So...Now What?

May 31


So today is the Last Day of Brain Tumor and NF awareness month.

Tomorrow it will be like this whole ugly business never happened, especially if I go and blog about something like Jersey humidity or what kind of cake I am craving.

That would almost always be yellow cake with buttercream icing, just as an fyi. As much as I love chocolate everything, I prefer yellow cake. You’re welcome.

So, now what? Now, you few brave souls who slogged through this tale of woe, now you are left at June 1, the summer shining not too far off. You also are probably totally like “HOLY CRAP, no WONDER she is a terrifying Jersey-girl-snark-attack-amazon-beast woman most of the time! She used to be so timid!” as you look for the nearest emergency exit. Heck, that’s how I feel after writing this for a month.

Even I didn’t totally realize how bad it was, these last nearly 9 years. Yeeks.

You do whatcha gotta do, you know?

G, May 2013

And once you get past establishing that yes, you are out of range of my scariness, you are probably like, so now what?

Well, I heard on Oprah radio this morning (don’t judge), “pain brings purpose” (it was an interview with Fran Drescher, she was talking about surviving cancer). I know for our family, pain DOES bring purpose. The two times I ran half marathons were fueled almost entirely by my anger and pain. And Clif bars. Ok, and hazelnut coffee. Our Coffeehouse gives purpose to our pain. Dave jumping in the Atlantic for Camp Sunshine is fueled by the pain that gains us entry to that remarkable place (and gratitude for the lifeline Camp has been for us). We’ve sold bracelets and chocolates and random tchotchke to help fund research for a cure.


R, May 2013



For us, DOING something makes us feel less like victims of NF and low grade brain tumors and more like recruits in the ongoing struggle to make these things STOP hurting people we love.


So…what can we do?

Well, we try to support groups doing research. The Children’s Tumor Foundation (www.ctf.org) is a good place to start, and the NF Endurance arm of CTF has been our go-to fundraising thing for the last several years. Come run with us. Ok, rephrase, come run with Dave, come “run” with me (I run /walk, using the Galloway method of surviving races, manage to do the Philly half in 2:15 this past year).

CTF also has NF walks around the country (if you don’t even feel confident “running” like me…although confident has never been my problem).

The NF Family Association at CHOP provides support and information to NF families who are patients at CHOP. This is a new organization, and I am really excited to see what they are going to be doing. This is sorely needed at CHOP. You can find the NF Family Association on facebook.

The Pediatric Low Grade Astrocytoma Foundation ( www.plga.org ) specifically funds research on low grade brain tumors. This amazing organization was PARENT initiated (talk about giving pain a purpose!) and has made huge strides already in understanding and targeting low grade tumors. There are many NF applications to the work of PLGA, and I think we will be looking more in this direction in the future.

PLGA sponsored the sorafenib trial; while the trial was a disaster (I believe it closed within a few weeks after G’s catastrophic scan, other kids had similar yikes), the fact that this organization is funding low grade specific therapies so fast is amazing and a great sign of hope. We have no regrets about trying this experimental drug.

We also try to support the places that give us those lily pads, those moments of hope: Ronald McDonald Camp, www.philarmh.org , Camp Sunshine, www.campsunshine.org , and the Friends of Jaclyn, www.friendsofjaclyn.org , Caring for Kids with Cancer. These make Genna’s life happy. We support them (and you can too). The Children’s Brain Tumor Foundation, Supersibs, the Race for Hope folks at the Brain Tumor Society, the 46 Mommas Shave for the Brave… all of these have meant a lot to us in our journey.

So we try to give back. I’m not going to lie…this journey is long, and sometimes the dull ache makes jumping in very difficult. Those awful pain moments provoke me to do silly things like sign up to run 13.1 miles all on one day. The dull ache months are hard to overcome. But we have to try and keep moving. We aren’t alone in this, you know.

And ultimately, we are so grateful. Even as we have lost so many friends (even within our own family), we have gained so many in the NF and brain tumor community. We have experienced amazing love from people we’ve never met. We’ve come to understand that God is always with us, even if sometimes it seems like we are alone. We have overcome our fears and tried to parent in a set of circumstances no “What to Expect when You’re Expecting” book even touches.

We have lost too many children to NF and brain tumors. For them, we have to keep going.

For them, we have hope.

For our Genna, and our Rosie, and yes, my husband Dave, we hope.

To quote one of my favorite singers, Sara Groves, “hope has a way of turning its face to you just when you least expect it”…

I hate surprises, but being surprised by hope is my favorite thing ever. I pray that as we enter our 9th year of brain tumor and nf struggle, that we are surprised by hope frequently…because that is a surprise we love to share.

