Monday morning, Reese woke up early, crying. She was running a high fever and she complained that her “knees” hurt and she couldn’t walk. I carried her downstairs and my husband and I were both concerned. The strangeness of this “illness” wasn’t an isolated incident.
I can’t say that December 11, 2017 caught me off guard. Reese was a healthy baby and a healthy toddler. We had the most incredible summer before she was diagnosed, full of energy and late nights, my girls didn’t even have a sniffle. But then preschool started and I can tell you that she was not a healthy preschooler, I saw this coming about three months before we were hit. Reese had many strange illnesses. Alone, none of them were too concerning. But put together, I had been worried. I had her at the doctor constantly, searching for answers. Reese is an identical twin, and while I know they say not to compare your children, I couldn’t help it when it came to their health. Reese got the same “colds” as Quinn, but hers lasted longer, and often turned into a secondary infection. She had recurring ear infections. She developed bronchitis and was prescribed a nebulizer. She had huge cold sores that wouldn’t heal. Her eyes looked different, I couldn’t really explain it, but complained that the pupils were bigger. She had little ulcers all over her mouth, that made it hard for her to eat so she didn’t eat as much. And one day her ear drum just BURST, out of nowhere. She also had these strange transient fevers. They would linger around 99.5-100… not high enough to be considered a real fever, but sometimes there were no other symptoms. After many trips to the doctor I stopped believing in viruses and asked if there was someone I could talk to about her immune system. My doctor told me to see an “immunologist”. I made the appointment and the soonest was almost a month away. (This appointment was scheduled for December 14.) At the time, I didn’t even really know how the immune system worked, but I knew there was something wrong with my child’s. (I wish I had known to ask for a simple CBC, a blood test- that would tell the whole story in 20 minutes. Why don’t they order these for chronically ill children?? This is a question I discussed many times with my nurses.)
So here I was, standing in the kitchen looking at my sick child. I wasn’t taking her back to her pediatrician this time. I was going to drive her to the emergency room. I didn’t want to put her through an ER visit, but I needed answers. Together, we drove to Evanston. This is when she had her first experience with an IV and blood tests were drawn. A couple hours later, they sent us home, telling me that she had a “virus in her knees”. I got home and she drank hot chocolate with her sisters, and then cuddled with them on the couch. I called my pediatrician. I spoke with a nurse and I relayed the ER doctor’s diagnosis. Then I asked, “Have you ever heard of a virus in a child’s knees?” No was the response. She then sent me straight to a pediatric orthopaedic doctor. She was thinking perhaps there was a serious problem with her joints, that might need attention right away. This doctor examined Reese and then left the room for a long time.
During this time, Reese was sitting on my lap facing me. Her arms and legs were around me and her head on my chest. This is how she laid on me years before. We both dozed off. (This is very strange, I do not doze off.) It was surreal, I dreamed that she was a baby, a newborn. Our breathing was one, I felt her heartbeat. I knew. I just knew. I didn’t know what I knew, but I knew.
Then the doctor walked back in. “I am sorry to tell you this, but your daughter has leukemia.”
I found out that this doctor had pulled up her labs from Evanston and seen the CBC differential. It is assumed that the ER did not wait for this to result, or they wouldn’t have sent her home with ” a virus in her knees”. When you do a CBC on a child with leukemia, there is really no misreading the results.
The hours after this are a blur. I carried her to the car, sat in rush hour for an hour and a half to get to Lurie. I talked to my husband, who had just landed in LA for work, and he turned around and got on a flight back to Chicago.
But what happens when you have leukemia?