On January 2nd, after Nico again started running fevers, and Jeff and I took him to our pediatrician to get his ears checked. We were supposed to go on a trip the following day, and we were worried about his ears on the plane. The doctor asked “is he always this pale when he’s sick?” I was struck by this question because a few days earlier my dad had mentioned that Nico looked incredibly pale. I had also noticed that he was on the whiter side, but since he had been sick I did not read too much into this. The doctor suggested that we check his hemoglobin (just a finger stick in the office) and asked me if Nico had any unusual rashes. I immediately started thinking about leukemia, but I told myself I was just being a paranoid first-time mom. A few moments later, the nurse’s aide popped her head into the exam room and announced that his hemoglobin was 5.5. Nico’s pediatrician looked surprised and said, “I was not expecting that. It’s probably inaccurate, sometimes finger sticks are. So why don’t you just stop at the lab and get a blood draw.” She was extremely apologetic and reassured us that this was probably not anything serious, just anemia from the recent flu infection. The thought I was having about leukemia became overwhelming and even though I was sure that I sounded completely neurotic, I asked if the labs that she was ordering would indicate if he had leukemia. She said that they would and that this had also crossed her mind, but again she reassured us that that was unlikely.
Jeff, Nico and I loaded into our car and headed to the outpatient lab at Primary Children’s Hospital. I started crying on the way. I had this horrible feeling, but I kept telling Jeff and myself that I was just needlessly worrying. When we got to the lab, outside sat a pale and bald little girl in gown, clinging to her IV pole with her parents who looked to be 500 years old. I started crying again. After the draw, I convinced myself that everything was fine and we all went about our day. The doctor stated that someone from her office would call us with the results, but by 4:00 pm, we had not heard anything and I called. When I said I was calling about Nico, the woman answering the phone stuttered and said, “the doctor is going to call you back today… she’s just waiting on one more result.” Jeff and I both knew this was a bad sign. Why did the receptionist know Nico? Why did she sound so clearly nervous? Why is the doctor calling us back herself? Around 6:00, the doctor called. She told us that it took a long time because she had a hematologist/oncologist check the slides of Nico’s blood himself. She said that Nico’s blood was highly suspicious for leukemia. She told us that the Emergency Room at Children’s Hospital was expecting us now and that Nico would be staying there. She started to cry at the end of the call. I want to emphasize here that I really believe that Nico's physician caught his leukemia much sooner than most other doctors would have and we are incredibly thankful to her.
So it began.
Nico was diagnosed with acute lymphoblastic leukemia. Apparently, if you have to have leukemia, this is a pretty good kind to get. Not because the cure is not complete hell, but because there is a cure. In the first two days, Nico went through blood draw after blood draw after blood draw. This was followed by blood transfusion after blood transfusion after blood transfusion. He actually looked a lot better after the last transfusion and we were both struck by just how pale and gaunt he had been that first night in the emergency room. But this tune up was to prepare him for the course that started today – spinal tap with an infusion of chemotherapy into his cerebrospinal fluid, bone marrow biopsy and a line placed for the chemotherapy that started tonight.