Thursday, March 4, 2010

Chemo 17, Day 3

The amazing and frustrating thing about hospital time is how events blend and combine and bleed into each other (excuse the unintentional pun) into one large morass that makes it nearly impossible to remember exactly when one event occurred in relation to the others. This is what makes communicating with hospital folks so difficult. It's not that we forget what happens; we just forget to whom we told it. The following conversation happens quite a few times during hospital weeks and their immediate aftermath: "Wait... didn't I tell you that (something) happened?" "No, you didn't." "Oh. Who did I tell?" (side voice: "Me!") "Well, I MEANT to tell you."

So, what happened today? I'm not entirely sure. The Boy had a decent night's sleep, waking around 8:00 or 8:30. Breakfast consisted of half of a banana, then we watched Mary Poppins until audiology came at 10:15 to come get us. The Boy was in a much better mood this time than last time, and he actually played a few games with the audiologist before sticking his thumb in his mouth, his head on my shoulder, and shutting down. That's progress, I guess. They did the same ear pressure test that they did last time, and The Boy fell asleep in the middle of it. That caused some problems; his comfortable position is head on my left shoulder, facing out, right thumb in his mouth. This makes it easy to access the right ear, not so much for the left ear. He won't sleep on the other shoulder the same way, and he won't turn into my neck; so, we sat him on my lap to continue his nap. It worked great until he started snoring, making a big chunk of the test invalid. Sigh. Toddlers!

A student nurse came down with us to observe the proceedings. I felt a little bad for her, because she wasn't able to see a successful toddler test. She saw The Boy fuss and be uncooperative with that particular test. The funny thing? She actually thought that a mildly fussy The Boy was a "rough time" down in audiology. Heh. Let her just wait - The Boy, at his worst, is around a 3 or 3.5 on the 1-10 tantrum scale.

After audiology, we went back to the room, and he rested for a little while. We went to the playroom when he regained his energy and played for around a half hour before a poopy diaper ended the proceedings. We played with Ethan, with whom we played earlier in the week. The Boy actually played WITH him, which was nice to see. When we returned to the room, we played on the couch in the room for a while before returning to the playroom. At the playroom, one of the physical therapists with whom we've worked came to visit a little bit; not an official visit, more of a consult and discussion. That ended within a few minutes, as The Boy asked to go back to the room and rest. (Literally: "Go that way, rest with Daddy!") He slept for three hours.

Immediately before the nap, we did get to see Dr. Graves, and he expressed his delight at The Boy's GFR reading of 67. Basically, as long as his GFR stays where it is, and as long as his counts respond as well as they did with the last chemo, we're in good shape to continue the chemotherapy indefinitely. I'm not sure how I feel about that. The Wife and I have been talking, and we asked Dr. Graves about the likelihood and the dangers of stopping chemo at the end of this maintenance phase - just, going off cold turkey.

We're tired, you know? It's not physically tired; it's being tired of living with cancer on a day-to-day basis. We're tired of having this hanging over our heads, coloring our every thought, word, and deed, preventing us from planning more than a day or two in advance, and putting our careers and our lives on hold. Don't get me wrong - he's worth it, and then some. I would be quite content, in 50 years, to say that I raised two fine young men into adulthood, battling cancer for as long as is needed. But, if we could put it behind us, it'd be worth it.

As we expected, Dr. Graves reminded us that his cancer had come back already, and if it came back a third time, it would be incredibly difficult to destroy. (Sort of like cockroaches.) We knew that. He, like us, wants a permanent eradication of the cancer, not a temporized solution. And he, like us, wants a full and complete child, instead of a shell that has been demolished by chemotherapy. So, we again put our trust into the hands of another, roll up our sleeves, and head out to work.

During his nap, The Wife came to the hospital. We had a nice visit, actually getting a chance to have a conversation! That doesn't happen nearly often enough. She's interesting and funny, and I like her. Besides, she brought dinner. The two of them played upon his awakening, and we discovered that The Boy needed blood.

So, here we are, one last night in the Hotel CHofPitt while he gets blood. Theoretically, we could have gotten the blood around 9, pre-medicated, and finished it around 1 or 2AM and gone home, but that's just silly. We started the pre-medication at 10, when The Boy was winding down. Nothing like Benedryl to accelerate the bedtime process! And, I'm blogging before watching some Burn Notice and going to sleep.

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