Wednesday, February 20, 2013


After battling traffic and parking related to Tripler way too many times in the past month- I was relieved to have a night appointment. Since the MRI is way overscheduled- always, they've started night appointments. It's kinda like Night Court- but hospital style.  Of course you run the risk of getting bumped by emergency scans- but that happens during the day too.  Add the bonus of Lily not missing more school than necessary- this could be great. Yet as soon as she saw MRI on the calendar- she starts to panic. Is it going to be a long time? Am I going to need an IV? What are they going to see? What if they see a tumor?

None of these are questions one would expect from a 7 year old. But as we know- Lily has never been your average kid. My biggest worry was that they would be able to get good images through the fabuliciousness of hair on her noggin. Between the past 4 ultrasounds, MRI, CTs, etc- it has been difficult to get any of us in for hair maintenance. God Love Ponytail holders and headbands.

Ultimately, Lily's biggest worries are 1) that she will have to talk to the MRI tech and 2) they will see what she is thinking.  I love that this is how she views the world and partly wonder if her coping mechanism is just screaming nasty words at people in her head as she seems to be overly concerned with people knowing too much about what is going on up there. I explain that the techs will be nice and they have a job to do so when they give instructions- it's just to get the MRI done as fast as possible and that means holding really still- statue still? Yes- statue still. I ask her what the worst possible thing the tech could say to her is? I just don't want them to yell at me. They will absolutely NOT yell at you- they will tell you to hold still- but if you need something you have to tell them. How will they hear me? There's a microphone. Can they see me? Yep and you will have a bulb to squeeze. Ok. And they won't see the words in my head? No, they will only see your brain. (fingers crossed).

We go to check in and Miss Shy- looks at the tech and says- can I bring Pooh in with me? He looks at me- I just shrug- really it's your call- I'm pretty sure he doesn't have any metal- the poor old bear is hanging on by a thread.  He asks if he can take Pooh and make sure. Lily's eyes are wide- as he disappears with the bear- Pooh's gonna have an MRI? Pooh passes the test and Lily is all smiles. We have to wait while they get the machine ready  and she whispers to me pointing at a guy in the waiting area- that guys eyes are red. When Lily is nervous- she talks- a lot. And she says hugely inappropriate things- loudly- like- which one is your fake boob again- while reaching out to cop a feel. Yeah this is my life.  I tell her he's probably tired and not to stare. I look up to smile apologetically and the guys eyes are No KIDDING- Twilight caliber- creepalicious RED. I can't help but laugh. The freaks come out at night- and although you don't expect it as much in the Army hospital-really military folks are a cross section of society and have their own idiosyncrasies. He has a big black leather purse at his feet and falling out of it is a belt with studs on it- the big sharp, pokey kind.  In my mind are all kinds of images and scenarios of what brought him and his lovely lady vamp here, at 8 Oclock on a Tuesday. A few minutes later- she appears. Huge hickey and all. I try not to laugh and am grateful for the distraction.

Really everything else is irrelevant because I called ahead and asked if we could possibly use the goggles and at a minimum headphones with music. We brought a movie and she was good to go. The biggest glitch was that I told her they would put the IV in first- and they put the cream on first- so they would inject contrast in the middle of the scan- Lily doesn't do well with change- but we talked through it and decided that cream was better and she would be brave and watch the movie. I didn't want to offer to sit in the MRI suite with her- since Lily is all about precedents- I want to see if she can do this on her own and she is doing great and hasn't asked me to- I know she can, she's already absorbed in her movie. I retreat to the waiting room. The guests have rotated and there are 2 women who also talk loud when nervous- and obnoxiously about who they will and won't have sex with. SO glad Lily is in the loud room with headphones on and that I have mine in my bag- oh GOOOD-NESSS.  Lady 2 takes a picture of Lady 1 in her scrubs- lady is a stretch- and promptly sends it to her husband. Lady's 2's not Lady 1's husband . Weirdsies. I turn my music louder. Before I know it, it's been 45 minutes,  the door opens and out comes Lily- goggle imprints on her face and asking for a snack. That's my monkey. She shows me her "poke"- I didn't feel it at all!  Part of me wonders why we haven't done it this way all along. I'm sure it's because this started when she was 3 and most times her scans last 2 hours. BUT- with the right movie choice- we may be able to do this.

I expect to hear results from the brain scan tomorrow, maybe tonight if I'm lucky. Next up will be the PET-CT scan. This is the one that has the most risk and possibly the best payout of information. Kind of like all things in life.  The risk is the amount of radiation. First  of all she's young which means her cells are a lot more active which means they can get damaged pretty easily from radiation. Secondly she's got this pesky Li Fraumeni Syndrome- which includes what is called "radiation sensitivity". A friend and I were just joking about this sterile inocuous way of putting it. Our cells don't repair damage like they should- radiation causes damage- normal people's cells fix it- ours get overloaded and go rogue(cancer). This scan involves not only the radiation from the CT(which is around 300-500 chest Xrays worth) but a radioactive glucose is injected beforehand. The theory is that cancer loves sugar- it eats up the radioactive glucose(remembering that helps me avoid that extra brownie..)- whatever lights up on the scan is a potential malignancy. The down side is that kids are growing- so they have a lot of normal cells that are using a lot of sugar too, so you can get false positives. The up side is that the earlier you catch cancer- without seeing symptoms- the better chance at removal and survival. SO here we are- still hoping to see nothing- but not feeling any better about the nothingness. Needle in a haystack- unless you plan on sewing- do you really need to go looking? Ah the conundrums.

No comments:

Post a Comment

Lily Kay Monkey

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