Occasionally I ask myself “what if?” What if we had gotten on that flight to Bermuda? When Nico’s bone marrow was aspirated on January 4th, it was 100% blast (cancer) cells. That same day, his blood work showed that 80% of the white blood cells were actually blast cells, up from 60% the day before. We were scheduled to be in Bermuda that day. Bermuda is a three-hour plane ride to the nearest children’s hospital or pediatric oncologist. What if the doctor had let us leave that day with just our prescription for numbing eardrops?
Sometimes I am asked what led up to his diagnosis. Nico was a fat baby, 95th percentile for weight. Our pediatricians in Virginia (where he was born) always said that it did not matter what the number was as long as he stayed on the same trajectory of the growth curve. Shortly after Nico turned one, he started to fall off of this trajectory. Around this time, we moved to Salt Lake City from Virginia and changed pediatricians. When I mentioned the change in his body to his new pediatrician, he replied that it was common for kids to thin out when they started to walk. I felt that the doctor was disengaged. Nico had fallen from 95th percentile to 15th in a matter of months. So I changed pediatricians. The second pediatrician said the same thing as the first, but I pushed and got a consult with a registered dietician. The dietician stated that Nico looked great, reviewed his food diary and had no concerns. My anxieties were relieved for a bit.
Shortly after Nico turned 18-months, I became concerned about his speech. He was not really trying to speak. Looking back, I just knew something was wrong. I called the state’s early intervention program and a case manager, pediatric nurse and social worker came to our home to evaluate Nico. They assured me that he was normal, but he did have a very slight speech delay. He qualified for speech therapy through the state program. More importantly though, was that the visiting nurse recommended a new pediatrician after I mentioned my dissatisfaction with our local pediatricians. The recommended doctor had a very busy schedule, but according to this nurse, it was worth the wait. It took six months to actually see our new doctor, but we were allowed to see her partners in the interim. I remember the first time she came into the exam room. She reviewed Nico’s previous medical records, started to say something and then stopped herself and asked, “Well first, do you have any concerns?” I said that his weight concerned me. She nodded knowingly and said it was a concern. Weight loss is a symptom of leukemia (among a million other things). Nico was around the age of two by this time. He had just started preschool and had been fighting an illness. The doctor suggested that his recent illness may have reduced his appetite, but we needed to return for a weight check. When we returned a month later, we did not see this pediatrician. We saw someone else who again thought that Nico looked great and was just a small child.
Then came the parade of illnesses. Once Nico started school, it was fever after fever after fever. I came to learn that an unexplained fever lasting more than five days is sometimes delved into via blood work. But every time we visited the pediatrician’s office, each doctor that saw us (usually a different doctor at each visit) would find a possible cause for the fever – always the ears. The one exception was when Nico tested positive for the flu. If he had not tested positive, the doctor on that visit had warned us that we would have to go to Primary Children’s for lab work. If he had not tested positive for the flu, we probably would have been diagnosed that day.
At one point, I received a friendly lecture from one of the treating practitioners (again, not our primary pediatrician) that fevers are normal in kids and that I did not need to worry about them if my son was acting otherwise normal. So I tried to relax. But why did every single cold result in a fever? Why did Nico end up on antibiotics literally two weeks out of every month for the last six? At one point, shortly before diagnosis, I remember saying to the doctor (again, not our primary pediatrician) that I was becoming very concerned that there was something wrong with Nico’s immune system. I also remember pointing out Nico’s swollen lymph nodes that were visible from across the room. That doctor reassured me that kids get sick their first year in school (true) and that after ear infections, lymph nodes sometimes form calcifications that cause them to stay enlarged.
