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If it’s not one thing, it’s another.

Now that the hand has (mostly) healed and the kidney is (mostly) bouncing back, we’ve allowed ourselves to fully embrace our normal lives. We’ve allowed ourselves to believe that we lead normal lives.

But we don’t.

When Austin had all his scans two weeks ago, his hemoglobin was low. Not below the threshold that required an immediate blood transfusion, but on its way. His doctor recommended coming in the following week which I pushed off until this week because I didn’t want him to miss camp. And then over the weekend, he got sick. A fever, sore throat, complaining about his ear hurting, long and fussy nights. So yesterday, we had to go to the clinic anyway to match his blood for the transfusion and I asked for a doctor to see him just to be safe.

Weeeelllll: Fever, ear infection, suspected dehydration (which didn’t turn out to be the case, luckily) and most likely, anemia. So, you know what comes next, right? They placed an IV in his arm, started him on fluids and IV antibiotics, and we waited. And waited. I sat in a small chair with this big sleeping boy, sweating out his fever, in my arms. The hours ticked by until they found us a room on the over-crowded in-patient floor and over we went.

Another long and restless night, with Austin waking up every time his blood pressure was taken or every time he rolled over and became tangled in his IV line. Then he’d request that I join him in his bed, which was many times more comfortable than the rubber bouch (bed-couch) I usually sleep on. But by now he was sweating out the IV fluids and soaking the sheets underneath him, so I was back and forth, back and forth between bed and bouch, until we both finally slept soundly from 5 until 8 (Austin until 9:30 actually).

His fever has passed, and his kidney numbers look fantastic (which, of course, is all that really matters) and he is finally, just now, starting his transfusion, after a long and boring morning quarantined to our room. The blood, lest we forget, takes seven to eight hours so it may be past his bedtime but I will fight to be released as soon as he’s done.

One more night, one more time, one more brief trip down this dark road. Every time I dare think we are passed the danger zones, every time I dare imagine that we have a wide open future ahead of us, fate or bad luck or something steps in and snaps us back to reality. Not so fast, it says. You may feel normal every now and again, but you are not.

But, despite hospitalization for every little ear infection and sore throat, I hold tight to the belief that we have a wide open future ahead of us. That one I will let go of.

Today was fine. Long and boring and exhausting the way that standing around an airport doing absolutely nothing all day can be exhausting. And that’s what we did: nothing really, except roll spirals of Play-Doh and paint with watercolors (I on paper, Austin on his legs).

But he was a trooper. Not a single peep out of him when the IV was placed in his hand. I’m pretty amazed by how he handles these physical invasions, minor though they may be. He doesn’t even squeak when he gets his weekly blood draw, and the IV, which I was nervous for, was quick and easy. Funny how his brother screams every time I get near him with nail clippers. Oh well, to each his own.

The blood took seven-and-a-half hours and will hopefully last us six weeks. It blows me away to think we used to have to be there almost every day, sitting through transfusion after transfusion. When you’re so deep in the trenches of cancer warfare, it doesn’t seem as if you’ll ever emerge, as if you’ll ever again live like a normal human being. And then, sometimes without warning, you come out the other side and return to the land of the living, and it’s almost as if it never happened. That way of life that you were forced to adopt as your own suddenly feels completely foreign.

Life once was normal and then, whoosh, it was anything but. And then whoosh, by an incredible stroke of luck or strength or something, life is suddenly normal again.

We’ll take it.

He needed platelets again yesterday. And again today.

His body just can’t keep hold of them.  I don’t really understand the science behind it but something about his antigens “chewing them up.”  Yesterday was actually our “quick” day as it lasted only four-and-a-half hours and we were out in time to pick up Braedan. Today took longer because about thirty minutes after his transfusion, he broke out in hives.  An allergic reaction to some of the antibodies in his donor platelets, not terribly uncommon but concerning nonetheless. So, a quick dose of Benadryl through his line and a sudden nap and we were released shortly after 5.

Braedan is so completely easy-going that he is thrilled with whomever picks him up from school, however unexpected, and he had a great afternoon jumping on the trampoline of our friends. That definitely makes things easier. Plus the fact that everyone seems to enjoy having him over — he’s not one of those kids whose favorite activity is “dumping” (you know, dumping containers of toys onto the floor but never playing with any of them). He’s endlessly chatty and adores grown-ups, so I don’t feel too guilty for foisting him on people at the last minute.

We’re due back in the clinic in the morning and expect to have to go in over the weekend too for at least blood counts if not transfusions, which means briefly checking into the in-patient floor since the clinic is closed.

Nothing brilliant to say right now except I. Am. Tired.

Isn’t there a movie where some guy says with a funny accent, “For you, dahling, never a quickie. Always a longie”? That’s sort of how my life feels and I’m not talking dirty here.

I brought Braedan along for Austin’s “quick” lab work yesterday, thinking we’d be in and out in an hour and still have time for a last-day-of-Spring-Break playground visit.  We arrived in the clinic at 1 . . . and Mark finally met us at 6:30 so I could take Braedan home for dinner. After another switch-over two hours later so I could spend the night, Austin was released from the hospital at 2:30 this afternoon. How’s that for a quickie?

He needed platelets, again, even though he’d gotten them on Friday. And then needed a Doppler ultrasound to check the blood flow through his arms and fingers because his hands looked purple. And then we couldn’t get his blood pressure to drop to its already elevated “normal” range. . . and because the combination of low platelets and high blood pressure can cause bleeding in his brain, we were admitted. We did eventually use enough medications that his blood pressure lowered around 10 and then we were simply “observed” through morning, at which point he needed another platelet transfusion. Huh.

The two boys were not at all fazed by their hospital day though as yesterday they tore around the halls and played games that involved lots of squealing. So it was mostly okay. But of course, everyone’s patience was tested after all those hours and when Braedan started listing in a whiny voice the food he was planning to eat for dinner in the hospital cafeteria, including Austin’s favorite forbidden fruits corn dogs and yogurt, my protective motherly instincts kicked into gear and none of those instincts were aimed at protecting Braedan. I let loose a vicious string of attacks at him, including the words “torturous” and “cruel.” I think maybe steam was coming out of my ears.

Not my best moment. When he later asked me what “cruel” meant, I knew I had gone too far and explained carefully and calmly how much it upsets Austin (and me) to hear about all the things he’s not allowed to have. We talked for a good long while and I felt fortunate that kids are so quick to forgive.

And after we drop Braedan at school tomorrow morning . . . Austin and I will head right back to the clinic for yet another transfusion of platelets.  Oh boy.

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February 2020
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