Thursday, May 23, 2013

Lily Pads and Murky Water

May 23

One of the things about brain tumor world is that sometimes you get to do really nice things because your kid is smote.

I call these things lily pads…spots to jump on in between the yikes of LIVING with brain tumors, that murky water that threatens to swallow you... these lily pads provide a joy, a respite, a nice thing. Lily pads can also be regular nice things (ie that happen to anybody, not just bt kids). Sometimes I would have a moment, mid-happy-fest, and realize WHY we were getting whatever blessing we were receiving, and I would just have to breathe. And breathe.

We also found ourselves, 5 years into this whole business, really trying to participate more in awareness/fundraising events. We could not do this in the beginning, but by the fall of 2009, we could, and we did.

We attended the Big Apple Circus in October 2009, courtesy of the Children’s Brain Tumor Foundation, a wonderful organization that sponsors a few really spectacular events each year for brain tumor kids and their families.

From Caringbridge:

Before the show, the little girl behind us was talking to her mom. “Mom, since I have a brain tumor…when I get older, will my kids have a brain tumor?” Mom answered fast, emphatically. “No.”

And I had a moment.

Thankfully Genna didn’t ask me…she heard the little girl (and she poked me and said, “oooh  that girl has a brain tumor, too!”…yes, MOST of the kids there did, but ok). But if she did ask me…I couldn’t say no.

I couldn’t say yes, really who knows? But in that moment, I had the ol’ knock upside the head of not being able to say, “No, Genna, your kids would NEVER have a brain tumor. They will be balls of health.”.

I can’t say that.

We need a cure. I know this is a genetic thing, I know there is no quick fix. But somehow, every little loss, every moment seems fresh and raw when it hits.

That there is a big fat nf/bt lesson. Genetics are cruel, my friends, genetics are oh so cruel.

Just a week or so later, we trekked to Philly for the Race for Hope. And there, both of my girls jumped into the survivor photo…I hustled near the front to be able to get pictures.

My girls were front and center (do they ever find any other spot?), and the woman next to me asked the person next to her…”are those 2 little girls sisters? They BOTH have brain tumors? Oh my God…” and the gentleman next to her answered, starting to explain my girls’ story (he must have been a volunteer)…I tried to say “they are mine” (and yes, we had on matching shirts), but I don’t think they heard me…and then their response to our reality got really hard to be by (much aghast sorrow)…and I had That Moment of


Yes, Einstein I am not. Yes, I know WHY we were in Philly…I wish I could explain how the parental brain DOES this, but it really is unexplainable unless your brain has done it.

Telling Dave about it later, he agreed, we get used to it. We get used to the story, the yikes, the OMGMCHBT moment. How can you get used to that? It’s so utterly unacceptable…

Which ultimately is WHY we go out at 5:45 a.m. in the rain to Philadelphia to run for a cure. But’s easier to focus on making t-shirts and cookies and getting rain ponchos than on the reality of why we’re doing what we do.

My daughters, both of my daughters, have brain tumors.

And while strangers (but really, just un-met friends in the common cause) were trying to control their emotions about my girls, Genna was making very weird faces (sticking her tongue out and such) and Rosie was being cute and oblivious and taking off her hat for the national anthem, etc. And I was wishing I had not opted for mascara.

I feel bad, thinking about it, those poor people realizing both of these girls have brain tumors. Dang.

And that is how it is, life with NF and brain tumors.

Rosie’s January 2010 scan showed a new area of concern. Now, 3 years later, doctors refer to this area as glioma, but they weren’t sure then. Otherwise, she was still stable enough that no treatment was required. But sigh already. Typing it like this is oh so clinical, so nonchalant. But it was a…ok, can’t type what I want to, a John Stewartism of catastrophe and expletive. But that’s what it was.

In March, 2010 G tried to do her scan unsedated, then she was just too scared, and opted to take a nap. The scan was mostly stable. Meh.

One highlight of this time was Friends of Jaclyn Day at RU Lacrosse…G got to sit on the sideline, and every girl on the team had a shirt that said Genna #1 on the back…I was so verklempt seeing this display of love, G was agog… a lily pad moment…

She still wears her shirt like that all the time.

And in April 2010, I ran with NF Endurance for the first time, at the Jersey Shore Relay.

Ok, I “ran”. I survived. I did NOT keel over dead. I did not throw up at the finish. Winning! (and I only had 4.2 miles to cover). For me, this was a huge conquering of fear, and a first step in taking back some of what I felt NF had taken from me.

I'm the one who looks SUPER FAST.
ok, lies. The lady next to me finished the Boston Marathon this year in 3:40, I think? (thank God she is fast).
Dave runs about 8 minute miles over distance.
I finished the race IN 2009, before the fourth of July. The race was in April . Winning!

Another lily pad.

Rosie made HER first communion…she couldn’t wear G’s dress…for Rosie, NF means she is super tiny, G’s size 12 communion dress was like a 8 man tent on Rosie, we had to go find her a size 6x or 7…but it was a beautiful, hopeful day…another lily pad.

hot enough for sun dresses, fresh snow on the peaks behind us.
 Our minds were Blown.
 We flew out to California and drove to Nevada for my brother’s wedding…aside from the flying part (ooooh snap), it was a glorious adventure, we had never been to that part of the country and it was astounding, amazing, and capped off with getting a wonderful new sister.  Major lily pad moment.

snowball fight, Memorial Day weekend. Them be some MOUNTAINS, those Sierra Nevada.

The next week Dave’s brother got married…then we had a dance recital…then Lake George, our annual vacation…and then scan day for both girls, July 26, 2010.

Rosie was rock solid stable.

G, not so much.

Parts were stable. The optic & brainstem portions are stable. The middle...not so much. Our doc saw us ON TIME (egads!), and spent more than 2 hours with us, going over the films. G told some jokes, did her thing, and then went to watch tv...we were on a different floor, she was ticked to not be by the playroom.

The films are not nice.

We were given the option to wait 6 weeks to make sure things are progressing, and then deal with it. So we will scan again on 9/7. Right before school starts.

Trying to hold it together until my girls go to bed...I think I scared the poor med student by joking about the horrifyingness of everything, but really, it is freaking ridiculous...a DIFFERENT spot I haven't worried about...just not good...

just done for today. Thank you for praying for us. G knows that we have to rescan in 6 weeks. She knows that part of her tumors weren't stable. We told her we will have to figure out what to do if things still look funky. We have NOT specifically said what that could mean. She told me she does not want to do chemo again...asked if she could do oral chemo if she has to restart...but that is as far as we have gone thus far.

…really, really hating on nf right now. really hating.

…thank you so much for your prayers and support, please keep them coming.

Back in the murky water again…

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