History

Sunday, December 28, 2008 11:17 AM CST

Hi, all…

I hope everyone is recovering from days of festivity. I am really tired, but the holiday was good. Genna did great singing with the children’s choir at church (although she seemed strangely nervous! That’s a new one…and she didn’t bellow, which was nice…AND she managed to clap at the same time as everyone else, which made the song less entertaining but was musically preferable!) ; ).

Christmas Eve all of the Appert sibs were together (except John...we missed you!)…which was wonderful, hasn't happened in over a year at least.

Rosie and Genna came storming into our room at 7:45 am on Christmas morning; apparently Dave told them that was ok! Rosie started singing (while sitting on Dave) “Wake up, my babies, it’s Christmas Day! Wake up, my babies, it’s Christmas Day!”. Yawn. We had to Drag Andrew out of bed, a weird first.

The morning was peaceful and fun. Rosie was a little draggy in between presents, and Genna was Pushing Things Along Emphatically (we had to tell her to chill), but everyone was happy with Christmas Goodies…

And then we gave the kids a Wii.

I’ve always been a No Video Games Mom, a few computer games are ok, but we’ve limited it to that…long story, but anyway my kids had no clue they were getting a Wii. I’ve heard a lot in BT circles about how Wii can be helpful for our kids, and so I figured for G this would be good. Eventually I hope to save up for the Wii Fit for both of us! ANYWAY, the look on Andrew’s (aka Mr. All I Want In Life Is a Video Game System) face was so priceless (I put the video on facebook)…Rosie was jumping up and down…I got a spontaneous hug from Andrew, Genna too (which is less of a newsflash)…it was pretty amazing.

It was one of those classic Christmas moments. I’m not sure I’ve ever pulled something that monumentally surprising and exciting off. I didn’t realize how shocked they would be, I thought they were suspicious…apparently not! And Dave was nearly as enthusiastic about the portrait of the kids (I’ll post a copy soon)…

Genna is quite good at bowling…! Strike!

We then started to finish up prep for all the Camiolo/Gallic crew to come for dinner…and Rosie threw up. Uh-oh. A bunch of calls and some quick clean up, and everyone was still ok to come for dinner. But poor Rosie was so sad to be quarantined. At first we thought maybe she had had one cookie too many, but she had refused breakfast, and then she got sick again…it was officially the stomach bug. She was so sad…”I was desperate for this day!” she said. We set her up in her bed with the laptop and her new movies (Babe), and we took turns checking in on her. It was kind of a bummer.

Otherwise dinner was super nice, delicious, and fun.

Friday we did NOTHING. Rosie was still pretty run down, my project for the day was getting her to drink anything…I was pretty concerned late in the day that we might need to get her to a doctor, but then she started drinking more. By yesterday she was a lot better, I roused myself to go to Target for half price wrapping paper (and way cheap Cadbury balls…mmmmm). Then off to Cams for a Christmas shindiggity with the extended family. It was great to see everyone, especially Grandpa N., busted out for the occasion!

Today is freakishly warm, I just forced Genna to go for a walk. It’s not a great workout for me, more an exercise in Selling a Few More Steps, distraction 101, and Cheerleader Camp. G obviously inherited my enthusiasm for exercise…ugh. Now she wants lunch.

My brother left this morning, which is sad, it was so great to have him here. The room worked out really well for him. My sisters are still home a few more days…and then we’re into a new year.

2009 alarms me a bit, but I’m trying not to think about that today….yes, we are within a few weeks of scan day. I’m trying to find a hotel that isn’t too expensive. I feel guilty staying at Ronald McDonald House, and if Andrew decides not to come (we gave him the option) I can get a cheaper hotel (ie. smaller room ).

Anyway, I hope you all are well. If anyone needs a cookie, I still have piles!

Please pray for Angel Hadley’s family…and for David Bailey, Ryan, Devon, Carly, Drew, Nora, Gabbie, Katsie, Erin, Charlotte, Carly x2, and so many other kids. Brain tumors and NF don’t take Christmas break, unfortunately.

Wishing you all peace,
Kristin

Wednesday, December 24, 2008 8:15 AM CST

MERRY CHRISTMAS, ALL!

Wishing you all a blessed and merry Christmas (and a happy Hanukah to my Jewish friends)…Emily got home around midnight last night, I am actually about 10 minutes from being done with the kids’ ornaments…Dave is at work, so we’ll be busy before church this afternoon.

I just want to thank you all…especially the RU Lacrosse team, the card was lovely and Genna loves every post from you (I read them to her)…and to our friends far and wide…we are, as always, so grateful for you.

I’m also kind of glad that on our Christmas letter, in Rosie’s list of things to be thankful for, I was 3rd after Splashy. Hey, Dave was 4th! Splashy the orca goldfish is pretty impressive. We have a lot to be thankful for.

I got a new Christmas CD this year (ok, I got 3 new Christmas CDs, it’s a compulsion…ok, 4)…and the first song was so beautiful, a moving arrangement of “I Heard the Bells” (aka a non-traditional version)…and it seemed kind of appropriate for the sort of December I’ve had here…and really, on a holiday that’s all about a very special child and the Gift He was to all of us…well, a caringbridge page about my child—my children, really—seems a good place to just reflect on hope…on trying to hold on to that certainty that even if things go horribly awry here (as they ultimately did for that Christmas child), we have a future full of joy and reunion.

I struggle a lot with holding on to that…let’s be real. You all know that. But I know, deep down, that we do have hope. And Christmas is about the joyful promise that gives birth to that hope.

So even though we’ll start the New Year off with scans and yikes and medical merriment, I have to hold on to that hope…and this Christmas, well, I’m trying hard.

So thanks, all…and Merry Christmas. Don’t lose hope. That way if one of us holds on to it, we can help the others of us when hope gets slippery and we start to lose our grip…

I Heard the Bells on Christmas Day…by Casting Crowns

I heard the bells on Christmas Day—
Their old familiar carols play—
And mild and sweet their songs repeat
Of peace on earth good will to men.

And the bells are ringing, “peace on earth.”
Like a choir they’re singing, “peace on earth”
In my heart I hear them, “peace on earth, good will to men!”

And in despair I bowed my head,
There is no peace on earth I said
For hate is strong and mocks the song
Of peace on earth, good will to men.

But the bells are ringing, “peace on earth.”
Like a choir singing, “peace on earth.”
Does anybody hear them? “peace on earth, good will to men.”

Then rang the bells more loud and deep—
God is not dead, nor doth He sleep!
The wrong shall fail, the right prevail,
With peace on earth good will to men!

Then ringing, singing on its way…
The world revolved from night to day,
A voice, a chime, a chant sublime,
Of peace on earth , good will to men!

And the bells they’re ringing, “peace on earth!”
Like a choir singing, “peace on earth!”
And with our hearts we’ll hear them!
Peace on earth good will to men
The life the angels singing, “peace on earth!”
Open up your heart and hear them…
Peace on earth, good will to men!

Merry Christmas, everybody…and peace.

Kristin, David, Andrew, Genna, and Rosie

Tuesday, December 23, 2008 9:21 AM CST

Merry Christmas, all…well, almost.

I know it’s still a day away…I kind of figure Christmas starts once we head out to church tomorrow late afternoon…but things are a bit crazy. My sister is STILL trying to escape Portland, Oregon. If the airline had just said “we are clueless, ice, help, help!” it would have been ok…but they weren’t telling anyone anything, delayed the 2nd flight 6 hours and THEN said, oh, yeah, cancelled…and hid. Literally, no one was there to help Em.

At least Cath & Rich made it in ok from LA and Miami, respectively, but Em’s Northwest Captivity has put a shadow over things the last several days. It’s been VERY hard to find the fa la flipping la.

Genna asked if I was excited for Christmas. I had to say no…but I love Christmas and I want to be happy about it, I told her I’m hoping I will be on Christmas Day. She was ok with that. I do hope I find some blazing Yule and such. Figuratively speaking…

In the words of Rosie, we need some “oh come, oh come, Emmanuel, and rescue Captain Israel!”.

In about 2.5 hours the kids will be home, and we’ll get a move on the last huzzah of cleaning and cooking and wrapping. I am NEARLY done with ornament #3, staying up obscenely late trying to get Em a flight has me riled enough to be awake to cross stitch at midnight. I know, every year I say this, but I am determined to NOT be finishing these at 10 pm tomorrow night! : )

Rosie told me this morning that she got me a hippo for Christmas, a running gag with my kids. I sort of yawned a “ooh, nice”, and she told me it was gigantic, but it would be ok because she got it from niceanimals.com …?? ; ) say what?

Genna is rejoicing in getting to sing at church tomorrow. She is Very Enthusiastic about singing…and has gotten better at singing something near the notes of everyone around her. I’m proud of her…she has amazing joie de vive. Is that spelled right?

Ok, must run, but I figured I left folks hanging with the Em saga. It’s been so nice having Rich here, and then Cath yesterday, even if we are FREEZING here. My kids love having everyone home…the twins are back from college…Meg & Mark & kids are coming for dinner tonight…please pray Em can get out on that flight today. She is booked on 3 flights now, I think, to make sure she gets on some plane somewhere. Ironically, her luggage is in Newark! Don’t even ask. Maybe she should have hidden in her suitcase…especially since flight #1 today flies into LaGuardia, yuck. (Long Island…NOT close, and it’s at 10 pm).

I hope everyone survives these last 2 days…Christmas is coming, and if there was a goose here it would certainly be fat. Or Phat, as Rich would say. ; )

I’ll try to post something Christmasy-er tomorrow night, I have a thought (hey, no surprise, it happens sometimes).

Peace,
Kristin

Friday, December 19, 2008 6:27 PM CST

Saturday quick prayer request: please, please pray we can get my sister Emily home...she is stuck in Portland, Oregon, and her flight was cancelled...and there are no other flights...we are so sad, we are searching like crazy to try & get her home...please, if you can, pray that a flight for tomorrow appears...we haven't seen Em in 6 long months... : (
I am so bummed...:(

thanks...
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Happy Friday…

Happy SNOWY Friday!

Ok, so I haven’t exactly been full of tidings of comfort and joy…I know. As usual, I feel bad about that…while still finding it difficult to summon up a whole lot of ho ho ho.

So here’s my all over the place attempt at being perkierish.

The snow was a nice diversion…now it’s sleeting (yuck), but we did get several inches of snow, our first real snowfall. The kids got off from school, even though it wasn’t snowing this morning! By 10 a.m. it was pouring snow, so good call by the bus company. The girls played outside a bit. I love seeing kids in the snow.

We also realized that Andrew’s insane growth spurt left him without boots. Even Dave’s boots were just barely big enough. Ugh. When we were decorating the tree on Monday I noticed that Dave has about an inch and change on Andrew…EEK times 42 million.

We have made a bunch of cookies, and today got the cookie dough truffles done. Dave has gotten home from work much earlier this week, and we finally finished the guest room for my brother…which is good since he’s coming tomorrow. Hopefully the weather won’t be an issue…delays today at the airport were 5.5 hours. Eek. I’m more concerned about my sisters flying home on Saturday and Sunday from out west, the weather is supposed to be awful everywhere.

G asked my mom today what time they had to pick Emily up at the plane station… ; )

My heart is so much with Hadley’s family, the weather in Portland has been a mess too, I just kept thinking of them all day…please pray for them.

Ok, tidings of joy…I’m trying!

Rosie sat next to me tonight and suddenly said “Ack! I think I pushed out my tooth!”…and yes, there in her hand was a little tooth! Tooth #2…hooray for Rosie! She had a close encounter with a seat belt buckle on the bus yesterday, courtesy of a cousin (Rosie was horsing around too, I think)…she has a nasty welt right in the middle of her forehead. Now she looks a bit like a prize fighter… : )

We had one odd moment on the weekend; G’s hand swelled up. It was bizarre, Dave brought her home from Andrew’s basketball game and it looked like she was getting balloon fingers, then hand, then wrist... Yikes! I called my sister (nurse practitioner), got the info on yes, I can give her Benadryl…and within an hour G was much better. We don’t know what caused it, which I don’t like, but it ended well.

An insurance lady called today to see how G was doing, get some history…not sure Why she called today…she obviously didn’t know any of the words I had to use to answer her questions, but there’s no way around certain terms. It was a weird conversation.

We are going to watch Muppet Christmas Carol tonight, I think…it is in fact “the season to be jolly and joyous! Fa la la!” , so I should go get festive. Actually, I should cross stitch, my tradition of an ornament for each kid is about 1.5 ornaments shy of happening this year! Argh!

We saw Charlie Brown Christmas last night, finally…I love that, and my kids love it. That’s a fa la la la.

But I am so grateful for all of you…and for my kids, even though they do rather frequently make me berserk. Thanks especially to the Kirkpatrick church folks who sent my girls cards…I have no clue how you know us (an RU connection?), I’m sorry…but thank you, that was sweet. I do love Christmas cards…families together, kind of what Christmas is all about. I do hope my sisters and brother get in safely this weekend.

Uh oh, Dave just asked if I’VE been watering the tree…oops. I thought HE had been watering the tree. Now he’s muttering about killing the tree…fa la la.

I still have 2 more bags of Cadbury balls…

Maybe I’ll just add fa la la to every sentence. That perks things up…”Clean your room! Fa la la!”…”Where’s the remote—fa la la?” …”Stop smacking your sister’s head! Fa la la”…hmmm.

Well, I hope everyone is safe & warm & peaceful these days before Christmas. I think of so many of you so often…fa la la.

Peace,
Kristin

Wednesday, December 17, 2008 9:42 AM CST

Hi, all.

Figured I should say something, things are just crazyish here, but hopefully settling down a little. Please pray for the Fox family as they lay Hadley to rest on Friday (and for the visitation tomorrow). Rosie saw me on their page yesterday…and G came over and asked…

Nowhere to go with that.

Anyway, we do have a tree in our house, Dave finally got past December 15, I had one day of feeling like road kill (like I have time for that now?), we had one only sort of successful Ikea run (note that online stock checking isn’t accurate, son of a frim fram, but at least now my brother will have something to sleep on when he’s here!), Andrew had a basketball game, Genna went to a party…we are nearly done with shopping, just a few little type things to pick up.

I am trying to get festive. I haven’t even listened to much Christmas music, alas. I only have about 9 cookie types done, but I got the rest of my ingredients today. We did get a couple of inches of snow last night, so everything looks pretty…although now I think it’s raining a bit.

Andrew is home with a bad cold today.

In one oddly good note, Rosie can hear our tv when it’s off but not off…when the Fios box is off but the tv is on, there’s no picture, just this weird sort of electronic almost noise. So high pitched it almost can’t be heard (Dave never notices it). Rosie notices it every time she enters the house. Considering she 2x flunked the high frequency part of her hearing test, I find this to be a promising development.

She saw me looking at a picture on Facebook last night…some cute kids who belong to an old friend. “Who has cancer, mom?” she asked…I explained that none of these kids have cancer (imagine that, people online who aren’t sick? Sigh). She said, “I don’t have cancer, I have a brain tumor.” I kissed her head and told her she didn’t need to worry about that right now. Being 6, she proceeded to Not Worry!

Don’t you occasionally just wish to be 6, at least the Not Worry part of 6?

Genna is trying really hard on the food front. It’s just so hard to be active when the weather is so blah…I haven’t exercised in like 2 weeks, I feel like a blob. And it’s been one of those weeks, Grinches popping out of the woodwork. Different areas of my life, but oh, the Grinchiness! That just adds to the blobness of things.

Only a few more days until 3 of my far flung siblings come home…we are so excited, we miss everyone terribly.

I have to go wash the floor, even Andrew acknowledges it’s gross, and I have to bake a couple of batches of things. I am tired.

I did find the funniest thing ever, our newspaper had an article about a mom who saw a need for festive Jewish music (I do enjoy a round of “dreidl dreidl dreidl” occasionally)…I now have “Funky Gold Menorah” stuck in my head…she has a song about “Oy Vey” (“they’re out of crème brulee, and it’s only Monday! You feel the opposite of Hooray just say Oy Vey!”) and Bagels. Her music made me smile in the middle of a craptastic week…www.mamadoni.com

Anyway, we are alive. I hope you all are doing ok getting ready for the holidays. To our college friends, good luck on finals! And happy birthday to my brother, John, and to my friend, Loice. I hope you find some serious cake.

Wishing you all peace in this last week and a bit of Advent.

Peace,
Kristin

p.s. if anyone is on Facebook, you can actually see video of my kids, which is kind of an odd experience.

Friday, December 12, 2008 10:40 AM CST

Hadley earned her wings early this morning...

you can love a child you never met,

you can draw strength and support from a mom across the country.

you can see the world as more colorful and alive
because of a little girl you only know through pictures and stories.

your heart can break in more than a million pieces,
when you thought it couldn't happen again,
how many times can this happen?

and not to Hadley, not to Angela & Brandon,
Keegan and Liam.

our scan twin for so long...
our buddy in flunking chemos and trying again...
our parallel princess from the West,
all sparkleys and songs and funny sayings...

the first little girl I knew like my G after diagnosis...
the first mom to tell me we would be ok, we'd get through those early dark days.

sweet Hadley, fly free...

Angela, Brandon, Keegan, and Liam, our hearts are with you.

please pray for their family.
hug someone.
and God help us, let's find a cure. insert unprintables.

peace,
Kristin

www.caringbridge.org/ca/hadleyfox

Tuesday, December 9, 2008 9:56 AM CST

Tuesday late: please pray extra for Hadley & family. please...k

Hi, all—

I have no time today, but I hate leaving the same update up too long—and my brain gets full. Way, way too full, which is not good for the humanity I live with, so I need to write here!

The room is painted…not put back together yet, I still need a bookshelf, but I can’t lift the Ikea shelf by myself, and Dave is working past midnight now (just the last few days), so I’m not sure when I’ll finish. I’ve been finding interesting stuff…

*Old pictures. Kind of bittersweet…I feel like I don’t remember when Genna was little, and that is killing me. It’s like my brain is short circuiting somehow. She was so small when we first started going to CHOP…which coincides with when I stopped putting any pictures in albums!

*Weird Notes…I am the queen of writing bits of information on bits of paper…found one from a day in clinic—November 2, 2004…my 6 year old Genna sat on the playroom floor with a Magna Doodle. “Mom, how do you spell chemotherapy?”…I spelled chemo for her, and she labored over writing it…then with one swipe, made the word disappear. Next, “Mom, how do you spell vincristine?” …she worked through that, then carboplatin…then Swipe! They were gone…

And my heart was breaking, wishing it was like that, wishing so desperately we could just make the nightmare go away…we had only been in the battle for 2 months, we had no idea how much worse things would get.

It was hard to find that note. Really hard.

*Old Teaching stuff and writing resources, from my life Before.

Painting the room was the Easy part, I guess.

I am so behind on all things Christmas, I have baked ONE batch of cookies. Yes, I usually make between 15-20. I have made one. And Andrew did most of that! Sigh.

Genna is struggling a bit with food & activity. It’s like the time change zapped her. But she is happy with school, and obsessing in what I guess is a good way over gifts for people. She is beyond thrilled because the kid’s choir at church is going to sing at Christmas Eve Mass. She is also excited to have a party to go to on Friday, exciting stuff at the Casa Camiolo.

Andrew started basketball this weekend, and got a haircut. So anyone who gets our Christmas card (when I send them…alas), he knows his hair was CRAZY long in that picture. Now he’s a tad annoyed that it’s shorter than he wanted, but he looks cute. I am still a little alarmed that he’s turning into Mr. Suave.

Rosie…tells me about 3 times a day how many more days until Christmas. Thank you, sweet Rosie. She also has been having a lot of trouble sleeping…not sure what that’s about…but she comes and climbs into our bed…and turns into a Ninja, that girl can kick covers 10 feet off while in a dead sleep. At least SHE’s sleeping at that point, not so much for me & Dave!

We did manage to get Dave a great present yesterday, so I have one thing DONE for Christmas.

I also got the official eyeball report from our recent CHOP visit. I have a question or two about G, I’m thinking “did not see any of the color plates” is perhaps a problem? But G DID finally get new glasses, with these funky magnetic sunglasses, I’ll have to post a picture.

I felt bad and told someone I’d substitute today at school, ugh. I have to go dig out teacher clothes. Next time I give my one friend the pep talk about “It’s Ok to say NO sometimes” maybe I’ll listen…ugh.

We did get our tree in record time on Saturday…literally like 5 minutes after getting there we saw a nice tree, all agreed, and got it! Woohoo! We hope to put it up this weekend. I’m trying to take a few more decorations out each day, at least we have gorgeous door wreaths courtesy of a Boy Scout Wreath sale at church, which saved me 6 comparison shopping trips to find the best deal.

Sunday my craft thing was ok…I only sold about ½ of what I usually do there, it was alarming. Oh, well. I still have to put everything Really Away. At least I did cover the one Great Woohoo gift for my kids.

Ok, if you made it this far through the mighty ramble, congrats. I feel a little better…we have friends in such dire places right now I’m having some trouble holding it together. David Bailey is preparing for a mighty battle…Hadley is nearing the end (can’t even type that…SHOULD NOT HAVE TO TYPE THAT), little Devon from Friends of Jaclyn (who I only know by sight from the FoJ page, and because she was adopted by a Philly team I had read about her)…she earned her wings on Friday. Gabbie and Drew and our buddy Devon and Katsie and Nora and Mrs. M and baby Abby…it’s just hard.

I’m so grateful, and so sad at the same time. But I guess that’s kind of how life is.

Wishing you all peace in this hectic season…hug someone you love. If I’M telling you to hug someone, you know this is serious. So seriously, go hug somebody…to quote David Bailey…Love the Time.

Peace,
Kristin

Thursday, December 4, 2008 3:36 PM CST

thursday night: please pray for Hadley tonight...and her family...time is growing short. www.caringbridge.org/ca/hadleyfox

I am going to go punch a hole in a wall or hide under my bed, maybe both.

I hate F^&*(@&*)^$G brain tumors. hate hate hate hate hate hate....

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Hi, all—
Happy gloomy Thursday.

Just a quick whatever. Scan day is January 21. Ear check/doc visit is January 22. Apparently Rosie will have a longer scan due to some new imaging study with her plexiform (I read about this on the CTF website, just didn’t expect the scheduler to tell me R needed 2 MRI slots…sigh…although glad she told me, otherwise come hour 2 I would be pacing the room watching for random neurosurgery people to come blitzing by). We will stay at a hotel in Philly and pretend to have fun. Dave & I think if we don’t come home we can handle waiting a day for results; logistically it’s just more reasonable to spread it over 2 days, that way we can not have one marathon day, the doc has more time to review the scans, (normally she scrambles for us, literally hunting down a preliminary read), and she can see the girls NOT post sedation, as entertaining as they are post-sedation.

We’ll see if I can handle leaving without knowing. Not too optimistic, but it’s the right thing to do.

As I hung up the phone I pondered losing my lunch, but I hadn’t eaten it yet.

Jumping off the denial train is no fun.

At least I rediscovered Cadbury chocolate balls at ShopRite. Can you believe I forgot they existed? Hello—newsflash on my mental state in aisle 3…but ultimately it was perfect timing.

So that’s that. It’s official. We do still have brain tumors here, despite my best attempts to pretend we don’t. Urgh.

I have my last craft thing this weekend, we are going to get our tree, Andrew needs a haircut, Dave will (I hope!) go to Aunt Beada’s Jewelry spectacular at Rita’s house (anyone local, she’s selling Friday night & Saturday a.m….her stuff is fabulous)…I need to put out some Christmas stuff, I’ve just been kind of flat. But packages are starting to arrive, I have some stuff wrapped…I haven’t baked one cookie yet, which is alarming.

Saturday is St. Nicholas Day, so I’m sure there will be treats for the kids in their shoes (using this page as a bulletin board so I don’t forget is ok, right? ; ) ).

But the extra room looks so delicious all painted, now I just have to get Dave to be willing to purge some of our books…I watch cleaning shows to get inspired, but Dave is still attached to his freshman year of high school lit books…eek! I have to go to Ikea, I hope to drag Dave along for the heavy lifting!

Please remember David Bailey especially as he returns to Duke this weekend for surgery & treatment. And Gabbie, Hadley, Devon x2, Drew, Mrs. M….

And if anyone can say a howdy to our buddy Lexie, she is trying to collect cb posts from every state…www.caringbridge.org/visit/lexiewilliams.

To everyone, I say BEAT THE BEAST! That’s my new motto.

Rosie needs help with homework, and I have to pull some pork before Dave & Andrew head out to the Rutgers game (GO RU!!!)…and brrrrr.

Wishing you all peace…thanks for praying for us.

Peace,
K

Monday, December 1, 2008 2:01 PM CST

Hi, all—

Happy Monday. Can you believe it’s DECEMBER??? Rosie tells me every day how many days until Christmas (YIKES).

I am taking a short break from painting, so I really have to not blather on today…we are trying to finally paint the “extra” room we have so it’s ready for Christmas. I guess I’ve finally accepted that it’s not going to be a room for another kid. Ok, while typing it I don’t feel that so much (!), but it is what it is.

Anyway, I LOVE painting…the roller sloshing swaths of color on the walls, everything looking crispy…unfortunately, the 27 hours of taping, cutting in, doing the ceiling, digging out drop cloths, covering the stack of G’s old enlarged books, photo albums we have no shelf room for, the 2 giant bookshelves, random stuffed animals, and a freebie desk that I just painted (so it can’t really be covered, ugh…and then I get fingerprints on it and have to paint it again, fricka fracka)…well, that 27 hours I don’t love so much. Hopefully I can get a second coat on the ceiling and a first coat on the walls today just as a reward for all the annoying Pre-painting work!

I hope everyone had a nice Thanksgiving. Ours was peaceful, the “boys” ran a 5K in the a.m.—Andrew got wheezy mid-race, which he was VERY annoyed about, Dave did well. The girls and I watched the Macy’s parade on tv while doing little crafty things (I FINALLY finished the cross stitch I started in July and kept shunning, so that’s good); the girls are working on more sparkly bracelets for the craft thing I’m doing on Sunday.

Dinner & dessert were very nice…

Friday I hit one store early-ish…they had barely anything I had on my list, I was utterly demoralized and came home…and shopped online. Now I’m nearly done, phew. Just a few more things…I wanted to keep things simple this year (yeah, I always say that), but I really agonized and felt like I wanted to get a Fabulous Woohoo for my kids…which arrived today. You all better hear woohoos of delight on the 25th! : )

On Saturday we went to St. Ann’s soup kitchen in Newark (if anyone has cable in NJ, you can see the News12 coverage…I think I successfully avoided the guy with the camera, but you can get a good idea of what the place is.) It was the annual coat drive, I think it was a great experience for the kids. Andrew & Dave helped the clients, Genna & Rosie and I did crafts with the kids while they waited for their turn to pick a coat/hat/scarf/underwear/socks. It’s our second time going, I hope we can go more often. It’s nice to finally be able to give back a little.

I did put my fall stuff away and get out some Advent candles. I’m just not ready for full on Christmas yet. I still have pumpkins!!! My sister has her tree up & decorated…granted, she’s moved 2x in the time I’ve agonized over a paint color for a hallway, so she’s not the best comparison for me!

Sunday Dave & the girls went to visit Grandpa in the hospital, the weather was hideous—Andrew & I watched the Giants (well, I paint-prepped first)…it was a peaceful day.

Genna is doing ok. Food is hard again…something since the time change, she’s just having a lot of trouble again. I have to find something helpful. In a funny note, she was sorting out her CDs the other day and asked about the song, “The song about the friend who was a groundhog?”…I had to think a moment…I’ll let you stew on that for a minute, see if you can figure out what she meant (Emily should know—you gave her that mix cd!).

I HAVE to go call CHOP about those January appointments. I don’t know why I don’t just do it. I think I just don’t want to put the date on the calendar. It’s like D-Day or something. But I need to get over myself and just do it.

We are in Full Storm the Heavens Mode for David Bailey (www.davidmbailey.com), our hippiefolksinger survivor Hope-meister friend. Well, we feel like he’s a friend, even if we’ve only met him 2x. He is in battle mode once again, against GBM—which he BEAT 12 years ago. David, we are PULLING FOR YOU…in one of the darkest, bleakest times in our bt journey, back in February 2006, we first heard David’s music…and the hope I had utterly lost received a glimmer of revival. After seeing him perform I thought maybe, just maybe those radiologists were wrong…maybe there IS hope for G. Two years later, seeing him again, I just felt so grateful for G beating the docs back in ’06, and for continuing to grow…David, thank you…and Beat The Beast AGAIN!!!

And for Gabbie, hitting the road for a miracle! We are praying for you guys…

And for Hadley…watching the video on her site, I was just bawling (so be warned)…we never had internet that would let me see video, to see this little one I’ve prayed for for so long…as she gets ready for her “helicopter to heaven” (her words)…makes me cry to even type it again, my hands are too paint covered to be rubbing my face, so enough already. www.caringbridge.org/ca/hadleyfox .

For Drew, Katsie, Charlotte, Devon & Devon, Carly x3, and so many others…my heart is so full for you all. This time of year I just think so much of all the kids battling…we can’t ever forget.

Ok, back to painting…thanks, all, for checking in on us, it means a lot.

Peace,
K who still went on too long, thank God I type very fast. Almost as fast as I talk. (!)

p.s. I almost forgot: G's song was Jeremiah Was a Bullfrog (he was a good friend of mine!) teehee.

Thursday, November 27, 2008 11:23 AM CST

Hi, all--
happy Thanksgiving.

We plow the fields and scatter the good seed on the land,
but it is fed and watered by God's Almighty hand.
He sends the snow in winter,
The warmth to swell the grain,
The breezes and the sunshine, and soft, refreshing rain!

All good gifts around us
Are sent from Heaven above-
so thank the Lord, oh, thank the Lord, for all His love--

We thank thee, then, oh Father,
for all things bright and good,
For seed time and for harvest,
our life, our health, our food.
No gifts have we to offer, for all thy love imparts,
But that which thou desirest, our humble thankful hearts!

All good gifts around us-
Are sent from Heaven above--
so thank the Lord, oh, thank the Lord, for all His love--
I really want to thank you, Lord!

--Godspell

I am so grateful for another year of stability...grateful for family and friends...grateful for our medical team...grateful for all of you. I re-read my last few years of Thanksgiving posts...we are in a different place now. Good: further from chemo, G is stronger every day. Hard: now I know Rosie has lurking beasts as well. I am so grateful for my three kids.

I'm finding it a bit challenging right now, balancing the parallel streams of extreme gratitude and extreme heartsickness over our friends who are suffering so much...but even in suffering I really am grateful for everyone...

and grateful for Godspell that always says things when I can't! ; )

I pray you all have a peaceful and blessed day. Please pray for David Bailey especially (shouldn't have read that update right before posting here, feeling the need for excessive punctuation which is most un-Thanksgiving-like)...and Hadley, and so many others...all our friends...

Be thankful for the moment. It's so fleeting.

peace,
Kristin who is trying not to eat too much before dinner, but now I need some chocolate.

Tuesday, November 25, 2008 10:46 AM CST

Hi, again, all--
I know, I go a week and then 2x in 2 days? But there is just So Much...both boo and eek/hooray, so maybe I'll start with boo and work up to eek/hooray.

Again, our condolences to the family of Joe Finn (www.joefinn.com) , I am so sad/mad about that I could spit. This brain tumor thing is--well, a word John Stewart uses a lot, I don't want to scandalize folks. Kind of like a catastrophe...his word describes brain tumors more accurately.

And PLEASE pray for David Bailey...his cyst wasn't just cyst, there was tumor there, too...I am beyond spitting over that, too. He says it best (as usual...his updates are...they speak to my soul).

God knows I ain't superman - Never claimed to be
I must confess this was a test I thought was behind me.
Now, dragons have a way of creeping up on you
Giving you some time to figure out what you will do.
But demons are a different beast and catch you unawares
They sting the soul and make fear become your only care
DAMN those demons and the speed at which they fly
You think they're gone but then they're back to spit into your eye.

yeah...what HE said.

And for Hadley, Nora, Gabbie, Drew, Katsie, Devon, Charlotte, Carlyx3...and Mrs. M, and other folks in our family who are sick...argh.
And for our angel families this difficult week...you are not forgotten.

Ok, that was an awful lot of boo. Really more BOOOOOOO (like the lady in The Princess Bride who boos the princess...THAT kind of BOOOOoooooooooOOOO).

So some eek/hooray?

Somehow there must have been some kind of error in the initial reporting of the Philadelphia Distance Run results, we knew Andrew did well, but we found out the other day that he had placed FIRST IN HIS AGE GROUP!!! We got a certificate, kind of said, Hey, that's interesting, and then put it in the Great Wall of Paper that is my kitchen counter.

Then yesterday a package arrives...it's a TROPHY!!! Andrew actually placed first in the 12-14 year olds in a REAL GIGANTIC HALF MARATHON IN A MAJOR CITY WHILE RUNNING FOR THE NF ENDURANCE TEAM!!!!!!!!!!!!!!!!!!!!! GO, ANDREW! GO, ANDREW!

But let me tell you how I really feel! : )

It's a cool trophy, weighs about 8 pounds, it's a replica Liberty Bell on a wooden platform...

I was proud of Andrew for just Running the race...this is just icing, and icing he deserves. So Hooray for Andrew!

And now eek...Dave is still running these days. I am not, it's just too bloody cold. And dark. But Dave gets into his Super Dave outfit (running tights --he does still wear shorts over it, but I mock, er, encourage him anyway) and runs EARLY in the morning. He has a blinkie safety light thing & his road id, but still...I worry.

So he goes out on Saturday morning for a horrifically early run, 5 a.m. It's pitch black outside and about 20 degrees (I don't do 20 degrees!). He is running a 4 or 5 mile loop near our house, and as he comes back down the 3rd leg of his loop (it's 4 roads that make a square), about 1.5 miles from our house, he sees a deer in the road.

No big deal, the deer here...well, you know. They're like mosquitos. Then Dave thinks, wow, that is a very black deer. And Big. A big, black....

BEAR!!!!!
IS NEAR
MY HOUSE!!!!!!!!!!!!!! A FLIPPING BEAR! CROSSED THE ROAD IN FRONT OF MY OBSESSIVELY RUNNING HUSBAND! That blinkie light isn't going to do squat if the jaws that bite and claws that catch get ahold of David! And he thought it was funny...

EEK!

So now I have ANOTHER COMPELLING reason I will NOT be running in this weather when it is dark so much...I have no desire to be bear chow, and despite everyone's kind words about my speediness (I seem faster online than I am in real life, I think) I couldn't outrun it.

We had heard rumors there was one in the woods here, but I'm a lot more comfy with unsubstantiated rumors than Dave's "hey, I saw a bear" report.

God help us, a BEAR???? I live in Ultimate Suburbia!!! EEK.

Even Andrew was amused by how much I freaked out. But really, a BEAR???

Strangely, Genna didn't freak out! :) I think she feels like a pro after our one bear encounter up in northwest Jersey where Bears Are Supposed to Stay. Go figure.

Ok, so there's some boo & eek/hooray! I'm sure I'll post something on Thanksgiving, but I wanted to get all this in now. I already hit the grocery store & Costco today...maybe I should make some lasagna...

peace,
Kristin the Unabashedy Bear-Phobic but proud Mom of SpeedBoy

Sunday, November 23, 2008 10:18 AM CST

Sunday night: please pray for the repose of the soul of Joe Finn...when I was a kid we knew his family, he is an Irish singer from down the shore...we actually had one of his albums and I used to sing along. My parents saw him perform last June, just before he was diagnosed with glioblastoma....yes, a brain tumor.

I just have no words. No printable words.

we need a cure.
peace,
k

www.joefinn.com
to hear him sing again...it brings me back to a happy, happy time.
****************************

Hi, all—
Happy Sunday.

GO COACH LAURA AND ASSISTANT COACH KELLY AT

THE PHILLY HALF MARATHON TODAY!!!

We are rooting for you, and so grateful our RU Lacrosse Friends are running for CTF!! .

Our little holiday boutique here went quite well; well enough that we’ll do it again next year. I did better in my mom’s dining room than I did in the last 2 years at the one show I did in Somerville…which is good, since I have been trying to get through Christmas shopping on a budget! As an added bonus, I actually found some gifts in the stuff other people were selling (I wish I knew how to make jewelry—but I cannot start one more craft obsession).

We are slogging through until Thanksgiving. I love Thanksgiving, and I feel like I could use a good dose of thankful. It’s been a tough week or so on the friends front…G’s first grade teacher (and a good friend of mine) has to restart aggressive chemo, ($^*!!), David Bailey’s surgery went well, I am just so worried (I know, meeting him 2x and listening to his CDs doesn’t make us best buds, but his music & story have meant so much to us)…Hadley is fighting hard, other friends are battling…

I am officially Done With People Being Sick. I decree Everyone Must Be Healthy NOW.

Sigh.

Last night I went to see my youngest sister in The Diary of Anne Frank at her school. I don’t normally watch historically accurate dramatic retellings of awful things. I’ve never seen Schindler’s List, only watched Titanic (just the history parts, I skipped all the romance…which I guess is telling!) years after it came out…my head can’t do that. I guess because I know it’s real…I was nearly a wreck 30 seconds into the play, I know how the story ends….but Laura did a great job, the whole cast was fantastic. It just puts my head in a very hard place, seeing suffering on that scale, thinking about the Holocaust (which I used to teach…it’s not like I don’t KNOW the stuff, I think that just exacerbates my response). If Andrew hadn’t been with me, I would have just blubbered the whole way home. Even he was impressed by the play…

And we talked about how bad horrible awful things bring out the best in people, the folks who courageously helped the Franks and Jews across Europe…made me think of how grateful I am for the folks we’ve met, and the people who have reached out to our family BECAUSE of the bad horrible awfulness of NF and brain tumors. Not that it makes the horrible acceptable…but somehow it enhances our humanity, to stand together in the face of tragedy.

In one funny moment, afterwards, I went to find Andrew…he was surrounded by a circle of the girls in his class. Say what, Willis? Eek! : ) Mr. Suave? Eek! : )

G has been struggling a bit with food again; it’s so cold outside, and gets dark so early, she really doesn’t want to run around…and the fridge is so There, sigh. Probably because I SAID she was doing so much better, now we are crashing and burning. But I have another thought or two about exercise and such. Holidays are hard.

But G is happy. Tomorrow is a class trip to the Seeing Eye Dog place, the original one, which is not far from our home. Again…I’m grateful. Three years ago I was sure that we would be making a family trip there, with a kid who used to be petrified of dogs (now she’s just Cautious. Very Cautious). I am grateful.

G’s glasses are beyond disintegrating, I have to make time this week to replace them. Dave wants a picture of the kids for Christmas (that’s his whole list! I swear I’m getting him a Chia Pet if he doesn’t give me more ideas)…a picture is harder than anything else, and we can’t have taped/super glued glasses for a picture.

I have to call CHOP this week to set up those appointments for January. Ugh.

But at least most of my painting stuff is done, I have the one church event where I sell stuff in a few weeks, I think I’m in pretty good shape. I have a couple of ornament orders from yesterday, but hopefully now I can finish getting our extra room ready for holiday guests (right now it’s the extra room for stuff without a home! aka the Pit of Despair).

Please pray for our friends. Gabbie, Drew, Nora, Katsie, Hadley, Carlyx3, Lexie, Devon, so many others…and David Bailey, and Mrs. M, G’s teacher…

WE NEED A CURE.

Peace,
K

Monday, November 17, 2008 6:44 PM CST

TUESDAY prayer request:
we are on the David Bailey mailing list, and he sent out an e-mail tonight saying he just learned he has a cyst that needs to come out tomorrow at Duke...which is brain surgery. We've been so blessed by his music and inspired when frankly nothing was inspirational. So if you can spare a prayer tomorrow, please, well, do.

peace,
k
*****************************

Hi, all—
Happy Monday.

Today was David’s great aunt’s funeral. Rest in peace, Tanty Lynn.

No one should have to face a brain tumor. Even if you’ve lived a full life, NO ONE should have to end that way. Please pray for her siblings, especially Grandpa, who wasn’t well enough to get to the wake or funeral. Dave went to visit him tonight.

And please pray for Hadley bug right now, especially…

****************************************************

Well, we are officially high speed here. It’s LOVELY. In every way, utterly lovely.

Learning all the new tv channels is a bit daunting…and I accidentally blocked all the sports and news channels on the first day (and then went out for the evening…oops!)…no, really, it WAS an accident. We do have some interesting NEW channels, and my girls are agog that they can see Angelina Ballerina free on demand.

Did you know there’s an entire channel of exercise? I figured I needed to try this out. We checked it out last night and frankly were terrified, the woman was practically breaking through metal shipping containers with her fist…well, she was doing a killer workout. Even Dave was alarmed. This morning, though, the lady who was on was Deadly Perky. I find someone shouting “Wooo!” and skipping in between steps while sporting the same hairstyle Genna sometimes has to be not so much motivational…well, I was motivated, but mostly to throw things at the tv. Next was Yoga, which I’ve wanted to try forever. The beginning was awesome, all breathing (yup, good at that) and reaching up (yup, can do that)…then they did this plank thing (um, a push up with out the down?) and then twisted and balanced on one arm while touching the ceiling…at which point I collapsed (the pancake pose?). But it was funny. I think I may not be yoga-ready. But the breathing part was fun. And the disembodied mellow voice was not at all perky, which was good since I had nothing left to throw at the tv. I liked that show.

Really, we’ve been too busy to actually watch much tv, and with high speed I can get through computer stuff much faster…which is good, since I have a lot of other stuff to do.

There’s a promising new study of a drug for plexiforms. In animal models it seems like maybe it won’t not work (yes, I am a font of optimism). It’s only been used successfully in one child so far, compassionate use (so hooray for that family), so I can’t get too woohoo about it yet. But maybe…maybe there is some hope.

I figure after Rosie’s hearing thing at school I need to start my plexiform research again. It’s just not pretty. And then I get queasy…

But then I go to pick Rosie up from her ballet/tap class and I can hear the class is tapping to Loveshack…which is definitely smile worthy!

Genna made a pile of ornaments for our little Holiday Boutique this weekend…candy canes & wreaths, and now she & Rosie are making Christmas bead bracelets. This is a little harder for G, but I have to think it’s great motor skills practice. And I think I’m getting addicted to plastic beads, they are so sparkly!

I have been painting/cutting/gluing all day; with everything else, my own inventory is a bit anemic. My kitchen table is covered with neon dinosaurs. That would be a fun name for a rock band, Neon Dinosaurs….

Must go get my girls in to bed. Please pray for them; I know we are in a lull, and I have this heavy feeling that our respite just can’t last that much longer…but they are generally so happy right now, no drama, just too much talking at school (heck, Andrew’s teacher called home his first week of kindergarten to tell me he was Very Entertaining to everyone…we have a long history of Noise in School that is utterly un-bt/nf related!)…

I like normal, even if there are shadows in the corners.

Peace, all…and please pray for our friends, Gabbie, Katsie, Drew, Lexie, Nora, Carly x3, and so many others…

And happy birthday, Mom! (aka Toast Lady, as G calls her amid much giggling).

Peace,
K

p.s. for anyone moderately local, check out www.caringbridge.org/visit/sandy for details about the traveling art show in Sandra’s honor this weekend…Saturday at Watchung Hills, I think 10-3? It sounds like it’s going to be really beautiful…

Thursday, November 13, 2008 7:36 PM CST

Hello, all—
I know, it’s been ages…by this time tomorrow I Will Have Wireless High Speed Internet Throughout My Abode!!!! Thank God, I have been struggling to get done the stuff I use the internet for…involuntarily shunning caringbridge kids I need to check on…freezing to death trying to find random internet outdoors…

I can’t believe we will finally have it fixed. I feel like something will go wrong somehow…

Anyway, it’s been kind of one of those crazyish weeks…report cards & teacher conferences. I haven’t gotten to an official teacher conference since…geez, maybe 2004? Our school always schedules them the same 2 days in November; after G’s diagnosis, when she required eye checks regularly, those checks always fell on that same Thursday in November (our doc is only at CHOP 2 days a week, he treats adults too and teaches). Our school has a remarkable inflexibility about conference scheduling (not going there today), and they ALWAYS put me on Thursday so I never get to have a real conference. But this year the schedule at school got changed, the conferences moved a week later…or we would have missed it again!

Phew!

So report cards: no big surprises. Some of G’s grades were a bit lower than they should be, which is actually my fault, I think. I have been so wildly relieved that she hasn’t had much homework that I’ve been somewhat derelict in making her study enough. She really needs to go over certain things multiple times (out loud, sigh), so we are back on track now. She is still a Wall Of Sound at school…but really, no surprises there, either.

Rosie is doing quite well academically…to my surprise, SHE is apparently a Wall of Interesting Stories That Must Be Told NOW at school! I have noticed some behavioral stuff at home, so now we are working on “sometimes you have to be quiet until it’s time to talk by permission of Miss M!” But really—no biggies.

The conferences were good today…of course my car wouldn’t start, I was not exactly zen like about that…but I got it to go and only ended up being 2 minutes late. G’s teacher is really understanding, and doesn’t get too fazed by G’s idiosyncrasies. No surprises, really. She is doing well, he is trying to help her with her social interactions, too, which I appreciate. He does know that WHATEVER word he speaks comes back to me (and I know the reverse is true…which I admit to using to my advantage…”wow, these are a LOT of RIDICULOUS spelling words…THIS BOOK IS SILLY”…apparently Mr. S agrees, and they are getting a new book for next year! : ) (really-delicatessen? Who says that? Did I even spell it correctly? Argh).

The only yikes moment: Rosie’s teacher didn’t know Rosie had tumors. How this could be, I have no idea…but me making reference to tumors today in reference to speech issues was apparently the first time she had heard about R’s stuff…I saw “the look”…she is a stunningly gorgeous young woman, and her eyes…I felt awful, I had no idea she didn’t know. I guess our strategy of “downplay Rosie’s stuff” has been more successful than I thought—and Rosie has been fine. Her teacher hasn’t noticed hearing issues, we know Rosie’s eyes are ok…but still, I think I need to send Miss M. a card of niceness and a thing explaining NF…sigh.

I felt really, really bad about that. Worse the more I thought about it. Hearing it the first time is rotten. Still, in what I think is a testament to this young teacher, she said, “well, she’s still the same Rosie!”…YOU GOT THAT RIGHT, NF DOES NOT DEFINE MY PRINCESS.

I knew I liked Miss M.

Tomorrow we will all be here waiting for the Fios guy…my niece & nephews are coming over while Dave’s sister has her conferences…we may frighten the Fios guy, having 6 kids under age 10 here all at once. My to-do list is so long…I’m finding it hard to keep on top of things, and I have no excuse. I’m just a bit lost.

Dave & I did mostly decide that we are waiting to scan G until after Christmas. December is awful at work for him, and he has CPE stuff he needs to finish by year end…and we’ve done “Disaster Before Christmas” scan before…heebie jeebie...(that’s one ugly t-shirt to have)…and I know as of October 11 G’s shunt was fine…so I am almost ok waiting. Then we have a logistical frimframmery…because Rosie is due to scan. I have an intensely bad feeling about her plexiform, but whatever. Also not going there today. I am toying with the idea of scanning them both on the same day & then doing R’s hearing test the next day & getting results then…yes, that would require waiting a day, but I think I could do that if we stayed over in Philly somewhere and pretended to have fun (!). I have to see if that’s prohibitively expensive…but maybe we could go down a day early, bring Andrew, stay somewhere with a pool…I don’t know. I need Fios to research that! : )

My brain is like a gerbil in one of those wheels, that’s what I feel like.

It’s kind of like having a perpetual ache somewhere you can’t quite reach…it just hangs over stuff and makes a big shadow.

I did finally forcibly remove the pile of candy from Andrew’s room…even 10 days after Halloween he had so much left, my giant bowl was too small…while this is good for my gerbil/ache days, it really means I HAVE to start exercising again…which I did today. When I can’t move tomorrow I shall console myself with the still nearly full bowl.

I shall Never Win Health Foodie of the Year. Alas.

We are having a mini-holiday boutique at my mom’s next door next Friday & Saturday (Fri. 3-6 and Saturday 9-2). Genna DESPERATELY wants to make a craft to sell. After some trial and error I think we found something she can make (our first attempts were scary…motor skills are not so hot). Hopefully some folks come by and shop a bit, I think it will be fun…

Although unfortunately it’s at the same time as a traveling art show in honor of Sandy! ACK! How ironic…Sandy, who inspires G so much in art (G goes to the same art teacher, and ENDLESSLY talks about Sandra’s projects)…G is doing her first art thing on the same day. We WILL find a way to bilocate that day; the high school is so close, I know we can make it happen. I have to get back to Sandy’s site to see the details, my computer was…well, you know. But I got the gist of the details from a friend, thank goodness!

My kids got their flu shots yesterday (G is telling me about her bump as I type). So if you get the flu, it won’t be from us. Well, maybe from me, I haven’t found a flu clinic yet. But at least my kids won’t start a pandemic.

Is that famous last words?

Well, must get my girls to bed. Things are so busy…Andrew is at basketball tryouts tonight (did not want to be seen with his sister who is in full princess regalia from a party today! Foam crown and all)…tomorrow I am going to a Tricky Tray with my sister (maybe I can win some Christmas presents!), Saturday we have a 40th birthday party for a friend (this year a bunch of our friends turn the big 4-0…heck, that day is getting closer for Dave…EEK), Sunday we are celebrating my mom’s birthday...all good, just a lot. But I kind of need to see people. (Thanks, C, for the coffee time this week…that means so much to me, especially when I am impersonating a flounder).

Peace, all—and please especially pray for Hadley, my heart is in a billion pieces for her family and for her…and for Gabbie, Drew, Katsie, Nora, Emma, Meadow, Charlotte, and so many, many others…and for our family members who we are praying for every night…and for Dave’s grandfather back in the hospital. Sigh. I wish we could wrap up some health and peace, slap a bow on top, and call our Christmas shopping done!

G is calling for her meds…must run.

Peace,
K

I did get myself a present this week …Aretha Franklin has a Christmas CD, my life may be complete! : ) it’s the little things that keep me…well, sane-ish.

Friday, November 7, 2008 10:25 AM CST

Hi, all—
Happy Friday.

Just a quick note, my kids are off today and things are busy…just trying to clean up, tchotchke breeds here.

This was a bit of an up & down kind of week…the great UP! Of Race for Hope, a bit of a down from school…Rosie flunked a hearing test. Well, a hearing re-test. In one ear. Guess which one?

While my initial response was to jump out the window when the school nurse asked if we had a family history of hearing loss (no fears, I was in the basement) , I contacted our doctor and we will just re-run the auditory testing at CHOP next time we are there. The school nurse didn’t know about the plexiform; Rosie’s announcement last year to her kindergarten class didn’t include the confusing/scary plexiform ugh. So that was a bit of a downer.

And the Academy Award for Understatement of the Year goes to…

Then back to up…G had an awesome class trip to the Bueller Science Center, her class ran a mission to meet with Comet Halley, it’s a really awesome program where the kids actually design a mission badge, research the comet, and then run a space mission. G was SO EXCITED. She had a great time…her job was communication (shock & surprise there!)…she wanted to do medical, but the teachers were concerned about the small print & such (mini-downer). Still, she had the most fabulous time ever.

Then Thursday: off to CHOP. This was both down (the trip) and up (the final report).
Between rain & rush hour we were late for the first time ever…I was panicking, we left so early but apparently not early enough…I called the clinic, they told me we had to be there within 15 minutes of our appointment time or else (nicely)…the last 12 miles took me an hour to drive…we got to the parking area & I let G out by the hospital door to run & tell them we were HERE (17 minutes late)…something I’ve never done…

So we got in—and had to wait 3 hours. I can’t quite figure this out…how us being late pushed it back that much, since we always wait at least 1-2 hours when we are early, and there were 8:30-9:30 folks still waiting with us…but I am VERY grateful to Dr. Liu, who told us a) the phone call was a good idea and b) he will always fit in “old friends”. That meant an awful lot to me…if we had driven 2.5 hours in the rain and then not gotten seen, I would have become a speed bump in the parking garage.

In one nice moment, we met another NF family there…Rosie recognized Meadow from the Philly Distance Run pasta dinner. A nice hello…and thankfully there were LOTS of babies in the clinic, G & R were in their glory.

And, better yet, both girls have stable eyeballs! Rosie’s are perfect, and G’s good eye is still ok in her old prescription, so now I need to re-do that before I can replace her very disintegrating glasses. So all in all it was a good, albeit grueling day.

