Evan MacNeil's Personal Profile
July 2007: Bruises on Evan's shins
Evan's journey with aplastic anemia began in October 2007, the month of his 10th birthday. Really, looking back, it began months earlier when Evan started coming home from school with giant bruises on his shins in late spring. I remember his dad and I asking him every day, it seemed, how he got such a bruise and what always seemed strange to us was that he could never remember. We started to worry if Evan was being bullied at school and was too afraid to say anything. Evan convinced us that there was no foul play involved so we just chalked the bruises up to typical nine-year-old boy's rambunctiousness and some clumsiness.
Summer came along and school was out. The crazy recess activities were on hiatus and so were the bruises. A typical summer has our kids swimming in our backyard pool with friends and just hanging out and having fun. Evan had always enjoyed swimming and we always referred to him as our little fish. He was a strong swimmer for his age and was always eager to show us his new achievements in the water. This summer it disappointed us to find Evan sitting on the lounge chair beside the pool more often than we found him in the pool. There were times when we threatened Evan to take away his Xbox if he didn't start using the pool. He would explain that he still liked swimming but he was just feeling "lazy". There seemed to be nothing wrong with Evan, so we just blamed the laziness on pre-teen complacency.
Come September, Evan started having what I believed to be hay fever symptoms. Like me, he was stuffed up and sneezing day after day. I put him on the same OTC allergy medication that I was taking and this seemed to help. School started and Evan was excited about his grade five teacher and seeing his friends again. But back to school meant back to bruising and he would come home with some whoppers. Again, Evan would just write it off as clumsiness. But in early October, another issue of concern materialized - petechiae. I still very clearly remember the day when Evan came home with a pinpoint rash in a line around the front of his neck. As a nurse, I knew this wasn't normal. Evan described how his friend playfully grabbed his neck at school and my heart sunk to my stomach. Just like someone was flipping the pages of a book backwards, quickly, I started having rapid flashbacks to all the bruises, all the days too tired (lazy) to swim, the endless allergy-like symptoms, the inability (lack of interest) to keep up with his sister and me while walking to school in the morning--and it hit me like a ton of bricks. There's something really wrong here. I didn't know what was going on but thanks to Google, who would become my very good friend over the next many months, I knew Evan's platelets were low. That night, I performed a pinch test on both of my kids. I tweaked each of them on their side and kissed them good night. They thought I was nuts even though I did explain why I was doing it. I returned an hour later to check on my sleeping babies. Emily's side was clear, Evan had a gigantic bruise where I had pinched him. I felt weak.
A trip to our ER the following day confirmed our fears: all of Evan's blood counts were dangerously low. The pediatrician on call came in and examined Evan and then declared that she believed Evan had idiopathic thrombocytopenic purpura. I remember asking her how ITP could explain his hemoglobin of 82. She explained that the anemia was due to the blood loss from all the bruising. She had me very captivated, hanging on to her every word, up to that point. Everything she had to say after that became a distant hum while I planned our next move. We would have to get Evan evaluated outside of our city if we were to get this figured out quickly.
The following day we took Evan to our own pediatrician's office. He reviewed the blood work and calmly told us we didn't have to hit the panic button yet. I told him it was too late for that. I gave him the name and number of a pediatric hematologist at McMaster Children's Hospital, 50 minutes away, in Hamilton, Ontario. He obliged and we headed home. That afternoon, I called the hematology clinic at McMaster and left a message something to the effect of being a very worried mother and to my surprise, the secretary called an hour later with an appointment in two days. Evan had blood work done daily after the initial ER visit that revealed all three cell lines dropping further. The appointment at McMaster couldn't come soon enough. This would be day five without sleep, worry was eating me alive.