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.


Lily Kay Monkey

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