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

OH MY GOD, MY CHILDREN HAVE BRAIN TUMORS.

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 still..it’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…

Tsunami of Nice

Well, we are 4 doses into Tumor Battle 2012. TB12 kind of whomped any other feeble New Year’s Resolutions I might have conjured up – and really, how many times can everyone read “this year I will write in this blog more”? . TB12 trumps all.

Only 600 some odd doses to go…if it works…sigh…

So far we are managing through
1. bedazzling everything in sight (t-shirts, chemo “diary”, anything that sits still too long)
2. avoiding all of humanity whenever possible
3. wild Just Dance parties (which are not all that well attended in light of point #2)
4. very loud playing of Green Day in the minivan, which apparently has a Killer Sound System. Nice.
5. random acts of carbohydrates
6. extreme consumption of Christmas chocolate.

And this is just how I am coping as mom!

We’ve had moments of every make and model over the last several weeks. Honestly, spending the holiday with the Ghost of Chemo Future was kind of a bummer. There was almost some relief in STARTING the process for real, after all of the nauseating ups and downs of the last 6 weeks. Laughing, crying, yelling, terror, jollity, love, hate, safety dancing…I feel like we live in a Telenovella but in English.

Even so, I really was not prepared for the Tsunami of Nice.

Since December 5, our own personal Day that Will Live in Infamy (along with 7 years’ worth of similarly woeful days, a veritable Whitman’s Sampler of Medical Woe), we have been overwhelmed by the Tsunami of Nice. Thoughtful Cards. Meals for our family (that we can freeze for hospital days). Tchotchke for G that make her smile and giggle and delight. Notes of encouragement. Random acts of chocolate (there are Cadbury enablers out there, and you Know who You Are!). Prayers. A sparkle Mary (don’t ask, but it was very heartfelt and given in love). A phone call from a Grammy nominated musician who happens to be one of G’s favorites. Hugs. Non-hugs from people who know that hugs make me cry. Text messages. Carpools. Normal things that in this oh-so-not-normal moment become hugely important to us.

A Tsunami of Nice.

We are so grateful. It’s hard to express this (again, see point 2 above), I hesitate to talk to people because I never know exactly what moment is going to be the one to trigger my own tsunami of tears. Some days I can be a medical encyclopedia, coolly relating facts & findings and whatevers, the next day, heck, the next MINUTE I am sniffling when trying to say the word Oncology. It’s ridiculous and embarrassing and whatever. And really, I know a LOT of people don’t know what to say to us. We are living every parent’s worst nightmare, and there is nothing good to say. So I hide.

But because of this, this awkwardness of communication, this painful everything, we never really get to tell people just how grateful we are for the outpouring of kindness to our family and especially to G. We really do feel like a flood of goodness is helping us float along through this massive yikes.

So thank you all…

I have learned, too, that stress makes me stupid and very unfocused. So I have a lovely pile of good intentions here that rivals the pile of thank you notes I could and should write to everyone. I just forget…everything these days. This makes for a very interesting time at work, considering I am a history teacher…but anyway, please know we are so grateful.

In all of the horror of what we are fighting – and sometimes, the reality of what this is just threaten to swallow me –but in all of this horror, we are so honored and humbled to see how each individual act of kindness and love, even from people we don’t really know, comes together to create this massive Tsunami of Nice.

We just need to try and ride this wave through the next few months, and pray that it fuels G’s mighty chemo ninja skills so she may utterly prevail in TB12.

Thank you.

Anonymous Chocolate and Other Mysteries of Life

Your moms all said it at some point: “if you don’t have anything nice to say, don’t say anything at all”. Generally, I suppose this is a good approach to life. But sometimes, there just ISN’T anything nice to say. Nothing. For days and days, not one nice word pops into your mind.

It’s been that kind of season here. I have an entire dictionary’s worth of NOT nice words floating about in my head. But as mom/wife/sister/daughter/friend, silence isn’t often an option. And when I do start talking, the unprintable torrent can
easily spiral out of control.

Likewise, I don’t expect anyone to come up with Hallmark-esque cheerfulness for me. Sometimes there just isn’t anything nice to say.

I am really, really trying to keep this from becoming a blog about our pet Elephant, the one that stays in our living room and takes away all our nice things to say. But he has a compelling way of getting into all of my business. And when he shows up, all other little things tend to go wrong, which does not help my vocabulary.

Since I have nothing nice to say, I tend to hide, and type, and wander around my house, thinking unspeakable things about that blasted Elephant in his ill fitting muumuu, sitting on my couch and leaving crumbs Everywhere. I know people find the Elephant disturbing, some find the Elephant super confusing, people who know my family well find the Elephant very upsetting. Heck, I think a few folks I know like to ignore the Elephant. I wish I could. Instead I hide, and hope that things will work themselves out.

For the record, for everyone who ever has a friend with an Elephant: we know there isn’t anything to say to make it better, there isn’t any good word that will take the Elephant away…that’s ok. We appreciate any kind word, any little word that lets us know you care. If you can’t talk about the Elephant, that’s ok. We understand. Just being a friend is good enough.

I deeply appreciate the friends and family who shop with me, or drag me out of my house (even as the Elephant is yelling after me), or just talk to me about zucchini. Really. It’s enough.

And then, sometimes, there is a brilliant mysterious moment…

Enter Anonymous Chocolate.

The box arrived with no return label. It was big, and it contained a Styrofoam cooler. I was intrigued. I have kind of a problem with internet shopping (oh, Amazon, my downfall!), but I have managed recently to mostly limit my purchases to books and supplies for school. Certainly uniform polo shirts would NOT come in a cooler.

With a squeak the lid released from the bottom…and there was the Biggest Hershey Kiss I ever saw, full of little Hershey Kisses…next to the biggest Reese’s Peanut Butter Cups I ever saw.

Yes, there was almost an angelic “aaaaaaaaah” in my kitchen.

I lifted up the ice packs, squeaked the rest of the cooler out of the box…there was NO paper, no invoice, no record of who sent this pile o’ joy in a box.

I looked around, as if someone would pop out from behind a door and say “ta da! Surprise!”…but of course no one did.

After a suitable few minutes of almost unspeakable awe, I turned to that bastion of information and networking, Facebook…while folks “liked” my status, nobody ‘fessed up to sending this delight.

My daughters came home from Grandma’s and were instantly agog. My older girl kept trying to figure out WHO could have sent the box.

Finally I had to explain that Someone wanted to do something sweet (!) and kind for us WITHOUT letting us know. We just had to accept the joy and love this Anonymous Chocolate represented, and say a little prayer for whoever sent it to us.

Anonymous Chocolate is a rare delight. The very rarity of it makes it even MORE delightful. There’s something kind of unnerving about it, but in a happy kind of way. Not only was this chocolate anonymous, it was GIGANTIC.

I have to admit, we haven’t eaten it yet. It is sitting majestically on our kitchen counter, a testament to someone who maybe didn’t have anything nice to say either, but used the universal language of a hidden act of kindness to express love.

Thank you, Anonymous Chocolate sender. That chocolate is so big it does sometimes obscure the Elephant…or at least lets us know that whatever happens, we are not alone in this season.

And that is something nice to say after all.