Wednesday, January 21, 2009

Her story

Lydia, our precious daughter, died on December 10, 2007, from glioblastoma, the most rapid and lethal type of brain cancer. It occurs to me that I have not told the story of our last years together, of her sickness. I wrote in a journal for years, but during Lydia's illness, and since her death, I have been without words; utterly unable to comprehend and express the mixture of great sorrow and pure joy that filled those days. It has been a year now. We have endured all the "first things," all the anniversaries that are so hard to face: her birthday, the holidays, the day of her death, the day of her burial. Still, I am wordless. I am disoriented, as though the world has changed so drastically that I cannot find my balance in this new, strange place. How can I bear the pain of this loss? Can I share her story with you? It is briefer than it should be, but as time goes by, maybe I will be able to add words (as they come to me) so that it makes more sense.

In the Fall of 2003, Lydia was attending the University of Texas (about 500 miles away from home), had a serious boyfriend, and all seemed perfect--except she was having terrible headaches. The doctors were treating her for allergies, but their treatments only seemed to aggravate the headaches. In the spring of 2004, a new doctor checked her and noticed her eyesight was quite poor (she had always had her Dad's perfect vision) and sent her to an opthamologist. This opthamolgist could see a tumor behind her right eye and sent her right away for a MRI. Lydia called us from a hospital bed to tell us. Her dad and I drove the 500 miles through a terrible, stormy night to be with her when she had surgery the very next morning. The tumor turned out to be malignant, a grade 1-2 astrocytoma. We were devastated. Before closing her after surgery, the surgeon lined the area with glial wafers. The tumor, the size of a tangerine, had been pressing on her optic nerves for who knows how long. She had lost most of her vision, and though the surgeon felt the vision would return, it never did. Her blindness was so heartbreaking. She had always been a very independent person, but moved back home with us to recover. The next two years went well. She went to rehab ("This rehab is not about my cocaine habit!" she always joked), learned to get around with a "seeing" cane. She did not take any further chemo or radiation as the tumor was low grade and showed no signs of returning. Sadly, and against his wishes, Lydia broke up with her boyfriend a few months after being home.

In July 2006, the tumor returned with a vengeance, this time, glioblastoma, a very agressive, deadly cancer. Lydia again had brain surgery and the surgeon removed as much of the tumor as possible. She began radiation treatments and temodar (chemotherapy). She lost all of her beautiful hair, but never her sweet spirit. She was always so bright and funny.

She had a good year. In July 2007, she attended her brother, Chuck's wedding in New Orleans and was strong and beautiful. In October of 2007, we had planned a trip, at her request, to visit the Grand Canyon. In September 2007, though, we began to notice changes in her: fatigue, weakness, absentmindedness. It happened very quickly. We canceled the Grand Canyon trip. I am still too heartbroken to go into much detail about this part of the journey. Daily she declined, less and less able to sit up or walk or eat or do anything without help. Still, she never lost her sweet spirit. She said to me once on the way from a bathroom trip, as I had my arms wrapped around her, holding her steady from behind, "Mom, thank you for taking care of me. I have really been a handful, haven't I?" I laughed and told her she had been a handful since the day she was born! Tears poured from my eyes.

She was put on a more intense chemotherapy, avastin and irinotecan, but continued to decline. By Thanksgiving, we knew what we could do for her was not enough anymore. We could not keep her fed and hydrated enough. She could not eat or drink. I know now that her bodily functions were shutting down one by one. After taking her to the hospital, she began having seizures. She only stayed there for a few days. On December 1, 2007, she was moved to Sanctuary Hospice House in Tupelo, Mississippi. She was treated with the greatest love and respect there. She went to be with the Lord in the early morning hours of December 10, 2007. Her dad, her 2 older brothers, Chuck and Jason, and I were with her when she died.

Sweet Lydia, I know you can see the Grand Canyon from where you are, really SEE it. I love you and miss you so much.

5 comments:

cathy ates said...

Dearest Kay:
"Her Story" is beautifully written.I pray each day for you to have the strength to carry on.
I love you.
Your sister cathy

Chastains said...

Thanks for sharing this. It really opens your eyes. I feel terrible for you all. I remember Lydia. she was always so sweet. where are you in Mississippi?

Anonymous said...
This comment has been removed by a blog administrator.
Julie Anne said...

It breaks my heart to read this :( Lydia was a friend of mine in middle school and was always so sweet and beautiful. Bless your family!! She will always be in my thoughts.

Julie Anne said...

I pray for your family often. I knew Lydia @ LAMS. She was a sweet friend and beautiful soul.