My name is Spencer. Tuesday is my sister. She died of cancer and I want to shave my head to make a difference for other kids with cancer.
Thank you for your pledge.

If you don’t know about St. Baldrick’s, you should.

If you haven’t donated to Spencer, you should.

If you haven’t donated to Team Tuesday, you should.

If you have healthy children at home, go hug them.  Be thankful.  You should.  And then go donate, because, really, you should.

If you want to go bald for Team Tuesday, you can (click on the green Participate with this Team link).

If you want to go bald for a child in your area, you can.

Emily, thank you so much for starting this team in Tuesday’s memory.  Joe, Grady, Kyra, Finn, Keegan, Kevin, Aidan, Brennan, Julian, Cole, Spencer and Mason, thank you for doing such a brave and honorable thing.  You are good people and you are making a difference.  You should be proud.  I know we are.

Julie and Autumn, thank you for your talents and kindness.

Come out to Douglas County Fairgrounds in Castle Rock on March, 19th at 2:00 pm.   Or find an event near you.  You should.

Nothing like a Bloody Mary and mashed potatoes for dinner to put me in a blogging mood.
It’s been a banner week for Neuroblastoma. Celebs are Tweeting and re-tweeting about it and FB’ers are FB’ing about it. It’s very in. Meanwhile, real-live families are watching their children in various stages of intense treatment, or dying from this disease. Or maybe they’re sitting in a trance on their couch because they tweeted and FB’d and watched it and lived it and are still a bit numb. It’s not so glamorous on this end. For us, it’s always “in”.
But I’m glad it’s out there. I think. I’m not Glad, but, you know, whatever. Thanks Tom and Ryan, and Gaga, (or do you prefer Lady?) and Kim (ok, is she really a celeb?) Thanks for spreading the word. We’d really like your money too. You can make a HUUUGGGGEEEEE difference if you cough up a little cash. There are thousands of kids out there with cancer. Aprox 10,500 diagnosed just this year. Your beautiful Hollywood babies might get cancer too someday. You have the power to do something big. We all really should try harder for a cure. A cure that’s not at as horrid as the disease.
Ok, rant over.

Since you’re here, let’s take a look at the rest of the highlights from the RV journey. This is after leaving Florida and heading to New Orleans. I loved New Orleans. I’ve been there for Jazz and Heritage Fest, but didn’t know how family friendly it would be. Very! Go there. Take your kids. Stay here if you’re in an RV. Tres Cool!
Texas, you win for best sunset.
New Mexico, you’ll always be a favorite of mine.

New Orleans, Louisiana

9th Ward

San Antonio, Texas

Kerville

Carlsbad Caverns National Park

Roswell, New Mexico

“America, fuck, yeah!” Go see it. (America, not Team America, World Police)

So…
We’ve been back for 6 weeks and we are still searching for structure and stability. Because life moves fast, we had to jump out of the RV and in to school and work and whatever it is I do with my days.
Head down.
Just keep moving.
It’s good to be back. It’s hard to be back. Tuesday is gone. Her things are not gone.
Piper totes around twin dollies in a purse. Turns out all our dolls are twins. She only plays with them as twins. I’m glad she can heal thru play, but, oh, my heart.
Still one day at a time.
Piper and I went shopping last week.
She threw a penny in the fountain and wished for her back. I threw a penny in the fountain and wished it worked that way.

Layla Grace, Bethany, and Sydney are three little girls who are all in desperate need of prayer tonight. Three of thousands. Neuroblastoma. Tweet that.

-Charles Dickens

Wha?

Yes. We are home. For almost 2 weeks now. We jumped right back in to life, and have not even unpacked the Rig, and yet, Spencer and I took off for 24 hours in Milwaukee. Bear with me. I’ll get back to road stories. But first I need to tell you about this weekend.

This is Pablo. Pablo died seven months ago because he had cancer. Bilateral Wilms’ Tumor, to be exact. There is no known reason why Pablo got cancer, just like there is no known reason why any child gets cancer. I want to know why. For now, we don’t get to know why, so we as cancer parents, Moms and Dads of innocent children who have died, do anything we can. Sometimes “can” means waking up and maybe taking a shower, and other times “can” means throwing, huge, kick ass benefit concerts. Sometimes it means just going and being with others who know and letting them know you know too. That’s exactly what Spence and I did. And this is what Jeff Castelaz and all of the Pablove crew did.

This is why I went.

