Sophie Elizabeth Quayle
July 4, 2003 - October 6, 2007
Sophie was born on July 4, 2003. Her mother remembers her first night she spent with Sophie. They were in the hospital and they got to hear fireworks outside celebrating Independence Day. Sophie's parents described her as 'perfect in every way.'
Sophie's mother remembered how happy she was that Sophie would get to hear and see fireworks on every single one of her birthdays. Sophie was her parents' first child, and her grandparents' first grandchild. Her grandparents spoiled her. Sophie loved playing and swimming at what she called "Grandpa's Cottage".
Sophie reached all her milestones before or on time. To her parents, it was very obvious from the beginning that Sophie was a very special child. Sophie had advanced vocabulary. She even described her first sledding experience (at age 2 1/2 years old) as a "total disaster".
On February 21, 2007, Sophie and her parents' lives changed forever. On that date, Sophie was diagnosed with a diffuse intrinsic pontine glioma. In simpler words, this means that Sophie was diagnosed with a malignant brain tumor. This type of tumor is most common in children, but it is the rarest and worst form of brain tumor. There are about 150-200 children diagnosed each year, and the survival time after diagnosis is usually 9 - 12 months.
When her parents really thought about it, it appeared that there were signs of Sophie's tumor way back in September of 2006. These signs started with Sophie waking up three to four times in the middle of the night. Sometimes she would be crying, other times laughing and recalling events of the past. She also told her parents that her head felt 'wobbly'. Her parents mistook this for common child talk.
Sophie also acted more anxious. On her first day of preschool, she hadn't shed a single tear, but as time went on, she began to complain about school. Her parents were told that this was just a phase. In January of 2007, at her gymnastics and dance recitals, it was clear that Sophie was having trouble doing some of her routines that she had previously done with no problems at all. Her parents again thought that this was not such a big deal. They associated it with anxiety, or maybe even a growth spurt.
In the fall, Sophie had started to take naps again. She had stopped taking naps long ago, but her parents thought that maybe school was making her more tired than usual. Her behavior also changed in other ways. When it was bath time, Sophie would always love to race her father up the stairs, but she started wanting to be carried instead. On February 17, 2007, her family went to have family photographs taken. It was only then that they noticed Sophie could not smile. In fact, she couldn't move the right side of her face at all. Sophie's parents didn't think much of it though. She was only three years old, and usually, she was acting just like any other three year old little girl.
On February 20, 2007, Sophie vomited in the morning. However, she told her parents that she felt well enough to go to school. When her parents picked her up from school later in the day, Sophie's teacher told them that "Sophie seemed a little off today." They called the doctor and scheduled an appointment. Sophie slept and her parents researched her condition on the internet. By the time of the appointment, her mother was already 99% sure that Sophie had a brain tumor.
Sophie was given treatment at St. Jude Children's hospital. She had radiation treatments and chemotherapy. She gained about 1/3 of her previous weight because of the steroids. Her parents were told that after completing radiation, Sophie would probably have 'up to six good months'. Her parents hoped that she would act as she did before diagnosis, but she never acted completely the same again.
While some of Sophie's symptoms improved, Sophie never regained the complete use of her right side of her face. Her smile was never the same. She never walked without a limp again. At this point, St. Jude couldn't help Sophie any longer. Sophie went home with her family. Her parents were desperate to help her, so they tried herbal supplements and tinctures, from Probiotics, iodine drops,
wheat grass, oxygen drops, alkaline drops, krill oil to paw paw. They also
contacted a doctor from India who had seen some success using Ruta-6
for brain tumors. After all of this, Sophie still wasn't improving at all.
Sophie did have a few good months. She could move around her house by crawling. However, the steroids she had been given made her angry and irritable. She was always hungry, and her parents were trying to keep her on a 'cancer diet', but she always complained of her hunger. They found it hard to tell her that she couldn't eat her favorite foods.
The day before Sophie's fourth birthday, there were obvious signs of her tumor progressing. She had a very difficult time standing on her own, and she was throwing up more often. The second week of July, Sophie got to go on a Disney Cruise for her Make-A-Wish trip. Sophie threw up at the airport, but she was really excited about going on the trip, and she insisted that she felt well enough to go anyway.
Sophie loved going on the trip, and after she got back, she told her family over and over again how much she wanted to go on another cruise someday. When she returned home, she completed ten treatments of DMSO. She also started to vomit more frequently.
During the last two months of her life, Sophie was completely weaned off of steroids. Sophie's symptoms gradually got worse. In the last few weeks of her life, Sophie couldn't walk, talk, stand, eat, or sit. Sophie's parents always asked her if anything hurt, but she kept saying no. Sophie also went through a period of not wanting to do any of the things she used to love to do. She didn't want to read, or do stickers, or watch television.
The last week of Sophie's life, she wanted to do all these things again. Just a short while before her death, Sophie had just a few more good days. She was even able to go on a picnic with her family eat eat a few bites of hotdog and potato chips. She could drink liquids for the first time in awhile without using a syringe. However, after the picnic, when she got home, she threw up. She took a bath with her father, because of her weight and her weakness, the only way to give her a bath was to take one with her. She could no longer support herself. This was the last day Sophie had with her family.
Sophie passed away in her mother's arms. She was surrounded by family, and love.
