A Time of Reprieve

I love this picture!! She is so happy. One day I was working on a project at my kitchen table as Ashleigh was playing under the table; I became suspicious of what she was doing and this is what I found... can you tell? She was cutting her hair. She looks pretty proud of herself doesn't she?

As I reflect on the thirteen months in the lives of our family, intertwined with Ashleigh's illness, I can count numerous ways in which we were blessed. Even at the time, while in the midst of turmoil... I recognized my blessings.

As mentioned in the previous post, Ashleigh completed her radiation treatments on October 31, 1990. There would be no follow-up MRI until the end of January which was three months away. At this point there would be no further treatment for the tumor, so we went home and we lived life. How do you "live life" with an "in-your-face" uncertain future? As I've said before... we just did it one day at a time, and when you live life a day at a time... all you have to worry about is that day.

Except for the fact that Ashleigh had a brain tumor... she was healthy. All of the physical symptoms; with the exception of her crossed eye, had disappeared; she looked wonderful. Other than some understandable trauma after all that she had been through; she was a happy child.

From the finish of radiation therapy to the beginning of April, we had what I will refer to as... a time of reprieve. Please, please, PLEASE don't misunderstand... the worry, the heartache, the fear and all of those other emotions were always there; but Ashleigh was doing great, therefore we were doing... good too.

I will share a few stories during this "time of reprieve" beginning with this one:

When Ashleigh's tumor was discovered we disregarded the previous diagnosis for glasses, yet, Ashleigh's eye didn't revert with radiation therapy as her other symptoms did. Shortly before Christmas Ashleigh began to wear a patch to see if that would help the eye to straighten. Patching went well but when the patch came off each night at bedtime her eye immediately crossed. At the end of February 1991 it was determined that Ashleigh would have surgery to correct the eye and she would also wear glasses.

Prior to the surgery Ashleigh had to go and have some lab work done in Salt Lake City. I wasn't looking forward to doing this because she was terrified of anyone who looked like medical personnel. I planned a special day for us before taking her to the hospital. I found this letter in Ashleigh's baby book; it was written on March 6, 1991:

My Precious Ashleigh,

     Today you and I spent the day together. We took off to go "shop 'til we dropped". We had lunch with Granpa and Granma Marsden. We went to so many stores and you watched puppies in the pet store window. We walked and walked and you never complained. As I drove the car you reached your hand over to mine and as I took it our fingers intertwined. You kissed my hand. My precious, beloved, beautiful daughter no better friend have I than you. No other friend would I have rather spent a day with. I love you!

At the end of that wonderful afternoon we ended up at the hospital. As we got out of the car and Ashleigh realized where she was she started to cry. My heart was breaking for her. We went into the hospital and headed for the lab and her crying increased, she couldn't contain it. People were staring at us and I didn't care. Just go ahead and cry my baby girl, is what I thought, not a soul here has any idea what you've been through, go ahead and cry. I wonder how many times I have judged people with unruly children, thinking to myself; take care of it parents.

Ashleigh had surgery on March 16, 1991. It was very successful. Her eye remained straight and she wore glasses the rest of her life. Michael and I are confident that Ashleigh's crossed eye had nothing to do with her tumor. The Doctor's didn't seem to think it did either. Although it is interesting to remember... the eye is what led us to the discovery of the tumor.

When Caitlin was almost two her eye began to cross; you can only imagine what that did to us. We took her to Dr. Wing a local Opthamologist who she still sees each year. Dr. Wing had heard Ashleigh's story from another patient and in an effort to relieve us of our worries decided that  Caitlin should have a CT scan. That is another story, but the jist of it is this... both Ashleigh and Caitlin, my only girls, inherited the lazy eye from me.

3-year-old Lesley

The Summer of 1990

The summer of 1990 got off to a great start with a brief trip to Northern California to visit extended family. Uncle Derek and Auntie Dorothy were visiting from England and were there with us. We had a memorable trip to Whiskey Town Lake where the boys played with 2nd cousins and we sailed in Uncle John's sailboat, we had jet ski rides and Mike and Uncle Derek swam across the lake to an island (they seriously did) and then back.

Back at home we purchased a family pass for the local swimming pool, the kids played with friends, we had bbq's, dutch oven cookouts, family gatherings... life was good. Nothing seemed to be to out of the ordinary while we were living in the moment, but by the end of the summer as I looked back, I could recognize the symptoms that had slowly appeared as the summer months advanced.

For example, one day while enjoying an afternoon at the pool, Ashleigh suddenly threw up on the deck. She wasn't sick; there was absolutely no explanation why she did that. She also had a few uncharacteristic moments of bad temper. I remember one evening in particular, Mike had to drive to Logan for a late night "store set" and wanted me to go with him for the ride. Andy had become a reliable baby-sitter, so we knew we could put Ashleigh to bed and the boys would be fine. But she knew we were leaving and she had a tantrum of sorts. We couldn't figure it out... it wasn't like her at all. But perhaps the biggest thing that caught our attention happened in August, when one day her left eye began to turn inward.

I was immediately concerned, you see... I have worn glasses since before my second birthday. I had experienced the "four-eyes" and the "big-eyes" name calling throughout my elementary school years and this was not on my agenda for my daughter. We scheduled an appointment with the eye doctor for Monday, August 13.

Mike and I took Ashleigh to the eye Doctor that day, and upon examination the Doctor determined that she would need glasses. I was sitting in the chair and Ashleigh was sitting on my lap throughout the exam. When he made the diagnosis I immediately felt the emotion rising to the surface, and I knew that I needed to get out of there... fast. But it wasn't fast enough. I was humiliated and ashamed that I hadn't been able to hold back the tears. As we drove home I asked Mike to take me to my mother's, I knew that my mom would understand exactly how I felt, after all, she had experienced the same thing with me.

I remember walking up the stairs to my moms living room and into her arms, where I sobbed out my sorrow that Ashleigh was going to have to wear glasses. Of course my mom talked me through it with a smile and a positive outlook, but it was what she said as I left that left a profound impact on me... she hugged me tight and spoke softly into my ear, "I'm just grateful that it's not something worse."

Three days later... it was much, much worse.