth so that I know I can be with my sister Ashleigh again someday. I love my sister Ashleigh and I know she loves me. I look forward to the day when I will be able to hug her and tell her how much I love her and missed her.