Tomorrow is Andrew’s big entrance exam at the high school. Hopefully it goes ok, the vocabulary questions are killing him. I hope we are making the right decision.

Funny quote of the day: from Wednesday, as I told my kids that they had witnessed history in the election of an African American as our president…Genna said, eyes wide, “Obama is African American??”…ok, so maybe I am too apolitical (I find the more folks talk about politics, generally the less they actually KNOW), and she IS visually challenged…but I thought that was funny. Andrew was appalled. But wouldn’t it be great if we all saw like that?

So that’s the Camiolo week in review…I’m trying to focus on the up and not so much obsess about the down. But this week made me want to run again…

Haven’t yet, of course (!), but I want to. Run & Run & Run…

A ginormous HAPPY BIRTHDAY to Gabbie (this weekend, I think? I am so behind in mailing, but hooray for Gabbie!!), and prayers for all our friends…Nora, Drew, Katsie, Emma, Meadow, Andrew, Carly x3, Charlotte, and so many others….

Better run, I think Andrew is making social plans…!

And ONLY ONE MORE WEEK UNTIL WE GET FIOS!!!!!!!!!!!!!!!! Cue choir of hooray…

Peace,
Kristin

Sunday, November 2, 2008 3:50 PM CST

Hi, all.

Happy Sunday.

Well, I learned several things over the last few days:
1. Rosie is the cutest ghost ever (I am going to move the Halloween pictures to the album). I guess the retro aspect of her costume outweighed the table-clothness of it.

2. When push comes to shove, or difficult playoff game against big time rivals leads to championship game today, the 13 year old will go with his team. Sigh.

3. Adding a second child’s face to our G-foRce! logo on our signs was singularly difficult, which I did not anticipate. Some significant derailing of the denial train occurred there, to my great dismay and surprise…last year at Race for Hope I only had one child with a brain tumor. Which led to discovery #4…

4. You can actually turn an Ipod almost up to its LOUDEST volume while playing Evanescence and Not blow your eardrums out. Singing along is optional. Either way, the denial train limps along with the help of intensely loud angst filled music.

5. We only need a single batch of cookies if Andrew & friends don’t come to the race. But now I have leftovers, so woohoo!

6. Viking Hats are a SUPER cool theme for a team, and I was totally coveting the caps on Elsa’s Viking team (purple & silver Viking hats on every team member!) Whoever Elsa is, your team looked AWESOME. Hence the random Vikings in the collage.

7. Even a small G-foRce! team is mighty, loud, and generally super cool.

8. We have really cool BT friends…great to see Banu & Devon, SherryLee & Charlotte (and everyone in your families!)…and G saw a friend from camp, an unexpected surprise.

9. Our doc rocks…came out on her day off to Race for Hope. G looking for her in the crowd got us through a challenging mile or two.

And finally, the top 10 lesson:

10. G is SO MIGHTY. She pushed along, absolutely Determined to finish ahead of me & Rita…kept a brisk pace, and actually finished the 5K in about 53 minutes clock time (with a “hug your doctor” break). Her chip time will be slightly faster…in her words, “I CRUSHED an hour!”. I am so very, very proud of her. She was hurting near the end, but pushed on. She is astoundingly determined.

And a special thanks to my mom for keeping Rosie, Miss Sit When I am Tired Even if There’s Still 2 Miles To Go. Rosie did the Kid Run and got a medal, so all is well in the world.

Well, and 11. Ben Franklin drives a Honda the same color as his coat. Who knew? I never saw THAT in Poor Richard’s Almanack…

So we are done with another Race for Hope. This type of event is uber inspiring, so great. I always completely stress the day before, but in the end, even with our mini team, it was really fabulous. Every single person there has been touched by the devastation of a brain tumor diagnosis. We know that pain, and to be with so many other people who share that…it’s empowering. Kind of defiant…

Even as I waste an awful lot of mascara the night before (this is why I never used to wear makeup, good grief), while running a repeating loop of scary music, there is joy in days like today.

Thank you, Dave, Genna, Rosie, Mom & Dad Appert, Annie, Laura, Mark, John, and my pace partner, Rita.

At the beginning they gathered the survivors together…I told Rosie to go up too, she told me “but I’m not a survivor!”…I told her she was alive, go ahead. As SherryLee said, from diagnosis day on, you ARE a survivor…Genna took her buddy Charlotte’s hand and they stood smiling together…the lady behind my girls looked like she was crying…she had a hand on each of my girls, I think she realized they were sisters. Heck, I guess I shouldn’t feel bad about occasional wreckage if it makes other people sad.

I just know we’re so lucky to be in an okay place right now. Even if the balance seems precarious, I know we are so lucky/blessed/fortunate to be okay today. In many ways today’s race reminded us of that…so many people running in memory of loved ones…

We are so blessed.

Well, Dave just came home from picking up Andrew at his coach’s house…so much for my quiet moment!

Better run…figuratively! ; ) I did my 3.2 today!

Please pray for everyone battling on…you all were in our hearts today.
Peace,
k

Thursday, October 30, 2008 9:57 AM CDT

Hi, all. Happy Thursday.

Well, it’s only 3 days until the Philadelphia Race for Hope. While online registration is closed, you can still sign up the day of the race…so if anyone wants to join the G-foRce! on Sunday, come on down!

I know, it’s ridiculously far. But I figured I’d throw out the invite, we’d love to see anyone who can come. And if it’s just the 14 or so of us (I know we have a few day-of folks coming with us), that means more cookies for me! (which is nice, since I’m usually so frenzied I don’t actually get to eat any cookies). I am making some pins that look a little like a 3rd grade art project; my laminator got off to a rough start (literally, things were wrinkly) but I got it worked out and now feel like laminating EVERYTHING that will fit through the little feed tray!

For info visit www.braintumorsociety.org --if anyone does come, please just let me know so I have a pin & a newly laminated G for you!

And if anyone has donated, I am sorry I haven’t done thank yous yet…I don’t get notified of donations to the kids, because of an e-mail glog, so I didn’t know dollars had come in! But thank you, all.

Schedule nightmare # 257, if Andrew’s team wins their playoff game on Saturday, the final is Sunday morning. Sigh—of course it is! But Andrew said he doesn’t want to miss Race for Hope (which surprised me a bit). Maybe the game time will change, but alas.
I hope Andrew does really well at the race, if he has to miss his game!

Genna is feeling good. I am proud of her; she seems to be doing a lot better socially at school, at least trying to play with the girls in her class…and they are nice to her, letting her try twice when she inevitably botches the 4-square ball bopping. When I was on lunch duty the other day (cue gnashing of teeth…nothing like arguing with a 5th grader about why We Do Not Peg Each Other On Purpose With a Ball At Recess, There is No Way That Is Actually Allowed, and If That In Fact Makes It No Fun then Play Duck-Duck-Goose For All I Care…which went over well, as you can imagine)…anyway, while patrolling the playground I saw G take a kickball upside the head. It was totally an accident, a girl kicked it and I watched the darn thing just curve in the air. The girl was falling over herself apologizing, and G looked perturbed…but she Did Not Cry.

Since G’s traditional response to any negative anything (especially any kind of gonk) is a blood curdling banshee scaring scream, this was huge for her. She is trying so hard to chill…which in turn helps the other girls want to play with her…

So I was proud of her for not over-reacting, and she stayed in the game, and I got to go back to debating with the persistent fifth grader. I hate lunch duty. When G was on treatment they didn’t make me do it. That is, in fact, the only good thing about a brain tumor. You get out of lunch duty. And I have it next Monday, too, due to a schedule swap. Dang.

Anyway, G is excited for Sunday’s race. I haven’t moved since the 5K nearly 2 weeks ago. I realized I don’t miss exercising, and now it’s cold here. But I have to start again. G has re-started her walking tapes, but I think Sunday will be a challenge. She said her neck is fine, but sometimes her back hurts. We have one more week of antibiotic. Hopefully that will take care of things.

I did fill out my ER survey. Nearly caught the envelope on fire, my words were a tad scathing. But don’t ask me how the tests/labs went unless you Really want to know!

On the 12th the kids get flu shots…back to the pediatrician. I’m kind of hoping I see the doc who blew me off about Lyme…although she did consent to the labs…I would kind of like to pleasantly say MOM IS ALWAYS RIGHT.

I know, I’m so mature.

G has art today, which is wonderful…so worth the money, I keep telling David. 2 hours of really intensely good art stuff. Her teacher has a kiln, and a fabulous studio, G has been making some nice stuff. She’s so impulsive, but Lisa Brown (www.art-as-therapy.com) somehow gets G to create beautiful things. I am wildly impressed (and hoping sometime I can go do one of the grown up workshops!)

Andrew did really well at his “Spartan for a Day” thing at Immaculata on Tuesday. He was intrigued that the English teacher was teaching poetry and had the class analyze a Pink Floyd song. Hey, my kid…intrigued by poetry??? I’ll take it. He was equally impressed by the French fries at lunch, so maybe I shouldn’t get too carried away. Aside from a teen yikes on the way home (holy cow, I am so not ready for this), he had a very positive experience visiting the high school.

Finally, tomorrow is the All Saints celebration at school (they dress as Catholic saints, which is kind of cool), then the Halloween trick-or-treating out and about. Andrew wants to go out with his friends, which is a weird sad moment for me. He doesn’t have a costume, he just wants to use the purple hair dye Dave wouldn’t use at the Philly race! For school Andrew says he is going to wear a hockey jersey and be St. John Bosco, patron of boys. While I doubt Don Bosco ever wore a Devils jersey, it is plausible that he Would have if it had existed in Italy back in the late 19th century, he was that kind of guy.

Genna wants to be Sandra again for school. She wants to bring in her picture of her & Sandra, the poem she read at Sandra’s funeral, and the monkey Sandra got her on the boardwalk, I think. I drew the line at the monkey (it’s noisy…and Sandra gave one to Rosie, too, with such a mischievous grin…I told her Thanks a Lot, the two monkeys together are deafening! We miss you so much on Halloween, Sandra…)

G’s pumpkin costume is super cute. Thank God for t-shirts and felt.

For school Rosie is going to be Maria Goretti (she is named for her) and of course a ghost for trick or treating. I did put sparkles and cut a smile on the ghost, and we have a bow to attach to the ghostie head…she keeps putting on her costume and going next door to my parents’ to say BOOO! to whoever she can find.

I wonder if it’s still too early to open the candy I have for trick-or-treaters?

Yeah, probably.

Well, I guess that’s it. I will post pics of my kids tomorrow, and I’ll try to post after Sunday’s race. Please pray for our friends battling…way, way too many. And please, in a special request…I have a young relative who is really suffering right now, please pray the docs can find an effective treatment ASAP. I am so tired of kids hurting.

Especially, too, please pray for the family of Marcus, a young brain tumor warrior who earned his wings this week.

This is why we race. Sometimes driving to Philly at 5:30 a.m. toting signs, cookies, and tired children is what we have to do to keep hope alive. Somedays it’s just harder than others.

Anyway, I hope everyone has a peaceful weekend.

Peace,
k

Sunday, October 26, 2008 6:05 PM CDT

Hi, all—

If anyone wants to join the G-foRce! at the Race for Hope in Philly next Sunday, the online registration deadline is TUESDAY AT NOON. You can still register on race day, but it’s easier to do it ahead of time. I’m a little bummed our team is very small this year; I did an awful job getting the word out, I’m just tired. And our RU friends have a retreat this weekend, so that rules out a pile of very enthusiastic Catholic Center folks. Even half of our admittedly massive family can’t come this year…but the dozen or so of us signed up will be there In Force!

http://bts.convio.net/goto/GFORCE is the direct link to our page. I will make choco chip cookies with Ghirardelli bittersweet chocolate yum yum yum…

Of course G hasn’t been able to train At All…but she finally has truly turned a corner, is feeling much better…still, stupid deer. I just got my ER survey...and my pencil is sharp, watch out. Ahem. Anyway, I hope G will do ok for 3 miles.

I just have to let it go. We’ll be in Philly, running/walking strong no matter what.

We found out yesterday that Dave’s great aunt has a malignant brain tumor. The same kind we lost Grandma N. to. Insert unprintable thing here.

We will be running/walking strong in Philly, come hell or high water. Or both.

We just got back from a really nice time at the Big Apple Circus…I love seeing people who can flip and juggle and do both at the same time, people for whom sequins are no big deal, clowns and silliness and funnel cake…it’s a wonderful outing, and we are grateful to the Children’s Brain Tumor Foundation for providing this magical day for so many kids.

As a cool side note, just prior to intermission a couple got called down to the ring and the guy proposed! Way cool…

Watching Rosie’s face during the circus is really the best part. She is Agog for most of it. She told me she could probably do ballet like the Nanjing Duo if she practiced a LOT, then she could do ballet on Daddy’s head!

Andrew has a baseball game like NOW, so I should run. Things are just so busy/crazy here. The girls have eye checks in 2 weeks…I still have to get G’s prescription for new glasses, but now I wonder if the Lyme impacted her acuity, the doc had her seeing worse than her normal CHOP test says…geez, I hope it’s the Lyme…but now I don’t know if that prescription is right…

Ugh.

The magic of typing…we’re back from the game, I am beginning to regain the feeling in my frozen toes!

I did decide last night if Andrew plays professional ball (! I know, but hey, dream big!) he should do like that professional football player who ridiculously changed his name to Ocho Cinco just to bug someone…Andrew could change his name to Yo Momma. Think about it: “Yo Momma is at the plate!” “Yo Momma is in a huge hitting slump!” “It’s a base hit for Yo Momma!” “Yo Momma just beaned a hitter!” “Yo Momma is charging the mound!”…

This was inordinately amusing to me. After hearing the Phillies’ welcome of the Rays (fishie fishie fishies in the ocean? teehee!) I was inspired.

Anyway, this week is full…lunch duty (grumble), Andrew has a visit to a high school (yikes), ccd & choir & art & dance & dance & the end of baseball & a doc appt. & race prep (making cute G-foRce! pins and updating last year’s shirts, add a 2008 and they’re good to go!)…and of course Halloween. I have one pumpkin costume nearly done (after a disastrous “impulsive child decides to do it herself with a sharpie and enthusiasm but dubious fine motor skills” start), and my cute Rosie wants to be not a princess, not a ballerina fairy sparkle wish dream fancy-ness…she wants to be a ghost. Like a tablecloth with eyeholes. I am putting a bow & sparkles on the ghost, and trying to embrace a new non-control-freak-maternalness ! : )

I also need to get off the barge o’ denial and set up a scan for G. I’m thinking maybe December over January. Maybe. Then I have to set up Rosie’s January scan…everyone needs flu shots, I think that’s in a few weeks. My brain is full.

I’ve done a fair amount of therapeutic painting. We finally replaced our Unclaimed Freight $188 mattress from 1994, and the Grandpa’s Basement Chair from…well, we dug it out of his basement in 1994…but then ye olde Ikea table I got for free with a coupon looked, well, like a free Ikea table…so I had to paint it, and so I did some shelving too…now I have to paint the room around the shelves…

I have to keep my brain full this way. Other stuff just keeps pushing in, paint is much more fun than other stuff. It’s just quiet here during the day.

My girls are literally doing a cheer for PIZZA, Rosie went and found a purple leotard and pompoms and just did a split while cheering…this girl gets seriously inspired by the circus! Dave already ordered it…G just said, “this is the best day of my life!”…

Anyway, please pray for our friends…for Gabbie, Nora, Katsie, Drew, Emma, Hadley, and all those little ones we saw today at the circus…and for Dave’s aunt…

Now Rosie is “juggling” the pompom…good grief.

Peace,
k

Saturday, October 18, 2008 9:37 PM CDT

Tues: I think G finally turned the proverbial corner; yesterday she only mentioned pain once...thank God!

I moved the Lacrosse pic to the album, and added a few pics there.

Thanks, all, for pulling for G. She is still alarmingly cheerful.

peace,
k
***************************

Hi, all.

G is still hurting. The woohoo of Lyme (as in, no biggie we can fix it fast) has faded a bit with G’s continuing pain, but hopefully we can get that under control soon. She’s fine with meds, just draggy. Once things wear off, she really hurts…neck, back, legs. I feel so bad for her.

It’s funny, when she had Lyme 5 years ago it was The End of the World, I was so upset…now, relative to NF/brain tumor, Lyme caught early isn’t so bad, and I don’t feel yikes about it. I have to admit, despite everyone thinking I’m nice, I did kind of yell “I KNEW IT I KNEW IT” at the pediatrician. Of course she wasn’t the one who had told me on Monday that it probably was NOT Lyme, she really didn’t think it Was Lyme, but she would do labs (undercurrent of “we will appease the crazy madre”).

I just hope G feels better soon. We had to go to the Rutgers game today (I so didn’t want to, but it was G’s turn and Dave’s chores were more time sensitive than mine)…G was really struggling on the long walk to the stadium, and then fell asleep on my shoulder at half time. Poor girl, but when she woke up she was hollering RU with the crowd.

Thanks for all the good thoughts, and for supporting me in my moment of maternal vindication! : )

In other news…

I am officially not dead. In case you were wondering—well, and if you’re not…I survived 5K.

For the record, 3 miles is FAR. 5K sounds shorter than 3 MILES, I think because we don’t use K here in the U.S. Really, what’s a K?

For the record, 5Ks all at once are far.

For the first time, Andrew beat Dave, finished in 20 minutes and something. Insanity. Granted, this was a school fundraiser, so he was racing all his friends & didn’t want to get shown up! He came in 3rd for his age, and Dave won his age group. I did not throw up, nor did I fall down and have people step over me, so I consider that a victory! 28 minutes and 35 seconds of ow, but now I can check it off my list! : )

My knee is killing me, but whatever. I couldn’t sleep last night I was so nervous. Ugh. I’m not sure I’ll ever get to half marathon if I am a wreck for a 5K!

It was cool to high five my “boys” at the end of the race. And not throw up.

And in other milestoneyness, my baby lost her first tooth last night. She waited until it was horizontal with looseness and then wiggled it and plop! it fell out. She would NOT pull it, we thought it might just dangle grotesquely forever. But now she has a teeny little missing tooth smile…my baby is big. Sigh.

My internet is totally glomped, so this may not even post, but I wanted to say thanks again for pulling for poor G. I REALLY hope she feels better soon. She’s been down for nearly 3 weeks. I just feel so bad.

And now quite tired…please remember our friends…Hadley, Gabbie, Katsie, Nora, Drew, Emma, Devon, Carly x3, Jordan, and so many others…

Finally….
G wrote a poem for Race for Hope…
If you have hope
You will run with care
To share whatever you have
To help find a cure!

So if you want to join us, check out the G-foRce! at www.braintumorsociety.org . We emptied our penny pig tonight and had $14.50 to add to Annie’s total…my sister had people fill piggy banks for a year for Race for Hope (may adapt that idea for our Coffeehouse). We are gearing up for the next race, I hope G feels well enough to be strong there, she so wanted to go faster than last year.

Peace , all—
k

Wednesday, October 15, 2008 9:29 AM CDT

THURSDAY UPDATE: THE LABS ARE BACK.
and I am not a crazy lady.
She has Lyme. Acute Lyme (aka we caught it early). My sister called it a week ago. So 3 weeks of antibiotic and she should be ok...

I am not glad G has Lyme, but I kind of am, because we caught it early and We Can Fix It. We don't often have that option in our particular sphere of experience. Now I don't mind having been crazy lady for a week and change.

But really, poor G. No wonder she's felt like ugh.

And the next time I see a deer in my yard...hello, bbq!

peace,
k
*******************************

Hi, all.

G seems to be feeling a bit better. She goes longer after the medicine wears off before asking for more…sometimes I can hold her off for a bit with the heating pad. Still, her neck hurts. Maybe it is just a muscle thing, I don’t know. Today she’s going to try to get through school on just the pre-school-dose of motrin. Yesterday she found Grandpa at lunch for a top secret Tylenol (!), and was ok until around 5.

It’s just weird.

I did make the pediatrician run labs. She wasn’t amused, but I have learned to be pleasantly This Is What You’re Going to Do—at least locally! And I realized (which is completely irrelevant, but gave me some sense of something as I pushed for labs) that I can see over the doctor’s head. This was strangely empowering, but maybe that’s just because I’m not naturally assertive. Having about 8 or 9 inches on the doc…and 4 years of Serious Medical Whatever gave me a bit more oomph than usual.

That , I know, is the silliest thing ever typed.

It’s been that kind of week!

I do feel like we’re getting back into the swing of things…in a good way. Aside from my son utterly embracing his 13 year old boyness (there are MANY synapses just not firing, it’s mindboggling), he’s been very sweet in encouraging me to keep running. Which I should do today…eek. Andrew keeps telling me I’m doing great, how far did I go today, etc. Strangely, that really does mean a lot. In a fit of school supportiveness or complete mental breakdown I signed up for the school’s 5K on Saturday. WHAT ON GOD’S GREEN EARTH WAS I THINKING??? Seriously, we realized the form was due and dropped it off on our way to the CHOP ER the other night. Agh. I have been having a lot of trouble just making myself Go, so it should be interesting. As long as I don’t throw up or finish behind the people walking, that’s ok, I guess. At least I’ll wear my NF shirt for awareness.

Genna & Rosie are going to do the Kid’s Dash, I made them sign up. Hey, we are all going down together! : )

Rosie and Andrew now both have colds. Hopefully they stay well. Rosie and I did have some quality Tango time last night with the Sandra Boynton Rabbit Tango…note to self, doing the tango with someone literally 2 feet shorter is challenging to all sorts of muscles one forgot one had!

I have to keep running (figuratively) today, errands to run & hopefully a bit more painting to do. Thanks to all for praying for G. I know in the big picture, her two weeks of ugh are not so much. So many of our friends are in much more dire places. I feel guilty—I know we’ve been so immeasurably lucky. The elephant just looms unexpectedly.

I’ll get lab results for G tomorrow, if anything shows up you know I’ll holler!

It’s only like 19 days until Race for Hope, if anyone wants to join us we’d love to see you there…www.braintumorsociety.org look for the G-foRce! team. I’m going to make some kind of snazzy team pin, in a fit of post-cooped-up-stress last week I bought a laminator. I frequently tell Dave he’s lucky, I stress shop at Target or a craft store, not Macy’s or Bloomingdales. Anyway, I can now make magnets and stickers and laminate things at home. I’ve been eyeing this thing forever, and there was a big coupon…and with the races & the Coffeehouse and all, it should be so useful…maybe…

Ok, there’s no real justifying a laminator. But it will be FUN! : )

Please pray for our friends, most especially Hadley, Gabbie, Katsie, Nora, Drew, Carly, Emma, and everybody.

Peace,
K

p.s. we did realize the other night, while walking through the scary hospital parking deck (it’s so creepy, the Wood Center parking is way better), that you can sing “Little CHOP! Little CHOP of horrors, Little CHOP! Little CHOP of terrors! Met a Cop, showed us where to park here Oh, oh oh oh oh oh…” --Ok, not ALL of us realized that, and not all of us appreciated the singing of that in a parking deck. But it seemed apt. Andrew pointed out later that CHOP isn’t a CHOP of horrors, but I think a Saturday night ER visit qualifies. Even if the officer who told us where to park was quite nice.

Sunday, October 12, 2008 3:25 PM CDT

Hi, all—

First of all, woohoo to the Pauxtis family for another Wonderful day at the 2nd Timmy’s Tour de Shore, a cycling event at Sandy Hook that raises money for brain tumor research at CHOP. While only one Camiolo brought a bicycle, and then spent the whole time doing candy sand art, crafts, face painting, bouncy house, stalking the clown, and eating every imaginable treat, we had a wonderful time. I admit I had a Hershey bar around 9 a.m., but it was just that kind of day! ; )

Thank you, Susan & Jay—we love you all, and this is such a beautiful way to honor Timmy.

In other Camiolo-ness…

G’s neck has been killing her since Wednesday. She got sent home early on Friday, crying in pain. With advil she’s better, but once it wears off she’s pale & weepy and a mess. By yesterday afternoon we were too concerned. My sister (nurse practitioner) said call the doc; the pediatrician said “call CHOP”; I called my friend Loice, BT mom & doctor…and SHE said call CHOP (yes, I listened to her more than our local doc, I admit it!)…CHOP of course said, in the words of the late Johnny Oleson, “Come on Down!”

Ugh.

We just can’t ever truly escape it. We’ve had such a good run for a while, but it’s always there. The monster, it’s always there.

So we packed our bags and went to the CHOP ER last night, G missed our neighborhood block party and was Not Amused. “But it’s my Baptism Day!” she wailed…ugh ugh ugh!!! Anyway, we got there by 7, and when you say possible shunt malfunction they move things along.

Of course I had given G advil when she was lethargic, weeping, and in pain…so she was as perky as the day is long once at the hospital. She called Drew back with joke book in hand while waiting for the tests to get run! A CT scan & shunt series of x-rays showed everything was working ok. They wouldn’t do labs to rule out Lyme or some other cause of pain, I guess pain in and of itself isn’t emergent? That is, if you Aren’t THE MOM AND DA??!?!?!

Ok, so Dave & I pushed 2 different doctors, were rebuffed, and we weren’t amused.

If G is still hurting tomorrow, we are going back to the pediatrician & demanding a Lyme test. This pain is just weird, it doesn’t seem simply “a muscle spasm”.

I am a little crabby. We got home just after 12:30 a.m.-after very nearly getting killed at the Flemington Circle ( a car left the circle & didn’t yield, nearly hitting the car in front of us, much swerving and colorful speech from the driver of our car!) . Nobody should be at the Flemington Circle at midnight. Anyway, once home, my son was still up (don’t get me started) even though he had been told to sleep (“oh, Grandpa meant me??”), G was in pain, and I couldn’t sleep because who knows why? I couldn’t keep my eyes open on the way home from CHOP (until Dave’s creative speech! : ) Then I had adrenaline in my toenails, yikes).

I am so tired.

We left for the Tour de Shore at 7:15ish, had a lovely time there, raced back home, quickly changed, raced to a high school open house for Andrew (yikes—we did raise some brain tumor awareness, my girls’ painted faces got a lot of attention, many questions about where we’d been), then dropped him off at his baseball game…and as soon as I finish typing I am going to collapse. But we still have to get to church at 6, sigh.

So for those of you I texted last night, thanks…G is ok. Still in pain when the meds wear off, but not in the midst of shunt yikes. I do have a question about the methods of testing (different than our revision experience), better e-mail our doc. We just aren’t satisfied with the “oh it’s nothing” after everyone was all “Head for the Hills! Ack!” on us. Except when exercising, G is pretty stoic (wonder where she gets “complaining about exercise” from…hmmm?). This pain is not cool.

Last night brought a lot of insane yikes back to the front of my head. I have squished everything, all of that, into a mental box. Those fears, those memories. I wish they had stayed there.

Better go find more coffee or a sandwich or something, I pretty much stuffed myself with crumb cake, a Hershey bar, and a Hostess fruit pie this morning (Oh Goddess Susan Who Had Every One of My Favorite Sweet Things There Today!).

Prayers always for all our angel families…and for Hadley, Gabbie, Drew, Nora, Emma, Katsie, Carly, and everybody.

Peace,
K the very weary

Thursday, October 9, 2008 5:46 PM CDT

Friday:
I sent her to school. She felt better...her head still hurt a little, and her neck, but I gave her some tylenol and sent her off. I am waiting to hear from our long-suffering doctor (I only e-mailed late), but hopefully it's just leftover bug. I don't know. She so desperately wanted to go to school, and she was much perkier than last night, so we'll see.

I just wish I could KNOW more about what goes on inside her...

now I have no excuse, must run. I really really really just want coffee...

peace,
k
*****************************

Hi, all--
Today G is finally fever free! woohoo! but...

she is complaining of headache and neck pain. Now maybe her neck hurts from lying on the couch. And her head hurts kind of in one spot...

G has a vp shunt. Headache is not my favorite. My track record on shunt issues (like the initial need for one and the dang it got clogged) is 0-2. I am somehow always on the wrong side of the learning curve.

G doesn't complain about pain.

I have an e-mail in to our doc. Please pray that I am being more neurotic than usual. For the record, Dave's been freaking out for days. Yes, David. My mild mannered spouse. Mr. Rock Steady. He's been nervous...

And she's all ready to go back to school tomorrow, we have M&M bars ready to bring in...

please just pray that it's nothing but neurotic parents and the last vestiges of a bug.

thanks.
peace,
k

p.s. and now my Boggle stopped working.

p.p.s. Don't forget Timmy's Tour de Shore is THIS weekend at Sandy Hook!!! So much fun, such a great kid and a great cause.

G is wailing...

Tuesday, October 7, 2008 5:53 PM CDT

Hi, all—

We’re still basking in the glow of meeting the RU Lacrosse team; Genna made a card to send, we are figuring out what parka like things we have for colder day games. I can’t say enough about how cool this Friends of Jaclyn program is, and we’ve only just begun!

Unfortunately, G STILL has a fever over 102. Ugh. I caved and called the pediatrician yesterday, got mildly rebuked for not bringing G in after 3 days (side note: how many times have I a brought in a hacking glooby feverish full of every symptom kid only to be told “it’s a virus!”…G had NO other symptoms, just fever. No runny nose, no cough, sneeze, snort, glurp, anything)…they checked her out, everything seemed normal (except the fever…well, and then the nap on the exam table). They ran a CBC just to be thorough.

Another side note: it’s kind of unnerving, the way they tippy toe around us. We’ve always been more than happy with how they all helped us out on Diagnosis Day, and with random pediatric normalcy over the last 13 years. They are good docs there. I’m not sure why folks get nervous. I think I must exude some aura of She Who Has Sat In Hospitals Way Too Much And Now Can Shoot Syringes From Her Eyeballs or something. I think I seem anti-intimidating, generally a Miss Cellophane type…but at the pediatrician it’s kind of like the Dance of the Sugar Plum Fairy around us. Weird.

ANYWAY, the CBC looked not so bad, white count was high, hemoglobin was lowish to them (to me it looked juicy, but I have a skewed perspective on counts!). They called CHOP to double check…CHOP was singularly unfazed, said it looks viral…so we are back to Trapped in the House Mode.

G does NOT like missing school; each afternoon she neurotically does as much missed work as she can until I make her stop. Really, penmanship is NOT something that needs to be made up. She naps a little, watches some tv, and generally is a lump. Today she looks awful, but her fever hasn’t gone above 102.6, which is an improvement.

Still…I am getting a tad stir crazy. I haven’t been able to run…today I dug out an ancient step aerobics tape, the outfits alone were appalling…eek. Haven’t done that one since before I had Rosie. Eek again, but I don’t want to be a lump again, and everything in me except my brain is really longing for lumpiness, especially since it’s getting frosty here in the mornings. Brr.

In happier news, I did reach “Wordsmith” level on “in your face” Boggle on the computer. Sigh.

I have been SO SPOILED. I didn’t think I’d forget so quickly how much just being stuck with sickness messes up regular life. At least this is just regular kid sick! (phew times a bazillion). But we’ve had to cancel 2 doctor appointments, 3 fun things for G (4 if she’s still sick tomorrow), I missed Andrew’s back to school night (Dave went) & a meeting I was supposed to have for a school committee I help with, I missed Andrew’s game (Dave went)…tonight we finished the last carrots in the house…yikes!

I did make a vat of marinara today. And I tidied the freezer yesterday (how does a freezer become icy chaos? Sigh) .Being stuck has some good points!

Rosie keeps sympathetically saying she doesn’t feel well. She’s fine. Of course if she keeps generously letting Cocoa & Big Woofie sit with Genna, she may not be fine soon!

Andrew’s thumb is better (phew!). He pitched some on Sunday night, and had ok control, so disaster averted!

G’s “baptism day” is this Saturday the anniversary of her baptism, our Catholic excuse for cake! : ) We plan to celebrate on Friday because Every Good Thing in the universe is happening between Saturday night and Sunday. If only I could bilocate…! Anyway, she has been telling random people this for MONTHS, I would hate for her to still be sick then. She planned to bring a treat into school (summer birthday, so this works out well), have her godparents over for pizza dinner, and generally reign supreme.

This fever is getting OLD.

But it’s not the end of the world. It’s REGULAR kid sick, sans port, which means no ER. G wasn’t amused about the finger stick, but otherwise this is no big deal.

Really.

But if you can spare a prayer for The Queen of the House of Contagion, I’d appreciate it. Although I have been eyeing my messy silverware drawer…

And this weekend, if you want to have a lovely fall fling by the beautiful Jersey shore, come to Timmy’s Tour de Shore, a bike ride around amazingly scenic Sandy Hook. Timmy was a sweet boy we met at CHOP, and Susan & Jay have done remarkable work in Timmy’s memory to help find a cure for pediatric brain tumors. Check out www.tourdeshore.org (I think) to find out more, or follow the link to Timmy’s main page below to get more info. We will be there (a few of us actually on bikes! the rest jogging as support crew), and we’d love to see you there too! : ) It was awesome last year.

Please remember our friends, especially Princess Hadley right now. Just typing her name makes me teary, please pray for Angela & Brandon & the boys and the princess as she gets ready to … you know.

We need a cure.

Oh, too, we are up & running (pun intended) on www.braintumorsociety.org and the Race for Hope page. It’s only 5K and you can walk…as some of us will be! The G-foRce! will be there, we may improvise shirts this year, or just add 2008 to last year’s shirts…I am SO FAR BEHIND everything, I just can’t figure out where time goes. There will be cookies, that I assure you.

Must try and upload this, my internet has been funky…

Peace, all…
K

p.s. happy b-day to Dave’s cousin/godson, Brian! : )

Rosie just seriously said, “Genna, I am not speaking to You!” and Genna laughed, and then Rosie was offended…at least everyone’s bickeringness has been untouched by virus.

Saturday, October 4, 2008 6:24 PM CDT

Hi,all--

Quick woohoo of extreme weariness...

first: ROSIE'S EYE CHECK YESTERDAY WAS PERFECTION. 100% FABULOUS. "IF YOU DIDN'T KNOW HER HISTORY YOU'D NEVER KNOW SHE HAD A TUMOR" KIND OF WOOHOO!!!!!!!!!

Whatever the weird discrepancy in August's exam, the very nice & very thorough eye guy (who knew about NF, threw out intelligent questions that proved he knew his stuff, but not in a lookatme kind of way, just really asking) found NO PROBLEMS in Rosie's vision.

!

And with the help of our friends Mr. Motrin & Mr. Tylenol, Genna got to go to RU today. She was not well at 5 am, but exponentially better by the time we got to the stadium...crashed and burned on the way out (major headache, and G NEVER complains about pain, I finally told her she has to tell me or I can't help her, it's not like she's doing something wrong if she hurts!!!)...but had a great day.

The RU lacrosse team...you all are AWESOME!!! I e-mailed your coach, but I'll say it here, too...never, ever underestimate the impact a simple act of friendship has on a kid, any kid, but especially one who has suffered like G has. She felt so loved today...despite her headache, she was FLYING when she got home, wanting to tell Grandma & Grandpa all about you guys.

And lacrosse is awesome, I want to play (I would stink, but it looks so fun)!!

Genna cheered her head off, Andrew was mortified, but boohoo. The families of the team put together a fabulous tailgate...really, the whole thing felt like a giant family reunion without the weird uncle that you kind of avoid (no, we don't have such an uncle in the family, I like all my relatives!! a lot! but metaphorically...you know, the metaphorical uncle). It was the warmest in spirit day ever (a bit chilly otherwise, not sure how those winter games will be! but we'll be cheering!).

We are so grateful to the girls, and to coach Laura (and Kelly--we won't tell your fun fact! and Brian, oh pretzel loving Brian...G will remember you!)...it was a brilliant day, and I'm so glad G was up for it.

Thanks especially to Dennis Murphy, founder of Friends of Jaclyn (Jaclyn's dad!) www.friendsofjaclyn.org for making this possible.

I've always been proud to be an RU alum...today I found about 30+ more reasons to be proud.

must go check on my girls...but thanks all, for sticking by us through all the tough days and the days like today! : )

peace,
K

Thursday, October 2, 2008 8:33 PM CDT

Hey--
happy Thursday night.

Just wondered if you all could say a little prayer for G...nothing big, just normal kid sick (I hope...after 3 days I'm starting to question a bit). Tuesday she came home from school, told me she was so tired, falling asleep at school...

how many times over the last few years has that meant fever? You'd think I'd figure that out instantly...

Not so much.

Anyway, she's been sick now for 3 days...almost asymptomatic except for headache and fever, up to 104 each night...

She is beside herself about missing school...and art lesson...and school...she'll likely miss dance tomorrow, we still have to go to the eye doctor (hello, motrin!)...he's only in NJ once a month (? really?) and we were apparently lucky to get an appointment so fast, we can't miss it.

But we are supposed to meet the RU lacrosse team on Saturday, and We Will Go No Matter What, Genna would be crushed to miss it...and she's not sniffly, not coughing, NOTHING except fever...trying not to worry that it's a weird infection, thinking of one of our online friends (God bless Winter!) who is in a tough spot right now. I will motrin her if necessary, but having her be significantly better would be nice...

thanks, all...I know, thank God she doesn't still have a port (hello, ER), and thank God she's not nauseated and can still look all around (hello, shunt), but still...ugh.

And once she gets Tylenol & the fever goes down she is BORED and cannot figure out why, if she has no fever, she can't go to school? sigh.

And Andrew hurt his thumb, he insists we don't need to see a doctor, but it looks like a sausage 3 days post squish, that can't be good.

Rosie is fine! : )

so that's our mini update...we'll post again AFTER we visit the RU team, barring Camiolo-esque disaster! : )

Maybe the smiley's a bad idea?

peace,
Kristin
p.s. happy anniversary, D. love you forever.

p.p.s. happy birthday, Cath!

p.p.p.s. please remember Gabbie, Drew, Hadley, Nora, Katsie, Winter, Erin, Lexie, Paige (scan day) and so many others...

Monday, September 29, 2008 9:39 AM CDT

Hi, all.
Happy Monday.

I figured I should give a quick whatever, this week is crazy (what else is new?)…

Dave did find a picture of himself collapsing at the finish line. Charming. I’m thinking this Won’t be the Camiolo Christmas pic this year. In more productive news, my brother thinks he knows what felled Dave, (hyponotremia…eek), it happened to John during that ultramarathon in Italy a few years back. I am off to get a new kind of hydration mix stuff that won’t mess up electrolytes but will keep Dave hydrated (without him having to drink sugar. I’m the only sugar drinker here, well, me & Andrew). The stuff is called Nuun, we’ll see if Dave likes it.

He may HAVE to like it, my days of being the Shrieking Sprinter of Philly are so done!: )

In silly news, we realized that tutu guy finished the race in 1:30 . I guess you have to be REALLY fast if you’re going to run a half marathon in a pink tutu and while carrying a little floofy star wand.

The boys went and got new running shoes on Saturday, great excitement! I just say lalalalalalala when they tell me the cost, but Andrew did earn them. He just joined the running club at school, and he’s feeling confident about the upcoming school 5K.

Me, not so much.

I just don’t want to run anymore. I know I have to. But I am so tired. And slow. I run like a glacier. A glacier before global warming. So slow.

ANYWAY, the girls had a great time this weekend between the Ride 4 Erik event (a fun picnic, only slightly dampened by rain) and our parish picnic (really soggy). At the Ride 4 Erik event we got to see our CHOP buddy Charlotte (who is insanely sweet and cute, full of hugs and wanting to be right by Genna…which Genna LOVED) and we finally got to meet the Zimmermans, Erik’s family. We drive by their farm EVERY time we go to CHOP, and we’ve never met…Norma, thank you for this wonderful day.

At our church picnic, Rosie was in her own nirvana…a moon bounce & pony rides…and not a huge crowd. She must have ridden that pony about 6 times, the guy finally gave her his card! And there was an ice cream truck…mmmmm.

I am so busy with school stuff…a lot of things are in the works, I think I have to be careful about saying yes to stuff, I tend to say Yes and then realize that hours and hours are required…

Rosie has had an awful time this past week with mouth sores from her dental work…I think she bit her lip when it was numb, and got a horrible canker sore, like waking her up in the night crying canker sore, my poor girl. It’s finally nearly better…but her loose tooth is hurting. She is too scared to pull it out, but it is freakishly disgustingly loose, even Andrew was grossed out (which says something). I hope the darn thing just falls out already.

And Genna did her exercise video this morning! I am so proud of her, I know it’s a mental battle and a physical one for her, but she DID it!!

Busy, busy, busy.

Our doc talked me off the ledge kind of once again. I just have to think of new and different things to raise money for a cure. I gave my sister Annie my sketch of what I want on some new NF stuff…she is an illustration major at FIT (I am so jealous!), so she has the tools to make this be awesome. I also have to rethink our logo for the Race for Hope. We will still be G-force!, but I really need to make it more G-foRce!...who’d have thought between last year’s race & this year’s I’d find out I have another kid with a brain tumor.

That also gets filed under Way Not Cool.

Ugh.

We have our work cut out for us on the HOPE front.

I have to go do some house stuff (and maybe at least walk today? Sigh), but please pray extra hard for our NF buddies Gabbie and Drew this week…for Hadley, in a very hard place in her journey…for Nora and Katsie and Carly (x3) and Lexie and Erin and Winter and Caitlin and Charlotte and just WAY TOO MANY kids.

I am not crazy fundraising for Race for Hope, but if you want to join us that day we would love to have a crowd walking/running/just thinking about the cookies afterwards!
www.braintumorsociety.org look for G-foRce! under the team list.

And if you want to spend a lovely autumn day biking by the beach, come out for Timmy’s Tour de Shore…check out Timmy’s foundation page (the link is below) for all the details. Last year the Pauxtis family donated $70,000 to CHOP for brain tumor research. Yes, that many zeroes. It’s an awesome event, please come on down! : )

And to the RU Lacrosse team…we can’t wait to meet you this weekend!!!

Happy, hopeful things…between busy, and working at Hope…we can fend off the dark.

Peace, all.
k

p.s. and Rest in peace, Paul Newman...thank you for all the kids you brought joy to, especially our Sandy.

Monday, September 29, 2008 9:39 AM CDT

Thursday, September 25, 2008 10:58 AM CDT

Hi, all—
Happy Thursday.

We are pretty much back to normal here. Dave is fine…he ran 4 miles this morning and lived to tell the tale, so I guess that’s good. We’re all just a little fried, if that makes sense. Tired. Things are busy, life goes on.

Sunday was just so high and low…

We still haven’t seen a finish line picture of Dave. He wants to, I don’t.

Andrew is so glad to be done with the race…just to know he could do it, he is relieved.

Thanks, too, to everyone who has donated after the race. It’s not too late…I have to start the official thank yous, I lost my address book so please don’t be offended if I am slow. I am just so not organized.

I tried to run this morning and realized I Really Hate Running. Hate. Despise. Ugh. I only got about 2 miles before my knee went weird, I have to figure that out. I want to be able to run for a cure, my loathing of running and my stupid knee are annoying to me! 
I also don’t like being cold, so I have to come up with an alternate plan for running through a New Jersey winter! Ugh.

Ok, my last typing before this was my list o’ questions to our doc…I finally read G’s scan report.

Ugh.

And inexplicably, they sent me 5 copies of the report…someone having a fun time with the copier? Not sure, but really, ONE copy of this horror is quite enough.

Overall it reads stable…but good God, it takes more than a full page of typing to say just what’s in her brain. That’s so not good…it’s unbelievable how all this destruction hides in G’s head…you’d NEVER know it to meet her, it’s unbelievable.

Sigh.

Reading the report brings me to a not good place. The many %^*^&*&*) NF place.
The place where hope gets misty and floats away…

I heard a talk the other day about Hope. This is something I do think about a lot, I wear my G-force! ALWAYS HOPE wristband every day always, just so I can remember. But the woman spoke of hope being performative, that is to say, requiring action. I realized that in this particular world, NF & brain tumor, we are ALWAYS working at hope…whether it be by visiting other cb pages, or baking, or making Café Press stuff with pictures of NF kids, or lobbying legislators, or running for a cure, or fundraising, or just saying “hey” to other families…this is WORKING at hope. If we don’t DO these things, it’s so easy to go to the dark place.

Sometimes I just feel tired. The week after an event is always like this, I just feel tired.

But then I see G, my Wall of Sound (ok, usually I hear her first, she starts talking before she actually sees me! : ) …and my sweet Rosie, and how can I NOT keep working? I have to hope, if we don’t have hope we have nothing. And I know with Dave, too…it’s not like you can outgrow NF, or it goes away when you grow up. Sunday reminded me of that (even though Dave’s drama was NOT NF related)…

Hope is so slippery!

But today is good. Genna starts art lessons/therapy again today, which will be fantastic. Andrew has baseball practice. This weekend we hope to stop in at a brain tumor event in NJ near Lambertville, and our parish picnic. I’m substituting at school tomorrow (of course, it’s supposed to be a typhoon coming through and I have to wear nice clothes, ugh), and then G has dance. Next week the girls will have regular eye checks (for glasses for G, and to hopefully rule out NF Smiting for Rose, fingers crossed).

And I’ve been writing again. We’ll see if I can keep it up, but I read Love that Dog by Sharon Creech (it’s a kid book, really beautiful) and for the first time in a long time, I could hear a story in my head. But this time…it was a story of hope. We’ll see if I can flesh it out, 20 pages in I can still hear it…that’s promising!

When G got sick all those words went silent. But now…I can hear the story I wanted so desperately to write in 2004. It isn’t the same, and really I’m not sure where it’s going…but maybe I’m finally figuring out how to write what I know. We’ll see…

I have to start thinking about Race for Hope (yes, performative Hope again) in November. The G-foRce! Team is online at www.braintumorsociety.org if you want to join us that day in Philly. I do bring cookies, which is a draw for those of us who Hate Running (we do walk the course, a lot of us, that’s ok, too!). I have to hammer out my schedule so we can get ourselves to Timmy’s Tour de Shore on October 12 (Andrew has a high school open house that day…ack, there are 27more gray hairs), but I know the girls and I will be there, I have to sign us up (www.timothypauxtisfoundation.org )…there’s so many ways to HOPE.

And I finally got in touch with the RU Women’s Lacrosse Team!! Our phones were eating our messages, thank God for e-mail! G will finally get to meet everyone on October 4, we are very excited for that. I think it will be so positive for her, and I am so grateful to Friends of Jaclyn for making this happen.

So this was supposed to be my quickie update…yeah, I know. But thank you all, for supporting us. I am so strengthened by all of you…

And again, I have to thank Kelley & Judy for helping me last weekend, and for Steve Kendra for checking up on us after the race. It means a lot to be part of a team.

Ok, need a funny Rosie note after all this whatever? She had a dentist appointment on Monday, to get 2 teeth filled (my poor Rosebud). She is in love with her dentist, and he is leaving to start his own practice in PA…so Rosie made him a card of all hearts and things and danced around the house singing, “I love him, I love him” on Monday morning…we took a picture with him, and she literally smiled through the entire filling. It was really cute, the hygenists were all melting over Rosie’s complete moominess over Dr. Amith. We seriously may have to drive to PA for R’s dental care now…!

Genna used to be in love with her neurosurgeon, so I guess I shouldn’t be concerned!

I also realized I might need to get a shirt that says STUPID TUMORS like one of the other NF moms had on Saturday. I haven’t worn t-shirts with words in YEARS, but you know what? If someone sees me staggering along (er, running) with my big NF yellow t-shirt and thinks, “hm, wonder what NF is?” that’s a start…another tiny step to a cure.
And really, wearing a stinky Yeti shirt is therapeutic, I wore to back to school night on Monday and felt very empowered to Live the Funk and Cure NF!

Peace, all—
Kristin

Special prayers for Hadley…sweet Hadley bug, my heart is breaking for all of you…
www.caringbridge.org/ca/hadleyfox

and for all our friends…Gabbie, Nora, Katsie, Emma, MM, Drew & Joey, Carly x3, Peter, Lexie, Erin, Steven, Regina, Jordan, Ben, Cole, Thanos, Angelica…

Sunday, September 21, 2008 7:12 PM CDT

Hi, all—

Short note to people with us today: we’re all good. Home, ok.

Ok, long version…? Phew.

THANK YOU to everyone who supported us & the Children’s Tumor Foundation. Over 120 people ran with the neon yellow NF shirts to raise awareness and dinero to Find A Flipping Cure Already.

The pasta dinner was awesome—glad to finally put faces with names!-- we got to the hotel without too much event (some cursing of Mapquest, but that’s not unusual), the room was small (ie the sleeping situation was a bit, um, Little House on the Prairie), but we were on the 15th floor, a room on the corner of the building…the whole corner of the room was a window overlooking Market Street, the beautiful City Hall, the colorful skyscrapers…it was mesmerizing. The kids stood on the windowsill 15 stories up and just looked and looked (ok, so did I). We finally got all our pre-race stuff done, and finally got everyone to bed by 10:40ish, WAY later than we meant to.

5:30 came too early. As always.

We followed the hordes of people through the dark streets of Philly to where the race began. The girls were NOT amused at the long & brisk walk—but they made it to the CTF tent. Dave didn’t feel 100his morning, both he and Andrew were nervous…the day was warm, even at 7 a.m. I was warm, which says something. I’m always freezing.

7:45…race start! We took up our position just past the 4 mile mark with our neon signs and our Great Loudness and enthusiasm. What I lack in running I make up for in neon signs and volume. The lead pack came by (insanely fast), we cheered and hollered…we saw the guy in a tutu, the person in a full chicken suit, a guy juggling, a guy wearing a kilt and a t-shirt that said, “In my head I run like a Kenyan”…Dave passed, smiling and woohoo, Andrew was only a few minutes behind (they were at different start points)…I felt relieved to see Andrew still running strong (and of course wearing a baseball hat…we were going to make his hair blue, but he runs with a hat because “my hair bounces and I can’t stand it”).

The girls and I took the long walk around the finish area to get to a point where we could see the runners nearly at the end. This year we parked ourselves right next to the 13 mile marker, only a tenth of a mile before the end. The fence has no banners on it here, so Rosie can see. After about 1hour 30 minutes we started to see the first few NF team runners…we chatted with Carly’s Crew (Carly looks so fantastic, hooray!), cheered tutu & chicken guy again…then Kelley saw Dave…

And then I did.

Kind of wishing I could tear out my retinas right about now, I can’t get that picture out of my head.

He was hurting. Really, really hurting. Not tired and sweaty…bent in half and staggering. His eyes were unfocused, he was hardly still standing. For some of our oldest friends, remember Denver ’93? He looked like that but running.

My hands are shaking just typing this. I knew it was so bad…

I ran the 100 feet to him, saying things that started out Holy! and ended somewhere far less so (sorry to anyone by me, sigh)…but there was a fence…I ran back to Kelley, Goddess of All…Kelley, thank you so much for keeping the girls & collecting Andrew...Genna was scared "did Daddy fall? thank God she didn't see him, her eyes are slow…and then I sprinted across the grass to where the road curves to the finish.

Two runners were supporting Dave, one NF guy and one person I don’t know…thank you…and I ran along the fence screaming “You’re almost there, you can do it honey, you’re almost there!”…the 2 guys had to let him go about 100 feet from the finish, and then I sprinted towards the line to try and catch him at the end, but there were so many people (I think neary 17,000 ran today), I couldn’t find him and I couldn’t get through…Judy Kendra (also goddess) of the NF team helped me try to find a way into the giant corral fence area, I couldn’t see Dave…I was literally running in circles trying to get in (and I worried I wouldn't run today? sigh)…I got to the medical tent at the finish but he wasn’t there…I saw one NF guy and called him through the fence (literally, “Hey, NF Running Guy! Have you seen my husband?”…in neon yellow, and staggering like Death on Two Feet you’d think he’d be hard to lose….

Then my phone rang…it was the medics, Dave was in a big tent, I was nearly there before I hung up the phone.

Good thing I wore my real sneakers today.

He was on a stretcher, 2 IVs in. Apparently he passed out at the finish line…until about 10 minutes ago we weren’t sure if he finished, he doesn’t remember the end of the race. He doesn’t remember me yelling, he didn’t know his phone number…his eyes were rolled back when they got him…

I'm thinking we Won't be buying THIS finish line picture.

I also told him this was Way Not Cool.

His first question? “How did Andrew do?”…and then “but my time was the same as last year.”

