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 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.
Posted 3 days, 21 hours ago at 7:18 pm. 19 comments
“Go tell it to your blog.” I just overheard that on Phineas and Ferb, so, ok. Here ya go.
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.
And can it be that in a world so full and busy, the loss of one weak creature makes a void in any heart, so wide and deep that nothing but the width and depth of eternity can fill it up.
-Charles Dickens
Posted 1 month, 1 week ago at 8:17 am. 103 comments
You’re wha? Where? I thought you were in the RV? You’re home? Milwaukee?
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.
We are moving west, after spending a month, hopping around Florida. Hoping is not probably not the best adjective when speaking of RV travel. More like lumbering. Lumbering like a Manatee. We saw a number of these endangered dudes on eco-tours and boat rides. Friend or foe? Florida was good to us and good for us. Sun, water, warmth; for a mountain girl, I feel very at home on the ocean. On the edge of the land, overlooking the vastness of everything and nothing. Mike Doughty lyrics are on continuous repeat,
Let me know your enormity and my tininess
Help me see your infinity and my finiteness.
Standing at the edge of the ocean, that tininess is undeniable. My reminder to surrender any need for control. To be. To still act and do, but mostly to be.
As we drove foam Biloxi to Gulf Port, Miss and now, in to New Orleans, you
get a nice dose of that finiteness. The destruction from Katrina is still everywhere. A permanent scar on this region, despite the rebirth and the perseverance to survive, the scars will always stand as a reminder of the loss.
Kinda like us.
7000 some odd miles
Outside of Slidell, LA.
.
We are moving west, after spending a month, hopping around Florida. Hopping is probably not the best adjective when speaking of RV travel. More like lumbering. Lumbering like a Manatee. We saw a number of these endangered dudes on eco-tours and boat rides. Weird. Florida was good to us and good for us. Sun, water, warmth; for a mountain girl, I feel very at home on the ocean. On the edge of the country, overlooking the vastness of everything and nothing. Mike Doughty lyrics are on continuous repeat in my head:
.
Let me know your enormity and my tininess
Help me see your infinity and my finiteness
.
Standing at the edge of the ocean, that tininess is undeniable. My reminder to surrender any need for control. To be. To still act and do, but mostly to be.
As we drove from Biloxi to Gulf Port, Mississippi, and now, in to New Orleans, you get a nice dose of that finiteness. The destruction from Katrina is still everywhere. A permanent scar on this region. Despite the rebirth and the perseverance to survive, the scars will always stand as a reminder of the loss.
be deprived of a loved one through a profound absence, esp. due to the loved one's death : the year after they had been bereaved | [as adj. ] ( bereaved) bereaved families | [as plural n. ] ( the bereaved) those who counsel the bereaved.
It's ok to reach out to us. You are not bothering us. It's ok if you can't. If you don't know what to say, "I'm so sorry you lost Tuesday" , with, or with out a hug, is all we need. It's ok if you say something and I start to cry. You didn't cause it. Death caused it. You didn't "remind" me of her death, because not a second goes by that I am not thinking of her. Aching for her. It's ok if you see us out and we are smiling and appear to be doing well. At that moment, we probably are doing well. Other moments we are doing so, absolutely, not well. It's ok if you said the wrong thing or didn't say the right thing because there is no wrong or right thing to say. There is no wrong or right way to BE when your child dies. There is no right way to do this. We'll figure it out together.
