Wednesday, November 5, 2008


Pre-operational...kinda like me at 2-3am as Bella tells me she's gungry. Bella refused to take a nap yesterday and crashed at 6. Being the smart mommy I am, I went to bed at 8 knowing that my wake up call would be 2-3am. The locking myself in my room at 6 pm last night is another story all together. I call it alone time. Sometimes you have to take it hostage.

I have to tell you about scheduling this pre-op appointment. I call general appt, push the required buttons to schedule in the surgical dept...get a very nice lady who cannot make my appointment for 11:15 because we have a radiology appointment at that time. Hmm-oh yeah like 85 steps ago before Lily had cancer we had this appointment to do an ultrasound on her leg because they couldn't squeeze it in with her abdominal U/S and then they squooze. So I have to call radiology to cancel, I call radiology and cancel- call back central appointments- still can't make appointment- she transfers me to Peds(I don't know why???)- and they transfer me to general scheduling who transfers me back to peds and I hang up and call the surgery scheduler back. " Is there an 11:20 or 11:30 that the system will let you book for me?" Mind you I am not a professional scheduler, although I have played one on tv. No 11:20, But 11:30's open- let's do that- and why couldn't we have done that 85 steps ago? All the while I have this nagging feeling we'll show up to the surgery clinic and they will have no record of any appointment or like 85 appointments on file and I will get marked as a no show and never get my gold star parking spot.

We get to the clinic-- ahh you have an 11:30 and a 12:00 appointment. of course. We go to the vitals room and they weigh the Lilster who as Phil pointed out is almost exactly .8 lbs lighter than her last weigh in. Blood pressure, temp, all good. The nurse looks at me and says, now it's your turn. Cute lil nurse say what? "You have a 12 o'clock with the genetic counselor so we have to do your vitals." But seriously- the scale? Haven't I had enough emotional trauma this past month? Do I seriously have to step up on the scale in front of a room full of people? I don't know if I looked like I was going to pass out or what but she asks me to sit down- "it's just a bood pressure and your temperature." In case I forgot to mention..I'm genetically predisposed to eating while under stress...I've been a little stressed lately. So I am sitting there and the blood pressure cuff is so tight I can feel my fingers going numb. Like my blood pressure is going to be normal. "It's low, we should do it again", Ok now I know the darn thing is broken my blood pressure has never been low.

As it turns out, The genetic counselor saw we were going to be in, had an opening and squoozed us(me) in. Would have definitely packed more snacks had I known that, but I have enough for the monkey. A resident comes in and does the "post-op" exam which entails looking at Lily's incisions. He made the mistake of saying the word "cut" In relation to a tiny stitch that was sticking out and Lily immediately pulls her dress down and turns her back on him. Of course I forgot the No Owies bracelet, but i didn't know if they'd have to draw her blood again and I didn't want it to lose it's magic. He leaves and Dr. E comes in, Lily immediately tries to find her happy place and has her head in my lap and is singing a song I do not recognize. She then blurts out that she has to go potty and I'm positive she's gonna make a run for it. She really just had to go potty. The meeting was cut and dry- she's gonna take a big chunk out of Lil's calf. Parts of the Soleus and Plantaris muscles will have to go, but Lily will meet with a physical therapist and she might have to use crutches for a little while. Phil and I both bust out laughing. When they make the movie- Phil's daydream sequence will be Lily in a Tiny Tim sequence saying "God Bless Us Every One". Then it will cut to me making a face and my sequence which is a Godzilla sized Lily swinging the crutches wildly as windows smash and siblings go flying.

The docs have decided to go with the port, which is this funny catheter that sits under the skin. She will be able to swim and be as "normal" as possible when she feel up to it. They agreed that a catheter with external ports in a 3 year old poses some problems- Yeah It's called Bella, she who likes to snatch. What's this cord???Riiiiiip. Blood spurting. No thanks.

After this meeting, the Gene Therapist comes in. She starts taking a basic history and I hand her the preprinted cancer tree I have generated at the recommendation of my personal doc. It really expedites the whole family history taking process. She asks Phil some questions- like he's responsible for 50% of the kids' DNA or something. He automatically is offended because she asks what nationality/race he is. I tried to explain that it is relevant and she doesn't just want to know out of morbid curiosity. He doesn't buy it. We talk about testing me for p 53 and screening and she goes to get the male nurse to draw my blood. I warn him I'm a tough stick, he doesn't buy it. He claims others probably didn't know what they were doing. Okey dokey. Knock yourself out. Lily is concerned that I have to get an owie, but visibly relieved it's not her. She comes over and holds my hand. He sticks me and she gets pale and Phil scoops her up- the nurse is poking around - a little awkward with the husband in the room... Still trying to find the vein, maybe over here, maybe over there, perhaps a little deeper. It doesn't hurt now- but it's gonna bruise like you read about. I finally suggest a tried and true vein on the other arm- "If you can see it, it's no good" he says. He finally concedes and tries the other arm. "That is a good one" Who told ya that? Yeah, we're done. Let's get lunch..........oh no we have to go down to Oncology so they can get a "good" weight and height on Lily to calculate her chemo treatments. Apparently the height and weight we just had done were not "good".

Of Course the scale is in what Lily calls "The owie room"and she immediately begins her no owie chant. We manage to get a "good" height and weight before Lil bolts out into the hall. She doesn't even breach the threshold for a sticker, but merely points to which one she wants. By the time we got home I threw dinner at the kids, I was beat and locked myself in my room. Phil came in to check on me...I'm just tired and sometimes it's better to remove yourself than to be mean to everyone. I ask if he can manage to hold down the fort? He says the fort holds itself....I wish I would have known that- because apparently I've been doing all this work for nothing. See now the need for me to remove myself? Lily comes in a little while later. Daddy said I have to go to bed. You wanna lay with me? Yeah. So we have some quiet time. She recognizes Obama on tv- He's downstairs too! yep, we're gonna be seeing a lot of him. The schools teach about elections and Phillip and Kiera both came home talking about who they were going to vote for.
Kiera is voting for Obama because he looks just like her uncle. Hmm. I was relaying that to a girlfriend who's 5 year old said he was gonna vote for Obama too because there were 2 boys on his team and the other team had a girl. That was too cute not to share!

We start flipping channels- she wants to watch some discovery show about babies, and suddenly it segways to a little girl who has a tumor in her spine. Lily looks at me, I have a tumor. Yes sweetie you do. I have a tumors in my leg and the doctor has to cuts it out. Yep. Is it gonna hurt? Yeah a little, but we can give you medicine that will take the hurt away so you have to tell us when it hurts. Ok. I want you to stay at the sospital with me. I will. One amazing cookie that one.

1 comment:

  1. Hey Jen,

    That post made me laugh a lot :) Your family is amazing.

    If you need anything don't hesitate to call... My whole family is praying for Lily.


Lily Kay Monkey

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