Who the heck are these people anyway?
The photo above, that's us at Christmas in 2003.
Second from the left, that's my husband Doug, an enterprise software architect geek, for you other geeks out there, he programs in Java and he currently works (telecommutes) for a company in Chicago, CCC Information Systems.
At Doug's right hand, that's me, Kathy or Kathleen (Doug calls me Kathy, my parents call me Kathleen), an ex-chemist-turned-software-web-development geek. I've worked for many companies, but since the kids were born, I've worked part-time, mostly from home.
Doug and I met while we were in school at University of California, Irvine. Doug dropped out of school after two years to start his own software company with another UCI graduate and I graduated with a degree in chemistry and started working as a chemist. It was after that we started dating.
Under Doug's influence, I decided to go back to school and get another degree in computer science at University of California, San Diego. Doug moved to San Diego to be close by. I graduated from UCSD and we got married in 1988 and settled in San Diego.
On September 6, 1994, after several miscarriages, we welcomed our first son Steven into the world. He's the bald kid on the left in the photo.
Two years and nine months later, on June 30, 1997, Sean, the kid on the right, 6 years old in the photo, came into our lives. Steven and Sean are best friends most of the time, in between episodes of wanting to kill each other.
While I was 6 months pregnant with Steven in 1994, Doug's sister Deb's just-turned-three year old daughter was diagnosed with an inoperable and highly aggressive brain tumor on her brainstem. Kyra fought her tumor bravely, with great courage and grace, but the tumor proved to be too strong to stop.
Kyra died on February 15, 1996, the day after Valentine's Day, 19 months after her diagnosis, at home in Santa Cruz surrounded by her family and friends. She was 4 1/2 years old and Steven was 15 months old.
Steven was born with a multitude of problems from birth, a cleft palate, limb length discrepancies, and a bunch of other things that he either outgrew or that didn't seem to amount to much in the big picture.
At the end of the summer in 2003, 3 weeks before school started, Steven started complaining of headaches and nausea in the afternoon or early evening.
He would have little "episodes" that would last an hour or two, then he'd feel better. Not every day in the beginning, maybe every 2 or 3 days. His second episode, he felt clammy to the touch, covered with sweat just like he had a fever, but his temperature was absolutely normal.
I took him to the doctor, who said it was allergies most likely. The episodes kept occurring and his pediatrician ordered a complete blood workup, which showed nothing.
After the third episode I had a sick feeling in my gut. After Kyra's diagnosis, I had volunteered my time and talents to a brain tumor support group and through that group I had gotten to know lots of other brain tumor patients and doctors. I used to do the Brain Tumor Awareness Week website. I knew the drill, I knew the symptoms.
Still, it didn't seem possible. We celebrated Steven's ninth birthday on Labor Day weekend 2003, me with butterflies in my stomach the entire time. He was OK that day but the next day he threw up while we were at the store trying to refill a prescription for his "allergies".
I called my pediatrician and he said wait for one more episode, then we'll order further tests. It was Saturday night. I took Steven to church. In the middle of church, he went to the bathroom because he was feeling nauseous.
It was my "aha" moment. I knew then, with no MRI or CT scan to tell me, that he had a brain tumor. I felt sick. I'd known it before, after his third episode, but at that point I was still able to rationalize it. After all, what are the chances that lightning strikes twice?
Steven was diagnosed on September 9, 2003, 3 days after his ninth birthday, with a supratentorial primitive neuroectodermal tumor, or PNET, a highly malignant brain tumor similar to medulloblastoma, that seeds itself through the cerebrospinal fluid. It is the same cancer as Ewing's sarcoma and can metastasize to the bones.
Steven had surgery in San Diego at Children's Hospital, the surgery was deemed a complete removal of his tumor. His surgery was on a Wednesday morning, we were home on Friday evening.
Even though his tumor was removed, if any stray cells remain they can start growing anywhere in his brain, spinal column, or bones. Doug and I spent two solid weeks, probably 20 hours a day, researching available treatments, sending his records out for third and fourth opinions, and reading the grim survival statistics and side effects of treatment.
We decided on a treatment protocol at St. Jude, SJMB03, which offered a lowered dose of radiation to Steven's developing brain while maintaining favorable survival statistics.
Steven and I relocated to Memphis for the duration of Steven's treatment. Steven received radiation to his whole brain and spine during October and November of 2003. We lived at Ronald McDonald House during Steven's radiation treatment.
We returned home for Thanksgiving and Christmas, then the four of us returned to Memphis the day after Christmas to begin four cycles of high-dose chemotherapy with stem cell replacement. From January to May we lived at Target House in Memphis.
Steven finished his treatment officially in May 2004, now we return to Memphis every three months for followup visits, to monitor the side effects of treatment and to look for signs of recurrence.
This is our story, stay tuned ...