Monday, May 20, 2013

Two for Two

For the month of May, in honor of brain tumor and NF awareness month (so convenient to have them at the same time!), I am trying to tell our family's story of living through both. I hope that by the end folks have a sense what brain tumors and NF can do to a family, why and how we can work for better treatments (and maybe a cure!), and why we should always, always hope.

May 20

On January 17, we took our baby, our 5 year old Rosie, to get an MRI. She was quiet and cooperative, unlike our EXTREMELY talkative and strong-willed Genna. But JUST like Genna, Rosie was a trooper…

Thursday, January 17, 2008 8:05 PM CST

Hi, all.


I actually asked Dr. B, “how do we say this to everyone?”…and she didn’t really have a good answer, it is what it is, so I’ll go medical for a minute.

Rosie does have small, bilateral optic glioma—like Genna, but only “mildly tortuous” instead of “wicked tortuous” or however they describe it on G’s scan report.. While at this time the chiasm (where the nerves cross; the “magic” Yikes zone for og) is normal size (never seen that before), it does pick up contrast…which means there are tumor cells there.

how beautiful is this child?

Also to our great surprise (and dismay) there is a plexiform neurofibroma located below Rosie’s left ear. This is another type of NF tumor, also generally inoperable. We were totally unprepared for this. Of all the things I worried about, this wasn't on the list! Dang.

As a result, Rosie will have her regular eye check on Feb. 21, then an audiogram to check her hearing (now a concern because of the new tumor) and then a neuro check when she’s not walking like a drunken sailor. If we were homeland security we just moved up to the second highest color on the watch scale (orange? Yellow?).

I should have known, when I had the urge to sing “Go ye heroes! Go to glory! Though you die in combat gory! You will live in song & story! Go—to immortality!” from Pirates of Penzance in the parking garage on the way in (and ok, I did sing it) that we were in for a Day.

I don’t have many good words, as I said to Dave I can hold it together (which I did brilliantly until the last 30 seconds when our friend Brett said howdy, at which point I started crying at the crabby receptionist, who then almost sounded gentle—not often the diagnosis description changes between check in and check out, is it? But I NEVER cry at the hospital) OR ask coherent questions. I was together, not coherent. I am preparing my e-mail o’ dismay for Dr. B.

It is what it is. Now we know.

…We did throw everyone off, coming with the wrong kid…the triage ladies said our name wrong, and then laughed to see who we were, the child life specialist & art lady were a bit “huh?” …it was funny.

I told them they just all missed us, that’s why we had this scan, now we’ll be back regularly.

Oh God…

I feel ill and tired, and really pissed at NF. But I have to see this as Volume Two in The Camiolo Survival Guide…and in that vein I’m going to leave the survivor thing up a few more days…I just need to.

Last night Genna came up to me in her pink footy pjs, her hair all loose for bed…and asked, “Mom, what if someone else in our family gets a brain tumor?”…my poor big girl, up at 5:15 this morning worrying for her little sister.

This world is too much with us…

It was almost too much to bear.

Weird NF thing: NF can create tumors and then just do nothing. About 50% of NF kids with optic glioma have vision loss. We are the textbook example of that (a factoid pointed out more than once when I bring both girls to the CHOP eye doc). But still…in that moment, in early 2008, we were crushed again.

The dark shadow that plagued me had gotten itself a second set of teeth.

Ultimately, Rosie’s hearing was ok, even if the tumor kind of mushed her auditory canal (ie it was uncomfortable to her). Because her vision was perfect, we watched and waited…unlike Genna, Rosie did not have to jump right into treatment. She stayed stable. We started scanning every 6 months for her, and she stayed stable.

But in January 2008, we didn’t know this is how it would be.

I guess I just have to say that despite my sort of shock/denial/deep level of pervasive Yikes, I’m kind of peaceful about this. Honestly, I wasn’t surprised that there was some tumor—disappointed –I did tell Dr. B I don’t ALWAYS like to be right—but not surprised. The plexiform threw us for a loop…

The unknown is scarier, always, has been every step of the way…every time we “master” one part of this, something else magically appears, it’s like we’re in some video game and as soon as we beat one level ZAP! Now there are flying fire breathing pigs falling on us…

Ok, I don’t play many video games! : )

But really, today is only different than Wednesday in that now we know. We aren’t DOING anything right now. Nothing requires doing, we just know that now, in fact, despite our most hopeful hopings, there is a monster under the bed.

Hopefully he will sleep…

We have to do what Dr. B admitted was nearly impossible: see Rosie’s situation (ok, diagnosis, really, don’t EVER underestimate denial as a survival mechanism) without thinking even a speck about Genna’s experiences. Obviously this is practically absurd, but scientifically sound. I think it’s 80% of NF kids with optic glioma don’t require treatment. I did ask Dr. B when she pointed this out if she had met our family, Hi, we’re the Camiolos who NEVER get the good end of a percent…but I know ultimately she’s right.

Rosie’s story may not be Genna’s…

...I don’t know plexiform percentages, they’re such a difficult kind of tumor, I know there’s research being done, Dr. B is doing some of it (she didn’t say that, I had read it when searching for The Magic Cure online)…but that part of the story I can’t imagine. Well, I CAN, and some of the percentages Dr. B mentioned were very scary, but I’m not going there right now.


What we told my children, …We are downplaying the potential yikes, because I’m the mom. I’m supposed to deal with potential yikes, kids only should have to worry about the yikes of the moment. And this moment is ok.

Just now we know. She asked if she has to scan again, I told her yes, just like Genna, we’re going to keep an eye on some things…

We’re kind of feeling this out as we go…because honestly, TODAY is ok. TODAY is good, and my baby doesn’t need to know what tomorrow may or may not bring.

…Today is all we have, really…

And after that, we simply had to try and watch, and live our lives. We knew everyone was hurting with us…and the research was scary, plexiform tumors are SCARY.  A plexiform is essentially an infiltrative nerve tumor occurring in about 30% of NF1 patients.  There are no good treatments, they can grow ridiculously (think any Discovery Health show where someone has a 200lb tumor? 9 times out of 10 that’s an NF plexiform tumor), they are rarely completely operable, and they can turn cancerous.


But Rosie was fine, even though her beautiful little head was so full of yikes.

I know that even a small brain tumor is an unimaginable horror to most people. It’s not my favorite thing to ponder, either, it still FEELS like saying someone is a little bit pregnant. I’m just so sorry for all the pain everyone is feeling, I am so sorry…I hate that our friends and family are so wrecked, I’m just so sorry.

….Genna told my mom on Friday morning, over toast, that if the thing we were watching in Rosie got bigger we would take care of it. And if we had to, Mommy could take care of both of them. She was worried, poor G…

Enough rambling. It could be worse. It just isn’t what we hoped, and I think in some ways, ... I realize I have a whole new set of hopes and dreams I get to watch die. Ye Olde Crash & Burn…my poor girls.

Christmas 2007, just before scan day...

Living life while watching that shadow is the great challenge of NF and low grade brain tumors…the thing that makes this an ultramarathon, not a 100 yard dash.

We just had to keep shuffling along.

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