Joe. My kids LOVE Joe. Joe is a guy who is retired and volunteers at he Hematology/Oncology clinic at Children’s Hospital as well as other wonderful places. He is a little older, not too much older, bald, not tall, not big, not really what you would imagine as a child’s playmate. He has a dry sense of humor, is intelligent, and really friendly. The kids just love him. I think he’s a pretty cool dude too. So after my little guy gets his port accessed he likes to run back to the play room to find Joe. I take this time to visit along the way with the nurses and staff that have become friends over the years. By the time I make it to where the playing is going on the two of them are engaged in a serious game of Battleship. I get out my book. We are simply killing time until we have to head down to the first floor to the Ambulatory Procedure Center. His appointment down at the APC is at noon so we have to check in at 11:00. We have about 40 min to play. After a looong game of Battleship the guys try their hand at some Guess Who, I receive the paperwork I need to make next month’s appointment and we are off.
We take the elevator again and head to registration. This is a pain in my butt, necessary for billing and all that jazz but stupid all the same. They call us back to the APC and we get settled into our curtain lined cubby hole. Little dude finds some cartoons to watch and I settle in with my book again. We wait. And wait. This is sheer torture, he’s NPO remember? It is almost noon and we have done all the formalities, jumped the correct hoops and signed all the right papers. I have not eaten either (what kind of mom would I be?!?) and about this time I get quite pissed. What the frick could be taking so long?!?! Don’t they know he’s starving? And whining? When the Anesthesiologist finally comes to talk to me I start to see a light at the end of this Great Wall of China sized tunnel. She asks me all the regular questions except this time when they ask if he has any loose teeth I proudly exclaim “yes!”. Then jokingly I ask if she could be a dear and help me out with my dental co-pay, you see if it is just a cleaning it is covered 100% but this one needs to come out (shark teeth) and would be considered an extraction = co-pay. She said, excitedly (for an Anesthesiologist), that she would be happy to pull it while he is out,they do it all the time she tells me. Whoa! Really??? Cool!
This used to be a procedure they would perform in the clinic under sedation, for which I would have to write a whole other novel about cruelty in its simplest form, and even though we have to wait it is much better this way. His procedure is an LP (lumbar puncture) with chemo. A spinal tap in which they remove spinal fluid for testing and replace it with Methotrexate which mingles with the other spinal fluid, surrounds his spinal cord and protects it from this nasty disease. They test/poison his spinal fluid every three months to make sure the mutated white blood cells have not seeped into his central nervous system and affected his brain. So far every spinal fluid test has been negative. This is wonderful for two reasons: he has never had cancer cells in his brain and he has never needed radiation.
Finally it is his turn. 12:17. They wheel his bed back to the procedure room. It is bright and scary and full of instruments. They do all kinds of Medieval torture on kiddos here. Everything from tubes in your ears to an MRI. The Anesthesiologist hooks up the white tube of Propaphol, I kiss my baby and tell him I love him, and she starts to squeeze. My brave little guy is nervous and starts to protest and is quickly rendered unconscious. I am handed a pager (what am I waiting for a table at a steak house?!) and told to leave and they get started on my buddy. I walk out the door and it is shut behind me. When I hear parents of healthy children that need a simple procedure like tubes in the ear (I actually had this done a few times as a kid) freaking out about the sedation and all the worries they have about thier babies I tend to be insensitive. Like “Really?! That’s a big deal to you? They don’t even use an IV anymore, just gas! And gosh it takes care of the problem instantly”. But it is in this moment that I am helpless, same as them. It is a big deal, no matter how small. That is my baby in there. If a doctor told me he had to have something simple like tubes I would first look to the sky and scream “anything else?!?!?” and then I would freak out same as you. Now, I have been here a million times and there is something about this moment when I am helpless that always makes me cry. I shed my tiny embarrassing tears now that I am used to it, I bawled like a baby back in the day. I make my way to the gift shop, Bubs needs his own little bag of Cheeze-Its and a Coke for when he wakes up. I need a little snack too and I head to the waiting area with my munchies to wait for my pager to flash, vibrate, and scream. It always seems to take forever, or about 20 minutes.
Looks like this is a three part-er. Sheesh! Sorry.
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