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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 is miraculously getting along — maybe absence makes the heart grow fonder?). He’s been completely happy and seems mostly normal, despite the fact that he isn’t eating much.
We’ve gotten the hang of the PICC line, especially now that it’s covered with the “tube” part of one of Mark’s athletic socks (an “arm bra”). Yesterday we went to the clinic for labs and a dressing change which was a fairly miserable experience because the tape they’d used in surgery was much stickier than the regular one and took ten minutes to slowly and painfully peal away from his already sore arm. Then, late last night, I went to flush the line and couldn’t do it. It was stuck, nothing going through, total resistance. You’re not supposed to push too hard when this happens in case there’s a clot that you don’t want to push further into the blood stream. It was the middle of the night at this point and I figured there was nothing to do until morning, but I tossed and turned for hours convinced this PICC line wasn’t working either. Imagining my Saturday in the ER, with twelve different doctors trying to figure out what to do with this kid who clearly needs a central line and clearly rejects every one of them.
I tried to flush it this morning, again to no avail. Called the attending oncologist, who didn’t sound too alarmed and told me to call our Home Care nurse. Well, I’d spoken to this woman yesterday when she called to schedule a weekly visit to change his dressing. I told her we’d be in the clinic each week and they could do it there, so after making sure I felt comfortable with the flushes she said, “So, it sounds like you don’t need me?” “No, I guess not,” I answered, never guessing I’d need her less than twenty-four hours later. When I called her today, she listened to our predicament, and then apologized for having canceled us as her patients! Oh great. She said she could reinstate us on Monday and wished me luck (thanks a lot).
So there I was, mentally preparing for an ER visit (not exactly the place you want to bring an immuno-compromised child) when I decided to call our old nurse practitioner, a long time friend and my go-to for advice. She calmed me down, urging me to avoid the ER at all costs, and walked me through some options, one of which worked beautifully . . . and the line flushed! All was suddenly well and every minute of this almost-awful day now feels like a gift.
And the shots — oh, this kid is a trooper. On Thursday night, he screamed and cried so hard that I cried, just furious that, on top of everything else he has to go through and everything else we have to go through, now we have to add this twice daily bit of pain and suffering. But by Friday morning, he barely let out a peep. And the three shots he’s had since then have been a piece of cake. He climbs into my lap, making sure Braedan is nearby with a distracting toy, and Mark pops that needle in his skinny little leg and it’s over. “One and done,” is Daddy’s motto.
I’m totally wowed by him, by his ability to just adapt and take it and make it all okay. By his truly incredible resilience and his endless supply of strength. By the smile and the laugh and the jump that inevitably come after the shot and the prick and the poke. He keeps going and that lets us keep going. He guides us through this with a three-year old’s sense of possibility and hope and joy.
How lucky are we?
I know this whole Mediport business can be confusing for those of you with no experience in the world of cancer (lucky you, by the way) so I have some visual aids courtesy of my far-from-modest (and sometimes sedated) little guy.
This first picture is from November 2007 of Austin with his Broviac line, which always dangled down like that and needed to be kept under wraps (literally — under an ace bandage and a turtleneck) at all times so he wouldn’t tug on it:
The next two pictures show his Mediport when it’s accessed, meaning that a needle has been inserted into it with an IV line hanging down (the “dangly thing”) ready for use. You can see that it sticks out pretty far and gets in the way when, say, you want to be picked up by your mom. (The purple marks are for radiation so they know where to line up the machine’s laser beams, as we call them in this house.)
This next one shows the Mediport when it’s not accessed. Well, the Mediport “button” is actually hiding under that top band-aid so you can’t really see it, but you at least get an idea of how much less cumbersome it is:
And this lovely shot is Austin last Friday, showing his distinct pleasure at being less encumbered:
His Mediport does, by the way, have a clot in it — somewhere in his internal jugular vein, confirmed today by ultrasound, which is why we haven’t been able to draw blood off it. Not sure exactly what that means or what we’re going to do about it but we’ll find out tomorrow when we visit the clinic after (his second-to-last!) radiation.
His blood counts have bounced back up so we’re done with the Neupogen shots, which Mark gave beautifully (and quickly) over the weekend — no trauma to either father or son (or mother, whose only job was to hold child tightly in her lap). Well done, Daddy!