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.

The bone marrow mysteries

September 5 was day 29 of Delayed Intensification, but as I noted in my last post, Hope didn't make counts; her ANC was 240 and needed to be 750 to begin the second month of this phase. We returned Wednesday, September 10th,  for a second try - still no go. 640. And again, Friday the 12th -- third time's a charm, right? -- certain that she would make it and we'd be off to the races. But... it was 730. Certain we'd make it this morning, the 15th, we found it stalled out at 730. Her clinic nurse Lisa said, "Bone marrow isn't an exact science."

It's a confounding idea. On the one hand, we get copies of her labs every visit with long lists of numbers - and it sure looks like an exact science. The percentage of neutrophils, eosinophils and basophils, grams of hemoglobin per deciliter, and counts of platelets and white blood cells per cubic millimeter, creatinine and bilirubin, glucose and aspartate aminotransferase. It's a flurry of numbers and we have gradually learned which ones are most meaningful, which drugs can elevate which levels, and when the highlighting of a number as "abnormal" (light gray) or "panic" (dark gray) is something to be concerned about -- and when it isn't.

But the numbers don't always behave as you might expect them to. They trend correctly, but day to day something that should be going down because of chemo might suddenly blip up, or vice versa. We are told to expect it to take 7-10 days for her counts to hit bottom after chemo, but on day 14 she's still heading down. Or, with another drug, her counts bottom out in 2 days and then start to rebound. And it all seems fine - no one seems concerned. We ask again and again, "But is it OK that...?" Yes, it's fine.

We've learned so much about this world of leukemia, but there's so much that is still a mystery.

School begins, and the guy at the pizza place

It’s been a busy couple of weeks, getting back into the school routine: earlier bedtimes, packing lunches, scrambling to get out the door, dabbling in some homework.

Hope is slowly recovering from the steroids. I’m making the transition from happily supplying whatever food she agrees to eat (from $6/bag pretzel chips – I can’t imagine our pretzel spending in the last month – to a daily McDonald’s run for “chicken and fries”) to insisting upon some healthier options interspersed between the salty snack food that has become the backbone of her diet. And I’ve put my foot down about the McDonald’s. Celia’s observation from earlier in the summer is haunting me: “Isn’t it weird that we never used to eat McDonald’s food because it isn’t healthy, and then one of us got cancer and we go here all the time?” Uh, yes, it’s weird.

It’s also weird that I’ve gone from being a person who refused to buy paper towels, opting for piles of kitchen rags and washcloths, and who insisted upon hand-washing plastic containers rather than putting plastics in the hot dishwasher, to being a person who is all about disposable everything and sanitizing everything in the dishwasher. The landfill and unseen carcinogens be damned. Yes, weird.

All that aside, despite an apparently insignificant rash, Hope is shedding the steroid side effects – though she is trying hard to cling to the snack food and challenging mood. (We are getting a lot of “NO, RIGHT NOW!”) But her counts are still too low to move on to the next round of chemo. We tried on Friday and will return on Wednesday for another go at it.

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Taking Hope out in public is strange. In some ways, we are used to being noticed. She is crazy cute, of course ; ) Additionally, children with Down syndrome seem to elicit double-takes with some regularity. It’s fine. It doesn’t bother me anymore. In fact, I have developed the probably annoying tendency to take any brave sustained second look as an invitation to introduce Hope and engage the innocent bystander as long as they are willing.

But since she’s lost her hair, it’s different. You don’t see many kids with cancer out and about. There’s a sadness that goes along with the second look; and eyes are generally diverted as quickly as possible. It’s understandable. No one wants to pry. No one wants to ask a question that has an answer they don’t want to hear; it just might make a casual encounter monumentally uncomfortable. What if the news isn’t good? What if she’s terminal? What if it’s inoperable? What if… I sympathize because I have felt the same barrier in clinic and on the inpatient side. But the consequence of this completely reasonable situation is the feeling that you suck the air out of every room you enter. Maybe it’s another reason that being in the hospital starts to feel so comforting.

Today, however, we had a different experience. A stranger came up to us in a pizza place. We were picking up Hope’s craving of the week, her fourth cheese pizza in as many days. (She pretty much only eats the crust.) As the man ahead of us in line paid and turned to leave with his stack of pizzas, he did the requisite double-take, then turned to me and asked, “How is she doing?” I looked at him closely, assuming at first that he must be someone I knew. I guess I looked flustered because he then explained that his son had gone through chemo treatments for retinoblastoma when he was 7 months old – he is five now and doing great. The air rushed into the room and I gave him a few brief bullet points – diagnosis, one month left of intense chemo, doing pretty well – and he left.

I instantly thought of an interaction on another recent pizza run. Hope and I had run into an acquaintance. It was probably the first time he had seen Hope since her diagnosis, and when he approached us, his face took on a strange contorted look of concern. He said he was “so sorry to hear about what you're dealing with.” And then without missing a beat: “But besides that, how’s everything going?”

“Besides that”? So, maybe I was having a bad day, a little raw or hyper-sensitive, but “besides that”?!?

There is no “besides that” – there is just “that.” How we are managing work around cancer, how the kids are trying to have their childhoods around cancer, how we are desperately hunting for small windows of family fun and connection around cancer.

My mom often quotes her Nanna as saying, “Every baby brings their own love.” There isn’t a finite amount of love to be distributed amongst people; love is born in relationship. I would add that each human also brings joy and wonder and pain and loss in somewhat equal measure into the world. You don’t get to share in the joy without taking on some of the pain, that’s what it means to be in relationship.

The stranger in the pizza place took a tremendous risk – and because he has been where we are, he did so knowingly. He invited both the joy and the pain – hoping I would say she was doing great, but knowing I might say it was relapse, that I might share that her prognosis was poor, that I might dissolve into a puddle while he stood there holding his pizza. He knew it, and he did it anyway. And with that simple question, he took on a piece of our burden. Hope’s cancer was, for that moment, not the bald elephant in the room – the thing that cannot be overlooked, but is so frightening that it cannot be acknowledged – it was instead the pain and sorrow inextricably intertwined with the joy and wonder.