We’re hanging in there, thanks to an army of friendly volunteers helping wrap, pack, carry, load, move, feed and care for. Austin is still in the hospital, but should be released tomorrow which means that, yes, thankfully, we will have our last night together here on Edgehill Road, a minor issue in the grand scheme […]
I am not pleased. Remember that we’re set to move in four days and are in the midst of packing up our entire house? And remember that little rule about going to the hospital if Austin has a fever over 100.4? Can you guess where this is going? We went to the clinic today […]
Sorry to leave you all hanging on such a bad post back there. These past few days have certainly been a series of ups and downs. We are home, released first thing on Thursday morning. Austin’s spunky self has re-emerged, he’s jumping on the mini-trampoline and playing rocket blasters with his brother (with whom he […]
Long day. Ugh, another long day. Since I don’t have the energy for drama and good story-telling right now, let me cut to the chase and tell you that he has a PICC line after a serious and sustained effort at replacing the Mediport. He was in surgery for four hours, not quite the “quickie” […]
We had a day once, back during the first round of cancer, that a nurse described as The Day of a Thousand Paper Cuts. We were in the PICU following one of Austin’s surgeries and he was on temporary dialysis but the dialysis machine kept breaking and leaking water all over the floor. When a […]
Back to the hospital today, for the next round of chemo. My little guy was zipping about the halls on his tricycle all afternoon, a sight completely incongruous with his balding head and IV line. But typical Austin, nonetheless. This week includes the third of his three new drugs, one we’ve never had before that’s […]
The death of your child follows you everywhere you go, hovering in your blindspot. That’s how Lorrie Moore describes parenting a child with cancer in People Like That Are The Only People Here. In your blindspot: just out of reach, never in focus, but you know it’s there. So you move along, heading for that […]
than before.” That was the subject line of the email I received this morning from Austin’s doctor containing the results of yesterday’s kidney function test. Even better than before. Three weeks ago, his kidney function was on the low end of normal, which was only surprising because it was still within “normal” range at all. […]
Another thing to check off the list, another accomplishment made, another fear overcome. Austin had his last radiation treatment today and, just like that, one big thing’s done. Radiation had seemed so scary to me; I’d imagined his skin burning or, at the very least, itching in the spot where it was zapped. This is […]
There is so much sadness in this journey. It’s not always at the forefront, simply because you have to keep going and behave normally throughout the day, but it’s there, right under the surface and when that surface gets scratched, it comes quickly to the top. I went to a wake last night (something I […]