After about 2 minutes the medics told me Dave had to go to the hospital. Really, what says “Fun Time In Philly” more than a trip to a hospital?? Son of a frimfram…so they told me where the hospital was, and I went back to find my children, leaving poor Dave…who was not really all that much better, he vaguely remembers me being there, and the ride to the hospital was apparently rough…

Back to the tent, around the giant corral…and there was Andrew, munching a snack, sore but triumphant. Thank God. I was so worried he’d be down too…

Once again we began the march around the giant corral, back to the hotel, then to the hospital. Of course now the hordes weren’t all going the same place, and I realized He Who Pays Attention to Which Way we Went was riding to his destination…argh! But we found our way the mile or two back to the hotel, Rosie was SO SLOW, thank God she was wearing neon and someone had given her a cowbell. She was hard to lose despite her snaily walk. We packed up, left our stuff…and walked the few blocks to the hospital…

…Where they told me the kids couldn’t go into the ER rooms. I totally offended the guard (“what am I supposed to do with my children? Is it safe to leave them here?”…apparently yes? But I was a bit on edge)…Dave looked utterly pitiful, but he felt a lot better, they had done 27 tests and such, prelim stuff came back ok (no heart issue, just dehydration)…they told us they’d re-run the tests in 4 HOURS. Oh, no!

The waiting area was ripped up chairs, a tv showing videos about “how not to fall!” and “don’t get dizzy when sitting up!” and a couple of vending machines. Well, and 2 very attentive guards! : ) 4 Hours was not going to be fun…I did take a lot of notes for my future travel guide, “Hospitals of Philadelphia: the Family Tour”…and finally they let Dave say hi to the kids…

But then the doc said Dave seemed ok, it was up to him to stay or go…guess what Dave chose?

By then, we and the guards were buddies.

So we are home. Things didn’t end as I hoped, I have no great post race pictures—it seemed unfair to Dave to do hospital gown pictures—he was quite irked to have a Giant Yellow FALL RISK bracelet. I guess if you pass out at a race you’re a fall risk? But we did just find out that yes, Dave DID finish, in 1:43:06 …barely walking, he was less than 1 minute off last year’s pace. And Andrew, my brave boy, finished in 1:51:16…he placed SECOND in his age group. 27 kids ran in his age bracket, and he came in SECOND??? I wish I had seen him finish…

But I am so proud of them both. A bit rattled, but so proud. Both of them showed what the NF Endurance Team is all about today. They gave it all…I am so grateful for both of them, for my girls who cheered on all the runners…I am so grateful Dave is ok.

Now we’re trying to figure out what went wrong…Dave drank 30 ounces of water this morning…it was so hot…he couldn’t have a banana (only green ones left, next year we’ll bring our own)…he was a little sleep deprived, he has a cold…we don’t know what happened, after all his training…but he endured. He scared the wahoozies out of me, but he endured. Who needs blue hair when I can go gray so quickly?

But anyway, Thank you, NF team, for letting us fight the beast this way. Thank you, everybody on the team we didn’t really know beyond “Hey, you have the same t-shirt as me!” for being worried about Dave today, for helping us…we are so proud to be a part of this army of love.

And thanks everybody, here…

Days like today, I feel like maybe someday we CAN find a cure…

Peace,
k

I am putting a pic of my boys in the album, I have limited good group pictures.

p.s Team Lexie, we were thinking of you today! : )

Thursday, September 18, 2008 12:11 AM CDT

Hi, all—

ONLY 3 MORE DAYS UNTIL THE BIG RACE!!!

I have not nearly done the fundraising I should…note to self, scan week should NOT coincide with race week…but if anyone can help, no amount is too small. Really.

I have been working hard to convince Dave to do something crazy, but so far my efforts have been unsuccessful. Andrew would love to dye his hair purple…if he could get up to $1000 (a huge leap from where he is) I would buy him the dye! : )

www.active.com/donate/nfphilly2008/acamiolo

www.active.com/donate/nfphilly2008/dcamiolo

A million thanks to all of you who have so generously donated. Our gratitude really can’t even be adequately expressed. Every dime is a step closer to a cure…

And I’ve realized that scan day, even a Good scan day, rips off my fabulous haute couture Denial Dress and leaves me in reality rags…looking at all the pictures…the pervasive wreckage inside my child’s head…it’s way not cool. I have said to about 5 people this week that it’s really akin to stepping out of your house the day after a hurricane and saying, “phew! We weren’t swept into the sea!”…but then looking around and seeing a boat on your front lawn, a tree on the roof which is now on the neighbor’s yard…a cow wandering by…eek.

The spinal scan is so fabulous I can’t overstate it. Reality doesn’t always bite.

The brain scan…well, it’s stable. Stable is good.

My kid having a brain tumor: not good.

So the not good is as good as it can be, which still doesn’t leave me feeling warm, fuzzy, and woohooish. And seeing Stable means I have to SEE the scans, which I never look at once home unless ABSOLUTELY necessary. Once is enough. It’s not like I forget…

Or, as a friend and I discussed, we can move forward, but not on. The Bag o’Woe is coming with us. But we still get to carry it, and that is ultimately a good thing.

Yes, my brain goes in circles. Sorry.

Scan Day just reopens everything.

I had to say to someone today (online) that Rosie is technically (!) a bt kid too…and I fell apart while typing. Hello? Not so much feeling the I am Woman Hear me Roar thing today.

Dave took me to the diner Tuesday morning, which was nice. He knows, now, that I am road kill the day after a scan. I have now found 3 things I totally botched/accidentally threw away/ or forgot in the week before a scan…thankfully I caught them pretty early (all school stuff….all utterly lost in my head). Just when I think I’m handling things well before a scan! Oh, well. We’ll see what else turns up…

And I tweaked my knee yesterday while running. I go 1 mile an hour and hurt myself?? Frickafracka…but today it feels better, I was worried yesterday when it didn’t stop hurting after I stopped running. Usually pain and exercise are a totally together thing for me! : ) Today it only twinges when I go down stairs. So stupid…

Now I’m trying to pick up where I guess I left off in July…things I meant to do, get settled, take care of, things that got paralyzed in the giant What Ifs. I may try to get to a bit of our prayer group’s retreat this weekend, I kind of need quiet time not in my house, if that makes sense. We have to leave for Philly on Saturday afternoon…

Anyway, thank you all for praying so hard for us, for hoping and fighting and everything. I cannot express how much it means to us…

I’ve been working at the library this morning, doing writing and paper work and such, just to be not in my house. But I better run…I am desperately craving Boy Scout choco-caramel popcorn, I have 2 containers we never opened…mmmm.

Peace, all—and please pray for my “boys” on Sunday, especially Mr. I am Young so Training Isn’t Quite the Priority it Should Be. I will try to update…and I will certainly take a bazillion pictures! : )

THANK YOU, EVERYBODY!!!

Peace,
Kristin

Monday, September 15, 2008 7:56 PM CDT

BRAIN IS STABLE!

SPINE IS (drum roll) CLEAR! Just a spine, a regular spine, a spiny spinoramba!

Phew. Times four million.

I NEVER get to say something is CLEAR. Ever ever ever.

Yes, I like it. : )

Longest day ever, marked by one very nice visit with a fellow bt mom (THANK you so much, Meri, for finding us), one near panic attack when the promised 2 hours of scan got to 3 hours, one VERY groggy Genna – long scan equaled double sedation, three very funny flower pots full of chocolate brain bouquets (always fun to bring) one purposeful march by our doc to go GET the scan at 5 when it still wasn’t online…

And one stable report.

The scan is still a nightmare, the areas of concern are still there but they aren’t any different. We spent a LONG time going through scans from the past year and beyond…something the radiologists had obviously also done (the Archive mark was gone on about half the scans, meaning they had been checked)…I am grateful for the thoroughness of everything. I hate so many questions, that sickening feeling of seeing all the stuff that shouldn’t be there…but I am grateful nothing is worse.

And I am so grateful for all of you.

I feel like we got a reprieve. A major reprieve, more time…time to find treatments that work, time to get scientists curious and engaged in battling NF.

Genna had a moment or two of frustration that the tumors weren’t smaller or gone. Sigh.

She got her 2 bags of chips, told Drew’s “what did the braces say to the teeth” joke to everyone (with credit to “my friend who is 10 like me but not in my class”), made a friend in the playroom, tried to hide on a couch in the playroom under a hospital blanket (to the great amusement of passing nurses), and on the way home we woke her up and got her a Happy Meal, a treat she never gets any more.

Last night when I couldn’t sleep, the moon was so bright, shining in my windows and making bright squares on my bed…and I truly felt like all the angel children were looking down on us. Ok, so I was kind of sleepy…but it was comforting, that giant moon glowing over us, coming in on us…

Thank you all, for all your prayers…and Diane, the pin came today…THANK YOU.

AND when we got home…my camera was back…fixed…at no charge!!!!!!!!!!!!!!! My pitiful letter (and original receipt & packaging) worked, I am beyond so glad.

ONE week until the big race, the race for a cure…and we can go CHEER OUR HEADS OFF for the team, the team running for my G & my R and for Dave, too..

Thank you, all…

Peace,
k

www.active.com/donate/nfphilly2008/acamiolo

www.active.com/donate/nfphilly2008/dcamiolo

Sunday, September 14, 2008 7:27 PM CDT

Hi, all…

“Run when you can, walk when you have to, crawl if you must; just never give up.”
--Dean Karnazes, author of Ultramarathon Man

Trying hard to do this…

My somewhat involuntary insanity of busy-ness has kept reality mostly at bay the last few days, except late at night…sorry to anyone who’s page I posted on late at night. My heart is so full for so many people, and somehow when we get back to The Day, I get even more connected to my cyber circle, it’s almost like my brain somehow needs to suck any “we are not alone, other people do this, we are not alone”…

I just told G (as I’m typing) that Gabbie’s mom said “2 bags of Doritos for tomorrow”…G is now verbally budgeting her chips (“well if I get two bags, instead of pretzels on Tuesday I can bring CHIPS for lunch!!!”)…shameless! : )

Andrew started baseball…SO GOOD to be with our springtime friends. Today he pitched for the first time in months. We actually had a mini-garage sale for Abby White yesterday, very last minute (Abby runs www.orphancancer.org and helps cancer kids in Africa; G has been Determined to have this sale). I was overwhelmed a bit by the other donated stuff…but G made about $40 in 3 hours, and I got the freebie foozball table out of my basement for $5, so I was thrilled.

Today was the Make a Wish NJ picnic; we’ve never been able to go, once I knew tomorrow was The Name We Do Not Speak I signed us up. Busy, busy, busy. This is one major picnic…a bouncy thing, Mickey & Minnie Mouse, GREAT food (something was spelled wrong on the catering truck, both sides, which was intriguing to me…but their potato salad was fabulous, so I got over it), 2 professional wrestlers were there (nice guys), there were about 8 different crafts, lots of fun things to do—Darth Vader and Chewie & some Storm Troopers were there (I didn’t feel so dumb about my levels of woohoo after I realized these guys do this for fun, like they own the costumes. My enthusiasm pales in comparison…! The storm trooper with a coke in hand and holding his toddler was kind of funny to see)…Andrew was not thrilled but G & R had a blast. Genna requested YMCA and got it, and Dave wore her “crazy hat” while she danced. He won’t dye his hair purple (I told him popular demand is rising!—Andrew volunteered, Dave said for him, “it’s not happening”…I’ll keep trying!), but he will wear a crazy balloon hat! : )

Looking at pictures from our Make a Wish trip was hard (we brought some for a scrapbook page)…G looked so sick, the incision from ear to forehead showed when she was swimming…those people are so awesome, the love in that organization is crazy. Thanks, MAW.

And tonight Andrew had another game & we celebrated my dad’s birthday. Fun.

Just finished getting lunches together for tomorrow…I’ve packed NOTHING else, I always get a just in case bag (with the shunt we don’t mess around), I stuff my most recent bag of peanut butter M&Ms in my monster hospital bag…nothing is ready. Denial may have to step aside so I can prepare for that 6:30ish departure.

The Ugh is at 10 I think (we have to be there by 9), brain & spine (i.e. it’s much longer than brain & orbits), then we see the doc at 1, translated equal 4ish. I know there won’t be a preliminary read at 1, and I will not leave until someone tells me something.

I just feel hollow. The elephant snores, it’s hard to fall asleep at night.

At least I’ve been watching way too much of NY fashion week (we get the NYC public tv channel that broadcasts the shows). I have some great ideas for the spring line for my pet pachyderm.

So we’re off…whatever it is, it is. We aren’t alone, you all have carried us so much. Please pray for us tomorrow, or do whatever positive thing you do…in church today I kind of didn’t even know what to say…duh, healing would be nice…but that doesn’t seem to be the plan right now. So grace for whatever the plan is? Sigh. The control freak in me doesn’t like that…neither does the mom.

4 years ago yesterday G got her port & first chemo.

I’ll update tomorrow night, likely late-ish, I don’t expect we’ll be home before 7 at the earliest...

Peace,
K

p.s. Mad World is the saddest song I’ve ever heard. It’s been in my head all day…the saddest song I’ve ever heard.

And PLEASE...we are one week away from the big race...if you know anyone who would like to support my boys, please just send them the links above. Thank you.

Wednesday, September 10, 2008 12:49 AM CDT

THURSDAY, September 11--
Our thoughts & prayers are with everyone affected by the attacks on our country. 7 years seems like yesterday...we will never forget.

..."may perpetual light shine upon you, and through the mercy of God, rest in peace."

peace.--k
************************************

Hi, all.

It’s way, way too quiet here on the Eastern front. Well, I am blasting David Bailey music (after blasting Brandi Carlisle and Tenth Avenue North)…it’s just so quiet.

If anyone knows anyone who is a gazillionaire and is tired of terrible disorders plaguing kids, can you send them to Dave & Andrew’s race pages? I wish I could promise that Dave would get a Mohawk, but that is not going to happen. I think he would look scary with a Mohawk. John looked funky, but I think Dave would look scary. If I did it, Andrew would be so mortified…not sure it’s worth the therapy. But I will think of something to encourage folks to PLEASE help us find a cure. I am working on ideas…I wish I could bake every donor a chocolate cake, or let my girls come hug you (they are hug machines…they get that from Dad). We can’t…but we are so grateful for every dime of support.

Right now is a very tough time for our NF friends and one of my first brain tumor friends. Really, really tough. I feel like we are trying to circle the wagons…but does that ever work? Did any attack ever get turned back by standing together? I don’t know; but I do firmly believe that together we gain strength. At least those early pioneers who circled their wagons knew they might be going down, but they were going down together.

Every time we get to these dark places with our friends, it’s like someone is pounding a rock on my chest. And yet, in a weird sort of irony, we draw strength from each other. We fight and pray and hope and storm for each other…

This journey can be so isolating. It’s very lonely. It’s hard to circle wagons that literally stretch across the country, from coast to coast. Thank God for the internet.

Please do pray for sweet Hadleybug (ca/hadleyfox) and for our buddy Gabbie (visit/gabriellehughes)…for Nora, Drew, Devon, Katsie, Carly x3, for Emma & so many other kids…

And Genna is starting to KNOW. She just KNOWS. She asks & asks about certain kids, worrying…I always tell her a safe, comforting answer without lying. But she is so attuned to things…

I just have such a bad feeling about Monday. The river of Denial here has rarely run so mightily. I have just been Not Thinking About It. I feel a bit like I’m trying to slipcover the elephant in the living room, but what else can I do?

In jollier news, Genna is LOVING school. She loves her teacher…he is a font of stories, and Genna LOVES stories, she loves telling me the stories. Her teacher grew up in the same neighborhood as Shel Silverstein…G is delighted, she keeps pulling out our Shel Silverstein books and showing me the poems about a young Mr. Stein and his buddies. She is using her magnifiers with some success, and I enlarged the first 10 chapters of her religion books (those are small books, so it’s easy). Next: the vocab book, sigh.

Rosie got to school late on Monday due to a dentist visit…as I walked her into the room, all the kids started cheering, “Rosie’s here! Rosie’s here!”…it was so sweet. She told me Miss Munoz is the nicest teacher in the world…and Mrs. Waraksa (her kindergarten teacher…she didn’t want to be disloyal!).

Andrew gave me a heart attack on Monday; I thought he got up to run, I heard his alarm go off and heard someone go downstairs. By 7:15 he wasn’t back…he should have been. I had to get out the door to the dentist, I was Freaking Out, imagining Dave calling from the road where he found Andrew…Dave had keys in hand to go look…then I walked by the Pit That Is Andrew’s Room…there in the pile of blankets on his bed was one big toe…he was ASLEEP!! At 7:30!!! I didn’t have time to fully express my dismay (ahem), but Argh! I had heard Genna go down, I guess…ack!

Yesterday we almost missed the bus; it’s always quite late the first few days of school while drivers learn the routes. I guess by Tuesday they figured the route out, they were 5 minutes Early (after 25 minutes late the day before…Andrew didn’t even have socks on yet). Eek.

Once I got them out the door (again, not my finest hour of peacefulness), the quiet descended like a cloud. Sigh.

I have been working on some writing stuff here (i.e. maybe an actual paycheck? Fingers crossed!). Monday was insanity, Tuesday was the first quiet day here. Gray, torrential rain, quiet.

I sorted out papers and papers. I am a stacker, I stack everything. So many papers…sigh. I figured I can’t go to Ikea until I get the piles under control here. I kind of forgot today was Andrew’s baptism day (our “hey, you’re Catholic, that merits cake!” day…ok,
I can find a reason Everyday for cake, but this one we do celebrate always). I’ve been cooking all morning, my boy likes food. He likes interesting food, which I appreciate, but usually I like more than 12 hours notice on the “yeah, can I have that chocolate cake Dad has?”. At least baking-cake-making-ganache-peeling/cooking/mashing potatoes- getting-ribs-ready-making-bruschetta-toasts takes Thinking, and since denial is largely fueled by Thinking about Other Things, this is working out well.

In sorting out my papers yesterday, I opened a journal I only occasionally use (when things get Really bad sometimes I need to write, not type). Inside was a paper…the paper with all the info from Genna’s first scan, the pre-cert info, what time we had to be there, the rules about food…

The dang chintz covered elephant keeps dancing and waving “ooh! Look at me! Ooh! Ooh!”. Sigh.

I told Dave…he said he has all the first day fax stuff at work, the papers from the after scan phone fest of extreme woe. Maybe there’s an elephant in his office, too. A veritable plague of elephants.

I found an old picture, too…I think it’s only from a year ago, making keychains with Sandra. Genna has her new hair then…no one ever really realized she had lost so much hair, but these pictures show her with all that 1.5 inch long hair in the front…she looks so different.

I just can’t bear to go back.

Sorry, the elephant is poking me on my head with a floor lamp.

Please, please help us find a cure.

Peace,
Kristin

To our friends in the Houston area, be safe…we are praying for you.

Friday, September 5, 2008 10:35 AM CDT

Happy Friday, all.

And first off, HELLO! RU Lacrosse Team!!! We are so very beyond excited about getting to know you all…Genna keeps asking if people have signed her page. I only told her about this when the e-mails started coming…and she is intrigued by the whole thing. She has a voice like a foghorn, so she is ready to cheer you on! We are so grateful for your willingness to reach out to her and to our family…and I hope we can meet soon! (I have to call your coach back, it’s been A Week Of Yikes here).

And thanks, everyone…you know…

Today is officially the first day of school for my girls; Andrew started yesterday. To think I have an 8th grader…eek. To think that Andrew’s homeroom teacher is someone I taught when he (the teacher) was in 6th grade…EEK. And Genna in 5th grade? Rosie in 1st grade? This seems impossible since I am only like 24 years old…ahem. Ish.

Of course there are always flies in our proverbial ointment. (thinking about it, that is a really nasty phrase; who made that up? Ew). Rosie has been awfully sick since Wednesday…high fever, refused to eat, laid on the couch in an utterly pitiful way for 2 days. She came into my room last night at 1:40 a.m. with a “really scary dream” and climbed into bed, it was like having a giant heating pad in the bed, she was burning up. This morning she seems FINALLY better…but she is missing her first day of first grade. 102 fever at 2 a.m. precludes school. Ugh.

Genna, too, was feverish, although not as bad as Rosie. Last night she was inconsolable thinking she would miss today. G LOVES school. She has been excited about having Mr. Stein as her teacher for months. She STILL talks about all the things she’s missed due to hospital what not over the last 4 years (thinking back…her second day of first grade was the day she got her chemo port and her first dose of chemo…so hey, a fever isn’t such a big deal, really). I told Genna if she was ok this morning I would let her go. She had her uniform all laid out, her lunch made, she came bounding into my room looking for the thermometer this morning…

She was fever free, 2 times over an hour, so I let her go.

Rosie took a long bath (she had for real dreads, yikes), and now she is playing. I’m glad she’s better, it’s been a long few days.

So here we are. The start of a new school year. G’s books are not enlarged, we’ll see how that works out. I still have to talk to her teacher; he was away, I was away, we haven’t connected yet. But he is dad to a childhood leukemia survivor (who is now a dad, too!)…so he understands. He was fantastic for Andrew. The new year is always so full of possibility…good or bad, there are piles of possibilities.

We did have some fun with the kids on the last weekend of summer…the aquarium, a baseball game, mini-golf (the picture above; and yes, Rosie wore the glasses the whole time), a cookout at Aunt Meg’s, tubing on the Delaware, Dave & Andrew went to the Rutgers football game which we are Not Talking About (according to the old adage, if you don’t have anything nice to say…you know)…we had some good times. The only yikes there was that my camera broke somehow; my new camera—in its case, in my purse. I am not amused….actually, I lost a night of sleep, just worrying about it. That seems ridiculous, I know, but in our life, pictures are critical. Pictures of first day of school, events and fundraisers, etc., these things are beyond critical.

I think we all (parents in this particular demographic) have this underlying thought that pictures may someday be all…well, you know. The broken camera is way not cool.

But today I borrowed my sister’s camera to get shots of a beaming Genna, an eye-rolling/trying to avoid the camera Andrew (kind of funny) and Rosie in her shiny red nightshirt with the little hearts all over it. We’ll get an official picture of her on Monday.

I may try to get to an NF/school thing at CHOP on Sunday if I have energy for the drive.

We are only slightly more than a week pre-scan. Between sick kids, all the activities, my own medical whatnot (like I said, my annual frightfest…I’m fine again, I am so dumb, before Genna got sick I never noticed health), and the start of school, I haven’t really thought about it. But it’s only 10 days away—brain and spine, 10 days away! Ack.

HAVE I MENTIONED RECENTLY HOW MUCH WE NEED A FLIPPING CURE ALREADY????

I suppose it’s indicative of my brain-state, I’m wearing my Yetifunk shirt today. To join my friend Ori & to use the vernacular: Bite me, NF. Bite me, brain tumors. Frickafracka….

Only 2 weeks until the big race in Philly…if anyone can support my boys (and thanks to those who have) we would be so grateful. No amount is too small…Dave and Andrew are both training, the girls and I will be cheering them on…a half marathon is a lot of miles, a lot of cheering…a lot of effort for our kids. We are trying to focus on NF funding at this point…we will get a team for Race for Hope, but we know times are hard dollar wise, and we can only beg so much…so Dave & Andrew’s race and the Coffeehouse are likely going to be our main focus (unless my brother decides to jog across Death Valley or something!).

www.active.com/donate/nfphilly2008/Dcamiolo

www.active.com/donate/nfphilly2008/Acamiolo

(I don't know why this won't make a linky thing...argh!)

I am so proud of them. I have an idea for some more Cafepress stuff for this, I need to talk to Annie (my sister at FIT) for Photoshop counseling!

And I am considering signing up for a 5k our school has…in a sign of small but surprising progress, I did a 2 mile walking/exercise tape today and didn’t get out of breath…I kept jogging to up the intensity (I was trying this tape out for G, we think maybe she could do this, it’s easy, there’s a one mile version, and it’s not complicated). I can’t believe maybe I’m finally seeing some progress! I just don’t want to come in dead last.

Monday is crazy, with dentist—school—photocopying more of G’s books—lunch duty—start of dance…but Tuesday I am thinking I’m off to Ikea. And maybe Home Depot. I have one more room that needs painting and a bookshelf…and having no kids home from 8-3:30 may drive me insane. I have to get working from home or something.

So that’s another long version of life in Camiolo-land. G is doing well…food is a struggle (after one heated exchange the other day she told me she was “Moving Out!” so I would miss her! I was inordinately amused by this, and kind of happy, it was so normal kid…hooray for normalcy!), hopefully school will be good…

We’ll see…

Please, please pray especially for some of our friends really in a tough spot right now…some of our really good friends, people we’ve known a long while in this…Hadley, Gabbie, Nora, for Drew & Devon, Emma, Katsie, Danny, Caitlin, Laurin, Summer, all our Carlys, Meadow, so many others. And please…especially remember our angel families…back to school is rough.

Wishing you all peace, and avoidance of whatever tropical storm is in your neck of the woods. So much for G’s garage sale for Abby White tomorrow, looks like Hanna is going to sogfest us.

Peace,
k

Saturday, August 30, 2008 6:56 AM CDT

4 Years.

In four years, you can get a college degree.

In four years, a baby goes from newborn to inquisitive preschooler ready to meet the world.

In four years, athletes dream of Olympic glory.

Four years can hold a lot of experiences, transitions, life.

Four years ago today we had an MRI.

Four years ago today a confusing game of phone tag started, words like “something”, “lesion”, “call your pediatrician” thrown out, then “mass”, “tumor”, “hydrocephalus”, “neurosurgeon”, “life-threatening”, “TODAY”. Followed by a lot of weeping and begging someone, anyone, please just to tell me what to do. Please…

Four years, and I still get shaky remembering that day.

Four years ago my friend Jen made us the most delicious chicken divan, she knew about the scan, she was one of the few who knew our NF story & the fears we carried. I still remember that casserole…and the look across the kitchen, trying to convey the horror without saying anything…and Jen knew…

Four years ago I still had a baby in diapers. Four years ago my diva dramatic little girl was ready to start first grade. Her kindergarten teacher was battling her own brain tumor, a battle she ultimately would not overcome. Four years ago Andrew was on the brink of fourth grade, growing from little guy into official Big Kid. Four years ago I was young mom on the go.

Four years ago I had manuscripts ready to go to editors, book projects mid-development, good feedback from an editor at Dial on 2 of my projects, second revision offers from Highlights…that seems like a lifetime ago now. Four years later the files sit, silent and still.

Four years ago Dave weighed 65 pounds more than he does today. Four years later he is running half marathons for a cure, and starting to talk about whole marathons.

Four years later…I bought sneakers, and now I use them. It ain’t pretty, but I use them.

Four years ago I had never heard of the Children’s Brain Tumor Foundation, the Brain Tumor Society, heck, I had never heard of the Children’s Hospital of Philadelphia. Philly was for South Jersey people, “our” city was New York. Four years ago I didn’t know there was such a thing as neuro-ophthamalogy, much less how to spell it! (my spell check has no suggestion for it, which should tell me something!) Four years ago the Children’s Tumor Foundation was my only connection to other folks with NF, but the scary stories there kind of kept me away.

Four years later, our scary story sometimes keeps me away. We are the people that scared me, and I don’t want to do this to others.

Four years ago I never imagined I’d help moderate an internet group for the parents of kids with low grade tumors. Four years ago Ebay and history sites were my main internet experience! Ok, I haven’t made much progress, and I’m lucky there are several wonderful moderators, but still…

Four years ago the thought of driving on a major highway to points unknown was cause for panic. I still won’t drive into Manhattan…give me another four years…but that phobia had to get squashed when chemo one failed and we had to start over. Four years is a lot of driving.

Four years ago I never worried about my own health. Now, about once a year, I am convinced I am dying of some strange malady, have weeks of absolute mind numbing fear, go to the doctor, and get told it’s an allergy, or stress, or something. Coming up to that time of year again…ugh.

Four years ago, my worst nightmare would not have held 2 children with brain tumors.

Four years is time enough for skyscrapers to be built. Philly has a different skyline than when we started going there.

Four years ago I hoped that someday we’d save enough money to take the kids to Disney. I never dreamed Make a Wish would be us. I still can’t believe we did that.

Four years later, I still can’t believe this is our reality.

Four years, and still people on the street would never know that Genna bears such a terrible thing. Four years later, and I see someone in a store with a scarf on their head or a mask, and I have to try not to cry and I have to fight the urge to go and say, “I am pulling for you. You don’t know me, and you are probably really not wanting people to randomly talk to you, but I know…chemo sucks, and I wish you the best in beating whatever monster you are battling.” My timidity always wins, but I think that sentence REALLY hard in their direction.

Four years is a long time, it just seems like a lifetime. I was so young four years ago. I feel so old now…and young at the same time. Too young to do this brain tumor thing. But really…is there EVER a good age for a brain tumor? No. Never.

We took the kids to the NJ Aquarium on Thursday, an outing we haven’t done since G was a baby, we think. The Aquarium is in Camden, right across the river from Philadelphia. We actually opted to drive our CHOP route and then get off the highway at a different spot, it seemed less annoying to drive through PA and hop back into NJ! Anyway, we looked across the river to the Philly waterfront, and saw the boats moored there that you can tour, a tall ship and I think a military boat. The kids didn’t remember going there…but we did…4 years ago, a few months before G got sick, on our “let’s go to Philly, we haven’t ever gone there with the kids” weekend.

4 years is longer than my children’s memory, at least in this case.

Four years, and we stand again at a question mark moment, a scan in two weeks…I just don’t know where to think about that, what part of my brain is equipped for that. There really isn’t any part, yet.

But today at the craft store I told Genna my next CHOP idea, it involves floral foam and chocolate brains, I think we could have a winner. G loved it…

These little silly things, the treats for doctors, the jokes and cheers, the events like Race for Hope and the Philly Distance Run and the Coffeehouse…all of these are stepping stones. Over the last four years we’ve picked our way through the torrent that is a brain tumor journey, finding stones along the way to hold us up out of the water. Sometimes I am tired, tired of trying to come up with a cute idea or another impassioned plea for money for research to save my children. Sometimes I really do wish everything was all better, that we could go back four years and have Dr. Chen say, “yes, Genna is nearsighted just like mom, here’s a prescription for glasses that someday you will look at in pictures and laugh and be embarrassed by, and say MOM, why did you let me get those? so have a nice day.”

But since I don’t have a time machine (where is my TARDIS when I need it?), we pile more little stones in form of song & cookie, or step to a day at the circus or a picnic with generous volunteers. The water is dark and scary. Even after four years, it is so dark, and so terrifying, and it hasn’t gone away. Sometimes it’s quieter, more of a stream or creek than a torrent, but it only takes one scan…one headache…one “I can’t see it, Mom” for the water to rise.

After four years, I am still trying to redefine happily ever after.

After four years, I am trying to figure out what I am supposed to be doing. What is my role, my purpose here? I know too much now to do nothing...I’ve cried for too many lost children to just do nothing. But what can I do? I still don’t know.

After four years, I am still so afraid sometimes. Watching fireworks tonight at a baseball game all I could think, as Rosie snuggled on my lap and we watched one really sparkly charge rise in the sky, burst and fall in a shower of sparkles…this is the story of so many bt kids. They are so bright, rising, shining…and then darkness comes, and we are only left with the memory of their beauty and the promise of what might have been.

I don’t think 400,000 years could pass and I’d be ok with that idea.

But today we celebrate LIFE. Today we think of hope, and the victory that four years represents. In this marathon that is NF and brain tumors, four years is only a little ways in. We have to keep running, keep hoping, keep working for a cure.

So thank you, everyone, as always. You know, I hope, how much strength we draw from you. Thank you for hearing my constant begging and still helping fund a cure. Thank you for the cards for G, the hellos for Andrew and Rosie. Thank you for holding out a hand when I wobble on one precarious stone, looking for a foothold.

Today we go and help others a bit, and then off to celebrate a first birthday of the cutest, most roly poly, charming Godson in the world, my sweet Owen. Genna will snuggle and love him (probably while he’s trying to escape!), and we will enjoy the day.

Four years in…and Genna hasn’t lost her spark, her love, her affection. Despite the challenges, the scars both physical and emotional, Genna’s spirit is intact. Four years of suffering…and she is still happy, full of love and life. On Thursday she touched a shark…and a ray, and even a jellyfish (which I wouldn’t do—even Rosie wouldn’t touch the jellyfish). Four years ago I couldn’t have seen THAT coming!

This is the moment I have to focus on, the REAL reality of the day. Stupid tumors and disease can’t win…because Genna’s spirit is mighty, and intact.

Four years have only made her mightier…and strengthened my resolve to fight for her.

For all the wonderful, beautiful people we have met directly because of August 30, 2004…we will NEVER stop fighting for a cure. We will never give up. We will celebrate hope, we will show our scars and say, “yeah? Is that all you’ve got?” (well, if you’re me then you’ll neurotically say, “no, really, it’s a figure of speech, I just meant, you know, like these scars show that, um, well, forget it, I’m sorry, never mind, really”)…

ANYWAY, we will stand together and be strong, and help each other step through the river, until we all cross safely.

This is my hope.

Peace,
Kristin

Dave & Andrew both have active.com pages for the Philly Distance Run…$ for NF research. I made a super cute thank you thing for that…

And our G-foRce! Team is up on the Race for Hope site…I don’t look for huge fundraising for that, we can only ask everyone so much…but if you are free, we would LOVE to have you join our team. I bring cookies, lots of cookies. This year we might do a pasta dinner at our house the night before…that might merit cake. Costco cake…mmmm. Peace…k

Saturday, August 23, 2008 7:25 PM CDT

TUESDAY: Check this out! Last Saturday the Philadelphia Inquirer ran a piece about camp...and there is a mention of someone with a funny hat who lives here! (and one of her buddies who wrote a song)...

http://www.philly.com/philly/news/local/27307469.html

Trying to adjust to post camp...lost that thought here, Rosie is trying to explain html code to Genna (yes, be alarmed...she's now saying "font equals Genna, wouldn't that be funny?" and G is arguing that "That would NOT make it colorful!)...better run.

peace, k

*********************************

Hi, all…

I have some VERY tired kids here, but I wanted to give a quick woohoo for Camp all around.

Genna was beaming, hugging people, and literally did not take a breath for about an hour as she told us all of her adventures at Camp. She…

--made friends (!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)
--rode a horse
--rode the zip line
--had her hair straightened (to her great amusement, a few people literally did not recognize her…including our good friend Brett!)
--rode in a go-cart by herself
--played The Devil in “The Devil Went Down to Georgia” at the talent show while wearing a sparkly gold vest and her Cape Cod lobster hat (we take “send costumes” quite seriously! )
--painted 11 piggies for the Pigapalooza…part of the Adopt a Pig project (check www.adoptapig.org)
--won a necklace for being kind and helping other kids not feel homesick(!!!!!!!!!)
--got addresses of her new friends
--did archery
--swam
--found owl pellets on a nature walk and brought them home (ewwww).
--made goop and clay and slime and a homemade lava lamp
--woodburned a plaque with her name and picture.
--chatted with Ronald McDonald
--told the Harley club folks that her friend who was sick like her, his dad works with Harley’s too! (Thomassons, your fame lives on!)
--drummed in a drum circle
--played “The Brain Game” game show
--saw Mr. Kramer (Brett, the social worker) Every Day, which merited 3 or 4 tellings!
--played all sorts of board games
--came home with BAGS of treats/toys/stuffed animals/beads/projects/and little things to replace all the treats/toys/stuffed animals/beads/and projects that I spent the last week cleaning out of her room! : )

And she wasn’t even homesick…she did not write ONE letter, she apologized and said she was just too busy! That’s what I LOVE TO HEAR!!! I asked, too, if she was able to relax (not so relaxed once home…wondering about eye checks, next MRI, etc…sigh)…she said she was having so much fun, she didn’t have time to think about things…

And isn’t that what camp is all about?

Andrew had a wonderful time at Camp too, he is Exhausted, sunburned, bearing ginormous piles of nasty clothing…but very happy. He placed 1st in his class at the Camp Olympics and 3rd in his age group (behind 2 8th graders), he ran and played and prayed and did all the camp stuff he loves. He is in SEVERE friend withdrawal already…I’m not mentioning his unfinished summer reading until tomorrow! Eek…

So aside from some VERY tired children at dinner, Camp(s) reign supreme again.

I am so grateful to EVERYONE who helps out at these places…

The only…moment…G told me, right after I got there, “a sad thing! Adrian died…”—the little girl with all the pets, the little girl in G’s cabin last year who was on treatment and looked…well, like a cancer kid. I had to catch my breath, in a crowd of happy campers…G has talked about Adrian’s menagerie frequently throughout the year…all I could think of was her parents this week…and the pictures from last year…

It was one of those moments where I remembered what Ronald McDonald camp is for…and I haven’t been at my most mighty with that reality recently.

But today was good. Today G is good. She was radiant, hugging everyone goodbye, waving and smiling…she was so happy…

And Rosie was reading highway mile markers, those little green signs…I will NOT go insane about her eyes today! ; )

Less than 2 weeks until school…we plan to do a day or two of family fun this week (Dave has some vacation time), send summer out with a little bang…then back into it all. My September calendar is scary…lots of good things, but really, LOTS…

Dave is officially in Please Give Me Money as I Run For a Cure mode…his website is above, now…we are getting excited and focused on this next moment…our next effort for a cure.

Too many kids, too many families, too many…we NEED to solve this NF puzzle way past already.

Must go extricate Herself from the tub…we have cookie bar sundaes for dessert! Hooray!

Peace, all…and please pray especially for Gabbie, Hadley, Nora, Drew, Katsie, Devon, Charlotte, Emma, Summer, Laurin, Rosie (the other Rosie), all our Carlys…too many…

Peace,
K

you can still check www.yetifunk.com to see my funky brother and read his AMAZING race story...

Monday, August 18, 2008 7:39 PM CDT

TUESDAY: TO read the account of John's amazing race, check out www.yetifunk.com . I almost feel like I should go jog or something...he also has pictures up. Awesome stuff...

And here's a picture of G from Camp yesterday...seeing her happy makes me happy... ; )

********************************

http://www.active.com/donate/nfphilly2008/DCamiolo

Dave's marathon page...

Hi, all.

Happy Monday.

Well, the Yetifunk! Ran triumphant!! John finished the race in 29 hours 35 minutes…we are so proud, especially knowing the conditions of the trail etc. This morning, when I REALLY didn’t want to go run, all I could think of was John limping the last 45 miles of the race…I put on my NF Endurance team shirt and got my sorry gluteous maximus out the door.

Thank you, thank you, thank you, John. And to all my friends who supported him…we are so grateful.

In other news…Genna is off at Camp! She was a bit weepy when we left, but her counselors quickly whisked her off to meet the buses from CHOP. The cabins were all wreathed in festive lights and tinsel for the Mardi Gras theme (or mardi grass, as G kept saying), everyone was smiling…it’s such an amazing place.

There are pictures up on www.ronaldmcdonaldcamp.com …if you look through to the drumming pictures, G is in 2 of the crowd shots. I will obsessively looking for her each day…

Coming home to her disheveled and empty bed was very hard.

While driving from Andrew’s camp (we visited—he sounds about 2 coughs shy of pneumonia, ugh…but he didn’t want to tell the nurses the day he thought he had a fever, he swears he’s feeling better, I am NOT convinced) I had 3 new voicemails on my phone. One from my mom, asking a computer question (stop laughing), one from my dad with the official “John finished the race!” …and one from Dr. Liu, telling me that Rosie’s eye exam wasn’t quite perfect…

Where this message was, I have no clue. The doc called on Thursday, 20 minutes after we left his office…we were literally over his head in the building and my phone ate the message.

It’s not a huge slip, it could be “an aberration”…no panic, but go back in 3 months not six.

I am strangely not feeling no panic. Untangle that sentence if you can!

Technically she is “stable”...but not mom stable. EVERY brain tumor parent knows the marked difference between mom stable and doctor stable. Any brain tumor parent now reading probably has that same pit of stomach argh that I feel when reading this on a friend’s page.

Then I went and actually read the scan reports, which I hadn’t done after scan day. I always get them, but I couldn’t read them this time…so today I did. That didn’t help my avoidance of panic.

We are almost at the 4 year mark. There are some parallels here to G that are making me not peaceful here…and Lord help us, G’s report is a nightmare.

I kept thinking yesterday, G is so big…she was so little when this started, she was Rosie’s age, so little…

That’s a painful thing, somehow, to grow up with this.

Dave was sorting out ticket stubs the other night, each one held a memory of some special time…and he had a stub from August 30, 2004…a Somerset Patriots minor league baseball game. He went with Andrew, which I don’t remember at all…it was diagnosis day, Andrew was just home from camp, we apparently decided they Had to go to the game…I can’t even fathom that, but that’s what we did. I have no recollection…

Sigh.

So this weekend had some great triumphs in our journey…rooting for John, seeing Andrew so happy with his friends, getting G off to Camp and a huge adventure that will help her grow…but it does seem to all grind back to the reality of NF.

Dave’s marathon page is up, I will put it on the page intro because I never remember it. If you can help him find a cure…if you know anyone who can help…please…

Must get a very reluctant and kind of bereft Rosie off to bed…

Long live the Yetifunk!

Peace,
K

And an early happy birthday to Em! And a please don’t get hurricaned to my brother Rich…thinking of you both…

Thursday, August 14, 2008 9:14 PM CDT

Sunday a.m.

John passed the last check point about an hour ago...25 hours into the race...I wish I had found that page with his times yesterday, I worried so much in the night...we will likely be bringing G to camp before he finishes, but we are SO INSANELY PROUD OF THIS ACHIEVEMENT, and just relieved he seems to have thus far survived a night running through mountains in the dark, cold, pouring rain...

GO YETIFUNK!

that he did this for NF kids...you know, maybe thinking of crazy things is the way to go?

ok--need to get herself ready for Camp (well, she's ready, Rosie's being a lump)...but John, we are so pulling for you in these last brutal few hours.

100 miles for a cure...
peace,
k

SATURDAY MORNING:
JOHN IS ON THE MOVE!
Conditions sounded a bit scary...thunderstorms, snow at the higher elevations, lows in the 20s...please pray/root for my brother as he runs 100 INSANELY DIFFICULT MILES for a cure...

to put this in perspective, he hopes to finish in under 30 hours. Conditions as predicted? He hopes to finish...

John, we are rooting for you (heck, I am appearing in a picture, that happens about as often as a Yeti sighting). THANK YOU FOR RUNNING FOR A CURE FOR NF!!!

Not sure if Wendy will be able to update, but check www.yetifunk.com for updates and those spiffy pictures.

peace all, and please think of G as we go to Camp tomorrow...THANK you, Connie, she was SO THRILLED by the package...

k
************************

Hi, all…
And thank you to all our Yetifunk supporters…check out www.yetifunk.com to see John’s funkadelic Mohawk (not colored yet, but still AWESOME!!!)…a fabulous effort for a cure…my Yetifunk shirt came today, I will have to post a picture of my girls in honor of race day…

It’s never too late to join the fun…

Run, YETIFUNK, Run!

Today was a long but not too bad of a day. We didn’t have to leave too early…7:30, got to CHOP by 9:30, to my surprise. We were in and out of ophthmalogy in an hour, which is staggering. No eye drops equaled two happy girls…and in a strangely hopeful moment, the lady who did the initial check is an NF optic glioma survivor…I knew she had NF when she walked in, which also gave me hope …even with an obvious case of NF (which my girls didn’t notice) she was in an awesome job helping kids…I wish I knew her name. I really felt humbled, it was like seeing a future that isn’t awful…

And most importantly, Rose’s vision is perfect, Genna’s is stable (it looked HORRIBLE, the testing, but she apparently is the same as always…only her nystagmus is worse, but that’s apparently a result of existing woe, not an indicator of new woe—nystagmus is wiggly eyeball—Dr. Liu let me see it magnified, very interesting in a scientific way).

Phew.

We do go back in three months for Genna instead of 6…Rosie back in 6.

Still teeter tottering along the highwire here, but the net is holding for today…

In another neat NF moment, we met a friend from the NF boards, Cynthia & daughter Sarah, literally walked into them in the hall! It was great to see them, a really wonderful surprise.

We then trekked off to find a new family on our BT list who happen to be in-house—it was really nice to meet Caitlin and mom Meri…we hope the best for you both…

THEN off to clinic!

There were 2 girls volunteering today, they colored with Genna & Rosie during the 100 minute wait…did word finds, talked about Michael Phelps…not a bad time. G met a couple of kids going to camp on Sunday…more about that in a minute. She made some friends, chatted, had a good time… and finally we got in to see Dr. B…

I actually had written down questions for once, (ok, still on scraps of paper), I got some good info about a bunch of things…we are going to adjust G’s peaceful meds to try and help her a bit more (her dose is still super low), and I’m going to give her more melatonin (after camp). The neurological stuff seemed stable, she “looks great” according to our doc. And I have a pile of info to filter through, yet again.

So I may just tattoo a question mark on my head or something…the What Ifs are immense. But for today we have a reprieve until September 15…if that’s ok, then to Nov. 6…the increments of our peaceful life have just shrunk. But at least we have increments…

I had a moment too of seeing a great strength in G today…one of the kids she was coloring with today must be an NF kid…and she seemed to completely not notice the physical manifestations of the disorder. Ok, so G didn’t even know SHE had café au lait spots until July…but really…just seeing her have not one second of hesitation, not one moment of anything other than cheerful friendship…this meant a lot to me. It’s like she sees with her heart…

Anyway, I am becoming horizontal here…we didn’t get home until 6…but it was not the day it could have been…and for that I am so grateful.

I had a moment at church tonight where I realized how blessed I am…not sure why I get to be the mom of these kids…again, a humbling kind of moment.

After seeing these other folks today at the hospital—I wish I had better words to say just how much we need a cure. If you could be there…if I could show you…I still can’t believe sometimes that MY kids are in an ONCOLOGY clinic!! God help us…

I am sorry to always bother…but Dave’s marathon page is up, he is running for a cure for NF. http://www.active.com/donate/nfphilly2008/DCamiolo

I wish I could do more…other than just constantly beg for help.

I am getting incoherent, better go figure out how to upload this…

Please pray for Charlotte, scanning tomorrow—and for all our friends struggling so hard,…and for G going to Camp, she is nervous but starting to get excited…and for Andrew who seems to have NOT packed half of his clothing (!) and again, thanks, Yetifunk friends…

Peace,
Kristin

Tuesday, August 12, 2008 2:04 PM CDT

THE YETIFUNK CHALLENGE IS ON!

I know, my rambly crabfest was only up for 2 days...but this is more productive than me throwing rocks around my yard...

John's 100 Mile UltraMarathon is THIS WEEKEND!!! He has issued a last minute fundraising challenge...he is at just over $1000 raised...if he can get to $1300 by 2 pm Wednesday, he will shave his hair into a Mohawk, and possibly make it an exciting color for the race. If he gets to $1500 by that time, he'll keep it for his first day back at work next week...

So for everyone who a) knows John, and thinks this would be entertaining or b) thinks anything involving Neon Mohawk is cool (sounds like a band, doesn't it?) or c) wants to help beat %^&*%$## NF to the ground...if you could throw a $1 or so to John, that would be AWESOME!!!!

There is a link on his page, www.yetifunk.com... right above his updates, it's pretty clearly marked.

In advance...thank you.

And officially we are beginning (oh, so late) to fundraise for Dave's Half Marathon in Philly in September...the direct link to his page is http://www.active.com/donate/nfphilly2008/DCamiolo

We think Andrew is going to run too, but we have to sign him up still. Please, please help us run for a cure. If I can invent some kinds of related tchotchke for fun to sell, I'll let you know...

THANK YOU ALL FOR ALL YOUR SUPPORT...WE can find a cure together, I really believe we can...and hey, this way no one has to actually go buy sneakers... : )

peace,
Kristin, who is totally done with NF...

Sunday, August 10, 2008 8:00 PM CDT

Hi, all…

Happy Sunday. Ish. Ramble Warning! Disconnected Thoughts Ahead!

I admit it, I am in a funk. Kind of like one of our favorite Sandra Boynton seafaring songs…”Hey what a crab, what a ho, what a crab! Hey what a crab, what a ho, what a crab! Hey what a hey what a hey what a crab…Hey ho crabby crabby ho! Ho! Crab!”..my kids LOVE when I sing that at them. But honestly, I feel like I could sing it at myself today…well, for the past several days….

It’s that peculiar combination of lingering fear and intense irritation with everything in the universe that seems to rear its ugly head every so often. My kids are making me berserk…and then I feel AWFUL, knowing all the what ifs of my life…and one or two folks have had their heads handed to them by me, I am sorry…my fuse disappeared.

Genna’s anxiety levels seem to be higher, just about life in general kind of stuff (where is Rosie? What’s for dinner tonight? Tomorrow? I will be homesick at camp! Andrew Looked at Me! Etc., times 52,000 times a day). After a fun day at Grandma’s the other day G fell apart at home because I didn’t come to pick her up when she thought I was going to (Peg offered to have the girls stay for dinner as a treat, but I hadn’t talked to G)…I felt so bad about that, I never have left her ever, I don’t know why she is so afraid…We see Dr. B on Thursday, I know we’ve been talking about helping this…it’s hard when anxiety doesn’t always to present as anxiety…it’s a revelatory thing, really. Not all of G’s control freakness is tumor related, eek! (says the pot of the kettle).

I think our dubious scan kind of reminded me of reality. There’s a moment in a Muppet Classic Theatre episode (which we have for…um…the kids…right) where the Boy who cries wolf has just been given one last chance by the wolf to get the villagers to believe that peril is imminent…and of course they don’t. Gonzo is left with a herd of dismayed sheep…and then one sheep says, “Well, this would be a great place to end the story!” “Yup!” answers another…and then a third sings (in Muppet sheep voice) “And they all lived happily ever after!”…at which point the narrator points out that in fact the story is NOT over…there’s still a wolf to be dealt with. I’m with the sheep in saying “Awwww…”

Hey, even in a funk I can ALWAYS bring things back to the Muppets. : )

But seriously…the wolf hasn’t gone away. The wolf isn’t going away. Dang.

I decided yesterday to look up a little girl I read about in the paper 2 weeks ago, a brain tumor kid from CHOP, a Jersey girl like mine…so I dug out the clipping I had saved, went online…and read that they scanned 2 days after we did, she was sent home without hope, and died on Friday.

I cried and cried for a little girl I never met, I only saw her smiling face in the Star Ledger…it’s just so wrong…4 years old…

The wolf has many shapes and forms, but he just won’t go away.

So I am funky. We went to the beach on Friday, Dave & the kids have fun…I am so not a beach person, and I had a to-do list 42 miles long. I tried to sit in the shade, stay not sandy, and I read a great book about the Johnstown Flood—reading about mass destruction was probably not helping my funkiness. And traffic was bad, and Rosie played her new little battery piano the entire ride…

This week is a dentist appointment for G, a Miss Nora appointment, and a CHOP eye and oncology appointment…eyes for both girls, onco for G. Andrew is at Camp, he was SO excited…singing annoying songs, bothering Genna…here’s a sample as he got into the car…
“Rose, I’m going to beat you to a pulp” (no, he doesn’t mean it, he just says it to bug her).
“No, I’m gonna beat you to a po-up.”
“She said POPE!” (this from Miss Monitor of All, G)
“Rose, don’t be sacreligious,” (himself)
“I’m not! (like she knows what that is?) I said PO-LUP, the nasty little stuff in orange juice!” (um, yes, I gave her that definition the last time Andrew said this to her…really, who wants to drink fuzz? But my words in her mouth sounded funny).

Ok, so I thought this was funny, but mostly they were snipey at each other in traffic for nearly 2 hours each way…URP!

But now Andrew is happily at Camp, Genna is getting ready (I have elaborate Don’t Get Homesick Plans, need to work on that this week), Rosie is stoked for Mom-Rosie time…and at night I surf PubMed looking for answers, ideas, anything at all…I did learn that brainstem lesions in NF kids TEND to be indolent…a word that irks me when it’s my 13 year old being indolent, but FINE for a brain tumor. More than one abstract used this word, including a recent study out of Boston…

Sigh.

And melatonin may have some other benefits (other than sleep) for kids with eating issues…have to re-read that one…maybe up G’s dose. It doesn’t seem to help her much with sleep, but her dose is kind of small…and I bought the big bottle, so we’ll keep slogging away… : )

So things go on. Genna is doing well, health wise…as I always say, except for the darn brain tumors she’s in GREAT health! She is only a few hundred minutes away from hitting the 2000 minutes mark in the summer reading program, she told me next year her goal is 5000 minutes…she is so determined. Some day this will be her strength, in some ways it already is. I am grateful for these reminders.

I just broke a nail…argh! (they aren’t fancy, but now one finger looks like I chomped it to bits…which is one bad habit I Don’t have…argh!).

