Vigilance

Hope is almost three-quarters of the way through Delayed Intensification. Today she got the last of eight doses of cytarabine (or ARA-C). She got six of the eight infusions at home, with visits from a home health nurse (which saves us from hours in clinic!). Except for a lousy appetite, she's handling it all well and has loads of energy (especially after getting tanked up on red blood today), but it's a stressful time: her port had to remain accessed for two 4-day stretches and her counts are in free fall.

The bandage over her port site kept peeling up, which is a potential infection risk. Her IV anti-nausea meds and chemo are stored in the refrigerator and need to be removed at specific times. She is barely eating, and dehydration is a major concern. Oh, and last week, I turned the ringer on my phone off one night and missed the alarm to give her the "rescue drug" she gets for the intrathecal methotrexate; I remembered the moment I woke up at 6 am in a panic.

And now she is neutropenic; she will probably continue to have virtually no operational white cells for the next 3-4 weeks. So I feel her forehead all day long, hoping for no fever that would send us to the hospital until her ANC rises. Celia was home sick from school for 3 days a couple of weeks ago, but her ANC was higher then. Yesterday, however, Quinn came down with a temperature. (Sigh.)

The constant vigilance is exhausting.

As the parent of a child with leukemia, you make virtually no decisions. You don't pick a doctor, or weigh your treatment options. When you picked an ER, you picked your treatment team and location whether you realized it or not. Acute leukemia is an emergency situation, so your child is admitted and there you stay. (Lucky for us, we went to Hopkins!) Most kids, including Hope, are put on a research protocol for their specific type of leukemia and risk stratum; you can refuse the study and go with a standard course of treatment, but that's a tough call in the midst of the emergency you are dealing with.

Once in treatment, there are few parental judgment calls: You must call the docs if her fever is over 100.4. You must follow the intricate drug regimen and enforce a series of food, activity, and situation prohibitions (deli meat, construction sites, anywhere crowded). But within this prescribed parental role, there is one main duty expected of you: vigilance.

Keep her away from sick people. Monitor her fluid intake - and output. Watch for signs of infection, and petechiae (little bruises from low platelet count) and anemia. Pay attention to her energy level, her gait, her appetite, her sleep patterns. Be on constant alert for rashes, bruises, bleeding, mouth sores, cold symptoms, signs of pain, etc.

It's reassuring to go to clinic (or have a nurse come to the house) so someone else can assess her, listen to our report, and determine that all is well. I am suspicious that this vigilance will never go away -- it's a familiar feeling from the earliest newborn days when you feel compelled to make sure your hours or days old infant is still breathing -- but eventually you chase that fear away because no one can live like that.

There has to be some trust, some throwing up of hands in surrender. I'm hopeful that we can learn to be vigilant without being obsessive.

Hope has had 14 lumbar punctures so far. I hate waiting for her to wake up from the anesthesia, although she usually pops up groggily and immediately asks for "chips" or "bread" or "bagel" or "bacon" -- depending upon her favorite food du jour. But I can't stand the beeping monitors in the PACU: heart monitors, pulse rate, respiratory rate, blood pressure. And the alarms when anything falls out of "normal range." Kids with Down syndrome tend to be bradycardic (slow heart rate) when they are sleeping, so there are often flashing numbers and blaring alarms going off while the nurses seem wholly unconcerned. It's unnerving. Last Friday, with no fanfare, our PACU nurse got up and changed all the parameters of the monitor so it wouldn't beep. It was such a relief. Hope was breathing, her heart was beating, she was doing fine. There was no need for extra vigilance. She woke up asking for pretzels.