From Holly Heer, Alex's mom:
Alex was a bright, vivacious four-year old. He loved all things physical and was fascinated by backhoes, bikes and bears. He started to play soccer in the fall of 2000. One day he took a ball square in the middle of his back. The hit turned into a soccer-ball sized bruise. He started to come home from day care covered in bruises—one day you could see the finger marks on his arms from where someone had twisted his arm. We just thought that his friends had gotten more physical and we earnestly discussed with his teachers trying to get them to tone it down. He started to seem so pale and clingy—but I thought he was just tired. Then one night, the week after Thanksgiving, he climbed in to bed with me and just wanted to be held. He had a low fever (low enough that he could still go to daycare) but had developed a purple rash over his entire body (so no daycare without clearing the rash with a doctor before he could return). His breathing was shallow and raspy. He didn’t really seem sick, but something was very wrong.
After spending less than five minutes with the pediatrician, Alex was on his way to Children’s Hospital. The pediatrician had called ahead, and Alex was swept into a private room with infectious disease protocols posted on the door, along with a handful of masks. For the first couple of hours, no one would discuss with us what the prognosis might be because they weren’t sure and they didn’t want to scare us (at which they failed spectacularly). Finally, Bob the nurse took Alex for a ride on his bed to look at the fishes in the big tank in the lobby while the doctors explained to us that Alex had leukemia and that the purple rash was actually petechiae, a condition caused by a low platelet count. But the doctors wouldn’t know what kind of leukemia Alex had until after they did a bone marrow aspiration, which would take a day or two to schedule. In the meantime, the doctors wouldn’t talk to us about leukemia in general because there are two kinds and they didn’t want to give us false hope if he had the bad kind.
Alex was an amazing trooper that first day. But on the second day, after he had pulled his IV out for a second time, he snapped. The stoic, cooperative child of the first day was replaced with a scared, angry out of control little boy (who resurfaced regularly the first year of chemo). He refused to let anyone put his IV back in (which he needed for a transfusion so he could have surgery the next morning). There was screaming, tears (his, mine, the nurse’s), begging, and bargaining. One life-sized-chocolate-lab stuffed animal later, Alex was ready to have his port implanted in his chest and start his multi-year journey with chemotherapy.
Alex was diagnosed with acute lymphoblastic leukemia (“ALL”). As our pediatrician said to us, I bet yesterday you would never have thought that hearing your son has ALL would be something to be thankful for. Children in Alex’s demographic suffering from ALL, even 15 years ago, had over a 90% survival rate. Children with acute myeloid leukemia (“AML”) have (and had) a much lower survival rate.
Alex ended up being a slow early responder. So he had a slightly longer and more stringent course of chemo than many other ALL patients. He had over three years of chemo (with the first year being by far the most difficult), followed by another year plus of monthly transfusions of IVIG (one of his extra chemo treatments destroyed his immune system and his body stopped being able to fight infections). It seemed like Alex had a little of everything on his journey-- like a week in solitary confinement after being diagnosed with shingles (still thankful for Legos and Nerf guns), pneumonia, lupus-like skin lesions from taking Claritin, and too many days to count where his little body was just too worn out to make it through a full day at school without an unscheduled nap. He had to drop out of daycare and he missed a lot of kindergarten, but had a wonderful tutor from the Columbus City Schools, a loving au pair from Poland and an amazing series of teachers at Indianola Informal K8 who helped him learn and thrive.
Alex survived ALL because of the help of groups like LLS, who fund and encourage rigorous medical trials targeting blood diseases (and who gave us prescription support when the chemo was at its worst) as well as the extensive network of school, family and friends who helped him through the emotional and physical trials of being a childhood cancer fighter and survivor. I wrote this for Alex, because one of the best things about being diagnosed with cancer when you are four is that there is so much of it you don’t remember. Another blessing I never would have thought I would be thankful for.