No bumps!

Hope hates potholes, speed bumps, and anything that jostles the car while we're driving. "No bumps!" she yells from the backseat. Unfortunately for her, we live in a city where potholes are both a major problem and not even breaking the top ten list of problems being addressed. So she yells, "No bumps!" and I call back, "Sorry, kid!"

This week we hit a couple of bumps in Hope's treatment; nothing major, but still bumps. But this time she is the one taking it in stride, while the rest of us feel like crying out, "No bumps!"

After the last chemo hold, Hope's numbers bounced up as expected and we restarted at the same dosages after a week. Ten days later, we returned to clinic today to see where she stood -- and she's neutropenic again. So it's another week-long hold to give her marrow time to recover. And this time when we restart it will be at 50% of her dosages, with incremental increases every two weeks until her ANC stays in the sweet spot of 500-1500. In the meantime, we are cancelling plans and hunkering down for the week.

The other bump is less physically significant, but maybe more emotionally consequential. Hope's hair is falling out again. It's probably because her chemo dosage was just a little too high and her counts plummeted. We knew this could happen during maintenance, but fair warning hasn't made it any easier. My heart sank when I was unbuckling her on Monday afternoon and saw her car seat covered in fine hairs. It's such a marker of illness, of difference, of fear and wrongness. A reminder that she is still in this battle, that the poisons I deliver each night are still doing their damage, and that even though we plan for the future and live a mostly normal life, the next ten months are far from what should be normal.

There's no picture for now. It's in that awkward, rapidly thinning, old-man pattern baldness phase. Depending upon how the next few days of shedding goes, we may have to shave the rest.

It will grow back. It's no big deal. It feels silly to care about it when so much is going so well for her. We know of so many kids who are dealing with real, lasting damage from the intense treatment. But we're going to feel a little sad about it, curse the bumps, and then pull out the sun hats and move on.

Taking a breather

Like most families, our day to day life feels like a race. During the school year, every Sunday night I go to bed thinking about the mad spr)int from Monday to Friday. Kids up, breakfasts in, lunches packed, out the door. Preschool and the separation dance, huddling in the parent room across the hall from her classroom trying to get through some work. therapy appointments, pick up kids, homework, dinner, play, the occasional bath, bed. Throw in grocery store, Barney, soccer practice, sweeping up cracker crumbs, LAUNDRY, and the dishwasher - and that pretty much sums up life around here.

Summer hasn't been much a respite. Camp schedules and therapy appointments, plus trying to keep everyone fed and active. And we've had some big events too.

Mare and Cait's wedding! (See more pics here.)

The Down syndrome conference in Phoenix....

... with a few days tacked on for visiting Sedona, the Grand Canyon, and more.

Quinn's 9 3/4 Birthday Party

He got skipped last October while Hope finished frontline treatment so we had a blowout backyard Harry Potter party, complete with a Quidditch pitch and a Golden Snitch cake made by Celia and Camille. He said it was his "best birthday party ever"! (What more could a mom want?)

I've been thinking about how last year all this stuff just ceased to exist. For months and months my calendar was just clinic appointments, Peapod deliveries, and a calendar of who was driving my kids to/from school. There was so little of life in my days. And yet... there was something in that surrender of regular life that was almost liberating. Of course, awful, but not a race. Moments did not fly by without my notice. Every day was a long series of watching, noticing, feeling.

It's odd how the everyday details of kids and home and work are all-consuming -  and then in an instant they disappeared into the background and seemed in many ways meaningless. And yet -I longed to return to those details. And yet - I sometimes now find myself longing for the perspective that put them in their proper place.

*******

Yesterday's clinic visit has granted us the opportunity for a little perspective, I guess.

First, I met a family whose daughter with Down syndrome has a brand new ALL diagnosis. It takes me out at the knees: the raw new pain, the wild fear, the utter bewilderment. It's impossible not to be overtaken by my own wave of memories while drowning in sorrow for the horrific road they are embarking on. We encounter new patients all the time on clinic, but it's different somehow when it's a member of our Down syndrome tribe. We'll try to walk with them on the journey.

Secondly, we found out that Hope is neutropenic - for the first time since she started maintenance in November. Her ANC is just 310, the consequence of either a virus or too much daily chemo. The result is a hold on her oral chemo for a week -- though she did have her 5th to last lumbar puncture with chemo today and her vincristine infusion and will proceed with a 5-day course of prednisone. I hate the idea of holding chemo; it feels dangerous and insecure -- though we are assured that it's common and to be expected. But it's also a return to extreme caution: no camp or birthday parties, no grocery shopping, obsessive hand sanitizing, and dirty looks at strangers who sneeze as we pass them on the sidewalk. Hope seems to feel fine despite it all, though the steroids are kicking in after her first couple of doses. She hates being told she can't go into the Giant to shop for her "big chips" and screamed for the 20 minutes it took Celia to run in and get the few things we needed this afternoon.

I guess we'll get that chance to watch and notice and feel -- and long for the regular life details going on beyond our four walls -- but just for a week this time around. Everything old is new again.