Because I have absolutely no idea why children are inflicted with, or allowed to succumb to, cancer, but because I know that we were designed for community and fellowship, and thru community and fellowship we can do amazing things, and because I love music and the healing power it has, I took my son to see it in action.

Spencer got to feel a bit like a rock star Saturday night. He was courageous enough to go on stage in front of 900 people and let them, as Jeff said, see what a survivor looks like.

A normal little kid who had to watch his sister die and will now, will never get to be a normal little kid again.

Pablove is amazing.

Pablove is amazing because Pablo was amazing.

On the flight home, I was consumed with thoughts of Jeff and Pablo. I watched Spencer looking out the window. Getting in to the music on his ipod.

Jeff was flying home alone. He won’t get to watch Pablo look out the window of a plane and dream about the places he’ll go someday. Just like I’ll never get to take Tuesday to another concert and watch her dance,

or sleep in a bed with her in a hotel,

or order her a huge plate of room service pancakes.

Cancer took that from us, and it will continue to take that from families, and so we keep doing whatever we can do. You can do something too. You can. What are you gonna do?

Jennifer and Dustin, I’m so sorry you lost Jake. I’m so happy I got to meet you. Margy and Robert, I’ll be holding you and Aidan and Branson in prayer. 3 years. You did it!

Jeff, thanks for being such an amazing force and inspiration. JoAnn and Grady, I hope to give you a hug someday. Keep up the good fight.

Now go read about Pablo.

6th floor, between the inter-coastal waterway and the Golf of Mexico.

days are mostly sunny

yet, there is a constant haze just above the surface

the fog rolls in daily

sometimes you look up and you can see it coming

this huge wall

other times, you turn your back for a minute and it seems to engulf you without your knowing

you can barely see the road ahead

it always seems to lift, but it never goes away completely

it is still beautiful

despite the fog

in the fog

more beautiful because of the fog

and, yet

days are mostly sunny

Ahhhh.  This is good.  Not that we don’t love Asheville (we do), and not that we over stayed our welcome, (we did) but this, right here, in this gigantic copilots seat, is where I want to be.  We are heading down a blue highway to Gainsville.  We are talking about Brittney, one of Tuesday’s very first and most beloved night nurses.  She is from here and would wear her Gators scrubs and talk in a sweet, soothing voice, and make our unbearable nights a bit bearable.  She came on her day off, to sit with us and cry with us, on the day that we learned Tuesday would go home to, Ultimately, go Home.  Even 1,800 miles from home, everything reminds me of Tuesday

We stayed too long in Asheville.  Not that we don’t love Asheville (we do), but because we had some break issues, that apparently, because of the GM bailout and the little guy and antifreeze in the break fluid and The South and a few other uncontrollable things, we added 2 extra weeks to our stay.  Although the stay was too long, it was also a good break.  The kids got a grandparent fix, from both sides, no less, and Charley and I got in a few dates with out them.  (the kids and the grandparents)  Piper had a week of leading around her now 2 year old cousin.  It pains us to see how desperate she is for that little girl play.

We also had a couple weeks in a row to check out a church that was mentioned to me in a comment on this blog.  If we lived there, we would go back again, and again and again, and probably wind up in some sort of sort of theater production and mission trip or the band, and all of it, because we really liked it there.  If you are in Asheville and you like to go to church in a psudo-famous night club, and you love Jesus, but are not so hip on religion or pomp and circumstance, this is the place for you.  I met a follower, of both Jesus and my blog, and I in no way am lumping those two together, in the bathroom while our respective daughters did their thing.

To hear a stranger speak Tuesday’s name and to witness the sadness in her eyes.  I wish it happened more.

C, C and C, Thank you for the heads up.  It was lovely meeting you and the Highland Community.)

but I digress….

Getting back in the RV was pretty seamless this time.  We’ve got our spots and know our routine.  Even the dog settled right in.  We are all happy to be heading south.  Not that we didn’t like the North (we did), but it’s been cold and we need warm.

This is not my writing, but my sentiments.

Lord God we render praise to you as our creator and sustainer, as the spring of life and source of healing.  We praise you with lips that sing, arms that embrace, and feet that dance.  Our praise of you is spoken before the nations and whispered in intimate love.  Our praise happens in rocking a baby, tending a patient, affirming a student, hearing a client, writing a letter, phoning a friend, reaching out, holding, listening, waiting, offering all you have given to us to one another.  We praise you, Lord God, when we remember from whence we have come and to whom we all soon will return.

We praise and give thanks.  Amen

Today, I give thanks for the God given grace, to be able to still have a thankful heart, despite it all.