G is obsessing about Rosie hanging out at Grandma’s…better run.

But please remember my brother John…his 100 MILE RACE is this Saturday…www.yetifunk.com , I finally ordered a shirt, I hope it gets here on time. Please pray for little Avery’s family…and Nora, Hadley, Charlotte, Drew, Gabbie, Katsie, Devon, Emma…for angel Dani-Ella’s family on her birthday…

And for our eye check on Thursday, which is kind of critical for G. We’ll see how angry the wolf is…

Sigh times a million. But her eyes Seem ok, it’s just hard to tell…

And I have to run tomorrow, UGH times a million!

I am such a wimp. I did think of another logo we could do, a sneaker with puzzle pieces on it CRUSHING the letters NF…ok, not so much for me, Miss No! Not A Slope! Aaaagh! But more for Dave, Mr. Run 10 Miles on Sunday and Andrew, Mr. Keep Up with Dad on a 5 Mile Run Up Hillcrest Road (named aptly) After No Training At All…

I may be Miss WaaWaaWaa Better Call the Waambulance, but I will NEVER STOP FIGHTING FOR A CURE.

I just don’t have faith in happily ever after anymore—and it’s not like I remembered it for long! Too many of our NF friends are further down this road, and it’s so hard, so painful…

To quote a sheep, this would be a great place to end the story! So I will… : )

And I think someone is coming tomorrow to check out our window…so that’s good! And I’ve found a few songs I think I’d love to have at next year’s Coffeehouse (tentatively March 7), and the Olympics are on…the opening ceremonies were AWESOME…I wish I still taught geography…so there are bright & happy things. My lens is just funk right now.

Thanks for hanging with us…for making it through my stream of consciousness whatnot here! Really, we’ve had MUCH WORSE news, times, etc. I’m just working my way through things…

MUST GO and get my girls to bed…but peace, all—
Kristin

DAVE’S RACE SITE will be up this week, I promise. We are having computer issues, so I can’t check right now…but he AND Andrew will likely BOTH BE RUNNING FOR A CURE IN PHILADELPHIA ON SEPTEMBER 21…A HALF MARATHON…I will keep you posted…

Wednesday, August 6, 2008 9:17 AM CDT

Hi, all…

Happy Wednesday…

We are running a bit in circles here, but what else is new? Andrew & Rosie had their physicals this week…Andrew is 5’4” (ack!) , Rosie is the same pounds as inches (43), everyone seems healthy and good…today the girls are helping Grandma C., Andrew and I will hopefully get through his camp packing. Cath is home from Senegal, so we can visit, which is great.

I am sorry if anyone got freaked out by my vent. I really only do that here so I can be normal –ish in person…otherwise I kind of walk around like Violet Beauregard, ready to pop with blue…

I am wrapping my maternal brain around the ongoing discussions with our doc…thinking of the best ways to approach what will likely come (we’re kind of past maybe, apparently). If we have to do things in the fall, I want to ensure that G has the best possible chance of normalcy…

Ugh.

But I am not railing against the heavens or joining the Foreign Legion or jumping out a window…I am just mad, and discouraged. Thank God there are so many rocks to move here, my walkway garden now has a wall on the yard side, too, which is nice! I told Dave maybe I could get a job with a road crew and they could let me dig all day…

Anyway—things are busy. Fr. Casey’s wake was beautiful, he was really honored by everyone present, and we got to see people we haven’t seen in years…

And in a really NICE note, we have been in touch with a wonderful organization called Friends of Jaclyn (www.friendsofjaclyn.org) , this may be an awesome thing for Genna especially in the coming months…check out their awesome mission.

Thank you all for your support and prayers. We are good…life goes on. Please pray for our friends scanning this week, Charlotte & Devon…and for all our friends. And for John, preparing to run 100 miles to help find a cure for NF…and for Dave & Mark and everyone running and working and praying for our kids.

We MUST find a cure…

Peace,
Kristin

Saturday, August 2, 2008 12:56 AM CDT

Sunday…
Please pray for our friend, Rev. John Casey, who died suddenly on Thursday night…we just heard last night…Fr. Jack was the pastor in our old parish…he baptized all 3 of my children, gave Andrew his first Communion & first reconciliation…we loved him dearly. In our correspondence over the last few years he always asked for Genna, and assured us of his prayers for her…he always used to say, “Hi, Curly!” as he walked past my frantically waving 5 year old G on the way to the back of the church…he was a kind and funny man, a good man, he loved all things Irish and told the funniest stories about the mayhem he and his brothers caused as kids…Fr. Jack, Godspeed….

6 years ago today he baptized my Rosie, I kept thinking of that through church…

This has not been a good couple of days.

Thanks for praying. And sorry this picture isn’t so great, it’s the only one where both girls were sort of looking at the camera pre-scan. Just figured I’d take a shot of them in the parallel universe…sigh.

Peace,
K
and I have no idea how everything got underlined, sorry...

Invictus – William Ernest Henley

OUT of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul

Hi, all.

Ok, so I have been known to “cry aloud” rather too frequently…but this poem is how I feel about NF. In a month where I feel like this disease is jumping on my stomach, where it really is very scary…we stand defiant. I am so angry with it…

I do not want this disorder to control us, to beat us down. I know that some folks get very upset about calling NF a disease…but you know, it’s always treated us like a disease. We fight it with the arsenal used to fight disease…we use the same treatments kids WITH diseases use…it hurts and destroys our children the way diseases do…the semantic hysteria sometimes gets to me.

But, as usual, I digress.

In July we honored Sandra on her first anniversary away from us…we lost Esther…Nora is struggling, Gabbie is battling, Katsie is fighting, too…our buddy Drew has had a rough time…and then our question mark, that spot…there have been moments in the last few days where I truly felt like someone punched me in the stomach. Hard. Repeatedly. In a really mean way…

And these are just our NF friends…our other brain tumor friends are struggling, too. Some of our first friends in this journey…

My heart is in pieces, and each bit of bad news just makes more pieces…

Today when I was jogging, painfully (I really am not good at it), I imagined every step squishing that area of enhancement, pushing out the tumor, little bits flying hither and yon and then just disintegrating…

I hate NF.

It’s been a tough week. I know we will rebound, life is too busy for me to feel lost forever. I did move some rocks, my ridiculous, albeit heavy, personal therapy. I had to decline a job offer for the fall, it was full time and I just can’t commit to that right now, but it hurts to feel useless. And I still have to get a window…our neighbor kind of wants to just replace the glass…or just pay for the window, not the installation. Good thing I’m secretly a window installer…oh, wait, I’m not…well, good thing I got the mega pack of glue sticks at Costco, I’ll just glue the dang thing in. I think I should suggest that next time Mr. 8 Iron’s Parents are in a fender bender, offer to just hand the other person a new bumper and see how that goes… which is likely why Dave is handling these negotiations! : ) And G keeps panicking about rain and the big hole in the window…

Moms are supposed to fix these things. The scary things, the tumor things, not the window.

Ok, enough ranting. I really need to go DO something, this wandering around the house business is totally a waste. I’ve been in conversation with our doc about meds and what ifs and how bad does that eye check have to be for me to jump out the window…I’ve been researching some alternative things that I really don’t think are for us, but I feel like I have to check…I just NEED facts, science, hard evidence before I make G suffer through something…

Dave does have his page up for the Philly Run, I will put the link up as soon as I remember what it is…this benefits the Children’s Tumor Foundation and their Drug Discovery Initiative…actual work towards finding a cure. And please…if you can support John’s Yetifunk efforts, his 100 miler is in 2 weeks…I am going to get a yeti shirt if it kills me, it is so important…he is running 100 MILES. For my girls. For Sandra & Esther’s memory, for Gabbie & Nora, 2 beautiful princesses fighting this beast…for Drew & Joey & Genna & Rosie & Katsie & Carly & Carly & Laurin & Pierce & Summer…so many, too many little ones.

Sorry to vent a bit…I promise I’ll be sunnier next time, I just need to get this out of my system.

Rosie did go to HER first Yankees game this week…she was so cute about it. Genna actually had a friend over the other day, Rosie has been having a wonderful time with her cousin, Andrew is getting psyched for camp…And Rita came to watch Project Runway with me, we had a mini-fest…and tonight we are celebrating her birthday, I got to go to Costco to get You Know What…so see, there IS a silver lining to everything! : )

But the shadow of NF is there. And we will keep fighting…

Wishing you peace, go hug somebody. If they don’t have personal space issues. And not a random stranger…oh, you know.
Peace,
k

Wednesday, July 30, 2008 1:09 PM CDT

Hi, all…

Well, happy Wednesday.

I am almost through the “road kill” phase of post-scan. Yesterday was just so full…Genna keeps happily telling people she is stable, I realize that in normal life the nuances and “EGADS!” that can accompany “stable” are just too much to try and convey to folks who don’t live in this world. Sigh.

But yesterday had a few remarkable things: 1. Andrew’s team won the championship, which was nice. I’m kind of glad it’s over, it was a tough season for him in terms of playing time, even though he played solidly (OBP of over .500), he just didn’t get the playing time he deserved. This is something I’ve NEVER said about baseball, and I won’t dwell on it. We met a lot of really nice families, and got to be with some old friends. But we’re all glad the season is over.

And 2. One of Andrew’s brainiac friends sent a golf club through my front window. Yes, the CLUB. Yes, for folks who know my house…the front window 14 feet off the ground. From the trees near the street. The entire CLUB…through my front window.

At the time, it was kind of the straw…you know, every emotional resource is being used elsewhere, there’s just not much left for golf club through window.

The kid was appalled, mortified…I told him for the good of humanity to NOT join the PGA tour, someone might get killed. After we cleaned up the glass everywhere, it was pretty funny…I mean, the WHOLE CLUB??? From 30 feet away? The dang ball only went about 10 feet and hit a bicycle…

So now I have to figure out how to buy a window.

I did talk to Dr. B again…I understand a bit more the concern, so now I’m just going to try and ride things out. What else can I do?

(feel free to break into “I get knocked down/but I get up again!/no one’s ever gonna keep me down! …ok, or not. That seems a bit too much like a challenge to fate…)

A few funny moments of scan day…they gave Rosie a grown up sized robe, she was drowning in it…Genna kept cheating on her reflexes test…they are back, but she was kicking before Dr. B even gonked her knee, it was hilarious…and at the same time my wobbly Rosie was saying, “Look how high I can kick!” while can canning away behind Dr. B…the nurse practitioner in sedation commented on how chatty G was, even AFTER the versed…the child would not shut up, even half sedated. Poor Rosie went right to sleep, her Woofie & Baby Woofie clutched close…

And I should mention that on Friday we went hiking at Round Valley again, and this year we brought a Tupperware for the raspberries…but we filled it in about 30 seconds, so then Rosie took one for the team and let us use her water bottle…then Andrew was so into it he started filling his baseball hat!! Genna was NOT amused by all the stopping and admiring the raspberries, the scenery, etc., she just wanted the Hike Over With Already. But we had a great time. Sadly, Screaming Nellie’s ice cream is no longer there, it’s just a regular ice cream place…but that night we had fresh whipped cream and wild raspberries, the whole experience was just delicious.

The Kid’s Cruise was awesome…Genna & Peter danced, we met another family from a list I’m on…we saw all these cool art pieces some guy put up on the East River, these manmade waterfall things…right under the Brooklyn Bridge (which was awesome to see since I just finished that 500 page book about how they built said bridge)…we met a Dr. B CHOP family because they had a cute baby and Genna & Rosie have never met a cute baby they won’t go and talk to (!)…it was one of the best cruises yet, especially because this time we took the right tunnel and ended up on the West Side, thus getting to the boat at 7:50…instead of 8:29 (with a departure time of 8:30 last year was a bit stressful)…it was really and truly wonderful.

Funny, funny note...the dj told everyone to get out & dance...so Genna did...but we realized she was doing her Modern Dance recital piece in the midst of all the hip hopping people..."painting her rainbow", doing modern "rolls" that looked like awkward break dancing...the dj actually called out "yeah, get down, Genna!"...Andrew was appalled, Dave & I were laughing so hard as she twirled and modern danced while everyone else was getting jiggy with it... ; )

So now…we have physicals next week for Andrew & Rosie, a bunch of Yankees games that some of us will go to…then Andrew goes to Camp in 10 days! Eek…

I am just so tired…

I made my sorry self run again this morning, I missed too many days with scanblah, I HAD to go today. We measured it the other day, I’m going about 2.2 miles (I added a bit today), I can run about 1.5 miles before I have to walk a little…progress is slow, but I WILL eventually get to where I can help run for a cure. Or at least walk for a cure. I still don’t love it, but I can do it without music now, and I have an official road ID so if I end up as actual road kill someone will know who to call.

Cheery thought, isn’t it? : )

Ok, better go clean something. I just can’t get ahead…G wants to have a little garage sale with her toys to raise $ for Abby White and the cancer kids in Africa (www.orphancancer.org), she (G) had a lemonade stand and made $6. She schmoozed dollars out of one of Andrew’s coaches (Pierre, I don’t know if you ever read here, but I am so grateful for your kindness to my girls…Genna ALWAYS looks for you first when we get to a game), but she wants to get more for Abby. Maybe we should do that this weekend.

Please pray for Katsie who scanned yesterday, Drew scanning on Friday…for Nora and Gabbie and Hadley struggling so, for Charlotte scanning soon…for Devon and all our friends.

THIS IS ONE OF THOSE THINGS THAT GETS OLD FAST. Please help us find a cure.

Peace,
K

p.s. HAPPY BIRTHDAY RITA!!!!!!! Diva queen goddess of all…she who kept Andrew happy on scan day, let me play with her beading supplies when it was too nasty for landscaping (!), indulged in festive libations with me, and is just such a good friend and cousin…eating cake in your honor will be a privilege! : ) (and hey, Project Runway is on at 9…)

Wednesday, July 30, 2008 1:09 PM CDT

Hi, all…

Well, happy Wednesday.

I am almost through the “road kill” phase of post-scan. Yesterday was just so full…Genna keeps happily telling people she is stable, I realize that in normal life the nuances and “EGADS!” that can accompany “stable” are just too much to try and convey to folks who don’t live in this world. Sigh.

But yesterday had a few remarkable things: 1. Andrew’s team won the championship, which was nice. I’m kind of glad it’s over, it was a tough season for him in terms of playing time, even though he played solidly (OBP of over .500), he just didn’t get the playing time he deserved. This is something I’ve NEVER said about baseball, and I won’t dwell on it. We met a lot of really nice families, and got to be with some old friends. But we’re all glad the season is over.

And 2. One of Andrew’s brainiac friends sent a golf club through my front window. Yes, the CLUB. Yes, for folks who know my house…the front window 14 feet off the ground. From the trees near the street. The entire CLUB…through my front window.

At the time, it was kind of the straw…you know, every emotional resource is being used elsewhere, there’s just not much left for golf club through window.

The kid was appalled, mortified…I told him for the good of humanity to NOT join the PGA tour, someone might get killed. After we cleaned up the glass everywhere, it was pretty funny…I mean, the WHOLE CLUB??? From 30 feet away? The dang ball only went about 10 feet and hit a bicycle…

So now I have to figure out how to buy a window.

I did talk to Dr. B again…I understand a bit more the concern, so now I’m just going to try and ride things out. What else can I do?

(feel free to break into “I get knocked down/but I get up again!/no one’s ever gonna keep me down! …ok, or not. That seems a bit too much like a challenge to fate…)

A few funny moments of scan day…they gave Rosie a grown up sized robe, she was drowning in it…Genna kept cheating on her reflexes test…they are back, but she was kicking before Dr. B even gonked her knee, it was hilarious…and at the same time my wobbly Rosie was saying, “Look how high I can kick!” while can canning away behind Dr. B…the nurse practitioner in sedation commented on how chatty G was, even AFTER the versed…the child would not shut up, even half sedated. Poor Rosie went right to sleep, her Woofie & Baby Woofie clutched close…

And I should mention that on Friday we went hiking at Round Valley again, and this year we brought a Tupperware for the raspberries…but we filled it in about 30 seconds, so then Rosie took one for the team and let us use her water bottle…then Andrew was so into it he started filling his baseball hat!! Genna was NOT amused by all the stopping and admiring the raspberries, the scenery, etc., she just wanted the Hike Over With Already. But we had a great time. Sadly, Screaming Nellie’s ice cream is no longer there, it’s just a regular ice cream place…but that night we had fresh whipped cream and wild raspberries, the whole experience was just delicious.

The Kid’s Cruise was awesome…Genna & Peter danced, we met another family from a list I’m on…we saw all these cool art pieces some guy put up on the East River, these manmade waterfall things…right under the Brooklyn Bridge (which was awesome to see since I just finished that 500 page book about how they built said bridge)…we met a Dr. B CHOP family because they had a cute baby and Genna & Rosie have never met a cute baby they won’t go and talk to (!)…it was one of the best cruises yet, especially because this time we took the right tunnel and ended up on the West Side, thus getting to the boat at 7:50…instead of 8:29 (with a departure time of 8:30 last year was a bit stressful)…it was really and truly wonderful.

So now…we have physicals next week for Andrew & Rosie, a bunch of Yankees games that some of us will go to…then Andrew goes to Camp in 10 days! Eek…

I am just so tired…

I made my sorry self run again this morning, I missed too many days with scanblah, I HAD to go today. We measured it the other day, I’m going about 2.2 miles (I added a bit today), I can run about 1.5 miles before I have to walk a little…progress is slow, but I WILL eventually get to where I can help run for a cure. Or at least walk for a cure. I still don’t love it, but I can do it without music now, and I have an official road ID so if I end up as actual road kill someone will know who to call.

Cheery thought, isn’t it? : )

Ok, better go clean something. I just can’t get ahead…G wants to have a little garage sale with her toys to raise $ for Abby White and the cancer kids in Africa (www.orphancancer.org), she (G) had a lemonade stand and made $6. She schmoozed dollars out of one of Andrew’s coaches (Pierre, I don’t know if you ever read here, but I am so grateful for your kindness to my girls…Genna ALWAYS looks for you first when we get to a game), but she wants to get more for Abby. Maybe we should do that this weekend.

Please pray for Katsie who scanned yesterday, Drew scanning on Friday…for Nora and Gabbie and Hadley struggling so, for Charlotte scanning soon…for Devon and all our friends.

THIS IS ONE OF THOSE THINGS THAT GETS OLD FAST. Please help us find a cure.

Peace,
K

p.s. HAPPY BIRTHDAY RITA!!!!!!! Diva queen goddess of all…she who kept Andrew happy on scan day, let me play with her beading supplies when it was too nasty for landscaping (!), indulged in festive libations with me, and is just such a good friend and cousin…eating cake in your honor will be a privilege! : ) (and hey, Project Runway is on at 9…)

Monday, July 28, 2008 6:45 PM CDT

Hi, all.

We literally just pulled in, I figure I’ll give a quick whatnot before I take up my new career as a speed bump.

To quote Avril Lavigne (something I rarely—ok, never do)…”why’d you have to go and make things so complicated?”….

Rosie is stable. Her neurological exam, even after sedation, seems “perfect”. She is a pip. She commented, as G was getting sedated, that the seatbelts on the stretcher were just like astronauts use on the space station so they can stay in their beds.

Genna…is complicated. She Is stable…if you see her or talk to her, SHE IS STABLE.

But complicated.

Due to an area of concern THAT WE ARE NOT MENTIONING TO HER BECAUSE SHE IS STABLE,( no size has changed much on anything), we will scan again in 6 to 8 weeks. We will, for good measure, throw in a spinal scan as well. If the eye check reveals anything untoward in August…well, we might need to take some kind of action. Definitely if the scan reveals any more concern…

I refuse to spell that out here.

I just haven’t seen our doc that concerned in a while, I could tell by the fact that a) she didn’t give us the preliminary “all ok” before my girls descended upon her with stories, jokes, and dramatic re-enactments of Cousin Maura’s foot injury on vacation (Rosie hopping while post-sedation was alarming)….I could also tell by the way she told G that she was stable. After nearly 4 years, you just KNOW…and really, G IS stable, it’s just that “flashing yellow light” of warning is a bit more insistent than before. But Dr. B calling for a 6-8 week scan…oh, yikes.

Anyway, I have to go back and be mom. Thank you all for praying, you really helped me be peaceful today. I actually read a book while waiting!! (“Mornings on Horseback”, about Teddy Roosevelt). We had a blast on the Kid’s Cruise, and Andrew’s team made it to tomorrow’s championship game…life goes on, the chaos of our parallel universe is just barely contained sometimes.

I think I just need a few days to be a speed bump and process and figure out which end is up.

And please, if you see me & I'm with Genna, do not mention anything sympathetic. If your kids know Genna, SHE IS STABLE. We are just double checking a few things in a month or two. That's our story and we're sticking by it. And it's true...but sigh.

Yay and ugh.

Prayers especially for Katsie & Mya & Drew and everyone scanning now-abouts.

Peace,
K

p.s. They had a flyer up for the Philly Distance run and the NF team…Genna & Dave & Mark Blumberg were all smiling for a cure…

please, please help us find a cure. God, please…

Thursday, July 24, 2008 8:42 AM CDT

Friday: here are a few vacation pics...I have some better ones, just have to figure out the transfer process. Rosie desperately wants a ferret now (no way) and Andrew is in the front of the canoe (pre-haircut!).
And thanks for all the b-day wishes...G loved them all so much, she was crying last night, she didn't want the day to end...which I guess means it was a great birthday! :)--k

*******************************

Hello, all—

AND HAPPY BIRTHDAY, GENNA!!!!!!!!!!!!!!!!!!!!!!!!!

10.

There were times a few years ago where I just wasn’t sure we'd get here…but today, we celebrate my G.

She has been announcing to EVERYONE that today is the day. Dave took her out for breakfast to the diner this morning (as he did for Andrew & Rosie on their days), and she somehow managed to schmooze a free piece of cheesecake out of the diner folks by announcing as the lady was seating them, “Today Is A Very Special Day!”!

Yes, the Force is strong in that one… ; )

G’s challenges are very real, but we are so blessed by her guffaw of a laugh, her vibrancy, her enthusiasm for life, her compassion for others. Genna is determined and truly a fighter. She is so good with little kids, she Loves to cook and draw and paint. She is impulsive (blessing & curse) and cautious…I love her beyond all, even when she’s driving me berserk.

10 years. I am not worthy.

It’s been quite a week…other stresses always seem to rear their terrifying heads at scan time, but I think now those hurdles are at least mostly passed (and I owe St. Jude and about a dozen other saints big time...I holler at everybody upstairs when I freak out...so thank you, St. Jude). I have to continue my confirmation phone tag with CHOP regarding the scans…need to find out what labs we need if any…need to assemble the bags…

But not today. Today is cake (pink, as per request…and I tried fondant, it’s like decorating with playdoh, even She Who Cannot Decorate a Cake To Save Her Sorry Life managed to make really cute flowers all over the pink cake). Today is presents and games and fun amidst the gloomy clouds and fishbowl humidity. Today is 10. A gift so easy to take for granted.

Don’t ever take it for granted, not one second. As one angel family signs off every update, “Go hug your kids”…

And please, please pray for our friends…especially Katsie & Mya, both scanning Monday…and for Drew, Hadley, Devon, Gabbie, Nora, all needing big prayers now…and for all of our friends, and especially our angel friend families. You are truly Never far from my heart. Ever.

I may update again before Monday…we have the Kid’s Cruise this weekend, Andrew will have makeup baseball playoffs I’m sure…and maybe the balloon festival and some Screaming Nellie’s ice cream…

G did have a big first on Tuesday…Daddy took her to Yankees Stadium for the first time (and last, the new stadium will open next year). She had a Blast, she said, very seriously yesterday, “Mom, the Game Was Amazing”. (somehow her voice capitalizes words, it just happens). I’m so glad she got to go.

10 is a gift, such a gift.

Of course we made up a cheer…

Anyway, better go make pizza dough.

Peace,
K

p.s. and thank you to Diane & Connie, G LOVED the stuff you sent (and Andrew too, G is just Way more effusive). Love across the miles means so much…

p.p.s. Yetifunk updates are up on John's page, if you want to see the nitty gritty of his race. I need the rain to let up here, I'm a day overdue for my own globbing about...

Sunday, July 20, 2008 2:00 PM CDT

HAPPY BIRTHDAY TO MY BABY BOY (who would be mortified if he knew I just said that, but he doesn't read here!)...I CANNOT believe I am old enough to have a teenager...

My poor boy is so much like me (except for the athletic stuff), I think that's why we sometimes (often) make each other berserk...but I love him to the stars and back. My smart, funny, wickedly sarcastic, newly shorn (thank God the Sasquatch look is behind us), baseball fanatic, sports obsessed, sci-fi watching boy...Happy 13th birthday, Andrew!!! He is such a good kid...

And to my yetifunk brother, John...CONGRATULATIONS!!! Despite some severe electrolyte problems (a missing aid station was a problem),John finished the race in 12 hours, 28 minutes...50 miles on dirt trails at elevation (YIKES), 10 lbs lighter (YIKES), but triumphant. We are so proud, and so grateful for everyone's support. Only about a month until the Leadville 100 miler...there's STILL time to get your Yetifunk on...

better run, I have to get a few things ready for Andrew's birthday dinner...

please pray for us, moments are getting harder, just random moments where I ponder losing my lunch or just running out of air. Two kids, one scan day...God help us.

but off to happier things like raspberry swirl cheesecake pie...mmm.

peace,
k

Saturday, July 19, 2008 1:03 PM CDT

IT'S YETI RACE NUMBER ONE!!!

check out www.yetifunk.com for John's progress...and it's never too late to donate. As of my last check John was nearly up to $1000 for the Children's Tumor Foundation!!

And his inspirational videos are hilarious.

Genna called to wish him luck last night, I figured she'd give him a quick good luck and then go...30 minutes later she came and found me with the phone...the child is a Wall of Sound, I think even Uncle John was impressed by her ability to talk non-stop for 20 minutes and then start digging out jokes!

My real computer crashed, I have very limited access right now...but thank you all for all your support, and especially to John...GO YETIFUNK!!!

Insanely enough, John sees this as a prep, a 50 MILE warmup for the 100 miler...

anyway, better run before I lose this connection...

please pray for us...scan day...and just stuff...starting to feel like there's just not enough air all the time...

peace,
k

Wednesday, July 16, 2008 9:06 AM CDT

Hi, all—

I know, it’s only been 3 days since I updated, but I realized that updating right after spending 2 hours checking up on everyone I know via the web was perhaps ill advised, since so many folks are having a really tough time…and that translates in my updates as “Someone Is Stepping On My Head”. So I figured I’d add a few notes about vacation, and a note or two about the insanity that is this week…while trying to avoid the minefield that is my head less than 2 weeks before scan day.

But First, a word from our sponsor…punctuated by the sound of fireworks in the distance, the next town over has a festival today in honor of Our Lady of Mt. Carmel, they shoot off fireworks and stick dollar bills on a statue of Mary in the back of a pickup truck. I am kind of uber-Catholic, but this is a cultural enigma that even my married name does not unlock for me. Either way, it adds nice percussion to my morning…

Anyway, the word from our sponsor…YetiFunk! Only a few more days until John’s first race, the 50 mile Tahoe Rim Trail Ultramarathon. He is up to nearly $1000 raised for the Children’s Tumor Foundation, and I know he’s been training hard. My kids love their Yeti gear…and thanks so much to everyone who bought some, all the profits from that stuff goes to CTF via John’s race. To see his website, check out www.yetifunk.com . There’s a link there to his fundraising page…I am so proud of John’s efforts, we are praying hard that everything goes off well and that the smoke from the CA wildfires is not the issue it potentially could be.

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A few funny notes of vacation:

We left late in the morning because Andrew had a game…in the 7th inning (they play 7) the teams were tied, two outs, looked like extra innings…Andrew came to bat and hit the game winning hit, we think Lake George was just beckoning too strongly to be ignored! This was a first for Andrew, an exciting first (and this week home has been rough on the baseball front, so I shall remember that happy moment for a bit!).

On our first or second day at the lake Rosie came running over…”Mom! I found a fish!”…and yes, she was holding a dead fish in her hand…urp…but funny. And yes, I have photographic evidence for when she’s older and grossed out by fish.

Genna made a FRIEND…of course she lives in Maryland, but the first week a little girl named Nicole was at the lake…and she was so outgoing, so friendly, so “put an arm around the other little girl and let’s go chat”…a bittersweet moment. She didn’t get that G wouldn’t go on the boats (you may have heard the screaming the day we tried to get her in a rowboat), or swim out to the dock alone, but she would just play with G after her active time…nice to see.

The funny rowboat story…we forced G into a rowboat, we wanted to have a little family time on the island just beyond our little cove. Going on vacation with friends is Great, we just needed a few minutes…so I kayaked Rosie out, Andrew kayaked too, and Dave took G in the rowboat. She was petrified, and very annoyed most of the time we were on the island…she declared she was Going To Go Back In the Kayak With Mom (we figured that would feel tippier to her, but ok)…so we paddled over to visit Aunt Donna at her house up the lake a speck, and then paddled back…on the way we crossed a shallow part, the rocks were just beneath the surface, and we got a bit stuck…not a problem, I saw them coming and knew I could just push off…but then I saw the tsunami of boat wake coming, a large boat must have gone by and the waves were a-coming…we got totally pinned between the rock and the waves, and we took 3 ginormous waves right across the side of our kayak…well, it was my first time wet on vacation! (I’m always freezing)…and Genna just shrieked and laughed and had a grand old time…!?!?! So the rowboat was scary, but nearly swamped in a kayak is hilarious?? We were a giggly bedraggled lot when we got back home!

A moment that never gets old: Genna could see the stars.

********************************************

So we’re back in the real world…I sprayed my garden again, the deer had a bit of fun while I was gone, the girls are at Bible school, Rosie has a party today (great excitement!) and G has one tomorrow (greater excitement!), we have an appointment with G’s counselor today, Andrew has a baseball game…at least it’s at home, Rosie has a dentist appointment on Monday, I need a haircut, Andrew DESPERATELY needs a haircut (talk about YetiFunk), I’m making Andrew do his summer reading (G finished hers before vacation!)…we are crazy busy at this point until next Tuesday, then we have a lull (unless baseball goes into extended playoffs) and the weekend is busy again from Thursday (G’s birthday) on…we have the CBTF Kid’s Cruise, maybe a glimpse of the Balloon Festival (which G tried to win tickets for on the radio, woke me up to play…but there was another person before us, thank God they won so I didn’t have to try!), Andrew has Mass to serve…and then you know what day…

We had an awful scare on Sunday afternoon, the girls were in our pool (which is all polleny, the vacuum doesn’t pick it up, now the whole thing looks yellowy, which makes me crazy)…and Genna was standing on the top of the ladder to jump in, and somehow fell backwards 4 feet to the ground…just as I walked out the door to get some basil (Dave was with them)…oh, yikes. She has some awful bruising that I am trying not to freak out about, but she didn’t hit her head, and her back seemed ok…yikes!

Her vocal cords were quite mighty, in case anyone wondered what that stirring in the cosmos was.

Rosie’s been saying her ear hurts, The Ear Of Concern, I have issued a moratorium on the Announcement of Odd Symptoms in the Two Weeks Prior To a Scan, my mental health just can’t handle it.

Andrew and I assembled a basketball backboard the other day, that’s more intense than my normal Ikea fix, but we have it done, we just need to get it up on the pole…I had to spray the bees OUT of the pole this morning, I am kind of a Wasp Slayer….I find them annoying rather than terrifying, which is funny since most other things in life scare me. But stinging things…I am a bit fierce with a bottle of SlayMix or whatever it’s called.

And in a Crazy Unbelievable note, I think I actually jogged a mile without walking yesterday (thus ensuring that tomorrow I will be crawling the whole way!). Unbelievable. I think it just seemed flat after the hills at Lake George. Still…it’s encouraging. I can only have other people running for my kids for so long, I need to get healthy and get my ample rear in gear.

I will try to get pictures up, I have things loaded on the laptop and I don’t know how to use the new camera program to resize the pictures appropriately for the web (yet), but I have some great pictures.

So that’s a slightly perkier update…I hope everyone is well, we missed you all a lot…while it was good, I think, for me to be away from the computer for a bit, I did miss you all and I truly carry all the cb kids in my heart…

Please remember all our friends…especially Katsie who scans on our same day, Carly (de-Ported WOOHOO!!!), Drew, Hadley, Devon, Carly & Carly, Laurin, the other Rosie C., Gabbie…and a special remembrance for Mrs. C, Andrew & Genna’s kindergarten teacher, who’s anniversary was yesterday.

WE SO HAVE TO FIND A CURE ALREADY, THIS IS GETTING VERY, VERY OLD.

Peace,
Kristin

Saturday, July 12, 2008 9:54 PM CDT

Hi, all…

We’re Ba-ack!

Sorry for that last incoherent entry, some of it vanished. I really did not go online at all while we were away except to upload pictures & check Andrew’s baseball team (and Dave did that).

First off…our hearts are with Esther’s family, another NF kid like Sandra…and with Bobby Murcer’s family…I loved listening to him broadcast Yankees games, and when he got his brain tumor diagnosis we sent him cards…and for the other kids on the brain tumor lists I’m on who went to heaven these last 2 weeks…

Time for a cure…

Speaking of which, only 1 more week to support the YETIFUNK team in the first of 2 ultramarathons. I will have to post pics of my kids in their Yetifunk gear, Rosie and Owen (my nephew) are particularly adorable. Visit www.yetifunk.com to see John’s progress.

Vacation was truly lovely. We got off to a rough start; as we pulled off the Northway at exit 24, dark clouds opened and literally dumped oceans on us. We have NEVER seen that kind of rain up there, Dave had to pull over…then we realized we were low on gas, so we had to stop in the town closest to the highway before driving 12 miles over the mountain to our cabin…but a tree had just fallen over the ONE road in (thank God Dave had pulled over, based on the timetable we figured out later)…then Bolton had no power, so the gas station didn’t work…let’s just say it took us 3 hours to get to the exit off the highway, and then instead of 20 minutes it took us another 2 hours to get to our cabin. Wet, cold, and generally miserable.

BUT after that inauspicious start, we really had a fabulous time…some tough moments with G, a very overtired Rosie, and Andrew proving that yes, he will be 13 in a week (egads!)…but far more moments of watching Rosie jump off the dock, playing games with Rita and our friends, teasing Andrew about “the one that got away”, seeing stars upon stars, munching, reading (I only got through 9 books, but yum)…having 2 weeks is HUGE, it takes a while to really relax.

We saw fireworks at Aunt Donna & Uncle Ray’s on the 4th, I found the old church window donated by my great-great-uncle John in the town of Bolton (weird coincidence that I had family up there back in the day, I never knew that until recently), Rita let me play with her beads…just like moving teeny tiny sparkly rocks, I LOVE it, Dave ran and hiked and swam and went to the general store Every day with the girls (Genna & Rosie and Sal are now best buddies) and pretty much did Every dad thing possible…

We played piles of Scrabble and Blokus and I actually had a Grown Up Drink a few times…Genna took until the second to last day to go to the dock, but eventually figured out she could do it. The ladder was broken, this flummoxed her. It was very frustrating, trying to get her to go Do Anything, but by Thursday she was swimming a bit more. And yes, I did jog/walk a respectable number of times. Rita said I have to take “stagger” off the end of that statement. Ok. I’m still waiting for the Joy of Running to Transport me to some great height of Wahooness. Waiting and waiting…

It was a very full 2 weeks, and very good. Coming home was ok…my garden is crazy spectacular, things bloomed that I forgot I planted, which is always a bonus.

And I only started having hospital dreams…well, ok, last week, but it could have been worse. I think beads are helpful. I told Rita I’m coming over a few days pre-scan to bead frantically. It’s very therapeutic, and she does all the technical stuff, I just arrange and string them.

Looks like I won’t be teaching in the fall, which is hard but really not surprising. It’s late to look for a job at another school, and I’m not exactly a prime hire in this area…I’ve been out 10 years except for substituting and I have 2 kids with brain tumors AND I teach history or English (as opposed to science or math)…and I won’t do anything now until after July 28th. I’m trying not to see this as a bad sign…

Yes, friends, that was the warning light, blinking for anyone who really just wants to know how big Was the Keeper Andrew didn’t drop? (14”). I promise I’ll keep it short…we are only 16 days out from scan, I’m sorry!

I have a bad feeling. Add to that a sense of “this was our first ever 2 week vacation and it was really pretty alarmingly good, sunny & warm & I didn’t forget anything, what if this was our Last Good Moment for a Long Time?”…and I think pre-scan may be ba-ack too. I know, I know…that sounds INSANE, I know. I just remember. Clearly. 2004 and The Great Trip that Dave & I took, our 10th anniversary trip, the longest we had been away in YEARS, and certainly the nicest (up through Mystic and out to Cape Cod to an Inn…)…knowing that a week or so after we got back we had that MRI for Genna scheduled, maybe we’d find out why she wasn’t seeing so great…argh…I know, it’s different. But 2 girls scanning on the same day…one the EXACT age of her big sister in 2004…the other just having some issues, always some issues…and then the job I hoped for that would take a lot of time in the fall just, um, falling through…and everyone having such a good time…and the dreams…

Ok, just needed to spit it out. It is what it is. But it was a bit easier to not think about up at the lake, until last night. Rita, I owe you one. Maybe more like 27. Everything kind of fell on my head at once. Where are rocks when I need them?

ANYWAY, vacation really was great. I’m glad to be home, in some ways, but we are hoping to do 2 weeks again next year if humanly possible (so famous last words, I know…). It just was lovely…

I am supremely tired, and we have baseball EVERY DAY THIS WEEK (yes, sob), and 3 of the games are in Hazlet, which I think is an hour away…and next week we have 2 birthdays here, one teenager, and one a miracle 10. There are so many good things…I just know those clouds are there, waiting with oceans to fall…

But tonight I uploaded more pictures to Snapfish, happy, happy pictures…and I am so grateful for this time given us. We are so blessed. You know I don’t say lucky (I used to say, when people said we should buy a lottery ticket, I guess since having statistically improbable bad happen somehow should translate to a converse good happening? Seems illogical to me…but I used to say if I bought a lottery ticket I’d be struck with lightening or hit by a falling piano as I walked out of the shop, we are That Lucky). I am just really grateful, and I’m trying to have the happy grateful squash the scared.

I’ll try to get some pictures up tomorrow…

Peace, and please pray for all our friends…
Kristin

Tuesday, July 8, 2008 9:39 PM CDT

Sun...sand...not too many fish...a new fridge in the cabin...constant sunburn for poor Rosie (I swear I slather her with 45 EVERY day)...lots of reading...WAY too many skittles...and chocolate donuts...and

I held out until tonight, I am trying very hard to relax. Some moments are better than others...tonight we are helping Rita watch the Gallic kids...

better run, but we are thinking of all of you out there...I don't sleep well, but thinking still goes on!...and we are generally having a really, really good time...

peace,
k

Thursday, June 26, 2008 6:35 PM CDT

Hi, all…

I am nearly literally running in circles here…we’ve been insane here, just insane. More than our normal insanity. I know that ultimately I will be thrilled with 2 weeks of vacation…but packing for it…yikes. My house looks like a tornado went through it. Truly Appalling.

Dave also decided to re-finish the deck this week. He is a perfectionist…and the deck is kind of sizable (the back is our main entrance). Yikes again. We also learned that the microscopic warnings on the can of deck stain about spontaneous combustion are in fact Not Just Some Guy with a Tiny Type Obsession Whistling Dixie. Yikes times 50 billion, but no harm done, ultimately. Next time I think “wow, that stain smell is REALLY strong!” I will go check out the deck, ahem.

We did almost act spontaneously (!) on Sunday and Dave & I took Andrew to see Little Shop of Horrors at PaperMill…it was awesome, as their shows usually are. We just have had NO TIME…and this is a show Dave likes (there aren’t many…maybe because his wife often bursts into song at odd moments, but I think he had an aversion before he met me)…anyway, I was REALLY glad we made time.

Andrew finished baseball camp this week…and I now know about half of the parks in the Hunterdon County park system. In a few interesting discoveries, I have learned a) where there are some pretty interesting one lane metal bridges in NJ b) just how far the nearest Buffalo Farm is from my house (yes, really—Andrew LOVED the enthusiastic rendition of “Home, Home on the Range!” I provided him…not every chauffeur will do that!) c) another way to do the first 26 miles of our CHOP trip next time if traffic seems bad (not likely at 5:30 a.m., but you never know). It was a LONG 4 days…a lot of driving, a lot of time with the girls in parks. I did realize too that we don’t save on gas if we go outlet shopping while Andrew is at camp…sigh (but woohoo!).

I do worry a bit that I will go crazy after 2 weeks away…just my plants, and Splashy & Flippy…(mom will feed the fish)…and all that not being here and being busy…Rita and I are a bit worried that we’ll get stir crazy, but I got the local Chamber of Commerce book so if we have rain we can find non-cabiny things to do. I also got about a dozen books out of the library. I’m still slogging away through my Brooklyn Bridge book, I’m 340 pages in (and just over half way!)…but I tucked in some Agatha Christies too!

G and food…not the best week. Rosie’s been crabby, too…4 weeks from Monday…

Yes, I am inhaling chocolate as I type (it was a long few days).

We have 2 more games before we can head north…one more day of laundry and “what did I forget?”…it’s 20 minutes to the nearest civilization, the little general store down the road has like $5 toilet paper. So I don’t want to forget anything.

Funny note: G pulled out a page from her Page A Day calendar on Monday and said, “Mom, I don’t get this…it says I have to match all these holidays to all these sicknesses…” it was a list of holidays, and then Cancer, Pisces, Scorpio…I guess those do sound a bit ill…! : )

I still haven’t heard from school. I don’t even have any mental room to think about that!

In a brighter note, the girls and I hiked on Tuesday, one of those hikes that doesn’t quite match the trail map…it turned out to be quite challenging, really narrow & overgrown & obviously used by horses (uneven mud)…but Genna NEVER fussed. She even wiped out completely once and just picked herself up…this is monumental, really.

And in a completely ridiculous and do you even really care note, I actually purchased clothing for the sole purpose of exercising. Dollars on clothing I don’t ever want to be seen in. Yikes times a bazillion. I didn’t want to—but it’s REALLY hot. And I only have denim shorts. Do you have any idea how SHORT most of those shorts are for exercising? Ay, Caramba! See, I am exercising not only in the interest of overall health (I set the chocolate aside while typing that!), but…well, my psycho metabolism only takes care of so much. And I am uber-Caucasion…so short shorts have NEVER been in my wardrobe repertoire, you can only take “you are SO WHITE” or “do you have a disease?” so many times as a kid…

So I found some knee length shorts that unfortunately are a tad big in one area…I realized today, having packed my NF t-shirts that I usually run in (helps me focus on WHY I need to do this), that if I wear a shorter shirt, and put my IPod in my back pocket…um, well, there was some danger that people driving down the road were getting more than the sight of a gasping for breath very white ahem year old gal trying to be healthy. Yikes times…well, however scary that is to you, my counting doesn’t go that high.

Back to my last bite of chocolate.

So I still kind of dread exercising, but I can’t help but think about when I have to do it next…it’s kind of a neurotic hate relationship, I guess. At least the scary dogs have left me alone since the 2nd day I ran on the roads instead of the field. Don’t ask…

Well, the chocolate is gone.

Better run…I want to try & get to church tonight, a survivor of the nightmare in the Sudan is coming to speak about the situation in Darfur, and I think that would be something people should KNOW about. Really, the mess here will wait…right?

Please pray for Drew, Hadley, Nora, Katsie, Carly, Devon, Gabbie…and 52 bazillion others…I read on one of my lists today about a little girl stable for 3 years who just died out of the blue…so for Meaghan’s family tonight, special prayers…

And I may not get back here before we go…but our hearts are with Team Sandy this next week. I can’t believe it’s a year…yesterday & forever ago…I still feel like we might just run into Sandra at A.C. Moore bead shopping, or get a call to go get some pre-scan ice cream. Marta, Edwin, Kris, Mark, and Renata (& Ninja)…we are just so sorry still, and our hearts are truly with you, I know Dave runs for Sandra as well as our girls, and I think of her when I drag my sorry self around Warren…

Genna said at the park today, “Sandra could come here, they could park right there and she could camp over there!” (it was a picnic grove, but whatever). Sandy, we miss you…

It’s time to find a cure…

Peace out,
Kristin

Thursday, June 19, 2008 9:02 AM CDT

Hi, all—

We are so busy…all is generally well here. I know I just have to get through the next week and a half and we’ll be on vacation…but oh, getting ready is a challenge! We’re going away for 2 weeks, for the first time EVER (like, not even my honeymoon was 2 weeks)…which is Awesome. It just means a lot more packing. Our cabin is pretty rustic, which is fine, but there are some things I can live without for one week, not two (case in point, my Farberware coffeepot. I can’t do the drippy kind for 2 weeks…so now I have to figure out how to fit the coffeepot into the minivan!).

We’re also trying to determine if Andrew should come home for 1 or 2 of his baseball games. With a 2 week stay, that’s not too oppressive…but the 4 hour drive with gas prices what they are is a bit yikes.

My brain is just too full. Writing, driving, schedules, forms, friends in need, my brain is about to pop. Dave wonders why I can’t fall asleep at night (I stop drinking coffee in the afternoon, so it isn’t that).

It’s also cherry picking time here, and my workforce is not all that enthused. Dave LOVES these cherries, so does Andrew, so we pick & pick & pick from the 3 trees in our yard. If we don’t get them the birds & squirrels do…I might make jam today, I think I remember how. If not, we’ll have a lovely sour cherry sauce! : )

I feel a bit like the scan is starting to loom…it’s WAY too early, I know. But somehow it IS looming. The calendar for the summer gets full so fast (baseball is a bit overwhelming, I don’t know how people do this with multiple kids over multiple years)…I’ve already been marking things all around THAT date. I told my girls that our buddy Katsie was scanning the same day…Rosie gasped and said, “Will we SEE HER???”. Um, no, she lives in Texas…but we really Are All In this Together, you know?

This is a ramble, I’m sorry. I know this is the only moment I’ll have for a few days. Andrew got to his first game last night (10 miles away at rush hour) and after the second batter thunderstorms rolled in…ARGH! G saw the counselor again yesterday; I think this is going to be a LONG process…and our insurance is being sniggy right now, sigh. Dave pointed out that we don’t work for our kids to go to school, we work so they can get to therapy. There is some truth in this…it is ungodly expensive.

We did have a funny moment or two this week. On Monday Dave & I were standing in the kitchen before he left for work, and he gasped/yelped…the sound of “There is a Ghost in the Living Room” or “There is someone with an AK47 in the living room” or “There is a Bear in the Living Room” or some weird combination of the 3, “There is a Ghost Bear with an AK47 in the Living Room”. I could feel adrenaline in my eyelids, it was THAT noise.

“WHAT? What???” I gasped right back at him. It was a SCARY noise.

“A CHIPMUNK JUST CLIMBED IN THE FRONT WINDOW”he yelled.

Ok, our front window is 14 feet off the ground (we are on the garage side of my parent’s house). So the chipmunk probably didn’t come in that way (and I did sort of holler at Dave once I located the chipmunk under the couch, since really, a chipmunk is Not an armed paranormal beast). When my sister wandered over a few minutes later to see us all standing on furniture, she was amused. We finally got the little guy to go down the stairs to the playroom and out the door with the help of a broom and much commentary. I think that’s how he got in…we sent the girls out to wait for Grandma C, and they often leave the playroom door open…the path outside runs right along my garden, and there are chipmunks galore.

It was funny…although now I spend half the day yelling at the kids to SHUT THE DOOR downstairs. Last night we watched a baby bunny on that same path, munching my violets. He was so cute, I really couldn’t chase him, even if he was using my garden as a salad bar. Rosie usually chases the rabbits by running into the yard and singing “FAT FAT BUNNIES!’ at the top of her lungs.

Rosie also mastered the diving board at Aunt Donna’s on Sunday—no fear, just ran and jumped!…and Andrew was the flipmeister, back flips, front flips, mom feels nervous kinds of flips. Genna actually “jumped” (sort of stepped) into the pool off the side, where she could stand…this is actually a big moment for her, she NEVER would do that before.

ANYWAY…really, it’s not been a bad week, just super busy, and a little out of whack schedule wise. G has been kind of stressed, not sure if it’s just the end of school…even Dave noticed and was concerned (since I usually play the role of “Over Concerned About Everything”, when Dave notices something and expresses concern it seems noteworthy).

I just have that feeling…

I didn’t sign the girls up for dance yet for September. It just seems ill-advised. I wish I knew why.

Rosie is here lobbying to go down the street to the swings…I am so mean. But the whining…now it’s crying and wailing, I better run.

We do have a swingset in our backyard.

Please pray for our friends…especially Aimee & Brianna, Drew, Hadley, Gabbie, Nora, Katsie, Rosie C., Esther, Lily, and so many others (sorry, hard to focus during “Now I can’t even breathe if I can’t go down…I feel like I’m going to throw up if I can’t go down”).

And please, if you can support John’s race for the Children’s Tumor Foundation…we just got the kids shirts from CafePress last night. The site is a bit hard to manage (and I know, some of my designs are a little askew), but the shirts are cute. I’ll put up a picture once we get them…Andrew got a polo shirt with the crowd of yeti, Genna got a BRIGHT green shirt with a tie-dye yeti, and Rosie got the red-sleeved baseball shirt with the tie-dye yeti. I got a button & magnet…I hope to get some more stuff that I can send out, I didn’t have much time. www.yetifunk.com is John’s website. I wish I could go out there and cheer him on…the first race is in a month, it’s 50 MILES. The second, 100 MILE race is in August.

I just worry…we so need to find a cure. Time goes so quickly.

It’s almost one year since we lost Sandra.

Genna made a clay SpongeBob at art on Monday…she talks about Sandra so often, she absolutely had Sandra in mind when she made her creation.

Anyway, now it’s too quiet, She Who Is “Not Going to Do Anything I Say” (yes, it’s THAT kind of morning here!) is too quiet…better go investigate.

Thanks always for your thoughts, prayers, and messages. I sometimes feel a bit floundery.

Peace,
Kristin

Sunday, June 15, 2008 10:18 AM CDT

Happy Father’s Day, dads…especially Dave, and my dad, and John…I always thought my dad was pretty much the coolest, smartest, most talented guy in the universe. Actually, I still kind of do! And I know the kids feel the same way about Dave…

Things have been so crazy, all good, but crazy. As soon as I hit “enter” the other night G fell apart…I don’t think I should ever write good stuff, such entries ensure imminent chaos. But we got through…

The week held: 1. art teacher pool party (her pool is the size of Cleveland, which simply means impressively large in a good way) 2. G had a chat with the counselor 3. Andrew went to a friend’s baseball game…2x, and one night of practice 4. had dessert with the Camiolo/Gallic side of the family while Mark & Melissa were in town 5. got the brakes on the van fixed 6. visited Grandma & Grandpa Appert at the shore and 7. spent rather a lot of time in the pool.

We did discover that G can almost run if she thinks a thunder storm is coming and we are down the street at Aunt Laura’s house. Panic stricken running, my poor G. The storms that broke the heat last week were VERY impressive, but G was so nervous at Tim & Laura’s I had to bring her home. Last night she got panicky again when we were trying to take a leisurely stroll and some distant thunder rumbled. She scurries if she thinks a storm is coming. Rosie wanted to play outside…and Andrew was at a carnival. I may have to perfect bilocation just to be with my kids…

Anyway, back to the pool…I got a couple of Very Large Books from the library, I am not good at just sitting & watching the kids swim…for safety reasons I obviously DO stay outside by them while they’re in the pool, but I get a bit stir crazy thinking about the festering mess in my house. I also feel like if there’s any chance of me going back to work in the fall I need to get smarter. I know…that sounds ridiculous, but I am feeling less than intellectual these days. So I’m reading The Great Bridge by David McCullough…he is awesome, makes non-fiction read like fiction. I did sneak a Terry Pratchett into the mix, too, I must admit. But even fake footnotes seem educational!

So far summer looks like it’s going to be a whirlwind…only 2 weeks until we go up to the lake, that’s unbelievable. Baseball starts in earnest this week…we are so grateful to the coaches for letting Andrew play even though a) he couldn’t really try out since his hand was in a cast and b) we’re going away for 2 weeks. Andrew is really pumped. This week is basketball camp in the afternoons at a local church where Dave’s brothers played, next week is big time baseball camp in Flemington. Genna & Rosie hope to go “help” Grandma Camiolo tomorrow…I need to do a few writing things in the next couple of days, a clarification for the child study team, some grant writing info I collected for the kids’ school, maybe enter the Guideposts contest for the 10th year (really, I am a pro at rejection! : ) ). Busy, busy, busy.

