First things first: Clio is coming HOME from the hospital today! (July 25, that is. Which may or may not be today when you read this.) This is a full week before the end of her 29-day induction chemo period. They’re letting us go home early because her ANC (Absolute neutrophil count, i.e. “good” white blood cells) is rising ahead of schedule. Go Clio’s bod!
We’ll go home with a big ole bag of meds, and a visiting nurse will come once a day to check Clio’s vitals. Next Wednesday, we’ll go back to the clinic and she’ll have a spinal tap (it’ll be her third) where they’ll test the spinal fluid for cancer (both times before this, it’s been negative) and get some preventative chemo in there. And then sometime shortly after that, they’ll do a repeat bone marrow biopsy.
Everyone’s expecting to find the cancer in full remission. Which sounds good. And is good! But there’s still a long road of treatment ahead.
We’re also waiting, nervously, on some cytogenetic test results that have been inconclusive. Part of classifying and figuring out the right treatment for leukemias is looking at the chromosomes inside the leukemia cells and figuring out what, exactly, mutated.
But the test results have been kind of funky, and there might be a bad mutation, but there might not. So, bottom line, our little girl’s bone marrow is being examined by pathologists here at Tufts Medical Center, over at Dana Farber, and now might be sent out to St. Jude’s. Leave it to Clio to confound the greatest medical minds in the country.
So there’s all that. But that’s not really what I wanted to write about.
What I wanted to write about is how strange it is to have gone, in less than four weeks, from total freak-out crisis mode (Oh my God, our daughter has cancer, and there are nurses and doctors and IV poles everywhere and how the hell did we get here?? Where did our life go?) to a point where we’ve gotten pretty accustomed to life in the hospital.
We know the drill (Plastic hat in the toilet whenever Clio goes to the bathroom? Check. Make sure she swabs her mouth with saline three times a day to prevent sores? Check. Mini can of Shasta Cola, anyone? Check!!) We know most of the nurses and attending doctors, and have our favorites. We’ve got a mini fridge stocked with snacks, and our room looks like we’ve lived here for years.
I’ve even sort of grown to *like* some of the perks of being right in downtown Boston. Once, I snuck out to meet a couple of friends for a picnic lunch on the Common. Another day, I walked over to the office of one of my favorite clients (OK, that was a little tough/strange, emotionally) and on the way home got some bean curd rolls in a Chinese bakery around the corner from the hospital. (We’re right in Chinatown).
And twice, thanks to help from the grandparents, Alastair have actually escaped from the hospital for a couple of hours to go on real dates. Once, to see a movie (Moonrise Kingdom. Three out of five stars.) and a Mexican restaurant (Two out of five stars) and the other time for a nice, aimless walk through the Public Garden and down Charles Street where we ended up in a little restaurant with a window seat where we got drinks and appetizers, then decided to stay. We people watched and talked about cytogenetics and laughed about our spacey waiter.
And I had on my red shoes. My most favoritest shoes I’ve ever owned — a splurge gift to myself on publication day of Double Time. (Pub day is weirdly anticlimactic. It is best taken with a pair of fabulous shoes. These are Miz Mooz, in case you’re wondering.)
In a matter of 2 weeks, I went from shuffling numbly around the hospital, red-eyed and faint-feeling, make-up-less and barely showered, to wearing a cute outfit and red shoes, giggling on a warm summer evening, walking hand and hand with my husband.
Now, going back and forth from hospital to home, as we’ve done over the past week and a half since Elsa has been home from her time with the grandparents, has been harder. Both for us (it’s tiring, and disorienting) and for Elsa.
The poor kid. She’s been bounced around like a pinball between parents and grandparents and daycamp and hospital visits. There has definitely been some jealousy, some acting out, some tears. But overall, she’s handling it with surprising grace. (And grace is not a word I typically associate with Elsa, who trips over the floor and falls off chairs with surprising frequency.) She’s been admirably able to express her emotions, too. The other day, when yet another package arrived for Clio, she said, “I feel jealous.” Right on, girl! I’d feel jealous, too!
Gosh, this is a long post. Sorry.
Anyway. Home we go, in a matter of hours. Some friends came over yesterday morning and we had a big ole cleaning party, and the place is sparkling. It felt great to get everything ready. My mom is coming down from Maine today, to help us manage the transition. It’s a little intimidating–all the medications to take, and things to watch for. And I’m sure being home all together again and trying to find a new rhythm will be disorienting in its own right. But I’ll take it.