We excitedly moved to Paso Robles, in central California, away from the business of southern California in October 1998. The fresh atmosphere and oak-studded countryside, along with having family in the area, made this our choice of where we wanted to raise our kids.

We rented a house about eight miles out of town and settled into this new-to-us old town. My older daughter adjusted nicely to riding a bus on back roads to school; she joined my uncle’s 4-H swine group, and we participated in tons of activities through the local park.

Amy’s dad kept busy working as a high-performance mechanic and doing boat maintenance at the coastal marinas, while Amy and I joined the local community college. Amy christened the school’s new Child Care Center, and I enrolled in a few classes toward an AA in journalism, focused on my dream job!

Standard Setbacks:

All was well until Amy got sick in January 1999, with frequent sore throats and trouble breathing at night. The usual self-blaming thoughts of “could have, should have” with regard to taking better care of our children (eating less sweets, getting more exercise, or getting medical insurance) were there, but not once did we think of a life-threatening pediatric cancer.

We don’t use doctors often, partially due to the fact that we’re pretty healthy and lack of health insurance, so we avoid the cost of office visits, prescriptions, etc. We usually treated discomforts at home, but this time unsuccessfully, so we went to a doctor.

By February, Amy had her tonsils and adenoids removed by a local ear, nose and throat specialist (ENT) and she recovered as any fresh, four-year-old would–ice cream, soup, and liquids for two weeks.

Again our lives settled down and we enjoyed our first spring and summer in central California.

Cancer Gets Closer

Amy’s dad spent more time in southern California with his mom, Grandma Mary, who was navigating her way through lung cancer treatment. By August 1999, I was asked to spend some time with her on hospice. It was my first experience so close to death. She was a wonderful woman and I learned many powerful things from her during the last three weeks of her life and after her death. Mary passed away on August 26, 1999.

Months of Misdiagnosis

By mid-September 1999, Amy’s frequency and degree of sore throats and colds worsened so one day I took her to the local urgent care facility. Strep throat had been through her school, so a throat culture was taken. We were sent home with a recommendation of Tylenol every four hours as needed for discomfort. Four days later, the strep results were negative.

For the next few weeks, we continued to treat her off and on for common cold/flu symptoms. She was only making it to school a few days a week, and when she was there, her teacher noticed a big change in Amy’s level of participation–she wasn’t participating.

I had noticed her becoming more and more pale over the weeks, but I figured it was because she had been inside so much. Her throat glands, both sides, were beginning to swell.

On the morning of October 9, the town’s big parade and celebration for Pioneer Day, Amy woke up with a 104 degree fever and shaking chills. Her throat had swollen double its size! I had never seen anyone look like that before–we rushed her to the urgent care.

The doctor presumed her strep test the month prior must have been a “false negative” so we began a 10-day course of Trimox. On the last day of taking the medication as directed, I called the doctor because she wasn’t getting any better–in fact, she was getting worse and I was worried! Sporadic fevers, no appetite, no desire to play, lethargic, and those damn swollen glands!

I decided at that point to take her back to the guy who removed her tonsils earlier in the year. He briefly examined Amy, told me the swollen glands didn’t bother him “one bit” and suggested she see an asthma/allergy specialist.

Watching Amy suffer through weeks on end of not feeling well really took its toll on us, especially her dad. From my perspective, he suppressed his grieving for his mom to focus on his daughter and began shifting anger and blame toward others.

I withdrew from school after failing another algebra test.

The Proof’s In the Blood

On Monday, November 1, 1999, after deciding Amy shouldn’t go to school, her dad took her back to the urgent care and demanded that something more be done to help her. She was getting even worse. A blood test was taken at the local hospital and she was sent home to wait for results.

At 3:00 p.m. we received a call from a man who identified himself as the pediatric hematology oncologist from Santa Barbara Cottage Hospital, suspecting Amy had leukemia. He told us to get there immediately; don’t wait until tomorrow. It was 2 hours away; he would wait for us.

Suddenly the room was spinning. I sat on the bed where I had received a much more pleasant phone call that morning. The whole picture began to come together–her tiredness, the paleness, lack of appetite. All of the pieces formed a very scary puzzle. Even the unexplained small bruises on her legs made sense now.

We threw things in an overnight bag, dropped Macey off at my uncle’s house, and hit the road toward Santa Barbara. When I was a kid we had this old, red medical encyclopedia-type book that I still had–I grabbed it off the bookshelf and brought it along.

Amy rested in the back seat and I read while her dad drove. I remember crying silently, whisper-reading about the fatality rates of leukemia. With an incredulous tone, he asked me loudly, “What year was that published?!”

I think it was from the mid-1960’s. I seem to think he threw it out the window somewhere along the 101 freeway! I’m amazed how my experience with Mary has prepared me to care for Amy in this situation.

Amy K. 12/6/94 – 11/7/07