David discovered that in the demolition starting around his parents’ house there are big rocks just lying around…seriously, we May have a Stonehenge here in July. Even Dave is having fun with rocks. It’s contagious! : )

And amidst all the busy…my brain and heart are getting alarmingly full…our friends who need prayers…especially our buddy Drew right now, and Hadley, Nora, Esther and Katsie…for Aimee & Brianna today especially…we’ve had moments in the last nearly 4 years that felt like some of the moments our friends are having right now…it hurts so much to know they are in the dark places they are…I lie awake at night and think…

And we scan July 28. Eye check August 14, followed by a Dr. B visit. We agreed a visit on a non-sedated day would be a good idea. Things seem mostly good, but with Genna…I’m just never sure.

G’s food stuff is still a ginormous struggle. If I forget to hide anything, well, it gets found. We hope to get her in a more regular counseling schedule, I also have to follow up with the insurance to see why we haven’t been reimbursed yet. Covering half is great, but it’s still a lot…but it is what it is.

Interestingly, the counselor said G is very open about her tumors, etc…and apparently the experience she is most scarred by? This surprised me, a little…all those local hospital ER visits. Not the 2 years of chemo at CHOP, not the inpatient stays, the surgeries…nope. The local ER visits. This is the thing she talks/worries the most about to the counselor. Wonder why I had issues with those visits? Eek.

But it is what it is.

I think we may run to A.C. Moore in a few minutes to get some scrapbook stuff so G can make a book of our trip away…I figure that’s a creative/educational summer project. Later we’re off to Aunt Donna’s for a Father’s Day shindiggity. The kids are quite excited…

I do have those 2 new collages up in the photo album…Rosie’s birthday/David Bailey concert (love my Rosie in the drum circle)/the 5K that went by our street…and G’s trip with me. We also did tweak the YetiFunk designs on CaféPress. John’s first race is in 5 weeks. He is about 10% to his fundraising goal for the Children’s Tumor Foundation. We are going to have a little Yeti shopping spree so we can represent here on the Jersey side while he’s racing in the West. All profits from the CafePress stuff goes right to CTF via John’s race site…

Ok, better run…

Please pray for our friends.

Peace,
Kristin

Monday, June 9, 2008 3:40 PM CDT

Thursday quick note: I uploaded some pictures of our trip & of Rosie's birthday/the 5K/the David Bailey concert. I tried to do a sampling...G with the radio folks (Johnny Stone & Stacey Stone) as well as trip stuff...and I think Andrew eyeing the cake is the one picture I have of his hand still wrapped up. Anyway, that's us! (me too, although I normally am safely on the more comfy side of the camera).

Thankfully we have breathable air here again, the heat broke Tuesday night with some mightily impressive storms...

Also sending prayers for Drew on scan day tomorrow, and a special Happy Birthday to Katsie Rane! : )

peace, all...
k

oh, and p.s. the tie-dyed Yeti is awesome, don't miss our 3 YetiFunk pages on CafePress for CTF!! I have to ask John how to put the pictures up here...

*********************************

Hi, all…

I feel very Salvador Dali today…like a melting thing, gloobing onto my chair…it is So Very Hot, nearly 100 degrees.

This is New Jersey. This is June 9. 100 degrees? Really? Ugh. And Jersey heat is humid heat…ugh ugh ugh.

Things have been crazy, but while G is at art I’ll try to give a howdy doo kind of moment…

The kids are officially on summer break. They are thrilled. I am still trying to figure out what to do with them all day once the final mulch pile is moved…only kidding, they are very slow at moving mulch ; ).

I couldn’t get to Jim Disney’s funeral, and I feel really bad about that. Aimee, I know you’re probably not browsing pages, but I am praying for you all so much. The kids & I said a rosary for you all on Thursday…

This weekend was G’s big 10th birthday Adventure (her birthday is actually in July, but we had time now). Saturday we went to Six Flags for the MercyMe concert that G won tickets to. Yes, it was also 96 degrees on Saturday, and G feels the heat terribly…and she’s terrified of almost every theme park ride. That said, we had a good day. She rode the carousel, watched the Wiggles show (oh, how I felt for that poor perky young girl in Wiggles Helper garb, dancing & dancing in the heat), went to the Star 99.1 fm picnic lunch…well, at first we ended up in the wrong pavilion by accident, a bit of crowd watching clued me into the fact that we were Not in the Christian radio station tent (long story) so we bopped over to the RIGHT pavilion and G got to meet all the radio show hosts she endlessly calls on the phone.

And yes, the morning show producer remembered me as the Shower Mom (i.e. the one who answers the phone after jumping frantically from the shower). I have pictures of G with 2 of the morning show hosts. She also met the opening band for the concert, a new group called Tenth Avenue North…they were very nice young men, chatted with Genna (she was pleased, the one told her that her hat was cool), signed her freebie bag…we pretty much drank lemonade until we were near exploding just to stay hydrated, and then we went off to see a Modern Dance show (which should have been called Hoochie Half Time Show Dancing…G’s opinion, when told the dancers were about my sisters’ age (the twins)…”I could Not Ever see the Twins Doing THIS!!...but maybe Laura…” sorry, Laura! : )

Finally we headed over to the concert, after hitting one or two little kid rides. It was just so hot…this was the only time of the day things got fierce. We ended up being some of the first people into the concert, G got a seat where she could see (we opted Not to stand in front of the stage).

I will say at this point…it was SO hot, that G didn’t ask for food all day. From lunch until after the concert…not ONCE. This is cataclysmic, really. We were both desperately thirsty by the time the concert gates opened, I nearly tackled the lemonade guy (ok, maybe not, but he’s lucky he came to us first! : ) ).

The concert was fantastic. I should have done this concert thing more when I was younger, it’s a blast! We loved Tenth Avenue North (bought the CD), and MercyMe…well, they were fantastic. Seeing them live…in that awful heat…they said it was hotter than their home in Texas…anyway, they were great. They sang all the songs I Love of theirs…the crowd was really into it…and then the lead singer talked about hard stuff, and how God can get glorified in hard stuff. I know this is true. I know that good can come out of bad…which doesn’t make the bad any less sucky in the moment, really, but it helps somehow. But then Bart (the singer) said, like a prayer, “Cancer…Lord, we give that to you” or something like that. Ok, starting to crumble a bit…then he said something else, I forget, then he said, “Incurable Disease, Lord…” and Genna turned to me, matter of factly and said, “That’s me, Mom!”…

Things fall apart, the center cannot hold…

No kid should say that.

This led to the inevitable, “HEY LIZ, MY MOM WAS CRYING DURING THE MERCYME CONCERT” bulletin from G on the ride home…

But it was a pretty powerful evening, and I got some great pictures of G.

Sunday morning after church we dragged ourselves back into the car (I realized on Saturday that a) Six Flags is FAR and b)people in NJ drive maniacally fast. We take rural highways into PA for CHOP and then on 95, well, it’s different…get on the NJ turnpike on a Saturday, I had to go nearly 80 just to not get killed, and I hate driving fast, good Lord). We were off to the Pinnochio mountains, to quote G.

We went to Bushkill Falls for a mini-hike (G refused to do the long one…I wanted the 2 hour one, she wanted the 15 minute one…we compromised at the 45 minute trail, which really was much shorter). There were a surprising number of Japanese tourists there. Really. In Bushkill, PA. I know, I know, it’s the “Niagara of Pennsylvania” …ahem….but I was just a bit surprised by all the tourists. With cameras. And videos. And elaborate happy waving poses. It was pretty jolly, really. And G liked that we got to take a lady’s picture in a helpful way.

After the falls we went a did a bit of shopping, mostly to avoid the heat…we found a place called Country Kettle, with all sorts of bulk candy…everything gummy in the world (gummy sharks, root beer barrels, brains—no, I wouldn’t let her get any for Dr. B—bears, penguins, dolphins, etc.), lots of nuts & pretzels and yum. We got treats to bring home for Daddy, Rosie, and Andrew.

By 4 we could check in…and we did. The hotel was ok. G loved it, and that’s what matters. We went to swim…THUNDER! Ack! So we waited, tried to get someone to fix the tv (I finally figured it out), went and swam, got some dinner (G loved it, mac n’ cheese & fries…mine was kind of vomitrocious, and I’m not picky…but G loved hers, and that’s what matters…can you see a theme developing here?)…then to the arcade, then to bed early. G was up at 4 a.m….for the day…I heard her singing around 5…yeek.

Today we had a yummy diner breakfast (yup, mine was good too!), then opened the pool…checked out, tried to play mini-golf (closed!), did the arcade, got pizza for lunch at the food court, and headed home. It ended up being just Nice. G holding my hand a lot, not fussing, just being peaceful…it was NICE. We needed some nice.

On the way home we were listening to the radio, and heard the Switchfoot song, “Gone” which refers to “Al Pacino’s cash”…Genna called from the backseat, “Hey, isn’t that David Bailey’s beverage?”…well, I love David Bailey because of his story & his music…I also love that he’s a coffee addict like me. He has opened both shows we’ve seen with his Java song…in which he sings about Cappucino…it took me a minute to figure it out, and then a minute to compose myself…before explaining that no, Al Pacino is NOT David Bailey’s favorite drink (and yes, she used the word beverage!).

These are the moments I love.

Anyway, I’m hiding in my less than oven like basement…our window ac isn’t in yet…and I’m grateful for my Genna. I love her so much, and this weekend got to take off some of the stress we have here…the constant food stress, the sibling stress, the Good Lord Do Not Even Tell Me That You Just Dropped That (fill in the blank) On The Kitchen Floor Again stress…she truly is such a good girl. She is as pure as the day is long…no guile. What you see is what you get with Genna…I watched her sleep last night (well, before her 4 a.m. wake up)…the last time we stayed alone in a strange place without the family was at CHOP, our week of infection/neutropenia in May 2006…

This was much better.

I realized too, last night, in the humid post swimming dry off, that G finally truly has her hair back the way it was. Even a year ago it was still growing in and out…now it’s crazy curly and voluminous again. This matters, I wish I knew why this matters on such a basic, primal level, the hair thing. But it does.

So I’m glad. Tired, hot (“I’m melting, I’m melting…oh, what a world!” comes to mind)…but I’m so grateful.

My heart is so full for so many of our friends right now…Hadley, Katherine, Gabbie, Drew (scanning!), Nora, Aimee & Brianna, Karen, Katsie, Carly S. (scanning!), Poppy & Lily ( I love flower names)…Esther…just so many. I know love & good can come from suffering, but that truly does NOT make the suffering any less awful and bad and craptastic.

I think I need to find that bag from Country Kettle…

Thanks, all…for everything.

Peace,
Kristin the long winded, really it’s just cooler down here than upstairs.

p.s. we are fixing the one yetifunk page on cafepress, I had Annie tie-dye a yeti for me…

Tuesday, June 3, 2008 11:31 AM CDT

Hi, all…

Please continue to hold the Disney family in your prayers at this awful time. I am just so sad for them…
******************************************

I know, 2 days in a row? But yesterday improved…and Lord knows I gnash my teeth enough here, you all should get the happy stuff too!

The IEP meeting went phenomenally well. After the initial paperwork I had received a few weeks back, I felt pretty demoralized. But Genna’s other testing results came back MUCH HIGHER than I thought…in some areas her achievement is “high superior”??? Ok, so I was agog. I told them I was agog (which apparently isn’t a word the Child Study Team often hears from parents). They told me that the curriculum at our school is harder than a lot of other schools they deal with…so even as I see G working VERY hard all the time, she is ahead of a lot of other kids her age.

They also underscored the absolute need for G’s things to be enlarged to 16 pt. – this isn’t gigantic. But the woman who tested G stated that the difference in G’s ability to process info, to actually THINK about things is directly correlated to the size of the font…WHERE HAVE I HEARD THAT BEFORE??? : ) Seriously, though, I was very encouraged. The woman also explained that it was the visual manipulation puzzles and the like that dragged G’s original scores to the demoralizing place. This is no surprise, and really, I’m FINE with that. Just knowing that G is ok in other areas…and that they fully expect she will succeed and do very well…

Yes, I nearly got emotional, but didn’t…one funny note, G told one of the testers in their questioning about her family that she resides quite happily with her mother, father, and sister. Something missing? I found this way funnier than the gentleman who tested her did.

I am very grateful to the people in the Educating BT Kids group who gave me a lot of advice before these meetings started. Every accommodation I requested for Genna is written in the official document. Of course I remembered one I need to add, but that’s no big deal. They adjusted her classification to chronically ill, which is the most accurate description, really. I am just so glad they were so helpful…going in utterly prepared seems to have made a big difference.

The only snafu is with the medical history stuff…somehow between my lengthy conversation with the social worker & the typing of the report Great Confusion Reigned, so I will drop a line to the woman in charge just clarifying some of the more out there parts of the report!

Then I was off to the Dentist…a sadly LESS joyful event, my poor Rosie of the weak teeth! We’ve been brushing on fluoride almost every night…ack! But…my baby has her first loose tooth.

Yes, SOB! is the appropriate response. She is so excited, she didn’t even know it was loose!

Finally, Genna went to her first art lesson. This looks to be the BEST THING WE HAVE EVER DONE EVER IN MY mumblebummble YEARS OF EXISTENCE!!!

Lisa Brown is wildly talented. Genna is wildly enthusiastic. Apparently she is a lot like Sandra in wanting to know What’s Next!!?? All the time ; ) …Genna did some art therapy kind of stuff…the first page in her sketch book is “what would you do if you had one super power?”…

Genna drew a curly haired kid in a hospital bed, and a picture of herself saying “It’s an Illigator!” while the kid in the bed said “hahahahahaha…”…her super power was to help kids.

The second page…”what makes you happy?”…#1? Good doctors…ok, so maybe art therapy is something we’ve needed for a while.

She made an Eric Carle style collage picture, many other sketch type things…nearly 3 hours she was there, it was (word of the day) phenomenal. She was SO HAPPY…and after the last week or so, we really, really needed some happy.

She is doing the class with another little girl who we just met yesterday. I walked in to pick G up, saw this girl, and stopped dead in my tracks. She looks like a clone of one of my dearest childhood friends…I started putting together bits of info in my head, the mom’s name, etc…and 10 minutes later, there was my old friend Nettie! (who now goes by Annette)…we couldn’t believe it, we haven’t seen each other in forever…what are the chances of G and Coco being in the same class?? This pretty much made my week…

That and Rosie trying to convince my sister Anne to play a game with her…”But it’s a Spanish game!” she said, and waved an Uno card in the air… ; )

So things took a definite upswing yesterday. I still need to finalize summer organization, still need to figure out how to keep G occupied while at home, still need to figure out exactly how to get to Upper Darby and can someone watch my kids (it’s 100 miles away, but I really need to try & go)…the kids have “Spirit Day” at school today, Rosie stayed all day for the first time –she normally should be coming home now, I’m trying not to think about it! (I am such a mush)…and tomorrow school ends…at which point I think we will burn Andrew’s uniform, it is a biohazard. Even bleach and much mending doesn’t help anymore.

Thanks always for pulling for us…and if you didn’t get to see my cute cute Rosie, just check out the old journal entries, I think the link is still lurking somewhere. And yetifunk3 is up on cafepress, that stuff is the coolest. A herd of Yetis in the desert, what more could one want?

Peace,
Kristin

p.s. I nearly forgot (?), scan day is July 28. Yes, it's late. But I don't want to do it before G's birthday (July 24), and not too close to vacation at the beginning of July(don't think the folks we rent the cabin from want me to sculpt an addition out of pine cones)...both girls on the same day. That should be memorable for all concerned. I only ate 47 pieces of chocolate after I made the call, I think I handled it remarkably well. (thanks, Christine!)

Monday, June 2, 2008 8:34 AM CDT

Hi, all…

Please remember in a special way Jim Disney, who ended his battle with cancer on Saturday. Aimee has been such a support to me…her little one also has a low grade glioma…she is one of the first bt/CHOP moms I met, and my heart is in pieces for her right now. Please pray for their family at this very, very difficult time.

www.caringbridge.org/pa/jim

********************************************

This week has been challenging, sad, uplifting, and busy. Sometimes when a week is so full I just don’t know where to start, I can’t process everything…so I move mulch and hope for the best.

Dave cleared out a huge area of our yard that now we are mulching. 5 yards of mulch is a gigunda pile, which Rosie promptly climbed. This kept us busy for much of the weekend…in between Andrew’s attempted return to baseball (many thunderstorms…but he got a few innings in). I will say that when Andrew came down dressed for his game and his socks were covered in baseball dirt, I nearly hid under the couch. I guess a month ago he put his dirty socks back in his drawer...and he only has One Pair of purple baseball socks (eek)...I was GLAD that game got rained out! : )

Genna and I met the art lady finally. Her house…wow. I mean, really…wow. Stone and glass and fountain and mountain and view and holy cow. Genna wanted to start Immediately (which was not an option), she will go back today for a 2 hour session of art therapy kind of stuff. The art Lisa produces is unbelievable, really gorgeous…I may need to go learn something, she does these landscapes out of paper collage, all texture and color…wow. Hopefully this will be something good for G.

Tiny vent alert…read ahead only if you really want to know…
We’ve had a tough week or so for G. We don’t see the counselor again for a week, we have to make that happen more often. I just don’t know what to do, it’s very sad, very frustrating…I know some folks think I’m insane about stuff, but when I can pull 12 cheese wrappers & about a half dozen candy wrappers out of a couch, well, whatever.

She just isn’t happy. Everything is a battle.

But I’m not going to go too much there…I just am dreading a bit our getaway, I have to find the inner resources to not go crazy and to try and help her focus on what we’re doing, not where the next piece of food is.

Ok, enough of that. But if you could pray for her, I’d so appreciate it.

In happier news, Dave & Andrew ran a 5K yesterday in memory of a man from our church. His wife Nancy helped us out with some Coffeehouse details, I’m really glad Dave & Andrew could go race for her event. Funnily, the race course starts at the high school by our house and goes right past our street…so the girls & I and some of my sisters went out and cheered on our boys. Both did quite well…Andrew ran with a friend the whole way, at the very end A had a sort of stomach issue so John finished ahead of him…they were 1 & 2 in their age category. Dave was 4th in his age group. Andrew was quite pleased to get a stripey beach towel as a prize, he liked that better than John’s 1st place prize! I’m just proud of them for doing this stuff.

And yes, I’m still trying. Ugh. But I’ve gone 5x now, so that’s something.

In equally brighter news, we got to see David Bailey this weekend! He was performing at a Cancer Survivors Day at a local cancer support place called The Wellness Community (www.thewellnesscommunity.org/cnj) . I wish I had known about this place when G was on treatment! Anyway, it’s only about 18 minutes from our house, and there was no blizzard, so it was a much nicer trip than the last time we saw David Bailey! : )

He is so phenomenal. Good medicine, even if I did cry through about half the concert. His whole message is hope…

Now you might think that I'm naive but this is what I believe

In every single situation, it doesn't take imagination to make a simple
affirmation

One word can cause a transformation - you know the one - You've heard it
many times before

But let me say it just once more - The word is not an easy thing - I've
seen it heal, I've seen it sting

I've seen it take I've seen it bring a little bit of everything

I've seen it make a grown man cry I"ve seen it make a cripple fly

The word is hope and always was and always will be because of people
just like you and what you say and see and do And what you find and make
and choose - so keep on looking, keep on walking

Keep on seeking, keep on talking

Look for hope and you will find love and faith right behind - they go
together every time

Like subtle flavors in a wine that just gets better over time

Hope is great, but not alone - Love and faith make hope a home
David Bailey “What?”

And during his last song they had all survivors come up and get a red rose…caregivers a yellow rose…and kids got a daisy. David went up with G, I was too much a mess…and I’m the designated camera person, so that worked out well.

If ever you can see David Bailey in concert…please do. He is good for the soul.

I should likely end here…this day is insanity, IEP meeting at 12:30, Rosie dentist at 2, G to art lady at 3ish, mulch still to move, summer schedule to plan…the kids are done Wednesday, YIKES. I am not ready, and based on the last few days we need a solid plan in place. And I need to find out when Jim Disney’s stuff is happening…

Peace, all…

Kristin

Ok, one more note, a silly one…Rosie came down the other day and told me she could do a fashion walk…”It’s kind of like an X, “ she said…and proceeded to do this contortionist sort of leg cross over leg model walk through our kitchen. It was hilarious, apparently we’ve seen one too many episodes of Project Runway or something, and Rosie decided SHE can do that walk, too!

Oh, and Annie finished the Yetifunk3 t-shirt, check out our full yeti fest on CafePress for John’s races in the summer. The Yetifunk3 page is my favorite…

I really need to go set up those July scans…sigh.

Tuesday, May 27, 2008 8:50 PM CDT

Hi, all…

First off, please pray for the Disney family during this excruciating time. www.caringbridge.org/pa/jim .

And Happy 85th birthday to Grandpa N! We were so glad to get to visit on Saturday…

Now I think maybe I’m officially old, my baby is 6.

I know, that sounds ridiculous, but 6…and really, Rosie’s entry to the world was VERY memorable, so it feels like way less than 6 years ago.

But at the same time, 6 years ago was “before”…and before is so hard to remember.

Sorry…I talked about NF more than usual today, and it makes me think too much. I’m kind of glad I don’t actually know anyone in Old Bridge…but the lady who arranged the talking got introduced to me and the next minute whipped a a teeny tiny picture of Genna out of her purse…”Is this your daughter?” …we had NEVER met, she knew my mother in law (who handed out pics of G way back in the beginning so people would put a face with the prayer request). How cool is that? Maybe it IS a small world after all…

ANYWAY, Rosie’s birthday was lovely…the weather was perfection, her pink cake for family and her panda cake for friends both came out delicious, and she loved her presents. She truly is the easiest child to please…she moves like a glacier, and is somehow always covered in something, but she is so sweet and good. Her animal party went off VERY well…of course now Genna is planning things for her birthday (she was the Helper at Rosie’s party, and did a great job reading an animal story to the kids, handing out cake, and helping with the craft). We’ll see how that goes…

I did come into possession of a new camera recently, hopefully I can figure out the transfer process soon.

And Rosie & Genna got to talk to Drew & Joey! What a treat! Thanks, guys! : )

Tomorrow Andrew gets his splint off! WOOHOO! It will be a frighteningly busy day, but good, I hope. I hope his finger works ok.

Today I renewed my driver’s license, which in NJ almost literally requires jumping through hoops to Prove Beyond a Reasonable Doubt that You Are Not A Menace To Society. I got lost going to the DMV, which was just me being stupid, I knew where I was, the DMV just got misplaced! Ahem…but I found it eventually, my license/birth certificate/marriage license/social security card/insurance card/ATM card & bank statement in tow.

I did realize as I got ready for the new picture that I wore almost the EXACT same thing the last time I got a digital license…Dave was appalled. Yes, I own the same jacket as 4 years ago. Yes, I still wear brightly colored t-shirts all the time…oh, well. Even tonight Dave was disbelieving of my fashion unfabulousness. It happens… ; )

IN less doofball news, we have been digging and moving stuff like crazy, you’d think we were way closer to scan time than we are. I so need to call the hospital soon to set that up. Ugh. But Dave cleared out this big overgrown section of our yard & then there were all these rocks lying around…woohoo!

Rocks are my therapy. I am arranging them in a little wall…Rosie has already declared this copse of trees to be her Secret Clubhouse. Excellent!

School is done in one week. Yikes and hooray. Not sure How we will all get through the summer, I need to find some strategies for keeping everyone occupied…making Genna go outside, keeping Andrew here sometimes (!)…but I’m kind of ready. I’m ready for no more homework.

So things have been peaceful here…I DID run again, 2x (it is so not running, it’s not even speedy moving)…these times I didn’t spend the subsequent day wishing I was an amoeba, so that’s an improvement I guess. Genna came with me on Monday (reluctantly)…she listened to her music and bopped around the baseball field while I galumphed around the edges. I know it’s important…but how come nothing important is ever easy and like sitting in a Jacuzzi?

Ok, better go…I am so tired, and thinking NFy things…usually that’s my cue for getting OFF the computer! And things are a mess here, as always. The paper…it Lives…in piles ever deeper…

Thanks for praying for our friends…please do check out www.yetifunk.com to see John’s REAL running tales and his efforts for CTF…

I also am leaving up Rosie’s video, I still can’t believe this worked. Hopefully eventually we can get Genna up, too…so many of you have pulled for us for so long, I just like for you to see we really are people, not just the pictures that came with the caringbridge template…

Peace, all…
Kristin

And please, please pray for Gabbie, Nora, Hadley, Drew, Katsie, Carly x3, Pierce, Jim, Karen, Ashton, Lexie, and all our angel families…

Wednesday, May 21, 2008 1:09 PM CDT

FRIDAY A.M. LINKFEST:

I have 2 CafePress stores up & running, if anyone has a hankering for a Yeti t-shirt, button, sticker, mug, etc. All proceeds go to CTF (through John's YetiFunk! race effort. We have a few more designs (my favorite isn't up yet)...I hope you are as amused as I am!
www.cafepress.com/yetifunk1
www.cafepress.com/yetifunk2

If I just botched how you write those, just put in yetifunk at CafePress.com and you'll find us!

ALSO: at very long last, we have one video from the Coffeehouse up on YouTube! It's not the best video (it's from my sister's digital camera), and we were having connection issues here, but if you want to see Rosie singing C is for Cookie just click on YouTube & look for Coffeehouse for a Cure 08 or click this box, I can't believe this worked! (ignore the piano player harming that poor innocent keyboard)

That's my cute cute Rosie, for our friends far away (especially Joey!:) ).

Hi, all…

This week has been so busy, but I just wanted to say a quick hello…

We are aiming towards the end of school…only 9 days left Rosie told me today…I am nervous about summer, but Very Ready to be done with the grind of homework and such.

I spent the morning calling publishers of G’s books for next year…not one has large print books. I’m not sure what to do…G technically isn’t visually impaired according to the definition (better eye 20/50 or worse); her good eye is 20/30, which is Fantastic! In practice, though, she really needs stuff to be 16 point font or larger (luckily I do have an official medical document that says that!). I just don’t think she’ll qualify for help from the other agencies that enlarge things for the visually impaired. She can SEE print that is smaller, but comprehension and such is much more difficult if things are crowded on a page. She gets frustrated and that’s a shortcut to nowhere, so we need to figure out how to get things to be just a bit bigger…or find a magnifier that isn’t a pain to use. So really, I will be doing school stuff this summer, too! ; ) But it is ALL GOOD, I’m not fighting for Braille…but for print stuff, that is ALL GOOD.

Remind me of that when I’m living at Kinkos this summer! : )

I did officially finally hand in my proposal to teach part time. We’ll see what happens. I feel really uneasy about it, kind of like I just utterly jinxed our double scanfest in July. Even Dave feels a bit unsettled. I swear, we weren’t always psycho lunatics. BT world just messes with your head. I’ve been watching the Alaska Experiment on the Discovery Channel (Andrew wants to know how he can sign up to do this, yikes!)…it’s like the perfectly sane folks going crazy in their cabin, bt world has that effect on parents sometimes. That aside, we’ll see what happens with my return to the education world. I have a few other ideas if this doesn’t pan out, but really I always planned to teach again. I just need to do part time right now. Somewhere along the way my confidence took a pretty hefty blow below the belt or something. So we’ll see what comes of this…

Ok, so it was sunny when I started thinking of this update…here come the rain clouds Again!

Rosie was singing little songs this morning about how it is only 4 more days until she is 6…yeeks! We have all sorts of animal things here, no sharks or coyotes…we will have 10 or so 5-7 year olds at my house on Monday. Thankfully Dave will be home!

And if all goes well, Andrew will be free of his incredibly skanky bandage/splint one week from today. He is constantly unwrapping & rewrapping it, which is making me crazy. And to my brother who asked…yes, it smells. And not like gardenias.

The speech therapist at school said both girls are doing well; I follow up with the IEP folks in another week or so.

Last night I was watching the news about Ted Kennedy. Political whatevers aside, this is horrific news. I could feel my head doing what it does as they talked about what brain cancer is, etc….it’s just unnerving, seeing tv people speak our language in a didactic way….and then Rosie piped up with “Mom, my brain tumor is this big (holding her chubby little hands up), right?” … somehow I didn’t think the tv news would start this discussion. I showed her with my fingers a teenier tumor size, then she went on to ask if Genna had more than one tumor…ugh, yes…she is so perky and upbeat with her questions, for Rosie brain tumor just means “hey, I’m like my big sister!”…but as we move closer to 6, the Age of Doom for Genna, I hate these conversations, I hate reiterating that no, you don’t have the same kind as the gentleman on tv, no, yours isn’t cancer…

Can’t we talk about Froot Loops or something?

Our prayers are with Ted Kennedy and all the lesser known people who receive this devastating diagnosis. We especially remember Nora C., Genna’s kindergarten teacher…this week marked the anniversary of her diagnosis 4 years ago. We have to find a cure…

ANYWAY, I did try again this week to jog/walk/not fall over. I have yet to get to the point where exercising feels not horrible. I also made the mistake of telling Dave I tried to run a few weeks ago (I just typed tired by mistake, that’s a Freudian slip if I ever had one! : ) ). He was way too supportive.(!) My poor husband with the insanely globulous wife….now that I am not a pile of screaming muscles, maybe I’ll try again tomorrow. Maybe.

Although it is supposed to rain, again…! : )

My sister Emily graduates from Rutgers tomorrow, which means 1. congrats, Em 2. party, better clean up the yard, and 3. Costco cake! Woohoo! That will be 2 times this week…and I had lovely cake from Kings the other day, delightful. Really I should run EXTRA tomorrow, except that I can only run about 100 feet before my body threatens to stop whether my mind wants it to or not.

I did get to watch my nephew/godson Owen this morning…he is so deliciously spherical, blonde haired blue eyed roly poly yum. Better than therapy…!

Better go and do something, the girls start another session of swimming today at an earlier time…and getting Rosie’s hair into that swimcap is always a nightmare. I have to start WAY early. I have to start thinking about setting up our little pool, too, but it’s been so cool.

The Yetis have almost arrived on Cafépress…technically they are up, but I am still working on the storefront. My sister Annie has photoshop, that can make crazy Yetis…but I have to have her help me do that (so the We Have Come To Reclaim The Pyramids shirts will have to wait a few more days). Don’t forget to check out www.yetifunk.com to see my brother’s race training, as well as all sorts of other interesting stuff. As soon as the store is up, I will holler.

I also had a fabulous idea for our next Coffeehouse, one that will be awesome if I can make it happen…stay tuned…

Please pray extra for Jim & Aimee & Brianna at this difficult time, and for baby Andrew, for Gabbie (and her supermom, Ori!), Nora, Hadley, Drew, Katsie, Carly, Charlotte, so many others…

And happy birthday to AD (yeah, you are still that to me!)!! We are STILL youthful goddesses, more so every year! : )

Peace, all—

Kristin

And p.s. my girls are beyond excited about American Idol…we love both guys, I know David Archuleta will likely win, but we really really rooted for David Cook…a classy guy, a Super Sib…and a great musician. These little moments of yay mean a lot to my kids…

I’ll post again when my baby is 6…sigh and hooray all at the same time! : )

Friday, May 16, 2008 8:04 AM CDT

Hi, all—
Just figured I’d take a minute on a rainy Friday morning (it’s ok, I’m on cup of coffee #2) to report on happenings at the Casa Camiolo. It’s been kind of an exasperating week…nothing catastrophic, just exasperating.

I did opt to keep G home from school on Wednesday, I just couldn’t take one more day of guilt-drippy phone calls from school. In the teacher’s defense, G was So glooby, and she somehow manages to blow her nose in a peculiarly gross way…I think the teacher was just having visions of microbes crawling around the room. So G stayed home, came to the store with me, and then took a nap. By yesterday she was much better.

It looks like Andrew will get to play some ball this summer in spite of our vacation…he is very pleased, but we’ll have to wait and see how that pans out. Of course I had figured he wouldn’t be playing, so I am having a bit of a time re-focusing my brain into what that means for our summer…but it’s all good.

Rosie is deeply invested in planning her birthday party. It’s funny, I didn’t do parties for my other kids every year; we have so much family, we always have some family over, but kid parties I only did every few years. Well, Rosie apparently has other plans. She wants an Animal Party, With All Animals…raccoons, dogs, fish, bunnies, horses (without hats! Don’t ask), no sharks or coyotes, cats, deer, koalas…you get the idea? It’s really funny to hear her planning all sorts of grandiose things…she wants a panda cake and a piñata (we’ll see about that). Not sure when she turned into Extreme Party Diva, maybe she just knows on some level that her momma’s baby is turning 6 in a week and that is a yikes that merits a piñata!

In other crazy news…in the “things nobody prepares you for in motherhood” kind of category…

Parenting books tell you about kids pursuing their own interests…sports, dance, chess, just playing outside. No parenting book EVER mentions “kid who’s favorite hobby is calling radio call in contests”!! Yup, you guessed it…as I’m drippily getting out of the shower yesterday I hear Dave’s tell-tale wail of woe…oh, no! Genna got through AGAIN on the radio!!! She has to wait 30 days in between times, and she counts each day…I made her wait a week, but by yesterday she was calling calling calling…and you have to be 18 or older to play, so she brings me (yes, in a towel) the phone, her smile is from ear to ear. Oh, yikes.

This time we were the first caller…no hearing the category first and thinking for a minute, just 10 seconds of rattling off stuff. I had had NO coffee yet, for heaven’s sake I wasn’t particularly clothed…it’s amazing how nerve wracking this is! But in a kind of funny kharmic justice, based on our life, the category was Things A Dentist Does…ok, how many trips of great humiliation have we made to the dentist with my children in the last year? The radio people actually asked if I was a hygienist or something…although “hand you a bill” likely isn’t on most lists of dental activities they were expecting!

So Genna vicariously Beat the Toaster AGAIN! This time she won tickets to Six Flags Great Adventure & a concert by a band she really likes, MercyMe (as a side note, for any American Idol fans, the second song David Cook sang the other night—admittedly not his best performance, but it’s a great song—was the encore at the Switchfoot concert we went to ). Andrew is a bit irked, he has baseball that day…and Genna is not exactly a roller coaster kind of kid. But that’s the weekend we’re going away anyway, so it works out Perfectly…and it was a VERY happy moment for G.

I did suggest to the radio people that instead of t-shirts they give out bath towels with the radio logo on them. Could come in handy!

I also learned this week that 4th grade girls are snarky. I thought snarkism didn’t happen until later, but I was wrong. G was a bit perturbed (kind of sadly wondering) because one of the girls totally dissed her little going away trip with me, told G it was a stupid trip…and this was one of the NICE girls! Eek. Snarkarific. I explained jealousy to G, she just doesn’t even fathom when kids are not being friendly. She thinks everyone is her friend…when kids pair up, she’s the one left alone, but she just takes it in stride…sigh. Exasperation!

But snarkiliousness aside, Genna did have one other very exciting moment…she made it into the school paper! She has been trying to crack the KA Tribune for months, submitting picture after picture for their artwork section. Now G is not exactly a prodigy at art…she is REALLY impulsive, and at 4th grade there are some kids who really make insanely good art stuff…so it’s been hard for her to break in. Finally my dad suggested she draw a picture of him…he’s the high school choir director/math teacher, and the kids love him. Genna’s picture of Mr. Appert, aka Grandpa, her very best work (I made her take her time), made it into the Tribune (it’s really a funny picture, I think the student editors must have laughed). She was mightily pleased.

I also got to watch swim lessons the other day: Rosie is amazingly good, Genna...well, it's hard to watch her. She is MUCH better than she used to be, so much better but...Her muscles just don't work quite right, I don't think I realized how challenging this is for her. I wish I could just fix things, make her arms and legs have strength...I think I know that swimming is so good for bt kids, I had delusions...she still can't swim the 25 feet of the little pool without standing up. Her muscles just get so tired. But her teacher was great, very gentle and encouraging. We'll keep trying...I KNOW it will help her to keep trying.

I spoke to the 5th grade teacher the other day (well, we’re playing phone tag, but still communicating somehow!)…he sent home all the books for next year so I can look at them. I don’t know how I’ll get them enlarged, I have to see if any foundation can help with that or if any publisher makes large print versions. I so appreciate his (Mr. S’s ) speedy response.

So even in the midst of the exasperating (much of which I’m not really going into…really, it’s rainy and gross, does anyone need a blah? Nope)….we’ve had good moments this week. The weekend holds maybe a baseball game—not likely with this weather!, a first Communion, maybe seeing Prince Caspian if we can get to a theater…a trip to Costco to order a graduation cake for my sister Emily…busy stuff, but good.

And keep an eye out for YetiFunkFest 2008…I almost have stuff ready to put on Cafepress, I am going to make buttons & magnets & little things with YetiFunkadelicness that will support my brother John’s extreme races this summer. I am very amused by my yeti…every time Rosie does homework or coloring she now brings me paper and a pen so I can “practice yetis!”. John’s website is growing every day, please check it out (and he doesn’t ramble like I do, so his updates are a much more focused read!)

www.yetifunk.com

Thanks, too, for praying for our friends…especially we are praying for Jim right now, Aimee’s husband & Brianna’s dad—pa/jim on cb , and for baby Andrew (visit/andrewdalessio) who got his port yesterday. Urp. They are trying to get to 10,000 hits on his cb page, so they’d love a howdy!

Please keep thinking of Gabbie, Nora, Katsie, Carly, Hadley, Drew, Rosie C, Kayla, and so many others….

This is why I am yeti-obsessed these days. There has to be a cure.

Peace,
Kristin

Tuesday, May 13, 2008 12:44 AM CDT

Me again.

I know, I just updated yesterday, and no, nothing cataclysmic has happened, I just forgot some things and my last entry bugged me for no real reason. I shouldn’t update on rainy days, really.

Today is brilliantly sunny and nearing warm, so I remembered all the Good Things I forgot!

We just got the latest issue of the CTF newsletter…and there are Genna & Rosie with Mr. Fitzgerald, one of the 3 pictures I have from the Coffeehouse! The girls were very pleased to see their tiny little selves! : )

And this weekend Dave & I went to my favorite place, the Great Swamp Greenhouse…and got Way too many plants, every year I say I’m going to cut back, get fewer, after all the perennials ARE expanding…but then I have to make a garden bigger, and that leaves a space, and the flowers at the Swamp are so beautiful…it was the nicest Mother’s Day thing we could do! And Andrew watched the girls…he’s nearly that age, I can leave him for an hour or so, I get nervous leaving him much longer than that. But in this age of cell phones, I feel a bit safer.

Saturday we planted & moved mulch and dug…ooh I was sore on Sunday! But it was a Good Sore, if that makes sense.

Genna is still glooby, she was ok this morning and Determined to Go To School…of course school called again today to mildly rebuke me on spreading contagion to the free world, but I am not bringing her home for a runny nose. Call me a meanie, but really, after 2 years of chemo, a bazillion MRIs and surgeries and random “what the ^&*^*&(^ is that?” moments in oncology, a runny nose is NO reason to stay home. That’s why God made Purell and Kleenex and a robust ANC.

Eek, I’m getting annoying again! Sorry! I’m just a teeny bit exasperated….

I told Genna the other day that she & I are going to go on a little outing. When Andrew turned 10 he & Dave had some special time (went to the U.S. Open--PGA which was local that year, someone gave Dave tickets, and then went up to the Giants/Jets camp in Albany& stayed for an overnight at Aunt Donna’s lake house)…so now it’s G’s turn, she’ll be 10 in July. It’s a lot harder to figure out things G will do…finally I settled on an overnight in the Poconos, about an hour and 15 minutes away. The hotel has a pool, mini-golf, an arcade (all things she Loves), there’s a flea market nearby and a waterfall we can hike too ( I have to sell that idea a bit more still…hike is a 4 letter word in G’s mind…ok, hike actually IS a 4 letter word, but you know what I mean). We’re going right after school gets out…I think we NEED a day or two where we can just be happy & fun together, and not sparring over homework or the fridge!

It’s nice to have something to look forward to. And vacation is not too long after that…Lake George is the best therapy EVER.

Anyway, Genna told David and Andrew that she and mommy were going to the Pinnochio Mountains…! Andrew particularly enjoyed this.

In much jollier news, Andrew was very honored to find out last night that he made the A-Team in travel ball for the summer…he attended try-outs with his hand in the splint/wrap/nastiness, unable to do anything. I told him this is a testament to his work ethic (for baseball at least!) and his good attitude. He always is 150eady to play…Of course there is the little detail of that Lake George vacation…which may preclude him from being on the final roster, but he was really stoked to make it, even if ultimately he can’t play. I hope they can work something out.

For my friends who remember my athletic exploits of years gone by (or absolute & compelling lack thereof), can you even believe I have a kid who can do this stuff? Weird.

Please don’t forget to check out www.yetifunk.com …my brother John’s page for the 50 & 100 mile races he is going to run for the Children’s Tumor Foundation as part of the NF Endurance Team. I have some ideas for YetiFunk things we can may do to support his efforts, so prepare yourselves! : )

I think I may go make something with rhubarb, my mom has a ton…I made a rhubarb strawberry cobbler the other day, mmmmmmm. Even Genna & Rosie liked it, which is astounding.

As always, please pray for our friends. Especially for Aimee’s husband, Jim, as he nears the end of a truly valiant fight…I can’t even say how this hurts my heart, Aimee is one of the first people who reached out to me in BT world, and I will never forget that. (pa/jim on caringbridge). Please too remember baby Andrew, stuck at CHOP and facing a rough road still…and for all our friends, Carly, Nora, Katsie, Drew, Gabbie, Hadley, Charlotte, Rosie C., Laurin, Esther…

We need a cure…

Peace,
Kristin

www.yetifunk.com …"Across the opening there was a strange hairy creature, running up the ridgeline. A pungent smell wafted towards us. I knew then that we had found the yetifunk!" Johann Sebastian Fraunhoffer, A Brief Compilation of my Travels, including tables, charts and strange occurrences unheard of in our time, and mostly true.

Embrace the funk, Cure NF. Let’s go.

Monday, May 12, 2008 11:22 AM CDT

Snuffleupagus and a Yeti Alert!

Hi all—today is both a rainy day and a Monday, but I don’t feel inordinately down. I hope you all had a nice Mother’s Day…we had a decent weekend, really.

Thursday night Genna mentioned that she had fallen asleep during a pre-classtrip movie at school…I kind of chuckled, and then thought “uh-oh”…yup, she had a fever. Now G has been looking forward to this trip for about 2 months, seriously talking about it pretty constantly. A fever was, to quote Dave, “too cruel”…

We didn’t know what exactly we should do…so when G woke up Friday morning, we took her temp…hey, no fever! We gave her some motrin for good measure & sent her.

Yes, I am a very, very bad mom. I kind of figured she had already exposed everyone on Thursday, if she was contagious…and with no fever, there was no reason to keep her home to miss another fun thing at school…of course by the end of the day she felt lousy again, poor thing, but she had a wonderful time on her trip. She’s just missed too much fun stuff over these years, Dave & I made an executive decision (so yes, he’s bad, too!)…

So my apologies to anyone who now has G’s cold.

She never really stayed fever-y like Rose…just glooby, tired, etc. She went to her last choir Mass yesterday (again, no a.m. fever), massacred the clapping again (to our great amusement), then came home and slept for 2 hours. She sounds like Snuffleupagus….
All night she’s hacking away, I think I may need some of her melatonin! (which isn’t doing squat for her, so really I probably could take it, but of course I won’t).

In what is probably some kharmic justice, school called this a.m. wanting me to bring her home, she has no real fever, but I think she is too glooby for the teacher’s peace of mind…and it’s so rainy & cold. G is somewhat indignantly trying to take a nap now. Indignant naps are tricky.

So that’s that…

We did bring her to the counselor on Saturday, she was ok, but still not feeling great.

I did finally contact the art lady to see about lessons for G, this woman is a very talented artist who specializes in art-as-therapy (add a www and a .com at the end of that and you have her website!). We are going to meet in a couple of weeks to see what she & G can do together. I know how much Sandra loved going to her studio…

In what could be pretty exciting, a branch of the YMCA is opening (at least for the summer) about 6 minutes from our house…with a huge pool, indoor track, classes…maybe something great for G? It’s in a school for autistic kids, this massive empire just built last year in our town…it’s like a town in a building, really amazing. So in the summer they are opening it for some hours of the day as a Y, and then maybe the fall/winter will be in the other Y locations? Not sure, but even those are closer than I thought. This might be something I could do for G…and Dave knows if he wants to do triathlons he has to have somewhere he can swim, so this might really work out.

Buying a bicycle might be useful, too… ; )

This is the perfect segue to my YETI ALERT!!! My brother John seemingly only likes to do races that are deemed impossible by most of humanity…he is planning to do a 50 mile race and a 100 mile race this summer out west…yes, you read that correctly. I get tired just typing those distances…ANYWAY, John is going to run these as part of the NF Endurance Team (formerly the NF Marathon team, but now they include Races of Insane Proportions like the 2 my brother is going to do).

John’s team (which is him) is YetiFunk…I am trying to think of some funkadelic yeti stuff we can do to support his efforts…so stay tuned. If you want to check out John’s website, it is www.yetifunk.com …follow his progress, support his efforts…help solve the NF Puzzle!

I am so grateful…and really tickled by the idea of YetiFunk. Go, JOHN!!!

A Yeti is an abominable snowman, I should likely mention that in case you didn’t know or you haven’t seen that episode of Backyardigans (and if you have, now you’ll have Yetiyetiyeti! running through your head all day, sorry!).

Rosie should be home in about 15 seconds, better run…

Please pray extra hard for Aimee’s husband, Jim… (pa/jim on caringbridge)…this is so very hard I can’t even stand it, Aimee was one of the first people to reach out to me on my brain tumor list, my heart is breaking for her…and please continue to pray for Baby Andrew, he is having such a rough time…and Gabbie, Nora, Katsie, Drew, Carly…

And for my glooby G, asleep in her bed…

Here’s Rosie, must run!
Peace,
k

Thursday, May 8, 2008 8:41 AM CDT

Hi all,
Happy Thursday.

Today is soft and gray, and I’m not sure what I should be up to…

Anyway, Lefty is doing well; we saw the hand specialist yesterday, Andrew’s fracture seems to be healing just fine. The doctor was singularly impressed by how dirty Andrew managed to get the ace bandage over the splint/cast thing in just 6 days. It’s pretty gross. We go back on May 28 to get the thing off, then Andrew will be cleared for sports again.

He told me he’s been dreaming about baseball, my poor boy! He & my father-in-law went to the Yankees game last night, so that was a perky moment, even though the Yankees lost.

Genna is doing alright. I am glad that school is nearly over, even if summer is an alarming prospect… homework makes me crazy. G is VERY diligent, but she needs help with homework… she is stubborn as the day is long (don’t know where she gets that from), so she tells me I’m wrong when I help her…ack! It is in these moments the full limitations of my ability to be patient and nice are revealed. And if we never have another “measure the perimeter” problem again I will be happy forever (she can’t see the dang marks on the ruler, but she won’t stop trying…which is good, albeit infuriating). But she is still holding her own. I just realized that I will have to see if we can get anything enlarged for next year…since the Commission for the Blind closed G’s file, we’re on our own now. Maybe there’s some IDEA money for this, I’ll have to see…

G’s eyes are troubling me. I haven’t thought about it in so long, her vision stuff…I mean, I think about it, I tell people what’s up when she gets WAY close to stuff, but I don’t worry about it. We’re used to it the way it is, if that makes sense. STABLE. Recently her distance vision has been a bit off…maybe she’s just expressing it more? I don’t know. We’re at the 6 weeks out from scan point, I shouldn’t be worrying, but it’s just a bit odd.

We’ve been playing bocce, using a neon yellow tennis ball as the little bally thing you aim for (ooh, Sherry-Lee, I already forgot what it’s called!)…I figure this is at least a little active for G, but the other day she was having trouble seeing even the larger neon ball…maybe the light was bad (it was after dinner), I don’t know. At the concert the other night she didn’t realize we were talking to one of the performers from our Coffeehouse (Em’s friend Brian) until afterwards when I said something…she was so surprised, she just didn’t recognize him….we saw her teacher at the store last Thursday, G couldn’t find her in the parking lot (the teacher was waving and calling hello)…eek…

Ok, enough.

She is going on a class trip tomorrow, I had hoped to go with them but that didn’t work out (I need a few more service hours!). G is so excited about the trip, so that’s nice.

We meet with the counselor again on Saturday. We need to.

In a funny note, my children are now ALL trying to hula hoop…Rosie almost has it, Andrew can do it for a minute, Genna just looks so funny, she just shakes her booty and giggles…it’s pretty comical.

The next few weeks are a bunch of school meetings, Andrew’s follow up with the hand doc (not on our insurance, yikes—some ER coverage, but not the follow up x-rays), a dentist appointment for Rosie, sign ups for various summer activities…mostly for Andrew, it’s so hard to find anything for G, and Rosie is really good at just playing, so I don’t worry about finding her stuff to do.

I also have an almost done copy of my proposal for the kids’ school. We’ll see what happens, if they can use a part time teacher. I know that this school can’t pay me much, but I have a lot of reasons for wanting to be there…as I put together my proposal I kept thinking “eeks…can I really do this stuff I’m saying I can do??”. Crazy, when I was first teaching there was NOTHING I couldn’t do. Oh, to be young & unafraid! (yes, dreams were made & used & wasted…sorry, should have issued a Broadway alert there). Anyway, we’ll see if anything comes of it. If not, I’ll have to start looking for some other work to do.

Thus ensuring that the July scans will be catastrophic…

SORRY!!! I should never update before 9 on a rainy day!

ANYWAY, please please please pray for baby Andrew at CHOP (www.caringbridge.org/visit/andrewdalessio) … things are moving along, but never, ever, in a million years did I EVER want anyone we know in “real life”, Rutgers games and neighborhood hellos, to be ushered into our part of CHOP world. This makes me…well, maybe it explains some of my mini-funk. Matt & Claire, we are praying so very, very hard for your little guy.

And I should have said the other day, please pray for the dean of the kids’ school, Ed had his big cancer surgery on Monday…this is the beginning of a tough road, please hold his family in prayer. His daughter is G’s one friend…figures, right?

And for Gabbie, Nora, Drew, Katsie, Rosie (another Rosie C!), Carly & Carly, Charlotte, Jim, Karen, Raffi, Katie, Valerie Grace…so many folks to remember…and these are only a few…

Ok, I have to go dig (digging in the rain is almost too mournful, but I have a garden to expand and I am SO out of shape, I hack away at the ground for a while and then collapse! ), or maybe wash the very dirty kitchen floor, or finish that blasted proposal. I have to mail it by the weekend, I think.

I hope you all have a lovely Mother’s Day…to all the moms I know online & in “real” life, you all inspire me and make me smile…and I am so grateful for all of you, and for the moms in my family…my mom, my MIL, my grandmothers & great grandmother (I miss you, all you grandmas)…so much of who I am is shaped by the women in my family, there’s a reason all of us 7 Appert girls tend to be Women Prone to Roar (even if some of our roars are kind of quiet…the roar is still there). Thanks, moms….

Must go do something…
Peace,
Kristin

And a special prayer for Angel James’ family on his anniversary this week…even across the ocean this young man really touched my heart with his humor and imagination…Sarah & Frank & kids, we are praying for you this weekend.

Sunday, May 4, 2008 12:40 AM CDT

TUESDAY A.M. BIG TIME PRAYER ALERT PLEASE!!!

Hey all—just wanted to put out a PLEASE send prayers/good thoughts/dances of something go right to our friends Matt & Claire…their little guy, Andrew, is in the ICU at CHOP. We visited him the last time we had an eye appointment and he happened to be stuck in-house…he is a darling, smiley, determined little boy. They need serious prayers right now for the new liver to do what it’s supposed to do….

This is a very, very rough time…please pray that things get under control…my heart is so sad for them, knowing where they are…

www.caringbridge.org/visit/andrewdalessio

peace,
k

Hi, all—

Just a quick note, it is way too beautiful outside after several days of soggy ugh (which I guess could be called sugghy) for me to sit inside long.

