Thursday, February 7, 2013

Making the lists

After a dozen or so scans- I finally got smart and didn't tell Lily about it until the last minute. I actually didn't tell her about it at all- she saw it on the calendar. Lily is a stress monkey. Whether it's a side effect of the steroids or just her personality- she tends toward the hyper stress mode. So the other day she spots MRI written on the calendar and immediately asks- WHO is having an MRI? Um- you are. Yeah, you kind of give up on Mother of the Year when you genetically predispose your children to the jackpot of cancer disorders. SO she shakes her head up and down, processing the news- Ok she says- what time is it at?  Well that should be obvious, but I write things in code- 9 clears 930 admit- she can have clears until 9- She is NPO but that starts in the middle of the night.  She looks at me- oh yeah she asked me a question- It's at 11, we have to get there around 9.  DO I have to be NPO until then? She couldn't tell you what 8x4 is- but she will explain what exactly NPO means. It's Nothing Phucking Orally. Ok she doesn't know that- she just knows it's not phun to not eat before scans. It's also not fun for me because I generally can't eat out of sympathetic guilt and by about noon- I'm a bundle of hungry nerves. Especially since last time- it took them 4 or 5 tries before they got her IV started. Numbing cream or no- that's not something a 7 year old can forget. I don't expect her to, so I lay down the law for the tech. He seems new- blanches a little and next thing I know- one of the other nurses is taking over. I didn't think I was mean- I told him he would get 1 shot to get her IV in and 1 dart- it was his choice if he wanted to dart her before or after that try- I recommended before.He refused to come near us after that. God I remember the days when I would let the newbies practice on me. Now I point to the vein. I don't let people practice on my kids. Period. So she gets the dart- it takes the edge off and a tech who I don't know but have seen around gets her IV in the first try. I make a mental note- he's on the good list. I see people all over Triple and many I can't remember where or how our paths crossed- but I do remember if it was positive or not. Sometimes when I am sitting around and waiting- I try really hard to place people- I swear some must have been in the room the day Lily was born- or in one of our many surgeries, but it's just a guessing game.

Lily was especially agitated after they put the IV in. Usually the dart calms her- but we have a different team- and one thing I've learned is that everyone has their own style and my memory sucks. No she doesn't like the gas- yes she does well on the dart- but don't ask me what specifically does into that magic little injection that makes everything all rosey. It obviously was not in it today. She cried. She panicked. It was a definite learning experience for the med student, resident and child life specialist in training and the momma who is trying to do all four jobs at once. The nurse assures everyone that it's normal. Lily normally gets emotional- right? Well before hand yes- but usually it's the waking up part that sucks- not this part. She kept chanting how she didn't feel normal, it didn't feel right. I know it's the meds and she won't remember this- but I will. Every last tear.  Her begging me to let her go to school- school is fun- this is not fun- I just want to go play- I just want to be normal-not this. Not this. I want daddy, daddy is supposed to be here. I Promise her that daddy will be here when she wakes up. Finally we are on the move and she continues sobbing in the hall and finally the anesthesiologist has mercy on us all and gives her some versed- the happy juice and she drifts away into happy land.

As they get her situated in the MRI- the nurse confirms how long the MRI will be to assure they have enough sedation on board. She says 30 min. I was under the impression it was going to be 2 hours. I am a little annoyed that I requested a Brain MRI and was told that this was the first step- we'd get to that when we needed to.  As a girl who comes from a long line of brain tumors- I don't make this request lightly. But I have to trust the docs. 

The waiting part sucks. I can't focus enough to actually read anything. I try to listen to music to drown the anxiety. I pace. I find a window down the hall that is radiating a little warmth. The sun is shining through clouds- bouncing off the pink stucco like a poorly timed sunset. Rainbows appear and dart behind clouds. I hear the metallic clink of the wheels of a gurney- it's Lily. She's snoring away.  We head back up to the sedation center to begin the wake up process. Phil manages to make it there from work before she wakes- lucky for all of us.  She wakes briefly declaring she has to pee. I am really glad Phil is there- it takes both of us to drag her 94 pounds of sack potatoes to the bathroom where she promptly proceeds to fall asleep on the toilet. I stick her hand in the sink and start the water- nothing. I shake her and tell her to go. She says she's thinking, she thinks better with her eyes closed. I guess it could be worse.

She finally is coming out of it and the oncologist comes in. The dread. Absolute freaking dread. He plays with her for a minute and I want to shake him and scream- just tell us. The abdomen and pelvis were clear. Seemingly good news- I feel bad that I am not relieved. I want to believe that things are not about to get worse. I want to believe. But...oh there it is. She had a pretty full bladder so we want to do an ultrasound to check that out.  I guess that makes sense. And then we will do a PET and a brain MRI. The order is not set in stone- we will deal with each and cancel or add as we find or don't find information out. I don't like this game. This game sucks.  Can we give this game to the hypochondriacal person?  So we are going to do another ultrasound, then possibly a brain MRI- without sedation- which I requested we do today while sedated and then PET or maybe PET if the ultrasound shows something and then maybe brain. So the list of tests starts. I know there is no quick one size fits all- but this seems neither efficient or direct. It seems like we are stabbing in the dark. This is the big crappy part. IF you catch cancer early- you can potentially "cure" it. Her bloodwork implies something is brewing. IF you wait and see- it might spread or be too big to get. I know I have to be patient. I know that I have to have faith. It's just really tough to go looking for something you don't want to find. Despite the fact that I did all the research 4.5 years ago- I want to believe that Lily will break the mold-defy the poor prognosis- obliterate the major risk of recurrence.  I try to have patience and remember we can get through anything if we stay positive and stick together. I hug her a little tighter, a little more often. I hug all of them tighter and more often. I think they are getting a little annoyed- so I guess I am doing it right.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)