Happy Thanksgiving.  Now go take a Xanax and try and enjoy your family.

Here are some photos taken since we left Oregon and headed east.  They tell their own story.

Astoria, OR

Seattle, WA

Spokane, WA



Montana, Battle of Little Big Horn National Cemetery


Devil’s Tower, Wyoming


Mount Rushmore

South Dakota



Chicago

Pennsylvania

New York








Washington D.C. We had a surprise visit from our next door neighbors.  It was great fun.  It made us all a bit home sick, too.

I know.  That should be Tuesday, right?        Friends are really important too.

]]> http://www.thewhitts.com/half12/2009/11/new-look-and-a-look-in.html/feed 38 http://www.thewhitts.com/half12/2009/11/disjointed-thoughts-from-a-weary-traveler.html http://www.thewhitts.com/half12/2009/11/disjointed-thoughts-from-a-weary-traveler.html#comments Thu, 12 Nov 2009 03:40:00 +0000 jessica http://www.thewhitts.com/half12/2009/11/disjointed-thoughts-from-a-weary-traveler.html

We arrived in the mountains of North Carolina on Sunday night, after an all day drive from Washington DC. We will stay put at Charley’s mom’s through November. We are approaching 7 weeks on the road and have literally been from sea to shining sea. I’ve not written, mostly because my battery is fried on my laptop but also, because it feels like work, and since most of this trip truly is work, I’m not interested in adding more.

It is good. It is hard. This good/hard has become a common theme for us.

We have been to and through, Rawlins, Wy, Boise, ID, Bend, OR, Portland, OR, Cape Lookout State Park, OR, Tilamook, OR, Astoria, OR, Seattle, WA, Spokane, WA, Coeur d’Alene, ID, Missoula, MT, Billings, MT, Sturgis, SD, Wall, SD, Sioux Falls, SD (Yes, South Dakota is LONGGGGG) St. Paul, MN, Wisconsin Dells, WI, Milwaukee, WI, Fox Lake, IL, Glen Ellyn, IL, Chicago, IL, Howe, IN, Mercer, IN, Landingville, PA, Maplewood, NJ, NYC, DC, Ashville, NC. Phew.

We have battled freezing pipes, we have been totally freaked out, we have gotten stuck, we have had “issues” with our dog, we have flipped out on our kids, we have had “the” flu, we have had major repair work done.

We have seen awe inspiring views, we have seen National treasures, we have been proud of our kids, our selves and our country. We have eaten the world’s biggest cinnamon roll, we have unplugged from tv and turned up the music, we have laughed a lot. We have cried a lot. We are the essence of spontaneity. Good and bad.

We have seen friends that we adore and miss and talk about visiting, but never do. We have sat with them and cried with them over Tuesday’s fate. We have watched our combined children play and become fast friends. We all notice the obvious void. Some mention it. Some don’t. But, we all feel it.

Our boys are so great at including Piper in their play. They are so protective. But, there is a painful, underlying competition for her affection. Spencer feels this the strongest because “Tuesday was his and Piper is Axel’s”. It’s kind of true and it crushes me. I’m pissed that after all the suffering we had to witness with Tuesday, here we are, still watching our children suffer.

“Is this our home?”

“Do we have a home?”

“Is Otto dead?” (after a 4 day stay at the dog kennel)

“Maybe we can have another baby and name her Tuesday.”

“Do we still get to have Christmas?”

Their poor, sweet minds. How are they supposed to get any of this when I can’t even wrap my mind around it. I still don’t know if this is the right thing to be be doing. There has been a lot of yelling. But, there was a lot of yelling at home too. It mostly feels right, but sometimes it feels wrong. Mostly when It’s raining and I’m about to get my period. But it always feels bad when it’s raining or I’m about to get my period. It’s not the RV’s fault.

Despite all that, the kids are really in a groove with one another right now. It’s awesome to watch their imaginations in full bloom. They have built a fort in every state, both in the RV and out. They are growing before our eyes. (Something that we missed all together last year) We are growing. There are bound to be some pains. Charley and I are not in our groove. This makes me sad. We will figure it out. We always do.

Our last stretch, through Roanoke, VA, has set me in a bad place. The last time I drove those roads, I was on a trip by myself with two, fat, healthy baby girls. Life was good.

It’s still good, right?

Despite it all, life is still good.

www.thewhitts.com

p.s. While we have been gone, children are continuing to battle, relapse, and die. What are YOU going to do about it?

www.whatchagonnado.org