My daughter, Rachel, has always been my active child. She has never been content to sit around doing nothing. Last summer, she was enrolled in ballet, swimming, Irish dance and tennis classes at the park district, mostly to save my sanity. Around the end of July, Rachel started complaining that her legs hurt after Irish dance class. Well, it was a new class, and it did require her to jump a lot, so I wrote that off as nothing. Then, she got a little summer cold with a cough. It never seemed to be bad enough to take her to the pediatrician. She started laying around the house a lot more, watching videos. She didn't want to go to the swimming pool. She didn't want to ride her bike or go to the park.
I took her temperature over and over. It was never a true fever - just elevated to 99.2 or 99.3 on and off. She looked a little pale to me. I thought that she might be anemic, and thought that she needed to eat more meat. I called the pediatrician's office on a Wednesday in August, and talked to the nurse. I told her that I wasn't sure if I should bring Rachel in. I explained that she just wasn't acting right, was pale, was a lot less active than normal and had a persistent cough. The nurse said, "In my experience, moms often have an extra sense that tells them when something is really wrong with their children. Bring her in. If it's nothing, you'll at least have peace of mind." She scheduled an appointment for Rachel with Dr. Perez at 11:00 that morning.
This was our first meeting with Dr. Perez. I am so happy that Fate sent us to see him, as he is the most experienced doctor in the practice. He examined Rachel, then told me that I needed to take her to the local hospital for a blood test and a urine test to determine what this was. He said it could be mono or a particularly bad virus, but we would have to see what the results said. He promised to call me in a few hours with the results.
I took Rachel to the hospital for her tests, then we went home. Around 1:30 that afternoon, the pediatrician's nurse called me. She asked me how soon my husband and I could get to the ped's office. They would not talk to me without Steve. That's when I knew the news would be bad. I told her we would be there at 2:00, called Steve at work, and loaded the kids in the car. When we were all at the office, the doctor took us into an exam room immediately, along with one of the other doctors in the practice. Dr. Perez would not say the word "leukemia", he didn't want to frighten the children. He told us that he had called the hematology department at Children's, and talked with a doctor there. He said that she most likely had a disease that started with the letter "L", and that great strides had been made in treating this disease in the last 20 years. He told us that 20 years ago, she would have had little or no chance, but the survival rate was now around 80%. We were told to take Rachel to Children's immediately, and to go in through the ER. Dr. Watson would be waiting for us there.
I was in shock as I drove home and packed a quick bag to go to the hospital. I cried as I drove in to the city. Rachel wrote me a little note that said, "It's OK, Mom. I love you." That made me cry even more (and yes, I did keep the note).
We saw 9 different doctors (residents, fellows, ER specialists and oncologists) that night in the ER. Rachel's Hgb was at 3.4. We were transferred to the PICU for her first blood transfusion. She would receive 5 units over the next 5 days. The next morning, the onc confirmed that a blast was found in her blood the night before. It was most likely leukemia. She had her first BMA, first LP and first dose of chemo (in the spinal fluid) that night. On Friday morning, August 19, 2005 we had our complete diagnosis. Rachel had pre-B cell ALL.
Sue mom to Rachel (7) dx pre-B ALL 8/18/05 and Serena (8) http://www.caringbridge.org/visit/rachelruth