Andrew is doing better today…that first night was awful. The one dose of pain meds the hospital gave us didn’t touch the pain after about 11:30 pm, at 1:30 I was online trying to figure out what else I could give him without causing damage…around 2 he finally fell asleep, but it was pretty horrible before that. We nearly left the hospital without even that one dose…the nurse told the doc she had given it to us already, which was just this side of a big fat lie (ahem, at least I’m not bitter! ; ) !).

Anyway, Andrew is frustrated with his inability to do much of anything, I caught him on Friday trying to bounce a basketball right handed, throwing rocks at trees (also right handed), and jumping over furniture. Today he is out supporting his AAU team at their game. If all goes well, he may be able to rejoin them right at the end of the season.

I’m already realizing all the stuff he helps me with…the garbages, the lifting of heavy stuff, mowing the lawn, moving heavy dirt for me…eeks! I already appreciated his help, but now I appreciate it Extra much!

Rosie LOVED our outing to see Max & Ruby yesterday. Finally she had a day without a fever…I don’t know what bug she had, but she ran a fever of 101 or higher for 4 days straight. Now she just has a glooby nose. She loved going to see the play, it was very well done, super cute. We don’t often get time without her older sibs, so this was nice.

And then Genna & I headed out to the big Switchfoot concert last night with the tickets Genna won on the radio. Well…ultimately it was a lot of fun. The beginning was a bit rough (although I had a really funny conversation with a parking attendant who after much confusion told me I could not park in a lot that had maybe 4 cars in it (there are about 1000 spaces in the lot)…it was a student lot, I had a student in the car but not an RU student…so we moved along and found a way better spot, but it was amusing to me).
Unfortunately, the way they had the speakers configured in the RAC (Rutgers Athletic Center) we couldn’t understand a word from our seats. Not a spoken or sung word. And Genna couldn’t see, we were up high…

So after the first band we went to find the Catholic Student Association (aka my sister Emily & her friends) and we stood by her for the rest of the night. She wasn’t close to the stage, but her info table was set up at the opposite end of the arena, so G could make out the lights of the stage and, more importantly, understand what was being said. I should probably tell someone that nobody in the side stands could hear…through the evening we watched the migration of people from the seats in our section.

Genna did get to meet the radio hosts that she listens to every morning…to my great surprise, my Wall of Sound child stood there smiling and absolutely reduced to silence! She just smiled at them! Finally she said hi, but she was totally star struck, it was kind of hilarious and befuddling at the same time.

When Switchfoot finally came on, the show was fabulous. I am not a huge Switchfoot fan, but they put on a great show and sang all of the 5 of their songs that I know. We had a good time hanging out with the RU folks, especially Em & Anne & Elizabeth (more than 50f the Appert sisters were present, which makes it an auspicious occasion, I think). G bought a Switchfoot CD with her allowance, she grabbed as much free stuff as she could …it was a bit sad/funny, she walked along each table checking out the font size in each book/pamphlet, etc. I had to explain to the confused students staffing the tables that she was checking their pocket Bibles and such to see if she could read them. All had tiny, tiny print, but she did get a festive magnet from the radio station and a sticker from one of the opening bands, and we got a demo cd from the 2nd band…

It was a late night, and very long, but G did have a good time, so I’m glad.

This week I think I’ll be playing catch up from a week spent trapped at home with sick/wounded kids. Emily is having a graduation party here in a few weeks, I have SO MUCH to do to get the gardens in order, I don’t dare plant anything for another week or so (still danger of frost at night)…but I have to do some digging, some tidying. All that sogginess made my perennials go berserk! I need to spread things out a bit.

So on that note I’ll run…but thanks for all the support, it’s been a crazy week. I am so very tired…

please pray extra for baby Andrew, stuck in the hospital again...and for Gabbie as she recovers from surgery. Too many people are suffering right now. Ugh.

Wishing you all peace,
Kristin

Thursday, May 1, 2008 9:31 PM CDT

There Is No Joy of Mudville….

You’d think, by now, that I would listen to the voices in my head. That Miss Clavell sense of “something is not right”…

I had that sense, ever so small, today.

Rosie’s been sick all week, that little fever got big and mean, and she has been a heap on the couch for 3 days. I think she’s perking up—thank God, I hate seeing her like this, and I’m getting stir crazy, cleaning out drawers & purging old teabags. Genna went to Grandma Camiolo’s today to “help” and Andrew tried to find anyone to go to the batting cages with him so he could work on hitting.

Nobody was around or available, he finally got his best friend (who goes to another school & didn’t have off today) to go with him. He wanted to ride his bike, which I hate (I’m trying to let go, give him space, etc. without letting him be a moron about safety)…I made him wear his road ID that he uses for running, he had the cellphone so he could call.

I felt worried. Weirdly worried, but he called a few minutes later to say he & his friend were ready to play, he’d come home around 5:30.

I decided to change the sheets on Rosie’s bed to get the germy ones off, I put a chicken in the oven to make a nice dinner…and the phone rang. It was Beth, Shawnie’s mom (Andrew’s friend).

“Shawnie said he thinks Andrew broke his finger,” she said. Apparently they called her (and not ANDREW’S MOTHER) because she’s a nurse! Beth suggested maybe they should call me before she took any action!!! (thank you, Beth!)

So I raced down to the park…like Miss Clavell, afraid of a disaster I drove fast & even faster…I had that scan day feeling, that ugh.

Once at the park, a smiling Andrew met me. “I’m not going to show you,” he said. Yeah, right, like me not looking at it would be helpful. I’m not really squeamish…

He looked like he was giving me a Vulcan salute, a real Spocky kind of hand thing…his ring finger on his left hand was kind of at a weird angle that only occurs in Vulcan nature. Urp. We thought it was dislocated maybe, he could move it a bit and it was not too swollen or purple. Off to the ER…a drill we know far too well.

It’s funny, the local ER is totally unscary to me now. It’s just annoying.

To make a long story short, the doc did x-rays (weird, we’d seen that doc with G before, and one of the nurses recognized us), and the finger was broken. This was my stoic son’s only moment of almost visibly sad…he actually thought if it was dislocated he might be able to play ball this weekend, he has 3 games. Well, had 3 games…

The doc told us he could put things back together or we could wait a few hours & see an orthopedic specialist. BT world has taught me, especially at our local hospital…WAIT FOR THE SPECIALIST. Dr. Chan was great when he came…he drew me a picture to show how Andrew had broken his finger, gave Andrew some numbing stuff (and commented multiple times about how tough A was, he didn’t even flinch at the monster needle)…then came back and put things together.

I have seen a lot of very nasty things with G’s stuff, and even with A once or twice. This wins. I was nearly jumping with heebiejeebieness, oh, it was so nasty, the way he bent A’s fingers…my toes are curling even typing this, yikes…..!!!!!!!!!

But Andrew never moved, the doctor said again, “this is one tough kid” as he finished and wrapped A’s hand up. His middle, ring, and pinky on his left hand are taped together in a cast, the whole thing is bandaged up past his wrist…we got one dose of pain meds and a sling and we were on our way. Of course poor Dave got there just after the cast went on, before the post-cast x-ray…he had stopped to get us food, of course I only grabbed some granola bars & a drink (figuring “it’s dislocated, how long will this take?”). The really sad thing is how good my house smelled with that chicken roasting…sigh.

So to Miss Nora, who I told today on her cb page that I love Wendy’s fries…tonight I got my favorite food. I’m not sure I even chewed…more like inhaled.

Anyway, Andrew is off the field for 4 weeks. No gym, no ball handling, no sports. This is not going to be pretty…he was already trying to think of things he Could do while in the cast…bike riding with one hand was the first idea, can you see where this month may go? (yes, back to the ER??!!!). Now he’s done stitches, poison control, head gonk, AND a broken bone in his life, I think we’ve done enough medical firsts, thank you very much.

We feel really, really bad for his teams, both teams he’s on lost 2 players this week…both named Andrew! Both with broken bones! UGH!

So if you can say a little prayer for Andrew tonight, the pain will likely kick in very shortly and the frustration will mount once the “hey, look at my huge cast! I can’t do homework!” fades. We follow up with the doc next week, at least my boy doesn’t need surgery, I was so worried.

Better go see if my girls are safely in bed, and how Mighty Casey is feeling upstairs. May might end up to be the cruelest month, at least for Andrew.

Thanks, all…for all your support. Please keep praying for our friends, and all those warriors fighting on…this Monday there will be a vigil in Washington D.C. for Brain Tumor Awareness, my girls’ names will both be read, as will many, many of our friends’ names…the battle is too much with us, always.

Peace,

Kristin

Tuesday, April 29, 2008 10:56 AM CDT

Hi, all…
Happy Tuesday.

We survived our busy weekend…the parties were all very nice, I think Andrew won some of his games (eeks, I can’t even remember!), I learned that not everyone can hula hoop (note to self: she who epitomizes Stiff has found a party trick!), G only had one public food meltdown (sigh), we had Costco cake 2x and other tasty desserts in between, Andrew finished his science fair project with only a moderate amount of tooth pulling, and then we were back to Monday!

Phew!

The weather yesterday was an awful sogfest, I kind of wandered a bit after the kids went to school. I did realize in the last 2 weeks that my Love Quilt square was due May 1. Like the day after tomorrow. Ooooh, yikes. I have about another 30 minutes’ worth, maybe, and then I’ll be done, but I have been in a bit of a frenzy. I must remember NEVER to start a project for a Love Quilt on a scan day, the loss of 2 months when I just mentally couldn’t look at it kind of made the last few days a cross stitchathon. I’ll have to e-mail the assembly lady to let her know mine will be in the mail tomorrow!

Rosie is home with a little fever today.

G’s first meeting with the counselor seemed to go well…I guess…I mean, she was happy (G), there was a lot of giggling. Apparently she was very open about her tumor stuff, let the lady feel her shunt (that’s a new one? She doesn’t usually do that), told her all about everything. We have a strategy to start with to help fight the food impulse, we go back in about 2 weeks. I am submitting my insurance claim Today, even with them covering half this is a bit tight. But you do what you have to do…

I hope it helps, I really hope it helps. G feels so bad about things…

The Science Fair went well…some judging snafus, there’s never enough time, but my sister Laura kind of got shafted on that front. This is the first time I haven’t judged, I have to research how other schools do this and make it work. But the projects were really interesting.

I have been having a bit of a yikesish time helping Laura, looking through old scans (which I rarely do), reading old medical e-mails and one abstract that I had forgotten about (one of those that makes that chill start in your stomach…). I don’t think I quite realized…I don’t know, my brain has had some short circuity moments, nightmares and things. It happens. Just seeing G’s old stuff and re-realizing that Rosie is just about the same age…apparently my subconscious has a problem with that.

Actually, my conscious isn't all that thrilled, either.

I was never more pleased to see that Rosie had a fever this morning…a headache in the morning sends a mom of sibling with shunt into a bit of that stomach chill thing again.

ANYhoo…back to the science fair. Andrew did great. He didn’t win, but apparently he DID inherit the Appert gift of knowledgeable sounding schmooze. My brothers could do this, put together a project in less than a week (ahem) and then talk about it as absolute experts. Andrew’s partner couldn’t be there last night, so Andrew was on his own…and he did a fabulous job explaining the cardiovascular system. He sounded like he had been studying a very long time…ahem again.

I was also a bit taken aback…there were at least 3 eyeball projects, one traumatic brain injury project, 1 chemo project, 2 NF projects (ok, those all were people related to me!), 3 other brain projects…eeks.

But all in all it was a good event. Now on to the final history project…sigh!

This week is normal busy, but I forgot the kids have off on Thursday and Friday (one is a Catholic holy day, the other is teachers mulch their yards day or something?). I’ll have to have a plan for that. Rosie & I are having special time on Saturday (shhh, we’re going to see a Children’s Theater production at Paper Mill, Max & Ruby, shhh), and then G & I are off to the Switchfoot concert at night with those tickets she won.

I kind of hope I can see Dave sometime.

I do want to thank a couple of folks…Kathy, Gabbie’s friend, for the ginormous box of beads, my girls are desperate to get started on major projects…and to Diane for the card for Dave, he was so surprised! And to Connie, always, the little notes for the kids brighten their day every time.

Ooh, and thanks to the Camiolos…they are moving soon, and their current house will be torn down to make way for a new development…so Peg called and said they had landscape rock that would just get bulldozed under if no one took it…wait, a pile of free rocks? Like 6 pallets worth of free rocks?? Cue heavenly music…I edged my parents’ front garden (in front of our house) and we hardly got through the “extra” rock…I may need some more hardscape therapy soon, thanks Peg & John! It’s a tad alarming how joyful I feel about rocks.

I better get back to submitting this insurance thing and cleaning up a bit. A neighbor is having a garage sale at their house on Saturday, I’m hoping to send over some “treasures”…yes, I still have things here we can get rid of. It will never end! Speaking of “never end”, I have to move the laundry along, too…

Please keep sending good thoughts to Gabbie, and to baby Andrew back in the hospital. Always too we think of Jim, Brianna’s dad, and Karen, and Drew, Carly, Katsie, Nora, and so many other kids.

Wishing you all peace this week,
Kristin

Friday, April 25, 2008 4:12 PM CDT

Hi, all….
Happy Friday.

We’re off in a few minutes to baseball…

Thank you for praying for Gabbie—please keep the good thoughts coming!; please also remember the family of Kiersten Hickman-Perfetti, RU fan and CHOP kid who succumbed to cancer this week. I read about her in our local paper, and have been following her carepage since…

Ugh.

Dave had a very nice birthday, and we have half a chocolate ganache cake left. Yeehaw! I also dashed to Flemington for choco-covered fruit. Yeehaw again.

Andrew is up to his eyeballs in science fair project (yikes—due Monday!), my sister is doing hers on optic glioma…nothing like showing examples of a tumor from your own kid’s head (I showed her Rosie’s, it’s much easier to see since the rest of the brain mostly looks ok…in G’s scans everything is so mishmashy, which is its own horror). I don’t often look at the scans (cue instant nausea!) , but it was important for Laura to see what the things actually look like, since they don’t look like what you think they’ll look like.

Genna thankfully has no real homework today…

The bread now lives in my room on top of my armoire, along with the tortillas & pretzels. Thankfully my mom lives next door, we are keeping the cheese there. The low carb/high protein attributes of a tortilla are undone by half a stick of butter…it’s been that kind of week. I don’t know why it seems to be escalating…but Monday we see the lady, Monday we see the lady….sigh.

In happier notes, I survived my first foray into teaching 4th graders. I think it went ok, nobody fell asleep and there was no outright revolt. Genna and I made bread from her Felicity cookbook at 6:15 this morning, which helped the presentation I think! (I draggled out of bed, bleary and pj-clad…Genna was fully dressed and standing by the door of her room, ready to bake! Yawn…the kids loved the bread, and G was THRILLED, so it all went well. Anyway, the class was very cute, they sang me their special New Jersey song at the end of my presentation…it’s an EPIC, about 14 verses long. Really cute.

Then I did a bit of choir work for my dad (that sounds glorious, I was actually taking staples out of folders!), and then Rosie & I were off to the 7th Grade Poetry Recital. Andrew recited “If” by Rudyard Kipling, he did a great job. I was really proud of all of the kids. One young man recited a poem called Invictus, which I had read on another webpage a while back…that poem IS brain tumor world…something about being “bloodied but unbowed”…strangely, that was my one ferklempt moment (well, that & the little girl who recited a poem she had written…about proving herself to her dad, whoa).

I better run to help get the girls ready for Andrew’s game, the temperature is dropping a bit—I can’t have 2 hours of everyone being “COLD!!!!!”. I have to pick Andrew up at his friend’s house (where they are hopefully assembling the cardiovascular system poster). Tomorrow we have 1. a 5K (Andrew & Dave), 2. Dave is working 3. there’s a fun day down the street in the a.m. 4. I have to stop at a First Communion party after 12:30 5. Andrew has a 1 pm baseball game, arrive at 12:30 6. Heather’s 16th birthday party…it’s a FULL day! Sunday is another game & another party…

In other tiring news, the melatonin doesn’t seem to be helping. Oh well…we’ll keep on trying for a while.

But spring is truly here, warmth and sunshine is the best medicine ever.

Much in our hearts are all our angel families…especially today the Floyds, I know it’s been 13 years but I will never forget little John Paul. For all the families with anniversaries approaching…you are in my thoughts & prayers.

And for all our friends battling…we are with you.

My toes are cold, and I have on a Dora bandaid where my teacher shoes hurt my feet (or, my grown up shoes that had to be teacher shoes but really aren’t all that comfy)…better go find some socks.

Peace, all—
Kristin

Tuesday, April 22, 2008 11:25 AM CDT

WEDNESDAY a.m.-
Gabbie did not get good news.
please pray for her family.
k

Hi all—
evening (well, 10:49 pm)...still waiting on Gabbie news...here are some pics from today...note Genna talking as soon as she saw me outside, she was giving me the rundown on her day before she got to me. Rosie is smiling even though she had recently fallen out of the tree (I knew it would happen, but no serious injury, just tears & aches)...Andrew paused in mowing the lawn so I could get him too.

please keep praying for Gabbie tonight...
peace,k
*************************

Today is Gabbie’s surgery…if ever there was a day we needed mega prayers, this is it, please please please pray for Ori & Gabbie today. www.caringbridge.org/visit/gabriellehughes … any encouragement or prayers, please send them on over.

Rose will be home in one minute, and honestly I have only that to say we are well, and approaching an apex of busy-ness…this weekend coming up is alarming. All Good Stuff, but alarmingly full.

G found the bread. Darn. I know it’s a small thing in the big picture of life, but any prayers on this front are appreciated. Apparently I’m the meanest mom in the world, which I’ve been called before (and to which I say Yup, I am An Ogress or something like that) , but it smarts more when I’m desperately trying to help my child not make herself really unhealthy.

We’re still not sure if the melatonin is working.

Oops, here’s Rosie, better run…she is making puppy eyes and saying “I’m hungry…”with a pitiful sigh.

In case I don’t get back her until later in the week, happy birthday to Dave, the best dad/husband ever.

And to Phoebe my goddaughter, 5 tomorrow, and my youngest sister Laura, 15 tomorrow, and Dave’s cousin Heather, 16 tomorrow, and Uncle Mark Filoramo, um, old on Friday…yes, this is Birthday Central week here!

Thanks, all—your encouragement really carries me…not sure why, but my brain has been having some random yikes moments the past few days…it’s really annoying, that moment of caught breath & tight chest that just happen…but today is good. And Rosie is apparently getting “hungrier and hungrier!”. MUST run…

Kristin

Can you believe how short this is?

Friday, April 18, 2008 6:45 PM CDT

Happy Friday, all…

Another week flew by…and it looks like Spring Has Come to NJ! (thus ensuring we’ll have snow next week or something). All the trees are flowering, today was nearly 80 degrees…gorgeous! Our spring bulbs are blooming, the weather is so spectacular.

I am still very pleased that I found someone for G to talk to. I hope hope hope it helps, things are getting yikes here. And then I get mad, and G starts crying…and then I feel horrible, I know she can’t help it, but it’s so infuriating. I want to try & spend special time with her not at our house, but I can’t very well take her out for a treat at the diner or something if she’s eating all the cheese when I walk out of the kitchen (she can’t reach the bread…yet). We need some intervention here…I really hope this lady can help.

We’re still waiting for the melatonin to help…I thought maybe it was, until Genna told me tonight, “Hey, tomorrow I will finally sleep through the night!”—I guess I said it could take a week for the stuff to work, and she is nothing if not Literal. Oops! : ) We’ll keep it going for a while longer, it’s certainly not hurting.

Although my sister just walked through & said G is falling asleep on the couch upstairs, and it’s 7:26.

Dave is into crazy work time, and Andrew has some baseball this weekend, not much. He’s (Andrew) not feeling great, I think it’s just a bad cold, but he really is dragging. He HAS to work on that science project this weekend, yikes!

Rosie has taken to climbing trees, flipping around the swingset…it’s alarming. She looks like that scene in the Sound of Music where the kids are all hanging out of the trees…we have 3 cherry trees that line our front yard by the road, she is a monkey on these trees.

That gives me palpitations.

She’s also having “scary thoughts”, a lot of “scary thoughts”…not just at night, I am a tiny bit concerned.

In other news, we were all watching American Idol the other night and rooting hard for David Cook, who is apparently a SuperSib like Andrew & Rosie! We were all suitably impressed. The next day Genna pointed out that she was kind of a SuperSib to Rosie…sigh. But hooray for David Cook!

The day after that G turned to me at Andrew’s baseball game (still looking for that 1st rec win!)…she covered her right eye and said, “Mom, I can’t see anything out of this eye (left) if I cover this one” (right).

I had a weird 2004 moment there, collected myself, and then told her so don’t cover your right eye…she smiled and said, “Oh, ok!”. eek.

Side note: Rosie just said with some exasperation, “I don’t know why I’m so busy right now!”…she’s looking at a book next to me, and talking, this is her definition of busy (she is explaining). I better finish up…

So life is full. I had a much needed cup of coffee with my dear friend Christine (I am so glad we made that happen!! And yes, a thousand years would be closer to the time needed, I think)—which is always good medicine. I’m still learning how to get social again…so silly, after all this time stable, but I don’t always know what to say to people.

I am hopefully going to go do a presentation for the 4th grade NJ history class next week, Genna is delighted. Of course I have to do some hefty preparation (I have all the resources, I just don’t remember all the facts! My brain has been a bit pre-occupied the last bazillion years! : ) ). Andrew has his poetry recital, which should be entertaining. And Dave has a birthday, the one Before a Big One…which usually entails the making of an extremely chocolate cake.

Gabbie has her surgery this week; Kiersten is still battling, and Katherine is struggling. Even little baby Andrew is stuck at CHOP…ugh! But we are grateful so many friends are doing well…Lexie & Devon & Charlotte & Paige & Madeleine & Drew B all had good scans…we’re praying for our buddies Drew & Nora & Katsie & Carly…so many people.

Thanks for checking in on us. Things are generally going well, I just have to say the ugh stuff and get it out of my system…I don’t want to bum anyone out, we really are mostly very well. It’s just the mosquito-y stuff now, nagging little things that cumulatively can be irritating…but I wouldn’t give up summer because of the bugs, and really stability and G doing so well in spite of those insecty obstacles is definitely a hooray of summer.

Rosie is now doing a “da na na na na na na na na” version of Fur Elise behind me and asking if I know that song…better go be mom.

Peace, all—

Kristin

p.s. Go Devils! tonight could be the last game, but we believe!
Mr. Lamoriello sent us a nice little one liner note, saying he was glad our Coffeehouse went so well...the Devils organization is wonderful in ways we never knew!

Tuesday, April 15, 2008 10:40 AM CDT

A little Wednesday note…
I think I found someone for G to talk to!!
A friend called yesterday (long story how she knew we needed someone, I was ok with that)…she told me about the counselor her son sees for issues related to G’s stuff (not bt, not food, but other similar stuff). I called & left a message…within an HOUR she called me back, talked to me at length, and was absolutely unfazed by G’s peculiar circumstances. Her specialty is EXACTLY what I was looking for for G. She thinks she can help us, she’s only 12 minutes away, and we have an appointment in 2 weeks.

She isn’t on our insurance, but our insurance will reimburse half…I still haven’t gotten a call back from the first name on the insurance list, so I’m done.

I can’t even tell you how morale boosting this is, just to have some hope on this front. I think I’m at about 14 phone calls, 6 e-mails, and about 4 hours of internet searching to try and find someone. I really really hope this works out, she sounds fantastic.

So if you continue to read my blah kind of entry here, at least know that THIS ginormous piece seems to maybe be coming together! My poor G has been struggling so hard…

Ok, better go refill the coffee…have a good day, all…and thanks for pulling for us.

Peace—k

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Hi, all…

Happy Tuesday. Happy Tax Day.

Thanks & Congrats to Tatiana, our 100,000 visitor…I still kind of can’t believe it. G wanted to know if we would give a prize to visitor #200,000…yikes! Thank you all so very much, and a special woohoo to Miss 100,000, Tatiana!

Things are chugging along here in a mildly frustrating way, but at least we’re chugging. I got the report for G’s testing, which is always pretty demoralizing. I’ve hidden the bread in a new location, and begun to despair of finding any active fun thing G will do (also kind of demoralizing) and the counselor has not called me back…I’ll give her one more day, then I’m calling again (yup, demoralizing). G is starting to see me as the ultimate Meanie, which is not good for either of us (and really demoralizing). We got the official, “yes, Genna has a brain tumor” letter from Dr. B which I need to fax to the Child Study Team…which, even though I KNOW all the stuff she mentioned, it sounds way worse in Medicalese. Kind of…demoralizing?

G informed me on Saturday that the melatonin Did Not Work. We’re going to give it a few weeks before we give up, thankfully it’s the same size as her “peaceful” medicine, she is a pro at capsules.

Ok, enough waa waa waaing…I just feel a bit like I’m running in circles, getting nowhere except dizzy.

Friday, G & R came home with report cards…G got all A’s & one B! And she has improved in “peacefulness”…she is impulsive and a Wall of Sound, not a great combo for the classroom. Her teacher has really worked with her, and has just been wonderful…That’s something to cheer.

Rosie did great too…but she got a C in penmanship. Now our school has this bizarre idea that it’s beneficial for kindergarteners to learn script. I have argued about this in the past, but as G finished K her teacher was diagnosed with a malignant brain tumor (we love & miss you, Nora) and then G was diagnosed…I let the battle drop. But really, do I care if Rosie can’t write in script? No.

But to Rosie, this was Armaggedon.

She began to wail, weep, sob…”I never got a C before!” she cried…of course this is her 3rd report card ever, and really it’s more a glorified progress report…but Rosie was beyond crushed. It took me nearly 15 minutes to get her to stop crying…she was afraid her C would preclude her from special post report card celebration with Aunt Rita…but I told her that Aunt Rita doesn’t care about penmanship, Rosie’s other grades said that she was working hard and being very good in class.

Finally I calmed her down. Apparently she bopped into school yesterday and cheerfully informed her teacher that Aunt Rita doesn’t care about penmanship! Thankfully Mrs. W has a great sense of humor!

Things are otherwise well. Dave is finishing up the tax work he does on the side, and getting busy at his company, too. We planted a tree this weekend. Woohoo for Earth Day and all that…not so much! About half way through the process (yes, this is the SAME tree we’ve been planting for a week) I was consumed with jealousy of our neighbor who can pay people to do this, David was saying “never again”, we both looked like the abominable Mudmen, I had collected enough rocks from the hole to make a 10” x 15’ little wall of stone behind the swingset where I want to move some deer resistant perennials…yes, that’s 15 FEET, and I have another wagonful still to dump, in cutting back the wild roses to make room for my garden I now look like my arms had a run in with the Amazing Ginsu, I muddied 3 different pairs of shoes, Dave accidentally kicked a spritzing of mud on my non-garden clothing (note to self, never wear light pink near spouse who is up to his waist in a muddy pit)…it was an epic of yeeks. Andrew and I ran to Home Depot to get more dirt (once you take out 57 million rocks, there’s not enough dirt to re-fill the hole…we got 12 bags of dirt and just had enough, even with backfilling with the clay of our yard)…

Sometimes Do It Yourself isn’t quite like the gardening shows on tv…

Still, the tree looks so pretty now that it is standing up. It’s a red maple, and I pray to God it lives.

This week is more baseball (Andrew is still searching for that first win in rec ball…!), G has choir & swimming, we may try to visit with my sister in law who is in town…I’m cleaning cleaning cleaning (now there’s mud all through my house! Ack!)…I swear, my house is always a mess in spite of my cleaning. I’m trying to think of ways that are fun for G to be active outside…maybe a new croquet set? Or tetherball? Bocce? An obstacle course when the yard is less of a swamp?

And we’re praying, for so many people who need our support…please give a shout out to Gabbie before her ginormous operation (www.caringbridge.org/visit/gabriellehughes), pray for Drew, Nora, Katsie, Carly, Katherine, Lexie who is scanning, Connor & Kiersten & so many others…

Better go do something before Rosie comes home…but again, thanks for your support, and please, just pray the counselor calls back or someone can help us. I just don’t know how to help G, which is leaving me a bit demoralized. Did I already say that? ; )

Peace,
Kristin

Friday, April 11, 2008 11:18 AM CDT

SATURDAY...
holy cow, we are alarmingly close to 100,000 visits! you all are amazing...if you notice that you are Visitor #100,000, can you let us know? We will think of some celebratory thing.

This has been a long and peculiar road, hasn't it? One we never could navigate without all of you...

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Happy Friday, all…

The week has been crazy but not bad…

Andrew survived his 1st rec baseball game…he was the starting pitcher, and as he started I realized that he was the youngest person on the field…um, yikes? Somehow I missed that he was playing up…he actually totally held his own, the only real serious hit he gave up was a home run to a 15 year old…even he laughed at that, what could he do? The kid was huge & mighty. Looks like in rec, at least, we are going to aim for A win this season! : )

He (Andrew) is also pleased as punch because we found him the exorbitantly overpriced bat he’s been saving for online at about 60ff…it’s last year’s model (like bats change that much?), he is beyond excited…he’s been borrowing from teammates because he outgrew the bat he had. I still can’t fathom the cost (new ones can be up to $379??? Holy cow)…but he has been saving, and we’ll cover a little, and he is learning the Thrill of Finding a Bargain…a lesson I hope he remembers!

In one cool and unexpected moment, G ALMOST advanced to the next level in swimming…only 1 more skill to master! Maybe I’m inordinately pleased about this, but she was petrified of the water 2 years ago (unless she could totally stand)…she’s still a bit nervous, but I was beginning to think she’d NEVER get out of Beginner 2, she is getting old for that level…maybe one more session and she’ll have it down! I am very proud of her…

And my little fish Rosie has 3 more things to pass to get out of Beginner 1 (mostly backstroke stuff)…I’m super proud of her, too!

I got a call on Wednesday that the Child Study Team was able to move up G’s testing if I could get her to school by 8 yesterday…so we scurried down early, I dropped her off, went and filed some choir music for my dad (get in those service hours!) and then substituted for a very sleepy 8th grade class (except for the token Kid Who Must Comment On Everything). It went pretty well.

Yesterday was spectacularly gorgeous here, one of those early Spring teaser days, 75 and sunny…Andrew and I worked on the Deep Hole in our backyard for the lovely tree which is starting to get leaves even though it is still sideways! Genna & Rosie played outside (one of them reluctantly). It made me happy to be alive.

This morning I survived the dentist, and then had the meeting with the social worker down at school. That went long, but I think we’re in a good place for Genna. The social worker really affirmed our decision to keep G in the school she’s in, which just made me feel good.

I also (I’m telling you, this week has been BUSY) finally got 3 more names from our insurance of folks I can call for G…I called back & specifically asked for a particular type of professional in a specific town. I have a call in to the first name, we’ll see how that pans out. We need some assistance…I’m running out of places to hide the bread.

And our melatonin should be arriving today…I was strangely WAY nervous ordering it, I feel very uneasy about this kind of thing, but Genna is happy to have something to try & help her sleep. Special thanks to Alice, Lexie’s mom, for talking me through this new land!

I hope nobody was offended by my almost rant; my opinions on certain therapeutic approaches are largely based on some difficult personal experiences and observations. Anytime ANYONE gives me ANY suggestion to help G, I DO take time and look it up, ask our doctor, check out the research on it. ALWAYS. I take every recommendation seriously and respectfully…I’ve just rarely had that attitude reciprocated. So I get frustrated. That’s my story! : )

Just figured I should clarify! : )

The weekend should be full of baseball if it’s not as full of rain as the weather people predict. Dave has to work from home, Genna & Rosie are desperate to see their baby cousin Noah who is visiting for a few days from Florida…I have to help Andrew finish that hole…digging is so therapeutic…

Which reminds me of some MAJOR THINGS THAT NEED Prayer…
*Gabbie has a monster surgery coming up on the 22nd… www.caringbridge.org/visit/gabriellehughes ; if you can give her a shout out or a jolly hello that would be fantastic.
*Paige is scanning today!
*Lexie is scanning next week!
*hooray for Charlotte & Devon, STABLE SCANS!!!
*so many of our friends need prayer…Ed, Karen, Jim, baby Andrew, Katherine, Ryan, Connor, Kiersten (a girl we read about in the paper…a HUGE RU fan & a CHOP kid who is near the end of her battle…I’ve been following her Care Page, it is heartbreaking)…

And especially for Angel Timmy’s family today…2 years…seems like yesterday & forever, Susan & Jay & Jason & Andrew we are thinking of you today.

Rosie should be home in one minute, I have to run…
Wishing you all peace,

Kristin

R just came in with her report card…ooh, that’s today…yikes. We’ll see how that plays out for everyone…

and so far Flippy 2 is doing very well! : )

Monday, April 7, 2008 3:42 PM CDT

Hi, all—

Happy Monday.

Things are chugging along here…the weekend was busy, but good busy mostly. Andrew did have a frigid baseball game, and I think we’re in for another chilly one tonight…I love baseball, I hate being cold. It’s a tricky business.

Yesterday Dave & Andrew went to the Devils game with someone from Dave’s office…what a treat, thank you! This was my boys’ first time at the new arena, apparently it is all that and then some. Rosie spent the afternoon playing with Maura, G took a nap and then read a bit.

She isn’t sleeping well, which is an ongoing issue. I can’t fall asleep at night, so then I can’t wake up early to be there to help her when she can’t sleep in the morning…anyway, I’m looking into starting melatonin for G’s sleep problems…I know, I’m not exactly a homeopathic kind of gal (more because of personal experience with being on the receiving end of Didactic Demoralizing Dictates, if that makes sense…I now erased the next 3 sentences 2x, I’ve done well for months without getting myself into big trouble, I shall refrain from comment).

Ooh, I wish I could comment. But that would be a full fledged rant, and I Am Not Going There Today.

ANYWAY, I know from several bt friends that this has helped their children with sleep issues. It’s funny, but usually in bt circles folks Will discuss all sorts of ideas for treatment without judgment or “if you do/don’t do this, your child’s ill health is YOUR Fault! (oh, guilt, a mom’s frequent companion), I think the reality of a shared dire circumstance helps us all understand that a)decisions are brutally hard and utterly personal and b)there are so many variables and c) really, if dancing by the light of the moon while wearing a chicken suit and listening to a Yanni cd would make our kid better, we would do it without too much grimacing. It’s one of those “hey, these shoes we’re all walking in pinch our toes” kind of moment.

ANYWAY again, So if we can talk to our doc, maybe we can get G some melatonin and maybe this will help her not crash and burn mid-afternoon (just as she comes home from school to me, sigh). Maybe not? Who knows….?

I thought of one more place I can try for a suggestion of someone for G to talk to about strategies for life and such. I have to revive my efforts…We realized this a.m. that my Secure Bread Location is not all that secure…I should be pleased that G is so enterprising, but sigh.

This morning I spent a fair amount of time contacting my senators & congressman to ask them to support Congressionally Directed Medical Research Program’s Neurofibromatosis Research Program (CDMRP-NFRP) in the 2009 Defense Appropriations Bill. I admit I had to cut & paste that! It’s so important…every dollar is one step closer to a cure. I faxed letters, which is only hard because I can’t really include pictures…and in the case of finding a cure for NF, a picture truly is worth a thousand words. If anyone else wants to do this, they need them by tomorrow (yes, PQ here…Procrastination Queen)….but it can be done online. The CTF website has a link under “advocacy” with a sample letter and all.

So really we are marching on into our weird topsy turvy version of normalcy. Baseball, choir, start science fair project, more baseball, a dentist appointment (for me, ugh), substituting, filling some school service hours, and meeting with the Child Study team lady…it’s a full week.

Oh, I almost forgot … great excitement in Camiolo land…Rosie won a fish at school, which she promptly named Flippy (yes, again). Of course Splashy the Monster Orca Fish must have been this tiny when we got him, but poor Flippy looked terrified when we added him to the tank with the aquatic Behemoth. He seems to have adjusted ok, he hides behind the fake plant. He is very cute, and Rosie was beyond excited. Friday was the post-Easter celebration at school; each class had to wear a particular color, and kindergarten had purple. Thankfully we had purple clothes…and Rosie told her teacher as soon as she saw her that “I don’t just have on purple clothes, I have purple underwear!”…for Mrs. W this was apparently the somewhat hilarious straw that tipped the Fish prize in Rosie’s direction…

Hopefully Flippy 2 will fare better than Flippy the First! : )

Better go finish making dinner, we have to eat early because of Andrew’s game. I think he’s pitching tonight, which always scares me to death.

Please keep Gabbie, Drew, Nora, Katsie, and Carly especially in prayer right now…and Hadley, and Charlotte & Paige who scan this week, Lexie who scans next week…and about 57 other kids in dire need right now, Katherine and Kasey are two who leap to mind.

Hey, this is almost a short update for me!

Wishing you all peace, I’ll “talk” to you all soon…always, thanks for your support, it means really quite a lot.

Peace,
Kristin

Don’t forget to check out Gabbie’s page www.caringbridge.org/visit/gabriellehughes to see Mom Ori’s cool NF store…if you think it, she can make it & sell it!

Thursday, April 3, 2008 8:17 AM CDT

Hi, all.

This is actually a rewrite of what I was going to post yesterday…it was a weird day, but today is off to a Much Better Start.

And first hoorays to Gabbie on a good doctor meeting!!!!! We were all praying SO hard.

G’s school meeting went far better than I thought it would; of course I need more paperwork (an official, “yup, she Does have a brain tumor” letter from the doc) but all in all I was much more prepared than I’ve been before, thanks largely to an online group about educating bt kids…just reading over the last few months I felt like I knew more what needed to be said & presented. I already faxed the lady some additional info she needed for Enlarging the Test (nice I don’t have to plead that case, she remembered!).

And I got to see her & Rosie for a minute at swimming (they don’t let the parents watch until the last class)…Rosie is getting really good, and even Genna is doing MUCH better. I hope I can keep them in swimming…it is going to be harder in the summer, this year our schedules don’t match…but I know this is so great for G.

You know, yesterday was a better day, I finally left the house, Tuesday late I started to really revive, I dragged G out for a walk, it was gorgeously warm and sunny (chilly again today!)…I think I need to make that a priority post scan, getting OUT, to keep my brain busy during the unwinding time. I felt so much better, went grocery shopping, impulse bought a small ice cream cake…hey, for $4.99 I kind of Had to…

This morning I dragged my sorry self out of bed (Rosie joined us around 2 a.m., which then means sleeping is not nearly as guaranteed as when she is in HER bed…scary dream, what can I do?). About half way through my sleepy shower Dave bangs on the door…”She Got Through!” he said with a tone of defeat and dismay…Genna once again got through on the radio call in game she listens for each morning. Oh no…

So I leap from the shower, knowing full well that Dave has many gifts, fast talking under pressure isn’t one (guess who talks fast in our house? Reallyreallyreallyfast? ; ) )grab a robe & scurry my now very drippy self downstairs….and we listen to the person before G…category, Warner Brothers Cartoon characters…the lady went blank. Honestly my brain flipped for a minute, but then we assembled a list—my whole life, Bugs Bunny & Co were THE cartoon we used to watch, we have the Christmas album (it’s pretty bad)…this was going to be a matter of family honor!…Genna got put through, she chatted with the morning host for a minute and very nearly asked for a new category “Same category! Same category!” I hollered at her…so they told her to hand me the phone!…anyway, thanks to Bugs Bunny, Daffy Duck, Foghorn Leghorn, Tweety, & Sylvester the Cat, Genna won tickets to a concert That This Time She Can Actually Attend!!! Switchfoot at the RAC (Rutgers Athletic Center) on May 3!! She is so excited, and she gets another t-shirt and a cd…she spent the 20 minutes remaining before school talking at an ear shattering decibel level about NOW I HAVE A CD WHEN WE GO OVER THE BRIDGE INTO PENNSYLVANIA AND I CAN’T HEAR THE RADIO, I CAN LISTEN TO THE CD!!! HIGH FIVE, MOM! ANOTHER HIGH FIVE! And so on…!

It’s also sunny, and aside from cleaning (Rosie tied about 6 jump ropes together and made what looks like a rope course in the basement…from the handle of the playroom door (one of our entrances to the house!) to the railing of the stairs…around & down), my ever present chore, today is pretty open.

Our weird, and now edited note…our yard backs up to the local high school’s ballfields…around three yesterday a medevac helicopter landed in the field, about as close to my house as they could be without actually being on our side of the fence. To see the thing land very nearly in our backyard was extremely unsettling…

I didn’t quite realize…we never had to do this (thank God)…but our first night in CHOP, that is my clearest memory, the copters coming and going, bringing terribly sick or injured children and devastated families to the same awful empty dark place we were in, I could see the lights through the glass ceiling of the atrium just outside our window…and in 2006, when G was stuck in-house for 10 days and started losing her hair and again I couldn’t sleep, the copters were so frequent one night, I could feel my insides just screaming for them to stop.

Later I learned that a family I “met” in our online bt group, now an angel mom, was one of those copter families that night.

We of course all assumed yesterday that there had been an accident involving students from the high school, all the emergency vehicles were clustered right around a particularly treacherous spot on the road—in fact it was a disturbed young man (not from the high school) who attacked the police and got shot…on the road where Andrew USED to run (note the past tense…even A was a bit rattled to see it on the news). The field was the closest medevac spot, I guess. I was simultaneously sad for his family, mad that my head is apparently full of very crossed wiring, and relieved that it Wasn’t a terrible accident. But what a strange thing…we live in utter suburbia, I have no clue the last time a police officer in this town fired his weapon…too much drama.

But today is a new day. I put the painful memories back in their odd mental box, we went out for Uncle Jon’s 30th b-day (yum for pineapple shrimp Chinese food), I’m on my second cup of coffee, and the sun is shining. I better go tackle my girls’ room…I have to tame it a bit before I can get them in there to clean it!

Have a great weekend, everyone! And thanks always for your support, it means a lot, more than I really can ever say…I know, I say this all the time, but it’s true and I want you all to know how much I appreciate you all.

Peace for all,
Kristin

And for Dean Ed from the kids’ school…we are pulling for you!

Monday, March 31, 2008 10:53 AM CDT

Hi, all—

Happy Monday.

Well, we are mostly recovered from last week. I always forget somehow that the day after even a stable scan is kind of a train wreck here.

Genna was exhausted, Andrew & Rosie were a bit put out by the long hospital day, I was a heap…it wasn’t a pretty day. I won’t go through the litany of woe, but let’s just say that for about half the day my kids were sent to their rooms in disgrace…! It was rainy and cold and we all felt like road kill.

Somehow the day after a good scan my heart always really really aches for the families in dark, hard places. And right now we know a lot of folks in really hard places…I know, that sounds insane, we should be tripping the light fantastic or something, but I do feel inordinately sad the day after…I so want for others what we had on Thursday, it kills me that people are in such hard places…we’ve Been there, and it rots. Truly rots.

By the weekend everyone perked up a bit. G’s labs all came back normal, which is great! I did tell the nurse we NEVER get a “hey, this is normal!” at CHOP, so rejoicing would ensue. In a similar vein (no pun intended) G’s pituitary is not squished…I had wondered, due to its proximity to the very squished hypothalamus…but it’s not. There is actually One Piece of G’s Brain That Looks The Way It Should!! Thinking about it this morning I broke into an awkward chorus of “Let’s Hear it for the Pituitary...let’s give the pituitary a ha-a-a-a-and”…it’s a good thing (the normal pituitary, not the awkward chorus).

We did get a tree on Saturday to replace the one that fell down last summer. It is beautiful. Few things are as therapeutic as a lot full of plants & trees and shrubs all budding and alive. If I were a gazillionaire I would make my whole yard a giant garden…and then I would wander through it all the day. Well, until someone started hollering “he’s bothering me!” or “mo-om! Can I have some pretzels???”.

I ended up NOT going to the NF symposium at CHOP. I wanted to, but then realized a) I still felt vaguely road-killish, b) I didn’t really Want to Hear About NF, I just wanted to meet NF families and it Is about 4 hours of driving all told…and c) Dave had to go visit Grandpa, so really I should wait. I probably Should have gone to listen…I need to get myself more proactive with stuff, I am uber-sick of NF. I think I need to become an Info-maniac.

Onward & upward…

Wednesday I have an IEP meeting for G, I need to collect my materials/info/multi-syllabic words of woe to explain WHY we need the IEP…our local child study team benefits from this info (we’ll say it like that). I also have to renew the search for a helpful talk person for G…sigh.

At least I am cross-stitching again…getting the project re-started last Thursday seems to have lifted the “Bad Scan Day Project Which Shall Now Forever Be Shunned” curse from this piece, which is good since it’s due May 1, I think. Sewing is almost as therapeutic as a garden store.

In sillier news, Rosie has taken to singing, “If there’s a rabbit…you better grab it!” over and over, melodramatically…I finally realized she was imitating Patti LuPone on Sandra Boynton’s Blue Moo…we had a lovely time of Tango-ing (which is what that song is) and marching (to the “Loud Precision Band” song) on Sunday. She had a many bumps & bruises kind of weekend (starting on that miserable Friday), so this was low impact fun! : )

So this week we’re back to baseball and choir and whatnot…a science fair is coming up, and a poetry recital, and all sorts of busy things. I am also trying to figure out if I can go back to part-time teaching next year. With a July scan for both girls, I worry about committing to this…but I think it might be good for me & for the kids if I get my brain working a bit on things like ancient plagues & the U.S. constitution and the like instead of the plague of “what-if? When? Aaaaagh?” that lives at our house.

As always, thank you for all your support, the messages mean more than a lot…I still feel a bit adrift in “watch & live”…

Please, if you can, check out www.caringbridge.org/visit/gabriellehughes to check out Ori’s online NF store, some really cute stuff there…and give a shout out to Gabbie, who could use some encouragement. Especially too we are praying for Katherine, Connor, Drew, Katsie, Nora, Carly, Ryan, and so many other kids and grown ups…

Please, too, we recently learned that one of the dean’s at the kids’ school has a catastrophic illness…the dean who has listened to me, never blown me off, addressed my concerns, helped G, supported our advocacy efforts for her…his daughter is G’s one real friend at school…it’s really devastating on a lot of levels, so please, please hold Ed’s family in prayer as they move forward.

Thanks, all…

Peace,
Kristin

Thursday, March 27, 2008 5:32 PM CDT

STABLE.

Rock solid, nothing different, even I wasn’t freaking out about weird enhancements here and there because they were the same weird enhancements as always kind of stable.

Phew.

I was a wreck the last 2 days, I guess I just waited to freak out until Monday or Tuesday…ugh. But it’s over and we’re ok for another few months…

A very weird day, I of course woke up 20 minutes before my alarm was due to go off (that would be at 3 holy cow it is ungodly early 45 am)…we got out the door by 4:40, made it to CHOP by 6:28, right on time for the new, early because “registration makes MRI run late” arrival.

And no one was there.

Lights out, one other mom & son waiting…ARGH? For real? Are you kidding?

As you can tell, I was very amused…NOT. But by 6:45 someone got there, by 6:55 we were headed down to MRI. Don’t even get me started…

The labs could not get done in MRI (yesterday’s 4 phone call stress), some computer glitch, so the MRI nurse just put in G’s IV (no problems, G is so amazing at this it is crazy, I forget that it’s unusual for a kid her age to sit perfectly still and then just holler a little opera of “OW!” with a smile while getting poked). G also enjoyed the new bigger scrubs/pjs things she had to wear. “I am growing up!” she said with some satisfaction, and then began singing that to the tune of “Oh Christmas Tree”…once dressed, she declared that she looked like a neurosurgeon. Hopefully most neurosurgeons have their fannies slightly more covered! : )

G fell asleep VERY quickly, even before the actual “sleepy” medicine was given. After the scan she woke up really fast, and wasn’t even too wobbly…so we went upstairs to the family waiting area to …well, wait!

We had 3 hours before our clinic appointment…

G played on a computer, I actually dozed a bit…until the power went out, which is a bit unnerving in a hospital! The lights returned quickly, but the computers remained down…we started chatting with the other family in the waiting area, strangely enough they were waiting to scan & then go see Dr. B…weird!

After lunch…which I ate today, in an attempt to prevent a migraine, we went upstairs.

Did you know that it takes 40 minutes for an MRI machine to re-power up after it’s off? Our new friend didn’t even get to scan…thank GOD we took the early scan instead of the 1 pm, can you imagine me having to do pre-scan 2x? I shudder to imagine it, Dave would likely run away, far, far away…(well, in his head, he wouldn’t really…although he DOES run…and it is AWAY from our house…ok, 3:45 wake up, people, I am a bit woohoogily).

Anyway, Cindy managed to draw the labs from G’s iv (woohoo!)…we’ll get results next week. The procedure rooms got these gorgeous new murals of seasonal scenes in Philly, really nicely done. And I got to see Banu & Devon & Paige & Dorian & Mikayla…a nice hello…

And then, shocker of all, we got in to see Dr. B only 45 minutes past our actual time! Hello!

G was so perky and full of jokes and pep. Last night she was pretty sad, but today she really was very sunny. AND we got good news (even if the radiologist did speak the words we do not mention, she is still worried about the stuff we biopsied for, but we Biopsied, we KNOW what the stuff is…but seeing scary words in the first line of an MRI is guaranteed to make a mom insane.

We also met a new NF coordinator there, what a great resource for NF families I think she will be!! And we weren’t too scary today, sometimes we are quite an event.

I feel happier than usual, somehow…we talked about a lot of issues, and joked about my somewhat high level of perpetual YIKES, and got G’s camp form filled out…and I re-started my sewing project…And best of all, we were done by 3:15!!!!

Better run, I have a feeling eventually I may just topple over, I feel a bit wobbly, but thank you all for the prayers & good wishes and dances of stability and everything. I can’t tell you how much it meant to me today to think of all of you pulling for us, it really carried me…

I’m sure I’m forgetting something…but stable. Phew, stable. I was so worried…

So worried that I tried to run yesterday while blaring very loud music directly into my eardrums, significantly underestimating just HOW out of shape I am. About 50 yards in I thought I might pop a spleen or something, so I walked/ran the one pitiful mile and then felt like throwing up for the next 3 hours. Dave and Andrew find this to be fun?

I think my delusions of 5Ks have just been un-lusioned or something.

This is getting insane, I must go find something dinnerish for the kids…

But thank you times a billion, and please pray for our friends who are struggling so much right now…

Peace,
k

Tuesday, March 25, 2008 12:30 AM CDT

Happy Easter, all…

I hope everyone had a wonderful weekend, Easter or no…I am currently alternating between Cadbury mini-eggs & Reese’s eggs while I type.

The vigil Mass on Saturday was gorgeous, Rosie did not set her hair on fire during the candle part (which is always a good thing), the music was splendid, the church looked spectacular…there was a strangely festive Easter egg tree, which made me smile, it was so appropriately NOT solemn. Really, a giant branchy tree covered in ribbons & the kind of eggs you fill with candy, big ones and little ones in alarming colors…very happy.

As soon as we blew out the candles and all the lights came on in the church, Rosie curled up in a ball and went to sleep, she was snoring through the homily.

Easter morning was peaceful and lovely, we had brunch just us, then went to Dave’s aunt’s Easter shindiggity in the afternoon…a grand time was had by all.

There really is no suitable segue…but in 48 hours we’ll be waiting for scan results.

I just feel sort of empty about it…the YIKES catches me unawares here and there throughout the day (and very much at night), but I don’t feel manic about it. Maybe that’s just because the kids are home and there is Easter grass EVERYWHERE in my house and it’s sunny and cold and I just can’t fathom going back, starting over, beginning again…

I am cautiously optimistic (dare I say it?...no, I won’t)…well, let’s just say that the optic tumors, while still enhancing (lighting up on the scan like a fourth of July show) have been sleepy a while, and with NF at a certain point they should just sleep permanently. The cerebellar mass…not so much. It’s a persistent question mark. And the brainstem stuff…is it part of the reach of the optic tumors? Is it something separate? I loathe not knowing. Not knowing makes me insane. I like knowing, even if the knowing is bad, then I can have a plan…even if that plan is just to run in circles, hands waving over my head, screaming “Run Away! Run Away!”. At least it’s a plan.

And with the kids home, I haven’t been able to get to Ikea…I really need to assemble something. I assembled a thing of stuffed shells today (a batch for a friend, a batch for us)…of course I dumped our batch in the sink by accident…not drained, dumped, the pot flipped and woohoo! Pasta everywhere! Thank God the giveaway batch was safely done. I did vacuum the Easter grass, and I have picked up sticks from our yard…with all the windy weather we’ve had, there are piles of little sticks everywhere.

