Better and worse

We visited the hemodialysis unit at the hospital yesterday. It was both better and worse than I expected. I mean, it wasn’t horrific, not some miserable torture chamber with sickly sad faces peering out from under the blankets. But it was very subdued, much more so than the lively cancer areas. I know that sounds weird, but there is such a stark juxtaposition of good and bad, life and death, in the cancer clinic and on the inpatient floor. Everything is tinged by the possibility that all these lively seemingly happy children might die, but still, they squeeze an awful lot of living into the moments they have.

In the dialysis unit, there’s a quiet resignation, a more depressed atmosphere surrounding everything. It seems like everyone is plodding along, just getting by, doing the bare minimum of living. It’s a rather unpleasant place to spend the vast majority of our time for the next two years: no windows, one open corner with four or five kids asleep in their reclining chairs, no movement, no parents even. Really, not one child there had anyone with them, an absence you never see in the clinic.

But some things were easier to accept than I had imagined, like the skin graft Austin will get in his thigh, shown to us by a sweet (if tiny) fourteen year old patient. The surgeon basically connects a vein and an artery under the skin for better blood flow in and out, which is what gets hooked up to the machine. It takes about three weeks to heal so Austin would first have a catheter in his neck, similar to one he had after his December surgery which we never needed to use and eventually removed. But once the graft is healed, it’s expected to last a few years, doesn’t need any care at home and can get wet, three things that fall squarely in the “Plus” category.

We asked gazillions of questions, some of which the doctor said we’d deal with in another year-and-a-half (like all my transplant and donor questions). Austin can’t even have his name on “The List” until he’s actually eligible for transplant, which won’t be until April 2012 (two years from the end of treatment). This is because kids, especially those as young as he is, are moved to the top of the list quickly so a kidney could become available at any moment and he’d have to be able to accept it. Of course, that only comes into play if he needs a kidney off the list and not from a designated donor. A few months before he’s cleared for transplant, they’ll start the series of tests and screenings on potential donors, usually starting with five or six before narrowing it down to the best match.

So many of you have said that you’d donate a kidney, which is really, really lovely. I obviously can’t, having had diabetes for twenty-four years now (I might need one someday too!) but we will willingly consider any one else’s. Braedan also cannot, until he’s eighteen (or maybe sixteen if he’s a sibling), but a donated kidney only lasts ten to twenty years anyway so Braedan could give Austin his next kidney. The ideal kidney comes from a living relative between the ages of eighteen and thirty-five. My youngest brother Cory, a mere twenty-four years old and perfectly healthy, has offered his kidney already and has even requested that they complete the tests on him now so we’d know we had one and wouldn’t have to worry. (The doctors said no one will do that in case he gets hits by a bus so, Cory, look both ways before crossing the street!) But if his doesn’t pass the series of tissue matching tests, we could take a kidney from any healthy person (no diabetes, no hypertension, no smoking) up to age 50, with Austin’s blood type (AB-positive).

I know all these details make it sound like we’re definitely moving ahead with this. Some of you are probably thinking, “Wait a minute! Did I miss a posting?” No, you didn’t — we haven’t completely decided. But it’s likely going to happen anyway, so all this will indeed become relevant. We’re still waiting and thinking. We’re still going to try to have a little summer, in our minds and our lives. We expect to remove Austin’s PICC line late next week after another blood transfusion (his damaged kidney is spilling blood into his pee causing his hemoglobin to drop long after the effects of chemo should be out of his system). We think maybe we’ll do it after the Fourth of July, although I know that it’s gonna be hard to ever pick a good date; there’ll always be some reason to wait another week or month. Can there ever really be a “right time” to remove a child’s last remaining kidney?

Some moments it all seems manageable, others it seems totally overwhelming. Twenty-two months is a mighty long time. This last round has been less than six after all. And it has seemed like a mighty long time.