I do not want it to seem like I am faulting these doctors. The fact is that childhood leukemia is rare. The odds that Nico had leukemia were very low. Meanwhile, Nico gets thinner, paler and sicklier. January 2nd, 2013, we are again at the pediatrician, but this time we see our primary doctor. We are about to leave when she decided to check his hemoglobin (red blood cells) because she notices that he is pale. A normal hemoglobin value for a child is 11-13. When the nurse calls into the exam room that Nico’s hemoglobin is 5, the doctor looks shocked. She says that she wasn’t expecting that, and wants us to go to Primary Children’s Hospital for more lab work. She reassures us that it could be an error. My mind starts racing. I cannot control my thoughts. I want to ask her, but I am afraid. Finally I cannot contain it anymore and I tell her that I realize that I sound crazy but will the tests that she ordered indicate whether he has leukemia or not. She tells me that the tests would show that.
I cried the entire time we are driving to hospital for the blood test. Outside the outpatient laboratory sits a young, bald girl. She is holding an IV pole that is pumping chemo into her sickly little body. Her parents are on either side, looking exhausted, weathered and old. I could not stop crying. Nico did very well with his first blood draw and when we leave the young girl has gone. I convince myself that I am working myself up for nothing. The wait begins. Someone from the office is supposed to call me with results. Hours and hours go by and no one calls. I called the very busy and large office and the receptionist knows Nico and me, and tells me that the doctor will call after she gets one more result back.
I am running errands, preparing for the trip that never happens, and I get a call from Jeff. He is crying and says that Nico’s blood work is suspicious for leukemia. We have to go back to Primary Children’s E.R., they are expecting us.
Again, I cry the whole way, but it is only “suspicious” and maybe it is not cancer. I realize that everyone knows exactly what it is when we arrive at the ER and as the triage nurse leads us to an exam room, another nurse yells “You can’t put an onc kid in that room!” The parade of doctors began and no one would tell us the diagnosis until finally an oncology fellow showed up in the ER (he stayed at the hospital long past quitting time in anticipation of our arrival). He told us plainly and kindly and we were incredibly grateful for his honesty and sincerity.
It is incredibly painful to remember that first sleepless night. The overwhelming thought was that I would put this baby through hell, torture him with needles, lumbar punctures and chemo for years and years, and in the end there would be no guarantee that he would make it. I did not see how I could live with the uncertainty and fear. It was unfathomable. I wanted out of this new world. It hurt to look at him knowing what he would endure. Every look at that face was a reminder of what I could lose. Everything hurt. But I was trapped in this hell. There was no way out and I had to be “strong” to support my little boy. There was choice in this. We all had to step forward and endure.
In the beginning, after the shock wears off a little, you try so hard to control the process. You ask why. You blame yourself. You wonder if you somehow caused it or could have prevented it. You question your doctor. You question the course of treatment. You become superstitious. You look into alternative therapy. You desperately search for some edge that you can give your child, some way to boost the percentages in his favor. You just want to control something in your completely out of control life. But you control nothing. At some point I accepted this. It does not mean that you do not still watch, question and advocate. But I have to at least try to live more like my son – in the moment – and accept that ultimately I cannot eliminate risk from his life.
The question that I asked about whether they would check my child for leukemia haunted me later. I wondered if I somehow knew and I worried that this knowing was a bad omen. I wondered if my fears were a foreshadowing. The pediatrician asked me about this later as well – why did I ask this? I discussed this with my own doctor. She reminded me that I am a nurse and my previous training included leukemia. I did not ask this out of thin air. In fact, I had been questioning for months whether something more serious was going on. And Nico had every classic symptom of acute leukemia. From what I was told upon admission at diagnosis though, Nico’s primary doctor caught his leukemia earlier than most do. I am positive that the previous physicians that we saw would not have caught it and we would have been in Bermuda when the leukemia completely took over. What if Nico had not had a speech delay?
2013 seemed like a million years. Everything in our lives has changed. But we have endured. And when I ask what if, I think we were actually pretty lucky in 2013! I do hope and long for the day when this day, January 2nd, comes and goes without any significance in our lives. One day . . .
Happy New Year.