Did you know that seldom used muscles can get frighteningly sore from picking up sticks?? Maybe I should lay off the Cadbury eggs and go exercise! ; )

G and I did walk yesterday (aka pulled veritable teeth, used the stopwatch as a motivator—thanks, Diane!, begged and pleaded and cheered and ranted and finally got her through nearly a mile, just up & down our street). We should again today. She wanted to go at 8:30 this morning to get it over with. I hadn’t found coffee yet, no way walking was happening!

So we wait, another day to get through, a day I wish wouldn’t stop…I wish it wouldn’t be Thursday, we have to leave our house by 4:45 at the latest (Cadbury break here, ugh ugh ugh), Dave & I have different opinions about that…he is fine driving, then happily falls asleep in the middle of the oncology playroom. I am not so cool with sleeping in clinic, so I struggle to stay awake in the car and in the MRI waiting room, then doze in between appointments in the family resource center.

I’m so afraid I’ll forget to call clinic tomorrow, or they will forget to send our orders for labs down to MRI…need another egg break.

But it is what it is. We are used to this, the registration lady who called knew our name (a REALLY clear sign you’ve been too much at the hospital, when they recognize you over the phone without seeing you), we know the drill. The just in case bag will be packed, G was picking out CDs today to bring along, I will try to not finish this bag of mini-eggs before Thursday…it is what it is.

I am so very crabby today.

G wants me to go see her pile of sticks (ok, I am making her help now! Yesterday we pulled little landscape rocks out of the lawn & returned them to their rightful border…it looks much better, but to type it does sound psycho!)…I better run. She was “helping” me before with the pasta, she was reading poetry out of Andrew’s book for school.

“Hey, here’s a nice one!” she bellowed, “Shall I compare Three to a summer’s day?”…ack! I had to stop her, 3 is nothing like a summer’s day…but it was kind of funny.

Andrew the other day asked me about the tumor messing with G’s hypothermos. We did joke a bit about how that’s probably the temperature control of the brain…but I did tell him it’s the hypothalamus, not a hyper or hypo thermos!

I should explain, too, the picture of Andrew watching tv is right before Easter Mass…did not want to miss a second of NCAA basketball action, hat on to squish hair into place…that’s Andrew fancy!

Ok, now I’m rambling more than usual…thanks all, for praying for us this week. I hate this week. I have thought about going to an NF symposium in Philly on Sunday, but I don’t dare schedule something for 3 days after a scan. You’d think I’d be better at walking this tightrope now, but I am singularly unbalanced as always.

Please pray especially for our friends, Gabbie, Drew, Nora, Katsie, Carly (I think scanning, too?)…so many….and for little Christian’s family…

We need a cure.
Peace,
Kristin

I’ll try to update on Thursday night.

Friday, March 21, 2008 3:24 PM CDT

new pictures...not the greatest, my camera & camcorder (which takes pictures) are conspiring against me in every way...ugh.

please pray for Christian's family, a little guy who earned his wings yesterday...sigh.
peace,
k

Hi, all…

I just want to wish you all a blest & happy Easter. I am trying not to eat my desk (and I’m not good like Dave, I did have an apple and some coffee today—for Catholics it’s one of the 2 days a year we have to fast, which simply means we’re supposed to stick to one small meal, you’d think I’d been left to wander in the Sahara for a month, I am such a wimp)…he took the kids to church and I am just being quiet here.

The week has been V-E-R-Y long. I am up to about 8 phone calls trying to find someone for G to talk to…Very short version: the first person ran away screaming when I started with WHY G needs someone to talk to (ok, not literally, but she said she couldn’t help us, I realized almost as soon as we started talking that we would not be a good match)…then I called the Valerie Fund, a pediatric cancer foundation in NJ…super nice people, they directed me to Cancer Care (a free support service)…and that super nice person said she couldn’t really help us, but she WILL try to find someone that could be a better fit. She talked to me for quite a while this morning, I hope she can help direct me. I am beginning to get dizzy from so much running in circles.

But I need to find something for G, someone who can help her with strategies to make up for the “off” switch that is squashed in her head….and the ocd food stuff that accompanies that squashed switch. And the anxiety…

The joys of a brain tumor are without number.

That said, we did go to the Porsche thing the other night…not sure why exactly we were there, but the cars were cool and the sushi was delicious. Let’s just say I don’t buy a lot of sushi here, my girls start panicking when I mention that I might maybe someday consider buying some fish for dinner. Anyway, I think CTF thought we’d actually have to say or do something, we just ate gourmet munchies and I sort of hovered over my children who were enthusiastically trying out all of the $90,000 cars. Yikes. Rosie wanted to play house in a Porsche SUV, Andrew just wanted to “try out” the new Spyder…while eating donuts and cookies…yikes!

We did opt, even in the pouring rain, to avoid the valet parking…somehow our 2000 Dodge Caravan full of crumbs, toys, and random sports equipment seemed a tad out of place! : )

Genna and Rosie decided eventually to man the CTF table that had been set up, they gave wristbands to anyone who happened to glance at them.

I’m not sure what will come of all this, I’m a bit confused by what our role is supposed to be.

Anyway, yesterday started the Easter triduum, and we started our day with morning prayer at our church…it’s about 10 minutes long, and then one of the parish ladies pulls out this fabulous crumb cake…I look forward to that cake, er, prayer service, all year! ; ) . We ate a special dinner with my parents and then I went off to sing with the choir again at Mass…this time I didn’t totally botch anything in a hysteria inducing way, so that was good. The Holy Thursday service is so beautiful, I had stopped going for many years…but really, it’s a very moving experience.

At the end of Mass the altar is stripped bare, everything is dark in the church, and very quiet…the only light was the flickering of the candles in the Marian shrine in the back of the church. Warm and beautiful, like she was watching in love over the hardest thing ever…

You know, I never “got” Mary until G got sick. I’m sorry, I know this is like a Catholic fest, it just kind of hit me last night…here was a lady who knew what it was to watch her beloved child suffer and she couldn’t do anything, she couldn’t fix it…but she was there for him no matter what…I know so many moms like that. You all know who you are…and you were all in my heart last night.

I went back for night prayer at 11 and helped with music, it was so quiet and beautiful…when I came home and tucked my sleeping girls in, I was singularly struck by how lucky we’ve been…how we live with brain tumor right now, but not IN brain tumor…G lay there sleeping, and I could feel that panic rising…she looks so peaceful, God help us you’d never know what’s in her head…

And I visit other pages…and one angel page, there are so many similarities in our stories, so many odd things that happened with this little guy that have happened to Genna. I know we’re not the same, I know, but it still takes my breath away, this little guy from our hospital and all our NF friends and everyone…

We scan in less than a week.

I try not to think about it, I try not to consider the what-ifs…but who am I kidding? They are always there, always, always there. They just wait to come out until everyone is sleeping…

Of course G’s been having a rough time, this always happens right before a scan, odd little things, behavioral stuff, even some school stuff after a long while of things going well at school. And now the MRI folks changed our arrival time to 6:30 a.m. … apparently registration makes people late, so now we have to be there 30 minutes earlier…

We live 81 miles from our hospital. And the kids all have stuff the night before…

Ugh.

So, long story long (as always, sigh), have a wonderful Easter with your family and friends, and if you don’t celebrate Easter have an awesome weekend just because! : ) Andrew & I made a top secret trip to Flemington to get something tasty for Mr. Picky, and I am starting the jigglers and all for Sunday. Now I have to go punch down my bagel dough…

Ok, how many times can I mention food in one post!?

Thanks, all, for all your support…just please pray for us, and our NF buddies especially right now, Drew, Gabbie, Nora, Katsie…they are so much in my heart.

Peace,
Kristin who apparently also has some food issues! : )

p.s. I think Genna is torn between David Archuleta & Jason With the Dreads Like Aunt Cath on American Idol...she was sad about Amanda (we missed the results show,which is probably good), can someone not vote for Kristy? Please! But anyway, thanks for commiserating with her! I think she was more upset for her friend Devon!

Sunday, March 16, 2008 1:34 PM CDT

Hi, all.

I’m trying to get things in order here…spent a while calling medical here and there last week…I think we figured out G’s labs for scan day. I just have to a)beg MRI to draw the aforementioned labs so G doesn’t have to get poked twice and b) make sure the tubes & orders get down to MRI either by me or by someone from oncology the day before. Our scan time is so early, we actually have to be downstairs before anyone is in clinic…I’m not sure if we should just stay over, I’m still working on that. But at least I think we can minimize the pokeage.

The person I called for G to talk to hasn’t returned my call. It’s been a rough week or two, I will call again tomorrow…

Nothing earth shattering, just the chipping away at maternal peacefulness that happens when you realize the far reaching, pervasive, and impossible to shake effects of brain tumor. Again, I wish the hypothalamus would get its rally cap on and get itself together…but that is a deluge under the bridge, I really should not waste energy on that kind of wishing. But these are the things that make a somewhat manic mother insane.

Rosie is dancing to Dog Train upstairs. She and cousin Maura have taken to doing Coffeehouses in our basement playroom…singing C is for Cookie, God Bless My Underwear, Stars in the Sky, and Movin’ Right Along…I may have to recruit Maura for next year! This at least is worth a smile.

And a huge woohoo…Andrew had his semi-final basketball game yesterday, and I finally got to go…in the third quarter his team was down by twenty points, it was like they were asleep. I’m not sure what happened…but something clicked, and on three consecutive possessions Andrew shot 3 pointers…and then made two foul shots (11 points gained!)…the team came back to WIN!! For our LA friends, there was an awful lot of cheering “Go, LSU!”…A’s team. An hour later they had the championship game…and won by 1 point in the final seconds!! It was unbelievably exciting, we still can’t believe the team actually won! I have to say, too, that Andrew’s coaches were two of the nicest young men in the world, juniors in high school…respectful, organized, enthusiastic, and encouraging…as they gave each kid a trophy they honored them individually…

Connie...Andrew wore the LSU shirt you gave him under his jersey, maybe that brought him some extra luck or skill! : )

Andrew was apparently someone who didn’t say a word at the first practices (yeah, got THAT from Mom) then revealed himself to be “one of the loudest people I’ve ever met!” (coach quote) as he rallied the team along with Eric (who was awesome, his dad actually played in the NBA at some point…let’s just say Eric has some mad skills). Andrew made big plays where it mattered, and always played hard. I’m so proud of him for the effort…even if they had lost, I would be proud after that huge comeback, they never gave up.

I still can’t fathom how I have a kid who is good at sports. Weird.

Genna found a grandma to chat with at the game, they had a lovely time. Grandma was trying to have G keep track of the game for her…not sure how that worked out!

Andrew was happy, too, because his friend Mike stayed at our house for a few days, so he was there, and Uncle Stephen came, and Joe from across the street (Joe has no little brother, Andrew has no big brother, the two are good friends…and this year Joe is away at college, so it was great to have him come yesterday!)…between Stephen, Joe, and Dave, the Camiolo contingent was very loud (I, of course, was demure and reserved…ahem). Having support in the crowd made the day extra special for Andrew.

Andrew DID successfully finish the history projects...yikes. Then he had to pick a poem for the poetry recital. Strangely, his teacher (a good friend) didn't like the stuff I picked...I tend towards modern poetry, which, in Dave's words, "Doesn't sound like a poem!"...and generally involves crazy words or lots of yikes. I think he's doing something by Rudyard Kipling (and not Yeats' "An Irish Airman Foresees His Death" or the other perky things I enjoy ; ) !)

Today I got to sing with the choir at church, which was fun. Of course I may now have ruined a song for Marta (the tremble tremble tremble line just went all funny, and once you start laughing in church it’s all over), but it was really special to be able to sing on such a special day. A few of the songs were really really hard…not note wise, word wise. Some of the old hymns just lay it on the line, if you know what I mean…no mincing words about how hard death is, how cruel…and today’s Mass was offered for Sandra…

Ok, so I ended up saying “palmtreespalmtreespalmtreespalmtrees” in my head during the tough spots, and that helped. Our church gets a couple of palm trees in the middle of the congregation on Palm Sunday, I love it, even if it does make me want to sing “this is my island, in the sun!” (yes, a Muppet reference). Anyway, focusing on palm trees is good for getting past brutal song lyrics.

And I made a note about one of the soloists…we may be calling him before next year’s Coffeehouse! Wonderful job…

This week is busy and not…I’m trying to find some clothing for my girls for Easter, I got them dresses at Target of all places, but white butterflies all over a dress may not be a great idea for Princess Pigpen, aka Rosie. Before the Coffeehouse even started she was all smoodgey! But at least I found something…shopping for clothing is no fun.

And I’m through almost all of my Cadbury mini-eggs, which is very not good.

I better go do something. Dave is off visiting Grandpa in the hospital (sigh) and Andrew is out with a new friend from basketball. Genna is doing homework, Rosie is dancing the aforementioned Dog Train Performance Fest…it’s gray, and blah, and Holy Week always hurts my heart. I know, it has a happy ending, but the shadow is very dark.

Enough. I should go cross stitch…I started a Love Quilt square the day of Rosie’s scan…so now it has fallen victim to the “bad scan day project which will be shunned forever”…but I committed to finish it, and I’ve hardly started.

Please pray for Grandpa in the hospital, and for our Wednesday foray into a new place with NF stuff (being a “face” for a company…I’m trying not to be a wimp, but I’m not Dave and Genna). Please please pray for Gabbie, Nora, Drew, Carly, Katsie…our NF friends who need extra prayers right now. I wish we could fix this.

If you stop by Gabbie’s page (www.caringbridge.org/visit/gabriellehughes) you can see the NF stores her mom set up on café press…cool t-shirts, mugs, magnets (love the magnets) etc. with pictures of NF kids (including the Cams crew). Ori is working on raising $ for a cure…

Oh, and if you are feeling the need to watch non-brain-straining tv, check out The Real Housewives of NYC…ok, I SO do not recommend this normally (really, people live this way? Really? Gowns and getting photographed are Important? For real? Why, exactly?)…but in one of the first few episodes, maybe the first, one of the “Real” housewives actually went to the CTF gala in NYC and donated cooking lessons as an auction item…she said neurofibromatosis right, they showed the CTF banner (yes, I think the same one we used at our coffeehouse!)…I saw it as a repeat on Friday, someone mentioned it on the CTF website. I just thought it was cool!

Ok, really enough, I need to help G with this homework, looking up words, even in a large print dictionary, is tough.

Peace,
K

Happy St. Patrick’s day tomorrow, we made sparkly green headbands & pins for the girls. Andrew will likely just wear his face tomorrow ! ; )

Tuesday, March 11, 2008 9:53 PM CDT

Hi, all…

Just wanted to say howdy…I hoped to say “hey, look at these pictures of the Coffeehouse”, but my laptop hates me. We are closer…but likely it will be next year by the time I figure things out.

Things are a little crazy as usual, I’m still digging through thank yous and trying to get things back together here. I missed Andrew’s basketball game Saturday because I was trying to detangle Rosie’s hair and get it into a bun for her dance recital. Apparently Andrew made a three point shot with a few seconds left in overtime to win the playoff game…I only dreamed of such glories when I was 12! Hooray for Andrew!

Rosie danced adorably, she was SO excited. Flat Levi came along, he seemed to enjoy the show. G had a sort of awful moment in public…I am kind of hating the hypothalamus right now. Really wish it would rise to the occasion and do some freaking something. I didn’t see it, Dave was with her, but it was a scene. Sigh.

I have to find a counselor person covered by our insurance…every time I try to access the website something gloms up. Yes, my desktop kind of hates me, too. Ugh.

My poor G.

Today I got her to go outside and play, and within about 5 minutes I heard screaming…figured it was playing (Rosie & cousin Maura are pretty dramatic)…heard another scream and ran (Momdar kicked in, that sense of “yikes”). G had fallen off the top of the swingset, knocked the wind out of herself, she was wailing that her back hurt…she needed to lie down. After a few minutes she was ok, nothing hurt if I pushed on it, I think she was just scared and bruised. She’ll likely be sore tomorrow. Ugh. That was the end of playing outside!

An hour later Rosie got stuck on top of the swingset, she is too short to climb like G but forgets this fact. Luckily cousin Maura ran in to get me, I turned off the risotto and ran to the back yard….

Ever read Tikki Tikki Tembo? I felt like that mom today.

But tonight Andrew finished his history project. We think he spent about 10 hours making his manuscript page, I really hope his teacher can see his effort. He worked very hard (after some hard discussions about no, you can’t switch your topic 48 hours before the project is due, and no, you can’t learn calligraphy in a day…and NO, you can’t chat on the phone or go outside to play!). Today he was a model of diligence. Seems like keeping up with grades and assignments has been more challenging of late…

And Genna was beaming as she sang with the choir on Sunday. That brings her so much joy…We actually hit Mass 2x this weekend, we went to the Basilica in Newark on Saturday night…so cool. We were very distracted by the sacristan whipping the incense thing around with great energy. I kept waiting for him to twirl it in a full circle and let it fly…my dad’s choir sounded great, the evening was pretty cool. And the bathroom was 3 floors up in the tower by the organ loft…St. Bede was one of the stained glass windows in there, which was a bit disconcerting. When Rosie said she had to go again, I told her she’d have to wait, maneuvering the twisting narrow staircase with Genna was a yikes.

In other news, it looks like we might be helping out CTF by being a family connected to a business that wants to help raise $ for NF…Dave thought it was a good idea when we were contacted, I’m scared to death. People who know me in real life know that I only like being in front of people when a) I’m teaching or b) I’m performing, generally something silly. Being in front of people as just me is a horror. I tried to get out of it as much as possible at this year’s Coffeehouse…and this would be smiliness with all folks I don’t know…I am trying to summon up some chutzpah, but I think I inadvertently gave chutzpah up for Lent.

But I’m not the NF person here. It’s up to the NF people here, and they are ok with it, so we’ll keep you posted on how that pans out.

I can only do this because I am so very tired of what NF does to people I love and care about, both in my own family and in my online support circles. NF is mean. It is relentless. It does not discriminate, it is random and variable and progressive. NF takes children, it takes adults, it takes time and strength and joy. I hate that it defines so much of our life now. I hate that my friends are suffering tonight because of NF.

But I do love the people I have met because of NF…this is the silver lining, I guess, on the monster storm cloud of woe that is NF.

So maybe I can pretend to not be a deer in headlights if it can help people (literally, it’s a automotive business). But it’s easier to bake a cookie or buy sneakers; these things I know I can do without looking like Queen Dorkalot. I’ll just have to hope my NF heroes can save the day for the world’s most timid mother.

Scan day is 15 days away.

When G has rough days—and we’ve had more than one this past week or so-- I get so scared.

Please pray for our NF friends in tough places right now…Nora, Gabbie, Drew especially…and Carly & Katsie, Meadow and Timmy…for so many kids. It is mind boggling, sometimes. Thank you for supporting our efforts for a cure. We are so grateful…we are just about at $8000 for the Coffeehouse, which is surely a few Petri dishes closer to a cure, right?

I think I may need to start using my sneakers…talk about a race being set before you. Ugh. Where's my Aleve?

Peace tonight—
Kristin

And Happy Birthday on Thursday to Megan…partner in crime and kitchen clean up production number star…happy day to you.

Friday, March 7, 2008 8:26 AM CST

Hi, all…

Well, we are back, and I am trying to dig through the piles o’ stuff that are still drifting around my house. Dave did a lot of cleanup, I just have to sort through Coffeehouse supplies, display boards, etc. I also have to send all the thank yous…most are written, I just need to mail things. I was hoping for a picture, I have been so thwarted.

I have tried to figure out how to get video up; unfortunately the software that came with my camcorder is no longer working, I can’t re-install it on either computer. I don’t know how to get video off the finalized DVD…I have a few pictures, but it was laborious to extract them. Sigh. Maybe eventually I can get something up, I need to find a techie friend.

Anyway, I think we have a lot of good ideas for next year’s Coffeehouse…and the feedback we’ve gotten has been generally really good, so I’m glad. Our total will likely be near $8000 by the time all is said and done, a few more donations arrived this week. We can NEVER thank everyone enough…

Sunday was so busy, and Monday we headed out to Great Wolf Lodge…not before I realized that yes, I am a moron when stressed. They never sent an e-mail confirmation to me…so I called Monday just to confirm (the reservation hit the credit card, so I wasn’t too worried)…and they told me they were all set for us to come on Tuesday…

Ok, YIKES! This is why I should not do anything the week after a bad scan. Nothing. Now you know why I hide in my house. Of course I made the reservation BECAUSE of Rosie’s scan, but still…How I screwed this up I will never know…but Dave was off from work, the kids were out of school…thank God the lady had mercy on me (and no, I didn’t mention any of the reasons I’m a moron)…and we were able to go Monday. But I was pretty shaken by my own absolute mental short circuit.

Once there, all was forgotten (well, by everyone else)…the kids had a really wonderful time. I need to start saving up now for next year. Genna actually went on the big waterslides a few times, with much convincing (with me or David, and once with Andrew)…she was much more energetic this year, she didn’t nap in the waterpark at all. Granted, she was still done first each time we went down…so she brought a book (and yes, some schoolwork) and did that on a beach chair when she got tired. She even played basketball in the pool! The food thing was a challenge, but we mostly got through ok.

Rosie was the happiest 42” tall child in the place, she had been waiting to be tall enough for the big slides pretty much since last year. She is a maniac on a water slide, she tried every one, at one point we went 4 times in a row (and then I couldn’t handle the stairs another time!...there were no lines for any ride). She was tall enough to walk along the Lazy River, she and Andrew loved the wave pool, and she raced David 10 times in a row on the littler body slides (she cheats…races to the faster slide, is half way down before her competition is even on the slide!).

Andrew loves everything. He also won the jackpot in one of the arcade games, which was a high point for him…and a note to me, never bring Andrew to Vegas.

Really, it was a great trip, 2 nights makes a huge difference in how fun it is, we could relax a bit in between swimming, we could make lunches back in the room….it was good to be together.

Wearing shorts for 3 days was fun, too!

And I saw the lifeguards getting tested on vigilance more than once, which was strangely reassuring since I always assume disaster will befall one of my kids when we go to these kinds of places…but no, the lifeguards were really on top of things (it is a bit unnerving to watch the manager surreptitiously put a child sized dummy into the pool face down and then walk away…timing how long it takes for the lifeguard to notice…about 10 seconds, impressive considering where the dummy was & where the lifeguard was. Seeing it come down a slide was scarier, that time I didn’t know it was the dummy. Still, it’s good to see them always practicing).

We had a bit of a yikes coming home, we walked in the door and every piece of schoolwork G missed was in a giant bag by our kitchen table…we thought we had the important stuff covered…G flipped out, crying and hysterical over all the work…I flipped out about how mean it was to send this home…ok, it was a yikesfest. Later we all settled down, and I talked to G’s teacher yesterday, she just wanted us to know what G had missed, but didn’t mean for G to see it first…so now we have a system for any time in the future that G misses school. I am very, very grateful for this teacher.

I did realize yesterday at some odd moment that G scans in 3 weeks. Dang. The world is too much with us….I can only forget for so long.

Even at the Lodge, at one point G was in a pool or lying down or something…and I could see her scar on her head. It’s totally covered by her hair normally, but that long line from ear to hairline on her forehead does show sometimes if her hair is wet…a reminder of where we’ve been.

Sigh.

But we’re in a good place now, a stable place now. Today. Today is good.

And the weekend is again crazy, with Rosie’s dance recital (her teacher is having twins, hence the early recital), G singing in choir, Andrew’s basketball playoff game…mailing all those thank yous….and still re-organizing all the bins and things I have drifting around the house from last weekend. And we have Flat Levi here, he arrived from a friend in Virginia yesterday…we need to show him some Jersey and send him back on Monday! : )

Less than 3 weeks until scan day. I don’t even know how we got here so fast…having 2 kids scanning on different schedules is going to push the limits of science to keep me brunette. I wonder if Ikea has my bookshelf yet?

The scan is super early (I think 8?), which means G can’t get poked in clinic, which isn’t great…but the alternative was an afternoon scan, G fasting until afternoon is a nightmare. I have to call clinic and see how we get the labs they need, will G have to get poked twice? This isn’t going to be good, but I didn’t figure it out until after I set up the appointments. Ugh.

I often feel like one of those Lotto machines, with all the little numbered balls bouncing around in my head.

Anyway, I better run and keep digging through things. Andrew has a huge history project due next week, and we kind of only just got really started. Thank God I got him to change his mind about building a castle (I’m still getting over the pyramid! And that’s just a big triangle!)…he’s going to do an illuminated manuscript page instead, which is kind of an obsession of mine, so I have all the books he’ll need. His stained glass window is leaded, it just needs colors now (thank God for the craft store!). We need to finish this stuff this weekend, too.

Oh, one major crazy happy note after all this rambliness. You may have seen on the news this week (I missed it) about a shooting at a Wendy’s in Florida…a man went in during the lunch rush and opened fire, a horrible thing…well, my brother works right nearby, he eats lunch at that Wendy’s about 3 times a week, and that day decided to get a sub instead. I can’t even begin to tell you…somebody’s looking out for him, holy cow. Thank God for subs (heroes, hoagies, grinders, call them what you will). In Jersey it’s a sub. Either way…thank God.

Please pray for Drew, scanning today, and for our friend Gabbie, in need of prayers, and Nora, Hadley, Katsie, Carly & Carly…and you know, so many, many others. Especially a little guy named Christian right now…

This morning, as I was rushing Rosie, my Glacier-paced Yogurt covered Kindergartener to wash up, go to the bathroom, etc., we heard her singing from the bathroom an ear splitting operatic version (monster vibrato) of God Bless My Underwear…

Peace,
Kristin

Sunday, March 2, 2008 10:20 AM CST

Hi, all…

Thank you thank you thank you thank you thank you thank you thank you to EVERYONE who helped in ways big & small, far & near to make our Coffeehouse a rousing success.

We think we had about 200 people there...maybe more...wow!

I am so tired…thankfully we had a fair amount of leftover coffee which I am shamelessly reheating and drinking quite literally by the gallon! And a few cookies, hello breakfast! Both Dave & I realized neither of us ate a single cookie at the Coffeehouse, which is a kind of sad tale! ; )

Anyway, I think things went really well…the first half ran longer than I wanted, which gave me some agita, but all in all I think everyone had a really good time. Our only glitches were a) the snow Friday night freaked me out a bit (“NO Storm Watch 7! No CBS Storm tracker!)…thank God weather people are ALWAYS wrong, we had maybe an inch and then wet roads, no biggie; and b) Saturday morning my friend Suzanne, aka holder of the keys to the Church and contact for the guy with the sound equipment was sick in bed…she roused herself from her ugh, and helped us out immensely. Thank God for Advil, and for a very good friend.

I feel a bit like I didn’t thank everyone enough…Fr. Brian & St.Mary’s for letting us use the Church, all the CTF folks for helping…one of our biggest helper crews was Andrew & his friends. They manned the entrance table, carried raffle baskets (the only slowdown being when Andrew’s good friend Mike won the Devils tickets…distraction!), moved tables & chairs…they were a HUGE help. This is the first year Andrew really got into it, and I’m so proud of him.

Rosie’s rousing C is for Cookie started us off…many friends sang all sorts of things, one or two people I only just met last night performed, my dad actually sang in front of everyone (the best part of which was Nick O’Sullivan, who accompanied my brother in law & my sister later, getting the musical joke after about the first measure…watching him laugh his head off was very entertaining!), my brother in law Mark sang so beautifully, as always!...we had the Broadway stuff I love (seriously, Christina Ryan is coming to CHOP next time to sing Don’t Rain on My Parade BEFORE we get scan results) and some songs that have meant a lot to us (Praise You In this Storm…sung by Dan Szurick…whose mom, as she was dying from cancer, kept sending cards to Genna to say she was praying for G…we miss you, Denise), and then just some fun stuff (thanks, Marvelous Minogue family! Thanks Meg, and ballerina-goddaughter Phoebe!).

For Sandra we sang 2 songs: G did God Bless My Underwear, and then the kids sang Stars in the Sky, which is sung at the end of oncology camp. Sandra loved this song, she loved camp, she loved laughing…so we figured happy was the way to go.

Special thanks to Emily, Anne, Elizabeth (my sisters) and Rachel Gillett for singing Evening Prayer…this year I didn’t even try to intro it, I made Emily do it.

So THANKS to the Minogues, Olivia Kenwell, Brian Flanagan, Dan Szurick, Alicia & Laura Greey, Sara McCabe (Andrew even said your song was “awesome”), Dad, Meg & Mark (and Phoebe ballerina, and Damien “thank you for coming!”) & Nick O’ Sullivan, Suzanne Gallic, the kids…Rachel, Sebastian, Katrina, Noelle, Catherine, Francis Khoury, Christina Ryan, Tim even though you ended up being too sick to sing, Jon Touhill, Rachel Gillett, Anne, Em, & Elizabeth. You all sounded so awesome…without you the night would have been…well, really quiet.

and (I had to come back into the page, I forgot to say this) thanks to Tim, to Dennis Ryan & Greg Allen Jr. for running sound...without you, it also would have been quiet! (and to Chris for letting us use the equipment, and Peter D'Angelo for your keyboard!).

The raffles were so much fun, too…and I have to say, I am so happy that Susan, Timmy’s mom won the Sandra Boynton books…this makes me very, very glad. Genna actually won one of the beautiful plants…thanks, Miss Connie, for the raffle money! Rosie’s “boyfriend” Dan Minogue won a door prize, which was kind of funny (Rosie pulled his name…she can’t read it yet). Dan is in 8th grade…and was a huge help along with Ben Neri & Mike Quense. Thanks too to Nick Gillett for selling tickets!

Ok, it was really fun.

And just to keep it real, my girls did start squabbling over who got to pull a door prize name out of the bucket, while on stage…ah, the Theater of the Real…yes, we are utterly normal here, in the weird way we are normal.

Drum Roll, please: last night we raised bout $2200!!!…and Dave’s boss (who came! Thanks, Jason…nothing like meeting you when I’m at my most manic, but I’m so glad you & the family came!) said that DRS Technologies is going to donate $2500 to the Coffeehouse…and with the $3000 from Sandra Boynton’s foundation…that’s over $7500 towards a cure.

Wow.

I hope, too, that folks learned a little about NF. Mostly that it effects real families, real people, real kids. It stinks, and we need a cure…

And I didn’t get all weepy (only 1 speck of ferklempt at the beginning, what was that? Sigh), and other folks helped with the intros…phew!

Thank you all for praying for this event…for your generosity to us. Thanks especially to Marta Blumberg, Raffle Donation Queen, and to Susan Minogue for accompanying so many people on such short notice, and to Suzanne Gallic for all the Church details, production details, and for just not blocking my phone number! : )

I am so tired. Last night I couldn’t sleep, I kept worrying about the clean up (it looks great, we need it to be perfect for the preschool that happens there), kept dreaming we had squished things…(we didn’t). Rosie was VERY concerned that she was up and it was almost midnight!

Today we have Dave’s mom’s birthday…and tomorrow we are taking the kids and going to Great Wolf Lodge…we planned this after Rosie’s scan, life is too short, we need family time that does NOT involve me using a glue stick or wrestling with the printer or wrapping baskets…! I’m glad we put it for this week, we need it now!

I am so glad the Coffeehouse worked. I am always surprised, truly surprised that it does…we are blessed to have, as a new NF mom said to me last night, “the biggest support system in the world”.

I probably forgot to thank about 27 people…but know that we love you all, and we are so grateful.

$7700 closer to a cure…order some more Petri dishes, guys, get cracking!

Peace,
Kristin, Dave, Andrew, Genna, & Rosie Camiolo

p.s. if anyone has pictures, could you let me know? I can give you a cd…I video-d the whole thing pretty much, but my camera decided to clunk. I may try to put some up on YouTube, for those friends who live super far away to see my kids in action!

I so have to clean up the pit that is my office…yeeks…

Friday, February 29, 2008 8:49 AM CST

Howdy, all—

I promised something perkier after the mournful existential wanderings of the other day, so here are some nice things before I start literally running in circles here.

1. It is sunny today. Blue sky, super cold but icy blue. This is helpful.
2. I DID find jeans…no, really, that’s a bit like the parting of the Red Sea, it may happen once but you don’t really expect it will happen again. So woohoo.
3. We have a lot of cookies here. Chocolate Chip, Sugar Cookies, Rugelach, Lime White Chip, toffee bars, pecan tassies, lemon bars, macaroons, chocolate truffle cookies, little raspberry thumbprint spritz things (I hate that spritz maker, it is my baking nemesis), and I am going to make some rice krispy treats today. At least the sugar is in good order.
4. I somehow fixed my little cookie scooper thingy. Again, woohoo.
5. People keep giving us really wonderful raffle stuff…the Benaduce family of Great Swamp Greenhouse fame (my personal heaven on earth, that place!) donated 4 gorgeous plants, little Max’s grandpa (my mother in law watches Max during the day) donated these sparkly vintage looking music boxes he makes (so pretty), Marta keeps showing up with gift certificates and woohoos…we have over 20 really good prizes. I can’t wait for people to win them.
6. Rosie’s face healed nicely…I forgot to mention the other day that she took a sled to the face on Sunday, she looked a bit like a prize fighter who has seen better days…yikes! My poor baby…but her nose & eye are pretty much 100% now.
7. In other Rosie news, she had NO cavities at the dentist. See the Jeans point above.
8. Andrew finished two of his four projects that are due soon, phew.
9. Genna is loving swimming lessons.
10. ok, number 10…well, I guess I am just very thankful for all the people who are helping us pull details together for tomorrow. I’m still not 100% sure who all is doing what, but I am hopeful that it will be a really fun night.

So there’s 10 perky things. I promise next Leap Year I’ll do the same ; ) !

I really do have to run run run…but please, if you can, pray for our efforts tomorrow night. It’s really not about us…well, before G was sick we were quiet about her NF for a variety of reasons; once she got sick, we realized we really aren’t alone, there are so many families battling this beast in all its varied forms…Sandra, Nora, Gabbie, Katsie, Drew & Joey, Sarah, Kyle, Meadow, Carly & Carly, Timmy, Emma, Preston, Ryan, CJ, Mariah, so many, many others. Knowing they all are fighting too provides the impetus for us to drag ourselves out of the whys and boohoos (with all our friends tugging) and try to make some sense of it all.

Uh-oh, I feel NOT perky coming on…run away, run away!

No, I will stop. But please, if you can, pray that the inevitable last minute glitches don’t make me jump out the window.

And please give a happy birthday to Angel Timmy on this most special Leap Year birthday…www.caringbridge.org/nj/timmyp. This is a tough week for our angel family friends, and their pain resonates deeply with us.

Thanks, all…and I hope some folks can come tomorrow, not that I know but I suspect the cookies might be pretty tasty (hey, how’d these crumbs get all over the keyboard…those children…ahem).

Peace,
Kristin

p.s. please pray for our buddy Hadley, who after nearly a year of stable has new tumor yikes…she and Genna used to always scan around the same time, and oddly with similar results (even the bad ones)…please pray for Angela & Brandon as they figure out what to do. (www.caringbridge.org/ca/hadleyfox)

LAST CALL FOR THE COFFEEHOUSE FOR A CURE
TOMORROW, MARCH 1, 2008
7 PM ST. MARY’S STONY HILL WATCHUNG, NJ

SO MUCH FUN WILL BE HAD BY ALL…
Suggested donation $5 person/$10 family, but really you can just come! : )
And if you bring a non-perishable food item for the Emmanuel Cancer Foundation (Marta Blumberg helps them out regularly), we will give you 2 free raffle tickets!

Tuesday, February 26, 2008 9:47 AM CST

Howdy, all.

I’m not sure why it happens, the inevitable let down after a CHOP visit. I think the anxiety just builds to such a pitch before each trip…and I have to work so hard to NOT act like a raving lunatic, that when we come home I have to process for a few days all the things that were said, all the questions I think of after I process the new information.

I wonder why.

Thursday wasn’t just a CHOP visit, it was also the 2 year anniversary of Genna’s brain surgery to figure out what the deal was with her very atypical tumors. Unique is good in regular life, not so much with brain tumor life. Coming home from CHOP on Thursday, and remembering where we had been 2 years ago that day…in the PICU, hoping G’s good eye wouldn’t swell shut (this bothered me immensely, the thought of her good eye closing after surgery and Genna being terrified by blindness), being amazed that the incision wasn’t as horrific as we thought. Remembering Dr. Storm matter of factly telling us that it could just be a weird NF thing, and not the horrors everyone expected.

Somehow, in the couple of days after our visit, I have been remembering all this…and there’s this ache that comes with this remembering, a dull throbbing in my memory…

And then I wonder why.

Why does my daughter get to survive, when so many don’t?

Why do we get good news when we know so many people suffering?

Don’t get me wrong…I love good news, I want good news, if I could turn good news into a flavor of coffee I’d drink it by the gallon. Hazelnut, good news would probably be hazelnut. With extra cream.

It’s just scary, this gift. Back in 2006, a priest friend of ours spoke of a strong sense he had that G would be healed…normally to this I say uncharitable things like “don’t mess with my head unless you have a certified letter from God saying that kind of thing”…but this man I respect deeply, he doesn’t lightly say things like that, he is in fact one of the most intelligent, crazy smart people I know (the book he wrote has footnotes that equal the text in length, holy cow this man is smart). I did harass him about God’s will and stuff before he said this to me, I was too desperate to be glib after he said it. Sometimes even I know that it’s time to shut up.

I just don’t understand what healed means, or I never understood that healing could be this precarious balance of stable tumor, eyes that aren’t good but aren’t worse, constant worry over the damage done by treatment and disease…but I get to have my child, the little girl who smiles her giant smile in her sleep every time I tuck her in at night. The little girl who very cheerfully told everyone at CHOP that we wanted to put “NF Stinks!” on our M&Ms, but we decided to put “Cure NF!” instead…(if only “stinks” was the word I was thinking of! : ) ).

But really, since that day at church, aside from G’s allergic reaction to procarbazine, she has only improved…come off chemo, stayed stable, caught up at school…last week she actually played floor hockey in gym class. Genna played a game with a ball and a stick that required running!!! Insanity!

Why did we get this gift?

What are we to do with it?

I’ve spent a lot of time the last few days looking at Caringbridge pages late into the night…I’m not sleeping very well, it happens before an event. There are so many families fighting these lonely battles. Honestly, I don’t know how people survived this stuff before the internet.

This whole journey is kind of like being stuck in the middle of an hourglass…above us is our regular life, school and sports and sandwiches, busy schedules and where’d I put my gym shirt, Mom? But below, below is this world we only sort of knew existed. This world of suffering, of kids being brave beyond their years and yes, hollering when they don’t want to be brave…parents fighting a battle that no handy dandy pre-natal book tells them how to fight. There isn’t a What To Expect if Your Kid Gets A Life Threatening Illness handbook…

And to see Rosie trying to follow G’s directions, hold the pizza box! Touch my finger touch your nose! Chicken wings! Don’t let me push them down! (neurological exam)…it seemed so natural, so normal…

And that is terrifying.

Rosie seemed genuinely happy to be part of the action finally…yikes. G proudly decided to wear her Giants shirt to clinic on Thursday, who knew that Dr. Liu was a Giants fan? She is leading the way for Rosie, being the big sister I wasn’t always sure Rosie would get to have…

I feel like I see everything through a veil sometimes, the why of it all. I know these things will likely never become clear, but I just don’t want to blow the gift we received. We may not always get to keep it, I know that. Until then, I’m trying to learn more…it’s so hard, I’m so not scientific, the vocabulary is just daunting. Is there a book called Genetics for Dummies? I should buy it (what the heck is a cytokine receptor?). I did learn again that G falls into the “rare cases” of NF severity. Ugh. But I need to learn more. Somehow the fears and struggles of everyday are far more bearable if we are pro-active. In many ways the worst parts of G’s illness were the times we couldn’t DO anything, we just sat and waited and hoped and despaired…

Wednesday night we hoped to get the girls to bed early, we knew we had to leave our house by 6:45 to get to Philly by 9:30 (a.m. traffic is awful). But there was a full lunar eclipse…thank God Peg called (Dave’s mom) to remind us, we got the girls up and showed them…Andrew was still up…Genna was very, very worried that the moon wouldn’t come back, she kept trying to understand what was happening. Rosie was just excited…so excited that after we tucked them back into bed she kept checking the progress about every 5 minutes and running back downstairs to say, “MOMMY! THE MOON IS ALMOST GONE!!!” . At 10 we gave up trying to encourage sleep & took them out on the back deck to stare at the moon, totally shrouded by the shadow of the Earth…it was so beautiful.

Even in the shadow, there is beauty.

Today we remember our buddy Sandra, on her birthday. Please visit www.caringbridge.org/visit/sandy -- we are going to have a little cake and some fruit and maybe watch SpongeBob (only for you, Sandra!)…and remember this spunky, happy, Never Give Up kid who taught me so much about always moving forward. The Why doesn’t matter so much while there are still people to help…

And this week we also remember angel Timmy on his Leap Year birthday…www.caringbridge.org/nj/timmyp . Sweet Timmy…

I’m sorry, I know I should be perkier. I just see all these faces on the display boards I’m making (good Lord I’m bad at this kind of project)…all these children battling. The details are a bit overwhelming right now, which I expected…I know Saturday will be great, I hope we will raise a lot of money for CTF. It helps MY brain somehow, to try and do something…even our little sugar-themed something.

We HAVE been given such a gift…even when I have to tell my gift to stop talking for a few minutes, or to stay away from the fridge…I love her so much. All of my kids, I love them all so much…I hope we can show them how to fight, how to keep moving…

Anyway, thanks if you made it this far through my conflicted epic. I promise next time I’ll be all Cookies! Music! Glue Sticks! Jeans that Fit! (well, maybe not anything THAT ridiculously optimistic).

And we hope to see anyone and everyone on Saturday…
Peace,
Kristin

COFFEEHOUSE FOR A CURE ALREADY! FOR NF (to benefit CTF)
Saturday, March 1, 2008
7 pm
St. Mary’s Stony Hill Watchung, NJ
Cookies! Music! Raffles galore! (more stuff by the day, thank you Marta!!)
Bring a non-perishable food item for the Emmanuel Cancer Foundation and we’ll give you 2 free raffle tickets!

Thursday, February 21, 2008 6:32 PM CST

FRIDAY:
hey, we got snow, for real honest snow...about 5-6 inches and still pouring down...I took some pictures...I do have one or two of Andrew,but he ran off to go sledding with his cousins, I'll have to get a better one of him later.

so many thoughts still about yesterday, but they will have to wait. I swear, I'm like a slow cooker when it comes to thinking out hospital visits.

peace,
k

Hi, all…

Due to my new tradition of getting a monster headache verging on migraine every time I enter CHOP, I hope to not blather on forever…

Eyes: Genna: STABLE! (testing is still awful to watch, but apparently she’s stable).
Eyes: Rosie: Perfect!

Ears: Rosie: PERFECT!

Neuro-oncology check: hilarious, and generally really good.

Yes, this is Genna Camiolo’s page, yes, that was all good news…

AND we actually saw friends today! In all the time we spent at CHOP we hardly ever saw the same people 2x and we rarely saw our online bt support group friends…today we just missed Aimee & Brianna (ack!), we saw Dorian & Mikayla, Banu & Devon (so awesome to meet Devon!), and we went to visit Baby Andrew ( a highlight of the day…he is such a smiley pile of cuteness, I thought he’d be shy, but no, he charmed our socks off…Genna & Rosie were completely smitten, and really, this adorable little guy is such an answer to so many prayers). We didn’t know we’d see anyone there…! It was so good to see friends, and to see Dr. B, and our nurse friends…

I do miss everyone.

And they painted clinic, it’s all soft colors and crispiness now. Very nice, very odd for us.

It was good to have Dave there…Genna NEVER would have been able to be quiet enough for Rosie’s ear testing. Never. In a million bazillion years…

Dr. B did G & R’s exam at the same time, which was so funny…they were giggling, G was giving directions as to which piece was next…at “touch my finger/touch your nose” Rosie grabbed Dr. B’s finger and pressed it to her (R’s) little button nose…so funny.

G gave Dr. B a little bag of our Cure NF M&Ms, aka chocolate shopping therapy post Rosie’s scan.

G marched off (literally) to continue obsessing about her homework (she schlepped it all there with her), and we had a lengthy discussion about how things would be If I Ruled The World…er, about G’s needs & where we go from here with Rosie.

As it stands now, I am going to look into some stuff to help G. Her weight was a pound or two less, which is a huge achievement…and we think there might be some helpful options for her, even if there isn’t a magic Wand o’ Wisdom on this issue. (Although I learned the term “hypothalamic insult” today…and this is amusing to me the more I think about it…may open up a whole new genre of brain humor…think about it, an insulted hypothalamus is a funny image.

Ok, my headache meds are kicking in…! : )

Anyway, we will scan again for G in March, and in July for Rosie…since eyes & ears are perfect, waiting is an acceptable thing.

I must go collapse, but thank you all for praying for us today…it is such a load off my mind, eye check days & this new ear thing oppress me. And really, once I saw where the ear stuff happened at CHOP I had a huge “Duh!” moment, I don’t know how I missed “Audiology” written on every sign down that hall the 15 bazillion times we’ve walked there!

Special thanks to Kelly Jarego (Ryan’s Mom) for the fabulous chocolate & coffee bouquet looking basket for the Coffeehouse…it looks Spectacular!!! We are so excited & grateful…

Must go see what my family is up to and find some slippers, my feet are so weary. Tomorrow might snow, but I think weather people like to toy with young children’s hopes. I need to bake, so a snow day might be handy!

Anyway, thank you…I feel better, strangely better. Really, the people we’ve met and continue to meet through all of this weird medical stuff are one of the greatest blessings I’ve ever received. Seeing everyone today really made my spirits lift…

Please pray that baby Andrew busts out of CHOP tonight, and for all of our friends who need prayers…especially Gabbie, Katsie, Nora, Devon, Drew & Joey, and a bazillion more, my brain is glop…

Peace,
K

COFFEEHOUSE FOR A CURE FOR THAT MOST UGHULOUS OF THINGS, NF
Saturday, March 1, 2008
7 pm
Music, cookies, raffles…family friendly fun for a great cause.

Let’s cure this thing already…

Tuesday, February 19, 2008 6:51 PM CST

Thank God for Slush and Cookie Trauma

Hi, all—

Just a quick howdy, I figured if I wait until Thursday after our CHOP excursion I’ll be incoherent (more than usual).

Things are peaceful here…I’m starting to feel a little nervous about the Coffeehouse, random dreams of forgotten things and lost cookies. I am hopeful it will come together…

So far I have 6 batches of cookies done, 1.5 more ready to be baked. I hope to make another few tomorrow after I hit the store. In a terrible turn—Cookie Trauma, I would say-- I actually broke my little cookie scooper thingy my mother-in-law gave me probably 10 years ago…ack! I love this little tool…I have to get to Bed Bath & Beyond soon or we will be eating a lot of bar cookies on March 1. I depended on that silly scoopy thingy. This would sound much more traumatic if I could remember what it’s actually called…alas! Anyway, I need at least 20 batches…better get busy, I can’t believe this is next week!

So why am I thanking God for slush? Well, as you may recall we had a slush…er, snow day last week. Rosie came home from school on Friday and said, “Mommy! We are at 96!”…it’s a thing in a lot of kindergartens, they celebrate the 100th Day of Kindergarten (I think it’s based on a children’s book). Even on a Friday during Lent (my one non-candy day, I am pathetically wimpy) I could do basic counting…

And realized if not for the slush day (which doesn’t count in the Days tally)…Day 100 would be Thursday. The day of all CHOPiness…

I have always said I want my kids to have REALLY good stuff for therapy. This would certainly qualify! All the things G missed…to start that again with Rosie…argh!

So now, because of slush, FRIDAY is the 100th day…phew! Or, as G would say, “HA-llelujah!”.

Tomorrow the girls start swimming lessons…we’ll see how long it takes for the instructors to remember G, she is the oldest in her level…and um, memorable. She is pretty happy these days…again helped me make dinner tonight, she just desperately wants to be useful and involved in stuff. Ok, I can relate to that…

Yesterday we took the kids bowling…Dave had off and we had a coupon. This was entertaining…A was ticked at the presence of the bumpers, Rosie could hardly lift the ball…G finally managed, by the end of the game, to hold her arm straight and swing the ball. It still only went an inch an hour down the lane, but at least she got it. I told her this was great, and maybe we could find out where Sandra used to bowl…her response? “Mom, I prayed to Sandra to help me bowl and she did.”

Sigh.

To have that confidence and peace about things…

I made my NF Kid display boards today…I am so not skilled with paper. I need to go get one more board, I have a few more pics to get up, but at least I am mostly done…the figuring out was the hard part, and that’s done.

Andrew went to the Met today (Metropolitan Museum of Art, NYC)…he was so excited, I’m so glad for him…now we can take them, I knew it would be a hard sell if I said, “ART MUSEUM”, but cool teacher taking them equals credibility that in fact the Met is totally beyond awesome. They just saw the Medieval & Egyptian displays (which are gigantic)…Andrew took 85 pictures! Many hieroglyphs…

Now we have to build a castle and make a stained glass window…he NEVER picks the easy projects!

I so have to run…please pray for our many friends mid-woe…Gabbie, Drew & Joey, Nora, Katsie, Carly, baby Andrew in hospital with a fever, Devon, Morgan, Carly & Carly and Steven and Brianna & Jim & Hadley & Thanos & Lexie & Jordan & Erin & so many, many others…

Too many…

Must run, really…please pray for us Thursday, I’m only worried about Rosie’s ear, really. Does that sound like famous last words? Hmmm…I’ve already hounded our poor doctor 2x this week, I promised her 48 hours of peace before we arrive. But please…any good thoughts, we’ll take them.

The longer we don’t go all the time, the more I fear going.

Peace,
Kristin

COFFEEHOUSE FOR A CURE FOR THAT ROTTEN NF
SATURDAY, MARCH 1, 7 PM
St. Mary's Stony Hill

Coffee! Raffles! Cookies! Music! Fun for all Ages!
come and join us!!

and if you live far away, you can crash with us, really...it will be mayhem, but you can...

Friday, February 15, 2008 8:16 PM CST

Hi, all…

2 weeks and counting until the Coffeehouse…

Yikes!

The quadruple batch of chocolate chip cookies is made and frozen, I bought tea for those who (ugh) don’t like coffee (only kidding)…a friend is donating really swanky juice for those who don’t like any traditional Coffeehouse fare… : )

Andrew had the stomach bug AGAIN this week…ack, get the Purell. It wasn’t as bad this second time around…but ew.

The kids got a slush day this week…3 inches of snow, then ice, then rain. It was like a monsoon passed through, the winds and ice were awful. A snow day is a lot less fun when a) you can’t play in the snow because it’s pouring rain and b) you have a dentist appointment to get teeth filled. Urp.

But this gave us time to finish up Valentines, we made heart shaped crayons (magazine idea, not mine, I still can’t believe it worked)…really just as a rationalization for me hoarding old broken crayons.

I hoped to send all sorts of people Valentines…and never got to it, I’m so sorry.

Thanks so much for the help finding the audiogram spot…I know right where we have to go, I just didn’t realize we had been there before (the other MRI waiting area is right there). Thank you, Linda & Sherry-Lee, I really appreciate it.

G keeps telling Rosie she is a good hearer, she’ll do fine on the ear test. And tonight G was asking if it’s bad if Rosie gets the answers wrong. Even Andrew wanted to know why Rosie had to have a test (when I told him about the scan results back in January, his response was “hey, mom, it’s snowing here! It’s really snowing!”…sigh).

To my great surprise, Dave says he is coming on Thursday. He seems to think he comes on days that aren’t scan days…I don’t recall that happening since our last inpatient binge in 2006, but maybe I’m wrong?? His work got so crazy, and that’s where the insurance comes from, I have no problem going alone for routine stuff…which is why I’ve done it 53,972 times (roughly)….

(I’m so not wrong). : )

ANYHOW, it hit me today rather like a pile of bricks…not a whole ton, just a pile…that my children Have BRAIN TUMORS!! I know, duh. But it’s like a callous you get from playing the guitar, you forget sometimes how much it hurt the skin underneath at the beginning, unless you gonk the callous off and the pain returns. (is that even possible? I don’t play the guitar, but I tried for 3 days once, hence my skill at “Momma, don’t Let Your Babies Grow Up To Be Cowboys”). Today I got a bit of a fish-slap of reality, I guess. The callous got gonked.