Peace out, friends.

kc

The Cams Crew, May 2013

"We Must Labour to Be Beautiful"

“To be born woman is to know—

Although they do not talk of it at school—

That we must labour to be beautiful”

--Adam’s Curse, William Butler Yeats

When Yeats wakes me up at 6:30 am on a Sunday, I have to acknowledge that—even though nothing here is really all that original, and as usual it’s too long…but it woke me up this morning. So here goes.

In the last week or so I have had many striking encounters with beauty in the midst of lots of not beautiful. The mind-numbing context of our family’s daily realities can’t be denied, and I hate referencing it so often here (and I leave out an awful lot), but it truly covers every aspect of every day of our lives like a blanket of deep snow, cold and painful. Still, to paraphrase Superchick, there is beauty in pain.

Not that any of these things are PRETTY. Nothing about pediatric oncology or its effects on a family are PRETTY. But the warrior children I know are beautiful, 1000%.

Oh, the difference between pretty and beautiful. As a teen, like so many other teens, I so desperately wanted to be pretty , in those days LOooooooong before Zoey Deschanel made “adorkable” even a concept. Back then, it was just dorky. Meh. Today, kids are relentlessly bombarded with plastic representations of “pretty”—I get so irritated with the tv shows that reinforce the impression that ALL 7th graders have fabulous wardrobes and perfect hair and makeup—the pressure is worse now than ever. And even us older folk are constantly shown “real” people who are desperately aiming for pretty all the time through endless pursuits of botox and bigger bosoms and bedazzling.

( thanks to Kathy & Michelle who inspired that burst of alliteration) 

Don’t get me wrong; I love fashion, I haven’t been naturally brunette in 10 years, and hey, if you want to de-wrinkle via injections, go for it—but it’s not the key to happiness or the way we as women have to be defined. Now that I am old (and wrinkly, it’s true), I know that pretty ain’t gonna happen, and that’s ok, because really, does it matter? But maybe I can ”labour to be beautiful”… the real kind of beautiful…

BEAUTY is so deep, and so broad in scope. Beauty is powerful. Not to diss the Bible (I am so not dissing the Bible), but TRUE beauty isn’t fleeting. Beauty really does come from within. Beauty is mighty.

A week or so ago I read about a beautiful baby, a baby named   Pearl Joy Brown  who has a rare, unpronounceable disorder that may very well cut her life short. The fact that she survived to be born is something of a miracle, and the miracle of her life only makes her more beautiful. I was so struck with her beauty and her parents’ story of choosing hope in the face of overwhelmingly grim statistics—not an unrealistic hope of miraculous cure, not a denial of how dark some of their days are, or how precarious Pearl’s life is, but a hope that love and the inherent dignity of every human life would prevail no matter WHAT the medical outcome for Pearl. I shared Pearl’s story with my students as we talked about ethics and life issues in class…and how honoring the humanity of every child, healthy or no, special needs or no, is always beautiful, even as some days it is painful and brutally hard .

With some of the materials we covered in class this week, I also remembered again the intense beauty of Mother Teresa—that teeny tiny Albanian nun whose ministry of love transformed (and continues to transform ) the lives of so many people around the world. Mother Teresa is beautiful because of her words and ideas and her work, her love in the midst of the spiritual desert that no one knew of in her lifetime. I only got to see Mother Teresa once in my life, and even as a teen, I knew as soon as I saw her that I was in the presence of a saint, someone whose generosity of spirit and CHOICE to love changed the world. She literally had an aura of beauty and quiet power, she radiated love. 25 years later, I have not forgotten what that was like, to experience being in her presence, even from afar…

And yesterday…I saw pictures of a friend, glamorous, gorgeous photos of a friend who after years of battling the same medical demons with her daughter that we fight with our daughter (and with significant other complications), has had to enter her own battle with cancer.

SAY WHAT, WILLIS??
Yes, THAT was a moment in which God heard a lot of unprintables from me. Multi-syllabic combinations of extremely unprintable words used as every part of speech. I used to teach grammar, trust me, I hit Every. Part. Of. Speech.

Anyway, my friend is through chemo, and her teen daughter, an extremely talented photographer, took these pictures…

The most beautiful, breathtaking pictures of a woman I have seen in a long time.  And this is only one of a half dozen equally amazing shots.




photo credit Allie Broeniman.
Yes, her momma is gorgeous, and Allie has mad skillz.


Pure beauty on digital film. A beautiful woman who HAS “labored to be beautiful”—not by putting on makeup (although her makeup looks great), not by finding a wig (she doesn’t need one, she rocks bald like nobody’s business), but by LIVING. By just embracing the miracle of life each day as it comes.
These powerful images of grace, and humor, and grit, and toughness ARE beautiful in the traditional sense—she looks fabulous—but they are SO DEEP. This beauty pours out of my friend from every…um, pore. These are victory shots, because these photos show a woman who has triumphed in this moment over extreme adversity, with the love of her family, the support of her friends, and the grace of God.

