Nico’s counts have been up and down – too high, within range, too high, within range, too high. It is worrisome, but we are told that a lot of kids spend the maintenance phase of chemo “chasing the neutrophil count.” We are all biological creatures with our own unique characteristics, and Nico’s bone marrow preferentially makes neutrophils, the type of white blood cell used to titrate the chemo doses. This means that when his neutrophil count is in the desired range, the rest of his blood work is in the a little too low range. He received his monthly chemo last week, and everything went as expected after almost two and a half years of chemotherapy.
Nico’s previously infected port, or contaminated blood culture as the case may be, threw a wrench into the month. Our current hospital is much more strict about follow-up, fever thresholds and blood samples requirements than our first. It is a long explanation, but the gist is that we spend a lot more time in the hospital here. Every little fever (anything over 100.4) means a wire brush shoved up both of Nico’s nostrils (the depth and trauma of this depends wholly on the nurse), a peripheral blood draw (hand, arm or both again depending on the nurse), a port access (which carries its own infection risk), a potential chest x-ray, and hours upon hours of sitting in the hospital, usually in a filthy ER.
Well, it is not fun, but it is the price of “being safe rather than sorry.” Except that I sometimes really wonder when the medical intervention itself becomes a risk factor. Case in point, Nico seemingly had some type of virus two weeks ago, and this resulted in a fever, and that resulted in all of the usual interventions mentioned above. One of the two blood cultures came back positive, and this meant days of hospitalization and then home with IV antibiotics. No school. No activity. No real baths. And never mind the needle and IV kit that dangled out of Nico’s chest for a week. Thankfully, none of the subsequent blood cultures were positive. Some of the doctors expressed real skepticism about whether Nico’s port was ever really infected. We were told that there are multiple points in which a sample can become contaminated and thus result in a false positive. But we cannot take the risk that there is bacteria in the port, instead we take the risks associated with hospitalization, IVs, and IV antibiotics. And there are real risks with that too.
Less than two weeks after the possible port infection, Nico starts complaining that his ear hurts. He was only a little warm, so I took him to a regular pediatrician just to check his ear. The pediatric NP said his ear was infected and that she would prescribe antibiotics. But while we were in the office his temperature rose to 100.9. Our old clinic’s protocol required that we call oncology if the temp was over 101, but our new clinic says 100.4. So the NP and I discuss the fact that I “have to call oncology” now. The oncology clinic, which is still open, tells us we have to go to the ER. The thing that is weighing on me is that the type of thermometer used by the pediatrician’s office is known to be very inaccurate. And even with this not-accurate thermometer, his temperature is on the border anyway. Also, we have a known source of the fever – an infected ear, which can be treated without going to the hospital. Nico and I both know what this low-grade fever is going to mean in the ER, and he begins to cry.
So we get to the ER, the nurse checks his vital signs, and Nico has no fever. I am kicking myself. I can see the ER doctors are questioning whether to intervene too; and in fact, the ER attending told me later that they called oncology to “double-check” whether we still had to run all the usual tests. Of course the big worry hanging over all of our heads is the previously positive blood culture, which might have been a false positive. But what if it was not a false positive? What if he did have an infection and we did not successfully treat it? Can we risk missing a bacteremia, which is potentially deadly? I cannot protect my son from these short-term traumas when a potentially long-term, even permanent, risk looms over us . . . no matter how small the chance.
Nico ends up with a badly bloodied nose from the nasal “swab” (think pipe cleaner shoved really far up your nose), a bruised hand and an IV in his chest (through his port). He had to be held down by the nurses. He screamed bloody murder for what seemed like a long time. He cried. I cried. The viral panel comes back with “the common cold,” and we leave five hours later.
The very next day I hear that a child in Nico’s school very likely has chicken pox. We were told several times that chicken pox, an airborne, very contagious virus, can be serious for kids on chemo. Exposure results in hospitalization and IV anti-viral therapy. So I pull Nico out of school, and notify the oncology clinic. I should note that Nico has been to school one week in the last six, and we pay a lot of money to attend this school. I hear back from our oncology fellow that Nico should be fine attending school as long as the student with the blisters is not in attendance.
This is where I fall between a rock and a hard place. I understand both sides. I understand the advice given to us by oncology to live as normally as possible. I understand that allowing Nico to live as normally as possible runs risks. I understand that we cannot prevent viral exposure for 3.5 years. But on the other hand, the type of monitoring required for fevers (even low-grade) is traumatic for my son. Nico has endured seven needle sticks in the last two weeks. This is just a drop in the bucket for the last two and a half years, and he is only 4-years old. How do I reconcile this? How do I willingly subject my son to viruses when I know that the inevitable fever that results will require painful, invasive, time-consuming intervention, and most importantly intervention that poses its own risks? I am not sure how we proceed now. It is definitely a discussion that we have to have with our oncologist because I find this untenable.
When I cried to the ER physician, a woman that I know now, Nico quietly turned to me and kissed my cheek. We do try to treat his treatment as just part of life, but there is a real suffering that takes place and it would be disingenuous to pretend that we are not weary.
P.S. The photo is Nico and Daniel. Daniel is a pre-med student that hopes to be an oncologist one day and volunteers at our clinic. He was teaching the kids that day how to play chess. Daniel is from LA and was the only person that really seemed to appreciate the tee-shirt that Nico wore to clinic that day. It is Nico's favorite shirt and it reads: taco cat spelled backwards is taco cat.