“There’s the Boy I Was Telling You About…”

First of all, yes, we are home; Mark and Austin were released by 10 o’clock this morning after several good blood pressures in a row. His nephrologist noted that the overnight hydration coincided with the spike in his BP, which makes sense because those fluids are basically saline, containing, duh, sodium! So after all that effort I was putting into reducing his salt intake all day long, we were then pumping it through his veins all night long. Nice.

The purpose of the hydration was to improve his creatinine, another measure of kidney function. But we were essentially creating a falsely reassuring number while also raising his blood pressure, which is considerably more dangerous to the kidney. Needless to say, the fluids have been halted except when absolutely necessary, like during chemo. One less thing for me to be in charge of at home, which is nice. It wasn’t too bad except on the few occasions I forgot to take the bag of fluid out of the fridge two hours before going to bed, to allow it to warm up to room temperature before pumping it into his little body, and then had to set my alarm for two hours later so I could hook the whole thing up. Just what I need, less sleep, right?

So anyway, we’ll see how his BP is now that we’ve upped his medicine yet again and stopped the overnight hydration. Hopefully that will return to being a minor issue in our lives.

The other interesting thing that happened during our stay had to do with our room. We get a different room almost every time we’re in-patient and have, of course, stayed in almost every room on the floor over the past two-and-a-half years. Because Mark had taken over late Friday afternoon, it was he who moved with Austin from the clinic over to the in-patient side, traveling through numerous corridors connecting numerous buildings with up elevators and down elevators before reaching that final destination. When I arrived a few hours later, they met me in the hallway where Austin was jumping out from behind corners and squealing long before I had a chance to be surprised. I asked Mark where our room was so I could drop off my gear and he casually said, “Oh, right there on the main hall, next to the shared refrigerator.”

“Wait … you mean … Ariana’s room?”

You’ve got to be one of my longtime readers, one of the original Carepage followers, to remember little Ariana. She was a patient during our first few months on the floor, in the summer and fall of 2007, a positively darling girl not yet four years old, who tricycled around with a tiara balanced on her pretty bald head. She and her mother made quite an impression on me and I think of them literally every day. In case you didn’t already guess where this was going, Ariana did not win her battle against childhood cancer and passed away in November of that year, on Mark’s birthday.

Her room on the floor has remained a sacred place to me, as she and her mother share a sacred place in my heart. Although our children had very different diseases with extremely different treatments and prognoses, I sometimes feel as if we are becoming them. Not necessarily in terms of the cancer so much as in terms of our role among the families on the floor. Ariana was deeply loved by all who knew her and cared for her. She had that spark, you know, that special magical little spark that I see in my own boy(s) every day. I can distinctly remember pointing her out to our visiting friends: “See? That’s the little girl I was telling you about.”

A statement I have heard many times over the past few months as Austin zooms down the hall past some other patient’s open door: “See?” they turn to their visitors. “That’s the little boy I was telling you about.”

In some ways it makes me feel proud. Yup, that’s my boy, the one who can still race and run and leap and laugh despite being tethered to a bag of chemo. And in other ways, it terrifies me. Because I do not want him to be too much like her. I do not want us to become them.

So I walked into that room shaking my head, but willing to try. It was a huge room after all, one of the nicest on the floor. Mark didn’t think it was a big deal. “It’s just a room, honey, it doesn’t mean anything.” But after about a minute, I started to cry. “It’s not just a room, honey. I can’t be here.”

He quickly went out to talk to our nurse who quickly and quietly moved us to another (much smaller) room. After all, I thought, it’s only for one night. Which of course wasn’t true. But there was nothing there to haunt me.

I adored them, Ariana and her mom, I adore them still. But I do not want to be like them. No, not one single bit.