You may have heard the roar—she is woman, and these photos celebrate the genuine beauty of what that means. Dang, I am blessed to be her friend.

In these days where I feel mentally like a shriveled crabby crone (think Miracle Max’s wife from Princess Bride—that’s what I feel like), I have to try and reach for the beauty that we get each day. Every day, every chance to take another breath—beauty. I have to draw inspiration from these examples of beauty and figure out how to channel that EVERY DAY.

It’s a labour (yes, with the extra u—it is way more than a labor without a u to embrace the beauty in each day), that is for sure. Now to figure out how to do it…beauty isn't passive, it's active...it's decisions and choices and living each day.

And THAT is what woke me up too early on a Sunday morning. The End...or really...another beginning...

Perspectives in Sparkly Blue

“these wounds won’t seem to heal
This pain is just too real
There’s just some things that time cannot erase”
My Immortal, Evanescence

Perspective.

The last year or so have been pretty challenging here, and not necessarily in the obvious ways we very publically share. Without turning this into a moment of Oprah (unless someone wants to give me my own Zeppelin? No? darn. ) , recent days and weeks and months have not been the most woohoo at the Casa Camiolo. That is what it is. But in this week, which is the holiest of our church year, the pain that I can’t seem to shake has been particularly intense. And for whatever reason, the Yeatsian season of our life is wearing at me … things fall apart/the centre cannot hold …

So it’s been a bad week. Cue the old American Idol Go Home song and I’d have myself an afterschool special . Yes, I am THAT old. ; )

I have been trying to deep clean the layers of stuff that mark, like an archaeological strata, the seasons of my life. We have sorted out the last bit of extra hats from when one of my children needed hats to cover her scarred and patchy head—some will go to other hospital kids, some that were more worn will go to charity. I got rid of Lyrics of the Middle Ages. Love the Middle Ages, hated that class, really hated that poetry. Heck, I even threw out the old instant oatmeal that I could not remember buying…the date on the one box was Jersey Board of Health worthy, Yikes! (I swear, the kids USED to like oatmeal!). We’ve purged some of the Kid On Chemo! Stuffed animal collection, sand-decorated candle holders from a long ago Good Mom craft project, and bags of clothing that just needed to go.

In a particularly difficult moment yesterday I tackled the drawer on my little nightstand. Loose change, several safety pins, a thimble (?? No clue where THAT came from), 42 holy cards (I have religious object guilt, I can NEVER throw away a holy card or a funeral card), a random inspirational book, and a pair of nail scissors managed to all live peacefully together in there. I also found a paper on which I had printed out one of my favorite depressing poems.

Yes, I have favorite depressing poems. Sometimes poems just say things more effectively and less offensively (oops), and when I am having a moment of despair and isolation, Gerard Manley Hopkins is my main man. His poetry of faith and despair and hope and hey nature is cool have gotten me through many a tough time (particularly during the Kid on Chemo season).

So there was this paper, printed out

I WAKE and feel the fell of dark, not day.
What hours, O what black hoürs we have spent
This night! what sights you, heart, saw; ways you went!
And more must, in yet longer light’s delay.
With witness I speak this. But where I say 5
Hours I mean years, mean life. And my lament
Is cries countless, cries like dead letters sent
To dearest him that lives alas! away.

I am gall, I am heartburn. God’s most deep decree
Bitter would have me taste: my taste was me; 10
Bones built in me, flesh filled, blood brimmed the curse.
Selfyeast of spirit a dull dough sours. I see
The lost are like this, and their scourge to be
As I am mine, their sweating selves; but worse.

Yes, it’s a perky piece. I can relate to insomnia and the “Is anybody OUT THERE?” vibe.

But there, at the top, just touching the top line of the poem, one of my children had stuck a sparkly blue smiley face sticker.

I know the poem well (it’s been living in that drawer for 6 years!)…but the smiley face sticker was a new moment. I found that festive little smile, left by my loving child, to be such a contrast of hope to the words of that poem, the words of my heart.

I refolded the paper, and put it back in the now marginally more organized drawer.

The day was still pretty rotten with patches of yikes, I won’t lie. But in the back of my mind, I can still see that little smiley, and I can imagine my little bud putting it there and tucking it back into my drawer…and really, at the end of the day, isn’t that the perspective of Holy Week? Piles of uber-yikes, of feeling utterly alone and lost and lamenting…and there, over the horizon, there is joy, just the smallest hint of joy, stuck there by somebody who loves us.

Have a blessed Easter, all