We went OT about 10 days ago (hooray!), but I remember dx like it was yesterday. In late summer 2002, whenever Jack got a cold or other virus, he would complain that his left leg hurt. If I gave him Advil, it would go away. I took him to the doctor every time, and she said it was just his "hot spot" - some people get a sore neck with a virus, etc. The third or fourth time that this happened, on November 10, 2002, I took him back to the pediatrician, and this time he was refusing to walk on the leg. She sent us for bloodwork and x-rays. By the next morning he was fine, and we were getting ready to go to the mall, when the phone rang. I knew I was in trouble when it was the doctor and not the nurse on the line. Anyway, she said that his x-ray was fine, but that the blood work was not, and that "we think he has a malignancy like leukemia." I can honestly say that it had never occurred to me that he might have cancer. I sat down on the kitchen floor and cried while Jack was skipping around the house to a Wiggles song that was on TV. I remember that he was wearing a blue and cream striped turtleneck and his diaper. I will never forget when he stopped dancing, came over to me, and cradled my face in his little hands and said "why are you sad, Mommy?"
Well . . . we took him to the hospital and had the bone marrow done. They came in that night and said that he did not have leukemia, and that they did not know why his counts were all so low. He remained in-patient for a week while they did bone scans, MRI's, viral tests, etc., and finally discharged us with no diagnosis and Jack feeling fine. We made an appointment about a week later at the University of Michigan for another bone marrow. It was done by the chief of pediatric hem-onc, and he came in afterwards and also told us that Jack did not have leukemia - they felt that it was a reactive, as opposed to a malignant, process. We were elated, relieved, confused, etc., and Jack still felt fine. It was a Friday. We took our Peanut home, and in the middle of the night, he started getting really sick - fever, neck and leg pain, lethargy, etc. We called the Michigan doc at home on Saturday night, and he told us that they had just gotten the flo-cytometry back and that he did have ALL - but because he wasn't sick, he thought he'd let us have the weekend and call us on Monday. Anyway, we were admitted that night at about 1:00 a.m. and started treatment the next day.
That's our story. I don't think that I'll ever forget a minute of it.
Karen, mom to Jack (5), dx pre-B ALL 11/02, CCG 1991C, OT 01/27/06, and to Ben (2)