Thursday, February 28, 2013

Our Friend NED, we want him to stay for a long visit.

I finally tracked down Lily's MRI results. NED is our friend. We love NED. NED is No Evidence of Disease. Another new favorite phrase is "nothing concerning".  Lily's brain looks normal. YAY!  This is a big sigh. Despite several professional opinions- that adrenal cancers don't usually metastacize to the brain- whenever I hear "don't usually" I file it away for a rainy day diagnosis- since "don't usually" usually translates into something that might cross our path. The other big issue is my family history of brain tumors. With Li Fraumeni Syndrome- once you have cancer- the chances of getting a new, rare, unrelated cancer increases- unless of course that cancer is a brain tumor and well the outcome isn't so hot. Since Lily is so young- we are watchful. It's a tricky game. We now move on to the trickiest of parts- weighing the benefits of finding what, IF something is brewing using scans that could potentially CAUSE more damage in the long term with waiting and seeing and possibly missing a chance to nip it in the bud. There are no right answers. Most days I want to pretend everything is normal and try to convince myself that things are fine, and then Lily has an episode and I am immediately transported to 4.5 years ago to a place with tantrums and strange sensory issues and the mommy sense, much more acute than spidey sense- is ringing so loud in my ears I can hardly think.

I feel so lucky to have people I can count on in Tripler. We have several angels that look out for us. I HATE calling in favors and asking people to do things for me- but it's so much easier to do for Lily.  I often rant on and on about our endocrinology visits- their length- their "thoroughness" and how most of the time it's too much and feels tedious. I have been asked why I put up with it. Well in times like these- that is EXACTLY the person I want in my corner fighting for Lily. We have multiple issues we are playing with- we have potential oncologic issues, but we also have some major endocrine issues and they are inextricably linked.  Specialized medicine can be really useful, especially with rare diseases such as Adrenal Insufficiency or Li Fraumeni Syndrome- diseases that professionals may or may not see during their career- it's a huge game of chance. But these are precisely times that there needs to be a continuity and more often than not, this continuity is me. It is also with regret that I inform you- my memory is not what it used to be. In the early morning hours, I convince myself it is old age as I am rapidly approaching 37- which is elderly for the LFS set. Other times I chalk it up to the beginnings of my own brain tumor and go on find my happy place. I felt a week was plenty to stew on MRI results. I sent emails, I made calls- not getting through, finally getting through to a nurse who had not seen Lily's results but assured me I would have gotten a call if there was something amiss. If you have ever been on the receiving end of a "nobody called you?" after a diagnosis- or been inadvertantly revealed a new piece of information in the medical arena- you KNOW that for every 2- no calls could be good calls- is the call that should have been made. When my next step hinges on test results- I'm invested in the timeliness of it.

I call in to our endocrinology nurse. She's been with us from the beginning- back in the day plying the chemo shadow of a Lily in a pull up and purple robe with as much candy as she could carry. At a time in our lives that I wished she would eat the darn candy as opposed to letting it coagulate in her robe pocket. The pharmacy couldn't refill a couple of meds, so this was my opportunity to call in a favor. I mention I hadn't heard Lily's MRI results yet and was told they weren't in. I would feel better if I knew what they were. She asks if I want her to put in a request for the doc to call me. No, I already emailed him- he knows I am waiting. I know he's busy- and probably with kiddos in much more dire need- but this part is taxing. I hear her typing. "Normal" she says."I'm sure everything looks normal, No Evidence of Disease. " I sigh. It helps to hear. Sometimes you just need to hear it. Now we move on to the next issue. I hope NED stays. If there is something to see, PET CT will see it. Now on to scheduling that hot mess.

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.

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.

Lily Kay Monkey

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