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