But then we had ballet, and we went to the Soup Supper at church., and Mass, which was beautiful even if Rosie stomped into the church and stage-whispered that she wanted to go HOME… I have to say, Crab Bisque is so not Lenten (it was beyond delicious, what a treat!). Life keeps moving...

And really, right now is kind of the Lazy River portion of our medical life…it’s been the Whitewater River of Screaming Woe, so I shouldn’t complain…I just had one of those chilly waterfall moments today. Who knows why?

I did sign Genna & Rosie up for swim lessons. It’s not at a great time, schedule wise, but I did it, I got them in, now we have to do it. I hope it works out. At least G will be moving!

Today I also picked up our raffle license (phew!)…thank you, Watchung, for helping us with this. Yesterday the Somerset Patriots baseball team sent us vouchers for tickets…we LOVE Patriots games, I’m so excited to have 2 more great prizes for our raffles.

If you have high speed, check out the new video on the CTF website (www.ctf.org) –George says it so well, what if we could be the person who donated the dollar that completed the funding for the research that found the cure? Every dollar matters, and I so hope the Coffeehouse makes a ton. We so need a cure, we need, need, need a cure.

Long weekend ahead, hope we can have some family time that doesn’t involve vacuuming & windex! Right now my house is literally strewn with paper puzzle pieces and poster board and random pictures and notes and baskets and stuff for baskets…

I should end on something brighter…I had my Ipod on in the kitchen yesterday, I was listening to Godspell. The song was “Turn Back, O Man” which is very Mae West in style.

G came in (she was hovering around the kitchen) and asked, “Mom, is this evil?”

I was taken aback. Ok, Mae West style songs do have a certain, um, flair, but evil is kind of an extreme stretch. I couldn’t even stammer out more than a “What?”

G repeated, “Is this Evil?”…then shook her head, and said, “I mean is this Wicked?”

Aha! Wicked…as in the musical…the songs I had been listening to when she left earlier. I had to laugh, somewhat with relief (come on, Turn Back O Man is a great song!)…and at G’s knack for word silliness. I better make sure she gets it right before the Coffeehouse, two Evil songs will be performed… : )

Better go, Dave needs the computer for some tax thing. Please pray for our friends, please pray extra hard for Gabbie, Nora, Katsie, Carly, Drew & Joey, Carly M. Sarah, Meadow, Lexie & Carly V., Brianna & Jim, Karen, Hadley, Steven, Jordan, Angelica, Kate & Katie & Emma...Drew & Thanos & Raffi…I could go on and on and on…we NEED a cure for all of the things that hurt these people…

And especially, especially for our angel families. Both Sandra & Timmy have birthdays this month, please pray for their families at this inconceivably difficult time.

Peace,
k

March 1, 2008
St. Mary’s Stony Hill
COFFEEHOUSE FOR A CURE FOR nf
7 pm
More great raffles each day…music…cookies…all for a great cause, all to benefit the Children’s Tumor Foundation

Bring a non-perishable food item for the Emmanuel Cancer Foundation in honor of Sandra, get 2 free raffle tickets!

And really, if you live far you can crash at our house if you have to, I promise I’ll make it not be a giant craft room by then.

Monday, February 11, 2008 9:22 PM CST

Hi, all…

I know, I am updating way too much. My last update, while amazing (really, read just the end if you haven’t seen it, you won’t believe it, I still don’t) is just WAY too long.

Genna did great in her first choir Mass! I could just see her ponytail over the top of her music binder…I have to enlarge the music, she holds it right in front of her face…but at least she didn’t bellow over everyone else, she really sang along! I am so very proud of her, and she LOVED it.

Rosie was very, very impressed (even if she & Daddy & Andrew got there late, I have fought a losing battle on that front for years!). She very much enjoyed the old spiritual the choir sang, “Somebody’s Knocking At Your Door!”…and sang it all day with gusto at home…as follows:

“Somebody’s knockin’ at yowr dowr!
O---oh Santa, Why don’t you answer?
Somebody’s knockin’ at yowr dowr!”

Andrew pointed out that it’s not Santa who’s ignoring Jesus, it’s a Sinner…Rosie thought about that for a minute, then said, “Oh. I thought it was Santa.” I told her I was pretty sure Santa would answer if Jesus was knocking…

We did lots of nothing this weekend…I finished getting the last few basket-y things, Rosie got her dance costume for the recital (so cute), I started making the NF Marathon Team Display board and the display of the NF kid pictures. It’s a lot of little stuff to do. I have to start baking (I freeze the cookies). Maybe tomorrow. It’s very, very cold here.

It hit me, Saturday night as I lay in my bed unable to sleep, that the Coffeehouse was only 3 weeks away. Then it hit me (much harder) that next week I have to bring both girls to CHOP. My Denial hit a bit of a serious low for a minute.

Amazing how quickly one forgets that sort of sinking stomach feeling a hospital visit with new stuff can generate. Ergh.

Today I made a binder for Rosie, I had her stuff in a file before, but now I need a binder for the eye reports, the clinic sheets, my notes. G’s binder has been emptied each time she starts a new protocol, it’s kind of a mess since she’s been off treatment. I don’t carry scan reports usually, but I think I should bring them for Dr. Liu next week, he tried to access G’s scan last time and it wasn’t available on his computer. For Rosie I definitely need the scan & report for Dr. Liu. We just weren’t expecting yikes…I know he wasn’t.

Weirdly, I had the same letter stickers I used to spell out G’s name on her binder (which the hospital gave us back on day 3 or 4 of this nightmare). Pink squares with swirly designs and little flowers, very Beatrix Potter. Like making it cute mitigates what the binder contains…?

ANYWAY, I looked up what an audiogram is today. A few days ago I went online to find the number of that department at CHOP, I have no idea where I’m supposed to go (any CHOP folks reading, do you know where I go for a hearing test? Seashore House? How do I get to that from the Wood Center garage?). Genna is worried about this, she told Rosie that she was a Good Hearer. I haven't said anything about this, really, about the why...G is very, very in tune with this stuff apparently, who knew? sigh.

See, it’s hard to stay in denial when there are details! I have to get back to Coffeehouse details, that’s a bit stressful but much more delicious! : )

Thanks all for praying for us…special prayers for Nora, Gabbie, Katsie, Carly, and especially Drew on the Road today…we so have to find a cure. As Alice said in the guestbook, maybe this could be the year for a cure for NF & low grade tumors…NF tumors are often low grade astrocytomas (G’s are), the research done for one benefits both. That’s why we do stuff both for brain tumor research and CTF…keep all our scientists working hard! : )

Anyway, better go sleep…thank you again to Sandra Boynton, your gift was such a gigantic launching pad for our efforts (almost like a trebuchet throwing a piano, it goes REALLY far)…we truly hope this will be the best Coffeehouse ever.

Peace,
Kristin

COFFEEHOUSE for a Cure for NF (blech)
Saturday, March 1
7 pm St. Mary’s Stony Hill Watchung, NJ
Raffles, Tasty Treats, and Great Music ALL to benefit the Children’s Tumor Foundation!

And really, any distant friends can crash at our place, just let me know so I can vacuum!

Bring a non-perishable food item for the Emmanuel Cancer Foundation in honor of Sandra, get 2 free raffle tickets!

Friday, February 8, 2008 8:48 PM CST

Hi, all—

A quick note, a note of heroes and hee hees, with a vomit story thrown in for good measure.

Now that’s a teaser, isn’t it?

The past few days I’ve been strangely busy and wandering around my house all at the same time. Rosie had a party right after school yesterday so I had from 8 to 2 all alone…weird. I should have planned something, but I didn’t, so I was kind of lost. I have finally almost finished sorting & purging baby clothes, washing things too stained (where do those stains come from? I swear I put everything away clean), making a bag for Baby Zoe, a bag for Good Will, a bag for me because I am a sentimental person…it’s been hard, but I have even thrown things away, I just have to separate them from memories of my girls (Rosie especially) as babies. G’s stuff was pretty worn out, so most of the tiny things were Rosie’s…

The Devils tickets came, I am starting to make raffle signs for each item, I am very slow.

I actually exercised yesterday for the first time in 6 years. It was not pretty. I think I could hear random basement spiders screaming “My eyes! My eyes!”, but I have to try and take better care of myself, which is almost as hard as not eating chocolate for 24 hours.

Anyway, here’s the funny…Rosie was asking me very seriously about CAT scans earlier this week. I have no idea why, Genna has only ever had 2, Andrew had 1 (moral: WEAR A HELMET IF GOING OFF A BIKE JUMP, ahem)…but Rosie was concerned. How do you get in? How do you get out? I explained it’s like a big donut, with a spinny camera inside, you just slide in on the table, it’s very easy to climb out. She repeated several of the questions, then asked very seriously, “So is it the same for a Dog scan?”

Ba dum dum ching!

Apparently I won’t be hitting the radiology lecture circuit any time soon.

Last night Genna helped again make dinner, a lovely “eggie pie” (spinach quiche, low fat cheese & milk, lots of spinach)…she actually likes this. As soon as we put it in the oven G snuck upstairs and had Rosie call Aunt Rita to remind her that she had said she’d take them out on Thursday for a Good Report Card Dinner. SHAMELESS! Rita the Ever Good Sport took them to the diner, where both had silver dollar pancakes and 2 mozzarella sticks. So much for my healthy dinner!

And alas, somewhere between bedtime at 7 and my schlepping up to bed around 11:15, Rosie’s stomach decided that pancakes & mozzarella sticks ARE in fact utterly gross together. Strangely, she did not wake up when her tummy revolted…which led to a most revolting mess. Last week with 3 sick kids we had no mess to rival this one massive yikes. Bed, floor, stuffed animals, random passer-by…Rosie was covered head to toe, Dave spent nearly 10 minutes just getting her out of her pjs and into the tub while I grabbed the Lysol wipes and went to work. UGH! Poor Cocoa & Baby Woofie got a good washing today…Rosie was concerned this a.m. when Cocoa was AWOL, I explained she was freshening up.

This morning Rosie was bright eyed and ready for school!

So are you ready for a hero?

Think of the person you admire, someone you don’t really know, you just appreciate their work, the way they are, you feel like you would like to invite them to your made up holiday about Chocolate, …then you find out they are Even Better, Bigger, and Brighter than you of course assumed…that they are deep down beyond generous…

The president of CTF called me yesterday. I met Mr. Risner at Sandra’s funeral, but still, I didn’t expect a phone message from him. Apparently someone donated $3000 to our Coffeehouse. A Mr. McEwan…

I was agog. Flabbergasted. Utterly rendered speechless for a full minute, which shocked my children. $3000?????? That’s more than we made last year (I think last year’s total was about $2800, which we were very pleased with). WHO THE HECK IS JAMES McEWAN???

So I thought…and I remembered. I read the credits on books & cds, I read who sings things and such…and I remembered the names on a certain book & CD set we have about Poultry in our favorite home away from home…

The gift wasn’t anonymous, so I think I can make the connection … and publicly thank the McEwan’s foundation…and especially Sandra Boynton.

I am not good on the phone, I am a nervous eek. I don’t have the same problem typing, so for Coffeehouse requests I have been sending letters and e-mails. Most places prefer this, and I feel more coherent telling an extremely condensed version of our story in typed words. Really, my rambling is worse when I talk.

Anyway, I e-mailed my Favorite Children’s Book Author to ask if I could get music for one of the songs on her book & CD set, thinking someone could sing it at the Coffeehouse. Unfortunately the music isn’t available, but I’ve had some very funny e-mail conversations now with Sandra Boynton...even if the first message from her almost sent me into some kind of starstruck cardiac arrest (ohmigoshsandraboyntonisinourinboxdavidohmygoshyouhavetoseewowohmigosh kind of like that).

To say I’ve been a fan of hers since I was a kid is not exaggerating…I drew my dad a “Hippotenuse” from a Sandra illustration when I was about 14, he has it Still in his classroom. We have 2 decorations for Chocolate Day: A Mona Lisa holding a Hershey Bar (now you KNOW why she’s smiling) and 4 Sandra Boynton chocolate theme cards that people gave me probably 10-15 years ago, mounted on purple paper and stuck on my closet doors.

Part of the reason I wanted to write books for children was the joy her books brought MY children over the years.

Sandra, I don’t know if you read here, and if you do I hope I’m not embarrassing you (or scaring you, really, I’m harmless, just effusive)…but I don’t know how we can ever thank you & your husband. I just don’t know…we are so grateful, and there just aren’t words. But I have to say THANK YOU from the very bottom of my heart…for my girls, and their big brother.

Rosie has been trying to sing “Faraway Cookies” …”just like the girl on the CD!” which is quite a fandango from a 5 year old.

And I will create an emergency Cookie Box in case you ever pass through NJ and need a cookie, and I will happily mediate with the psychic carrier pigeons if you like, I minored in that in college.

So in the stress of the details, the planning, the oops & yikes of things coming together, we just got a HUGE boost, a giant affirmation…and I am not saying it nearly like I want to, there just aren’t words for such generosity and humor. People say they can’t believe how we laugh through some of the garbagio we go through here…we listen to a LOT of Sandra Boynton music, we really draw a lot of strength and humor from your work, and we are grateful first and foremost for that.

So for anyone wondering what to do on a chilly March night, there will be a Coffeehouse for a Cure for Ughulous NF…and we’ll be raffling 2 autographed book/cd sets from Ms. Boynton…

Ack, this turned into an EPIC and a half, worse than usual…but some things are good to read, right?

Please keep praying for our friends, especially Gabbie, Nora, and Drew who is traveling this week for doc stuff…and so many others…

Wishing you a peaceful weekend…and I hope this monster update encourages you all.
Peace,
K the Never Short Winded

COFFEEHOUSE FOR A CURE to benefit the Children’s Tumor Foundation
Saturday, March 1, 2008
St. Mary’s Stony Hill Watchung, NJ
7 pm…Cookies, Music, Raffles…ALL FOR A GREAT CAUSE!
Bring a non-perishable food item in honor of Sandra for the Emmanuel Cancer Foundation table (Marta helps them out)…get 2 free raffle tickets.

Wednesday, February 6, 2008 8:21 AM CST

Hi, all.

Happy Lent. Ugh.

In happier news, hooray yet again for Chocolate is the World’s Greatest Natural Resource Day—our little fest was really, really nice. Rosie ended up wearing much of the chocolate fountain, she and her cousin Phoebe kept getting platefuls of M&M salad and running to the basement. Genna had a grand time following the 3 cute babies around the house…and Andrew came in late (he was at a friend’s birthday party) and dove right in!

It was just a really great night. This year I kind of kept it small, just the core folks who have celebrated with us for (ack!) 18 years.

I do find it strangely comforting that half of my life has been blessed by Chocolate Day!

And we didn’t have too many crazy leftovers, which is a good thing for today. I don’t give up chocolate for Lent anymore (a. life is so Lent-y, and I can’t afford therapy, chocolate is an economic plus for our family and b. I want to try and actually do “be a better person” kind of things…which is infinitely harder without chocolate! : ) )…but I can’t have it on Ash Wednesday.

And Sunday…I can’t say enough about what the Giants’ victory meant to our family. I know it’s silly, but I haven’t been that happy about something in…gosh, years? All day Monday I had a spring in my step, I actually went to the local sporting goods store and waited with a few dozen people for hats for my “boys” here…G wants a t-shirt, I got tired of waiting, but it was a cheery mob. Everyone was happy. The newspaper coverage was awesome…

I think the underdog thing just made it so much sweeter. None of us wanted to hope…

Anyone want to draw parallels to our life here?

Ok, I won’t (maybe I should give up being Captain Obvious for Lent) but this victory had us all wildly rejoicing, and I even watched ESPN on Monday to see the highlights. Twice.

Andrew was impressed.

I do think the fact that the Game fell on the Actual Date of Chocolate Day may have had something to do with the Giant’s remarkable triumph…!

And last night, Rutgers women beat the formerly (!) undefeated UConn basketball team! Go Lady Knights!

This whole week has been a Happy Birthday to my brother, Rich—but officially Happy Day for tomorrow! Maybe we should always schedule these games in his birthday week!

But now, back to normal life (still basking, but trying to be productive). Dave wins Husband of the Year Award for bringing Andrew & Genna to the dentist today. Those visits are always a nightmare. I do my best, dentist people don’t necessarily get the “I tell them to brush their teeth, but once you are past like 8 I’m not going to watch you do it, and really, there are things worse than bad teeth, BELIEVE ME.” They never do. I am sure since Dave brought the kids a. everyone’s teeth will be perfect and b. there will be no gentle rebukes of his neglect of the kids’ teeth. Sigh. Now if I can get him to bring Rosie on Feb. 25…heck, he wouldn’t have to get me a Christmas present next year!

Genna is having a very rough time with food…the idea of eating any less is anathema to her. Apparently EVERY kid brings chips every day, every kid gets pizza…we DO have treats here (hello, we celebrate a fake holiday about Chocolate), she just obsesses so much. Truly obsesses. I wish I knew how to make it better, it is such a battle…now I’m erasing things. If you can just pray for G on the food front…I know it’s not a big deal, but it’s an endless stress here. I just want her to be healthy and active…

Better run. I’m trying to get the Coffeehouse details together, it’s an astounding amount of little work. I feel a bit like the details are a popped feather pillow and I’m trying to pull them back together.

Please continue to pray for some of our friends: Gabbie, Nora, Drew & Joey, Katsie, Karen, Carly x3 (or, as we say, Carly who is so cute and came to the Coffeehouse, the other Carly, and Carly who’s mom & dad run marathons for NF), baby Andrew, Devon, Hannah, Lexie, Poppy, Emma, Mary Margaret, Sarah, all our NF friends and BT friends…I’m collecting pictures of NF kids for our Coffeehouse, to see all these smiling faces, to know what they are fighting…time for a cure, my friends, time for a cure.

Peace,
Kristin

COFFEEHOUSE FOR A CURE FOR UGHULOUS nf
March 1, 7 pm
St. Mary’s –Stony Hill, Watchung, NJ 07059
All proceeds benefit the Children’s Tumor Foundation

Cool Raffles, Great Music, and yes, Cookies Galore!

Bring a non-perishable food item for the Emmanuel Cancer Foundation in honor of Sandra, get 2 free raffle tickets! (Marta Blumberg helps this organization that helps low income families who have a cancer diagnosis…they have a food pantry)

Friday, February 1, 2008 12:35 AM CST

SUNDAY NIGHT:
THE GIANTS WIN THE SUPER BOWL!!!!!!!!!!
THE GIANTS ACTUALLY REALLY AND TRULY AFTER THE MOST NAIL BITING HAIR RAISING OH MY GOODNESS CAN MY HEART TAKE IT GAME EVER WON THE SUPER BOWL!!!!!!!!!!

No one expected them to win, NO ONE IN THE WHOLE WORLD... we are so beyond excited, when we drove home from our friends' house people were honking & cheering...Genna kept praying LOUDLY through the game (she doesn't really get football) "DEAR GOD PLEASE HELP THE GIANTS!!", Dave & Andrew paced, we all lost our voices, and Rosie watched a princess movie with her buddy Naomi.

WOOOOOHOOOOOOOOOO!!!!!
what an amazing, tough, hearty game.
we are so stunned, and for once in a super good way! : )

peace,
k the lifelong Giants Fan

Hi, all—

Yesterday was kind of a bummer, so I am being excessive and saying a few cheerful things today, even though it is pouring rain and the kids are home (teacher in-service, I think).

Report cards came out this week…and everyone is doing really well. Rosie has fine motor yikes (no surprise, and I’m not really concerned), A is doing well…and Genna, despite the daily battle that is homework (always takes nearly 2 hours…she is psychotically diligent), got all As & Bs…this is huge. I know they make some accommodations for her (penmanship must be creatively graded), but she does all the work everyone else does…and she’s hanging tough.

This is a relief.

Last night G helped me make dinner, which was a lot of fun, actually. We had some stress yesterday as I sorted through clothes, so little of hers fits any more…but after some gnashing of teeth we decided to try and be more active. Helping cook was an effective way to beat the 5 pm boredom must eat anything not tied down thing that happens here. And it was a quite tasty carbonara…

In yet another bright note (I hope I’m not scaring anyone with this fest of nice—really, my kids are bickering behind me, thank God there’s no sound on this thing!) yesterday we got a letter from Lou Lamoriello of the NJ Devils saying they will donate 2 sets of 2 tickets to a home game at their fabulous new arena…this is an AWESOME prize for our Coffeehouse, we are so excited…especially Andrew, who wrote a personal letter to go along with our donation request.

We had a nice trip to Costco this a.m., a little crazy (I was very impressed, the lady in front of us on line had ordered a cake that had a big football on it that said “Let’s Go Giants!”…what a smart lady! A celebration or consolation cake, such good thinking…!), but we got some really great fruit for chocolate day and some funky cheese (the perils of samples and shopping at lunchtime!). Rosie wanted a log cabin, but I remained strong. Heck, I felt guilty about the impulsive lobster dip purchase, can you imagine if I came home with a log cabin? : )

Oooh, my kids are being so obnoxious to each other right now, everyone is in charge…again, thankfully no sound here, quick Mom Yell Break…

Genna and Rosie were cheerfully discussing their next (and first together) CHOP visit this morning, sort of sing-songing “a Dr. B check, a Dr. B check!” together. Coming soon to a living room near you…”CHOP—The Musical”…

Ok, I’m digging now, but really, things are normal in the Land of the Shadow of NF.

I better go help with the playroom clean up, my niece and nephew are coming tomorrow for Choco Day and Rosie Phoebe = path of destruction…so why are we cleaning? Hmmm…? But we still have too many toys, trying to ease our way out of clutter. Progress is slow.

I hope you all will celebrate Chocolate is the World’s Greatest Natural Resource Day with joy and hooray…and we’ll be rooting for Big Blue on Sunday!

And like I said in yesterday’s short lived entry, if anyone from out of town does come to the Coffeehouse, you are more than welcome to crash at our house. We can shuffle around beds and when we run out we have floors mostly with Real Carpet, not Ugs (rugs that have lost their R…heck, until recently Andrew’s room was down to a G (no Ru remained). And the leftover cookies come home with us…! : )

Wishing you all peace this weekend, and joy in the little minutes…

My favorite…when I tuck G in at night before I go to bed she invariably wakes up, she’s a very light sleeper…her whole face lights up, she smiles gigantically and stretches her arms for a hug…and then instantly goes back to sleep. These are the moments I want to celebrate forever.

(even as she just got sent to her room for shrieking at her brother! Hey, life is normal here! : ) )/

Peace,
K

Coffeehouse for a Long Needed Cure for That Rotten nf
Saturday, March 1, 7 pm
St. Mary’s Stony Hill, Watchung, NJ (www.stmaryswatchung.org )

Fab cookies,
great raffles (now including Devils Tickets, circus tickets, a big choco/coffee basket, Sandra Boynton autographed books/cds set, original painting by my sister the FIT student (she is amazing), a snack basket, a Celtic Theater Company basket…AND MORE!!!
And really nice music, seriously these folks can sing….

Thursday, January 31, 2008 1:20 PM CST

Hi, all—

Just a quick note of howdy…seems like the bug is finally gone (knock on everything). Poor Rosie was so sick all day Monday I couldn’t get to Emma’s wake…Rose was just a heap of 102 fever, she wouldn’t eat or drink, I just couldn’t leave. By Tuesday (I kept her home then, just to make sure she was rehydrated) she was acting like a Diva, yikes!

So my mom paid our respects for us. Ugh.

Genna loved choir—I am so glad. And she was extremely pleased that Mrs. Blumberg was “helping play the piano!” as she said.

She also informed with great indignation yesterday that I Am The Only Mom Who Makes Healthy Meals, our neighbor lets Her kids have PIZZA! (this was on her way to her room after being caught with a piece of buttered bread stuffed in a living room chair…sigh). AND chips whenever they want…

It makes us all insane, the food obsession…but I am grateful to have her here obsessing. Not everyone is so lucky. (It’s crazy really, if I had my choice I’d eat fried chicken and coke & Hershey bars every single day…followed by chips, I LOVE junk food, alas! I do like healthy food, too…ok, I like any food except tentacled food. That’s just wrong.)

Anyway…

2 years ago yesterday was the worst scan ever, I only remembered this morning (I have trouble keeping that date in my head, it was the 30th but I always think the 31st)…reading that journal entry takes my breath away.

I hope no one ever has to feel that horror, really and truly…

Based on that scan, today should be very different for our family. That is all I will say about that, we don’t discuss this ever in front of our children.

And all the kids we were praying for then, on those entries around that date, have died.

Deep breath…

We need to find a cure. No parent should ever know that feeling…

Ok, so was not meaning to go there. We are doing well, really…I have pretty much mastered the Scientific Schpiel which enables me to explain (in varying degrees) Rosie’s situation without becoming the Human Fountain of Woe. It’s still hard to see other people’s faces when I tell it, though…ugh. You all have nice faces, I hate to see them all sad and teary and serious while I’m going on about “Hey, it’s only a Small tumor!” in a very cut & dry kind of way.

I am starting to ponder where on earth I need to go on 2/21 for Rosie’s test…Dr. Liu I know, Dr. B I know…it’s the Mystery Doc in the middle I need to find out about. I did get a binder to put Rosie’s medical papers in…sigh.

But today I’m going through tubs of hand-me-down clothes, trying to sort the things G hardly wore (she grew so fast around age 7-8) to the things she destroyed (aka “why did I save these?)…the girls’ closet is an avalanche waiting to happen, it is oppressing me. The baby clothes are next. I need all the excess stuff out of my house.

We are preparing for Chocolate is the World’s Greatest Natural Resource Day this weekend, I got the M&Ms for the salad and started getting chocolate for the fountain. It’s going to be very low key, but nice, I think. Heck, it’s a day around chocolate, what’s not to like.

And we’ll be rooting for the Giants on Sunday…but if they lose, we’ll be glad for Lexie, our Patriots fan friend and fellow BT warrior! Bummed for us, but glad for her! : )

Better go, the bus will be here shortly and I have to get myself together before the onslaught…

And if anyone from far away does come to our Coffeehouse, you can certainly crash at our house. We don’t have anything fancy, but we can consolidate kids and get air mattresses…we do have a very satisfactory floor if we run out of beds, and now I have a decent vaccum…and the leftover cookies come back to my house… : )!

Thanks, all—hoping your weekends are peaceful and chocolatey…and GIANTS filled!
Peace,
Kristin

COFFEEHOUSE FOR A CURE FOR YOU KNOW WHAT
Saturday, March 1, 2008
7 pm
Truly suggested donation $5, but really, just come…for great music, fabulous cookies, and some cool raffles of stuff galore!
St. Mary’s Stony Hill, Watchung, NJ (stmaryswatchung.org)

Monday, January 28, 2008 8:45 AM CST

It’s Not Easy Being Green…

Or, Why One Should Never Really Make Weekend Plans…

Hi, all—

Just wanted to wish everyone a happy Monday, and to thank everyone so very much for your support of our Coffeehouse. I kind of lost a week of planning (didn’t realize that as busy as I was last week, I did nothing somehow…the perils of post-scan, I guess), now I am trying to work through some of the sticky details. Anyway, thanks to all who have offered to help us out, or e-mailed me, or just acknowledged that Coffee is delicious…thank you. It means a lot.

I know it gets old. How many times can anyone think about this obscure disorder that really isn’t all that obscure? How many more times can we bug everyone we know before everyone hides?

It’s just that, as a parent, our whole job is to take care of our kids. I kind of wish that only meant matching the socks and making sure Rosie doesn’t have yogurt in her hair (no, really)…I wish we could just fix this without bothering everyone we know (and a fair number of folks we don’t know!).

Life is crazy, busy, full, up and down, etc…and there are so very many things, really important things, to try and fix. I sometimes don’t even open mailings from charities, I know I can’t help everyone (having somehow missed that square in the game of Life where you can choose “Gazillionaire” as career), it kills me that there is so much need everywhere. Making the world better is so daunting…

So I am very intensely grateful for all of you, for supporting our little piece of the Very Important. I’m grateful that you all haven’t blocked my phone or e-mail when you sense those begging e-mails are on the way! : ) It truly does mean a future for my children…and I want to be a grandma someday, (the one with a secret candy drawer and too much lipstick who leaves big kiss marks on the grandkids’ heads, which means I should probably start wearing makeup more than tinted lip balm)—and finding a cure is so hard, so big…

The NF gene is large and in charge, as genes go. That’s why (as I understand it) the dang thing is so variable. Severity and particular manifestation are determined by different parts of this gene. So finding a cure is a multi-step process…and there’s a lot of exciting stuff out there…

We are so glad to have you munch a way to a cure with us, one cookie at a time.

As you can tell from my pitiful title attempts, we have been smote with the stomach bug. G had it last week…a fever, not too bad on the throwing up. Andrew had basketball Saturday, played with a friend all afternoon, came in around 5, said, “I don’t feel well” and threw up for the next 10 hours non-stop, no fever really. Rosie took the baton yesterday morning with high fever AND non-stop throwing up all day (everyone has to be the most impressive here)…my poor little one is so bleary today. At least we seem to be on the upswing, and I am finding all my old chemo-stash of Purell…phew!

We did end up watching an awful lot of the Rolex 24 hour race in Daytona, CTF had a couple of cars representing the NF crew…one of them actually came in 8th overall, which is pretty amazing. Thanks, Racing 4 Research people!

Today I am going to try and get to Emma’s wake, if I can, depending on how Rosie is doing. I really have nothing to say about that.

We did make a reservation for Great Wolf Lodge. I saved my craft fair money so that covers a chunk, and I am looking at some writing stuff to try and get some more dinero so we don’t have to leave a kid there to wash dishes! I just need something to look forward to. We scheduled it after our next CHOP marathon on 2/21…well, after the Coffeehouse, but I had kind of hoped to go before 2/21. I always assume we’ll get horrible news, imagine that.

G got an invitation to a Camp Reunion, I don’t know if we can get her there (of course it’s in Philly), but it would be so good if she could go. She Does start choir tomorrow, which should be exciting…she is getting better at listening and not impersonating a foghorn, so I think it will be good for her.

She is doing well…some ongoing struggles are still deeply frustrating, but we’re doing what we can. I do lie awake at night thinking about how I’m not good at fixing this…

And I can’t use cookies, which is quite a handicap for me.

Anyway, better go check on Rosebud, I think Sesame Street is nearly over. Please pray especially for our friend Katsie, scanning this week…and for all our little ones. We are settling into our new normal, right now I still feel like it’s a pair of shoes a half size too small, squashing my sole (sorry, I couldn’t help it!)…but hey, we can’t DO anything right now but watch and wait, and we’ll get through.

I hope to be able to do what my friend (and fellow BT mom) Michelle once said...Watch and LIVE...

Wishing you peace this week,
Kristin

p.s. don’t forget CHOCOLATE IS THE WORLD’S GREATEST NATURAL RESOURCE DAY is this Sunday technically, we will celebrate Saturday so we can root for our underdog NY Giants on Sunday!

COFFEEHOUSE FOR A CURE FOR STUPID nf
Saturday, March 1, 2008
7 pm St. Mary’s Stony Hill Watchung, NJ

Really fun raffles, uplifting music, insanely good cookies…all to benefit the Children’s Tumor Foundation!

Friday, January 25, 2008 1:18 PM CST

Hi, all.

Don’t worry, no gloom and doom today. I feel a bit wobbly inside, I really hope I’m not getting G’s stomach bug. Maybe I’ve just had too much coffee…

Anyway, thank you for your continued prayers, support, etc. We really are doing ok, I know, I fall apart here and then people talk to me and I am together (or not, I’ve kind of been hiding—I don’t trust myself to not scandalize people by my impressive impersonation of an angry 19th century sailor during a brouhaha). Really, freaking out today serves no useful purpose. And EVERYTHING becomes annoying to me when I get like this, I don’t trust myself to not shoot flames out of my eyeballs at someone who brings up something innocuous like lunch duty at school or the high cost of living in NJ.

I just typed NF by accident, ah, Freud…high cost of living there, too…

G was so obsessing about her homework while sick…and then Andrew forgot to do some of his…like I said, everything becomes intensely annoying.

So if you see me, be warned. : )

Rosie asked me again, as we snuggled on the couch today (while I debated if it was coffee or stomach bug that was making my head feel like a carousel gone horribly wrong), “mom, what do they do when you get a port?”. I told her if she ever needed that I would explain it to her, but she didn’t need to know right now. Max & Ruby saved the day, then.

What and If – or maybe If and When, depending on your levels of optimism – are the road to insanity. I know, to paraphrase my friend Reca, it’s a short trip for me…

But along the way I reorganize an Awful Lot of Closets. Well, I continually re-organize the same 7 closets in the whole house. My girls’ closet is getting desperate, a patent leather shoe fell out of the sky in there today! Really…anyway, maybe this bit of yikes will be the thing to finally make me fully purge the last boxes of baby clothes and get clutter free. I started going through those boxes in the attic the other day…realized looking at Rosie’s tiny little fleecy booky clothing was not helping my mental state. Maybe next week.

Emma’s wake & funeral are on Monday. I won’t bring the kids, but I need to get to some part of something. It’s just so thoroughly rotten.

So thanks, all—I hope you all have a good weekend. We have stuff, not sure how much of it I’m up for. Really, we’re fine…I just feel like, in these moments, I take off my well worn flak jacket to reveal the target T-shirt underneath…and no, I don’t mean the basic Target t-shirt (which yes, I am of course wearing today, hey, a $7.99 t-shirt is not to be scoffed at) but the one with the big bull’s eye o’ doom painted on it. Sigh.

Please pray for everyone we know, all our NF buddies and our brain tumor warriors, especially Emma’s family…the weird convergence of two unpleasant worlds. And seriously, thank you all…I just can’t believe we didn’t dodge the bullet this time. So much for my ninja skills!

Peace,
Kristin

p.s. and thank you, thank you Sandra Boynton, your e-mail…it was like seeing Elvis in my in-box, but much nicer, really, I’m not really into white polyester. I couldn’t even open it for a full minute, I was beyond ago that you took the time…thank you.

p.p.s. Rosie quote of the day, in case you were wondering if the same bizarre normal Camiolo world is somewhat intact… “ Mom! Mom! Come here!”…I go running, she’s standing at the top of the stairs half dressed, 14 minutes before the school bus is due…”MOM! I have hair on my arms!”…the joys of realization. I explained that she wasn’t the only one…she looked surprised, “I never knew that, mom!”

THE COFFEEHOUSE FOR A CURE
For that nasty disorder that I will not even speak today except for where I already did
Saturday, March 1, 2008
7 pm St. Mary’s Stony Hill, Watchung
A really good time to be had by all (and thanks for the cookie shout out, all, I won’t let you down).

We are asking for $5 an adult, $10 a family SUGGESTED, really, just wander in, we want people to come and know about NF more than we want people to be searching couch cushions for dinero.

Dang, I just said NF…

Wednesday, January 23, 2008 1:16 PM CST

Thursday 8:30 a.m.
Emma earned her wings last night...
really, there are no words, please pray for the family.

maybe I'll put up the ballet picture later, they were all so cute, all those little Tiki birds together.

thanks.

and please remember Jeremy's family, a little guy I was keeping track of...he earned his wings yesterday too.

"2008 is going to be great" my big fat fanny.

Genna has a fever, but the throw ups weren't too bad, this is the first time she's had a fever that would have sent us to the hospital when she had a port (likely because we said to Dr. B the other day that she hadn't had a fever since de-port-ation).

And thank you for praying, our 4 scanning friends from this week were all stable!

peace,if you can find some,
k

*****************************
Hi again.

This is getting ridiculous, I know, like anyone needs a daily news bulletin of woe from the Camiolos?

Just having a rough day, so I figured I’d write a bit and then go be productive.

10 years ago this week, while changing my extremely juicy baby’s diaper (Genna was almost spherical she was so chubby, delicious!), I realized that she didn’t have only one birthmark. She had a few…and then I kept looking, and found another, and another…I guess since it was winter I had kept her so bundled up…

She had NF.

I knew it, I fell apart, I was terrified, I freaked, I cried and wailed and gnashed my teeth…good thing I’m not melodramatic…really, it was horrible. Dave was more peaceful, he had lived with the stupid thing his whole life, but I just saw visions of G being like me (shy & dorky) and terribly disfigured and wanting to hide…

We had no idea then of G’s personality, that She Is Woman Hear Me Roar.

We went to a Ladysmith Black Mambazo concert and I kept watching them sing, the joy, the celebration of their music…and trying not to cry. I joined the NF bulletin board (on the CTF website), found support (Beth, goddess of all), tried to not think about the what ifs.

We had nearly 6 years of ok. I should be grateful for that.

I feel really old.

Genna told Rosie yesterday that she might need a port, Rosie got all scared, asked me while I was detangling her, “mommy, I never have to get a port, do I?”…ack, I didn’t know her helpfully terrified older sister had somehow worked through the “we are watching some little things” and progressed to what watching could or could not ultimately lead to…

G & I had a long talk about things, aka Not Every Thought Needs to be Spoken…ending with a weepy sadness of “I wish I didn’t have NF”. Granted, some of the weepiness was over the “no, you can’t have a cookie”, but ugh.

Can I tell you how much trashy tv I am watching to just not think about things? Thank God for American Idol. Rosie giggles and giggles over it, she likes to watch all snuggled in next to me…Monday night I stayed up way too late watching something scary, then I couldn’t sleep (how dumb am I? but then Dave got into it, and he didn’t want me to change the channel to something less scary like Celebrity Hairdos or something inane…note, don’t watch shows about the paranormal before bed! : ) !)

Loud music is great, though, very helpful. I think it’s a good sign that I haven’t wanted to incessantly sing from Miss Saigon, “I feel walls in my heart closing in/I can’t breathe/I can’t win” which is often how I feel after bad news. This time I just want REALLY LOUD MUSIC. Sorry, neighbors. ; )

I got the scan & report yesterday, and actually looked at the scan, which I don’t usually do. I always read the report, but really, do I want to see those pictures Again? This time, yes, I did, I need to understand this plexiform thing.

Unfortunately this led to a full bore linear meltdown, of which I will spare you details…and from which I have mostly recovered.

Honestly, it could be So Much Worse! Just with R’s scan, the pictures are so NOT full of tumor compared to G’s, it’s easier to see where tumor is and what exactly is getting glomped. Seeing is believing, I guess…not that I didn’t believe, but someone let some air out of my cushion of denial.

I’m going to go back to work now, Rosie wants a cd on, the kids will be home in a few minutes. My head hurts. I did just open my 2nd to last Cadbury Christmas balls bag…

Rosie is calling, better go.

Thanks for praying for us, please remember Brianna, Lexie, Thanos, Alec, and Katsie scanning around now (3 of them today!)…and for Emma, Nora, Gabbie, Carly & Carly, Peter, Drew & Joey…too many, just to freaking many.

thank you all for your prayers & messages of support, I can't even tell you what they mean to us.

Peace,
Kristin

Coffeehouse for A Long Overdue Cure for a Thoroughly Horrible NF
Saturday, March 1, 7 pm
St. Mary’s Stony Hill Watchung, NJ

Awesome music, awesomer raffles, and awesomest cookies…really.

Tuesday, January 22, 2008 11:44 AM CST

Hi, all.

Happy Tuesday.

We are settling in here; moving along, planning the Coffeehouse, organizing things. Busy is good.

I said to someone, it’s a very, very good thing I’m so naturally disorganized. That way I always have piles to do when bad news or a scan (or bad news from a scan!) comes!

And the Giants winning the other night…holy Toledo, that was a happy day for all here in the land of the Big Blue. We know the chances of them winning the big game are low, but hey, you never know! And just for Sunday night, to have that level of woohoo was very therapeutic. We actually went to Meg & Mark’s to watch the game, which got me away from the computer, which was a very good thing.

Not all research leads to comfort.

But that said, our long suffering doctor has answered I think 5 or 6 e-mails from me just since Sunday (each answer led to more research, and then questions of increasing YIKES)…but I think we are peaceful for now.

Not to be extremely redundant, but it is what it is. And what can we do right now? Nothing.

So I am in a frenzy of Coffeehouse…thanks to Kelly & Christine who are helping with raffles, that means a lot, I mod-podged a pile of old raffle tickets into a bowl (can’t believe it worked, aside from the mod-podge fumes it was a fun project), we went today and bought display boards to make a thing for the NF Tea Party, the NF Marathon Team, more of our NF Heroes…I ordered puzzle piece cookie cutters & am seriously considering breaking the bank a speck and getting M&Ms in blue & green that say Cure NF. My first drafts did not say CURE NF, they said other creative things about NF that I thought would be much more fun to chomp and crunch and crush with my teeth…but the Coffeehouse is a family event, so I guess I’ll stick with Cure NF, if we decide to get a few of those.

And I cleaned up my craft Pit of Despair, found 2 copies of my friend Aimee’s number that I keep losing in the craft Pit of Despair (sorry, Aimee!—and God bless Brianna scanning today)…now I’m working on the upstairs closet where the girls put their massive quantities of art supplies. Between my own craft obsession & Genna’s 2 years of sick, we are drowning in art stuff. I’ve given some away (especially the stuff she couldn’t do), added some to raffle stuff in the past…now I’m trying to make the rest not be a heap.

And Dave fixed every broken lightbulb in the house, I swear we had about 5 go out last week…and he re-organized the Christmas lights & garland boxes, bought some paint to finish the bathroom trim…

I guess these three paragraphs say how we’re doing, hum? : )

Busy is good.

I feel like I have a handle on things, a bit. I know where stuff is in R’s head, I know what it’s squashing, I know this. The optic glioma, while on both eyes, IS small. Please, please, we are absolutely DOWNPLAYING the potential of this. Potential is just that, something that MAY happen. I know word is getting out locally, and people are falling apart—ok, I just erased the rest of what I wrote here. Please, please, for my kids, please don’t freak out. They know we are watching stuff, G particularly understands…but that’s all we are saying. I am a pro at Contained Nervous Fits so my children don’t have to be. And our families are being so great…

Thanks…I know it’s hard, it is what it is.

If they still had records, I know, I’d sound like a broken one. But really, what else is there to say? If and when we have to do treatment, you all will be needing a spackle brush to peel me off the floor. But today, we’re holding it together, and we are so grateful for all of you.

Better go finish that closet, the half-full art kits and stampers await. And the Play-doh is taking over…

And I have a SuperBowl Fest to think about!! And Chocolate Day, which is the night before…

Thank you all for all your thoughts & prayers…we really know we’re holding together because of all of you. Please pray especially for Brianna, Lexie, and Thanos this week, and always for Emma, Nora, Gabbie, Carly, Drew & Joey, and all our NF buddies.

Still singing a few too many choruses of NF Sucks to the tune of Jingle Bells, I am telling you it is like the Copa Cabana of Smite Songs…

Uh-oh…just occurred to me…seriously at this very second…sing with me…

Neuro-fibromatosis
Is a crappy little thing,
About which I hate to sing…
You know it’s Neuro-fibromatosis
A disease we can’t predict
Makes me want to go get sick…

I swear to God, Copa Cabana is exactly like a benign brain tumor or nf or both, it HAUNTS YOU!!! And grows, and can take over everything…and you can’t shake it, even if you run and hide it follows you…

How could we have gone this far without me figuring out that neurofibromatosis FITS TO COPA CABANA….?

Now I’m really sorry, everyone…now you REALLY know how I’m doing! ; )

Peace,
Kristin who will be humming this now for the next week, well, at least I got rid of Jingle Bells…
Of course the verses NOW occurring to me I can’t type here…yeeks… ; )

COFFEEHOUSE FOR A CURE ALREADY FOR ROTTEN NF
Saturday, March 1, 2008
7 pm St. Mary's Stony Hill
Watchung, NJ

Really some awesome raffles, music, cookies, and maybe some therapeutic M&Ms! : )

Sunday, January 20, 2008 10:23 AM CST

Hi, all.

I know, 3 times in 4 days? I promise I’ll slow down again soon, my brain is a bit full, and if I write here it helps…

And now I don’t know what to say.

I know that even a small brain tumor is an unimaginable horror to most people. It’s not my favorite thing to ponder, either, it still FEELS like saying someone is a little bit pregnant. I’m just so sorry for all the pain everyone is feeling, I am so sorry…I hate that our friends and family are so wrecked, I’m just so sorry.

We’ll be ok. Really, we’ll get through, somehow. Today, at least.

I think we’re still kind of incredulous about the whole thing. Granted, we can’t DO anything right now. When the day comes that we have to do something, I will likely be lying on the floor. Right now, I am only lying on the floor when no one is around. And I’ve been so crabby, yeeks. Everything kind of bugs me. And I have this come & go migraine thing…ugh.

We just kind of thought (this is utterly irrational) that Genna is exactly like David in almost every way, and she has NF, and Rosie is much more like my side of the family in temperament (and ok, weirdness) and she has NF, but she’d have it like me (which is not at all). I told you it was irrational, but I think we were just a bit shocked.

I did start researching yesterday, but that quickly took the bloom of my blossom of denial. I know the og stuff pretty well (alas)…and og means optic glioma, I realized the other day that in a text message og can seem to be ugh, there was some confusion! : ) But the plexiform stuff…it ain’t pretty, and I mean that both literally and figuratively. There are chemo trials, surgery options, I have some questions too about which nerve the dang thing is chugging along…

The weird disaster disconnect has kind of set in. If I keep it scientific and/or storylike, I can speak about this without a problem. It’s when I think or say anything about Rosie personally…who is at this moment trying to work out Why the Popple guy thought the other guy said “wet suit” when he really said “white suit”…a funny phonetic rambling behind me…those moments I start to unravel a bit.

If I think about chemo, or surgery, or malignant transformation, or what any of those sterile, medicalese words mean in Real Life…well, I’m trying not to.

Pinching your finger does help, I once heard someone say that, it helps you not cry. Ok, once you START crying it’s kind of useless, and then your finger hurts…but before, it somehow helps. Weird, huh?

But I’m not mad, I’m just like, “what the >>>>>???” (fill in word of choice, you can guess mine, even though usually I am a nice girl).

Sigh.

Genna told my mom on Friday morning, over toast, that if the thing we were watching in Rosie got bigger we would take care of it. And if we had to, Mommy could take care of both of them. She was worried, poor G…

Enough rambling. It could be worse. It just isn’t what we hoped, and I think in some ways, when I let myself (aack, pinch the finger, pinch the finger!!!) I realize I have a whole new set of hopes and dreams I get to watch die. Ye Olde Crash & Burn…my poor girls.

Pinching many fingers…

But today IS ok. We went out with friends last night which was lovely, the kids had quality time with Emily & friend Nick (Rosie is wildly smitten with Nick, the 18 or so year age difference means nothing to her, it’s really funny to watch, Nick is such a good sport), today we’ll watch the Giants game (and I love the Packers, too, so even if Big Blue doesn’t come through it will be ok)…today is ok.

I do become hyper conscious, too, of who doesn’t know…and how I don’t really care if people know, it is what it is, but I don’t want to have to tell anyone, it’s truly one of the worst parts.

I hate to think anyone else is hurting like we are. I get the denial cushion at least, or the “deal with the moment” cushion, you all just have to say dang and read these things and wish you could fix it…as I’ve done for other families. And we can’t fix it.

ANYWAY: here’s some good and happy things on the Coffeehouse front. We got a couple of REALLY fabulous raffle things. The Celtic Theater Company (in residence at Seton Hall University) said they’d make up a basket with tickets and a cd and jolly delights, which is so very kind. I already said Big Apple Circus gave us a 4 pack of tickets…

And on Friday, we got a package with 2 signed CD/book sets from SANDRA BOYNTON. I’m a huge Boynton groupie, Philadelphia Chickens, Rhinocerous Tap, and Dog Train are huge favorites here…her humor so appeals to me, and I think she likes chocolate as much as I do. I contacted Ms. Boynton’s website folks to see if I could buy music for a song from Philadelphia Chickens for the Coffeehouse…they don’t have music, but very kindly sent these 2 wonderful books & a copy of Blue Moo (the new one) to my kids…it is fabulous, just so funny. Thank you, Sandra Boynton & the nice ladies who helped us!

And Panera Bread Co. is going to provide the coffee…yum!

I do think I should let God know that we’ll do a Coffeehouse even if we don’t have an NF disaster in January or Feb. We are now 3 for 3 on yikes before the event. Really, we’re committed to a cure! We’ll do it, we promise!

Today at church they played a song called “Only in God” (they also played that retro hit, “Sing to God a Brand New Canticle”, which I think I last heard in 1978, which was a sort of smiley moment even if I left my tambourine at home). Anyway, “Only in God” has a part that says, “He only is my rock, my strength, and my salvation…My stronghold! My Savior! I shall not be afraid at all! My stronghold, my Savior, I shall not be moved!”

Once I stopped impaling my fingers, I realized we still have a long way to go. I can’t say I’m not afraid at all…heck, I can’t say that I’m even out of the same room as abject terror. But I have to focus on the moment, in NF that’s all we have. Anything beyond that…well, I haven’t found a way around the pervasive fear of what will come.

Again, thank you all for your love, prayers, and support. We really do believe that I am only not actually being a speed bump on our street because of all of you. I am mostly peaceful, just sad and yikes a bit. Thank you all…

Please pray for our Idaho twins, Drew & Joey, who are battling this same nasty monster. And Gabbie, Nora, Carly & Carly, too many…

Always for our little Emma friend, and this week for Brianna & Lexie who are scanning…

Thank you all—
And wishing you all PEACE, really, we’ll get through,
Kristin

The Coffeehouse for the Cure Already for this Stinking NF
Saturday March 1
7 pm
St. Mary’s Stony Hill, Watchung, NJ

Great music, raffles, and cookies which you know I’ll be baking once I start eating cookies again.

Friday, January 18, 2008 9:53 AM CST

Hi, all—
Me again.

2 Updates in 12 hours…? I know, it’s excessive.

I guess I just have to say that despite my sort of shock/denial/deep level of pervasive Yikes, I’m kind of peaceful about this. Honestly, I wasn’t surprised that there was some tumor—disappointed –I did tell Dr. B I don’t ALWAYS like to be right—but not surprised. The plexiform threw us for a loop…

The unknown is scarier, always, has been every step of the way…every time we “master” one part of this, something else magically appears, it’s like we’re in some video game and as soon as we beat one level ZAP! Now there are flying fire breathing pigs falling on us…

Ok, I don’t play many video games! : )

But really, today is only different than Wednesday in that now we know. We aren’t DOING anything right now. Nothing requires doing, we just know that now, in fact, despite our most hopeful hopings, there is a monster under the bed.

Hopefully he will sleep…

We have to do what Dr. B admitted was nearly impossible: see Rosie’s situation (ok, diagnosis, really, don’t EVER underestimate denial as a survival mechanism) without thinking even a speck about Genna’s experiences. Obviously this is practically absurd, but scientifically sound. I think it’s 80% of NF kids with optic glioma don’t require treatment. I did ask Dr. B when she pointed this out if she had met our family, Hi, we’re the Camiolos who NEVER get the good end of a percent…but I know ultimately she’s right.

Rosie’s story may not be Genna’s…

Rosie’s story may not make Genna’s look like a walk in the park, either, if you know what I mean.

I don’t know plexiform percentages, they’re such a difficult kind of tumor, I know there’s research being done, Dr. B is doing some of it (she didn’t say that, I had read it when searching for The Magic Cure online)…but that part of the story I can’t imagine. Well, I CAN, and some of the percentages Dr. B mentioned were very scary, but I’m not going there right now.

What we told my children, and what we’re telling people (who don’t come to this page!) is that there is some stuff we need to keep an eye on, we just have to watch some things that showed up on the scan. Rosie is very proud of her hospital bracelet (she wore it to school; G always rips hers off as soon as we get past the check out desk in clinic), and she kept doing dramatic reenactments for my sisters of how she was wobbly at the hospital. She thinks she did great…and she did. We are downplaying the potential yikes, because I’m the mom. I’m supposed to deal with potential yikes, kids only should have to worry about the yikes of the moment. And this moment is ok.

Just now we know. She asked if she has to scan again, I told her yes, just like Genna, we’re going to keep an eye on some things…

We’re kind of feeling this out as we go…because honestly, TODAY is ok. TODAY is good, and my baby doesn’t need to know what tomorrow may or may not bring.

At this point I get less peaceful, so I’ll stop. I have to find some heavy duty headache medicine, and plan a trip to Build a Bear…and to Great Wolf Lodge, I am making a reservation today, I’m going to pull the kids out of school in a couple of weeks and we’re going to go swim & play & enjoy today.

Today is all we have, really…

Thank you all for your prayers and e-mails of support; I wish I could put into words what each & every message means to me. I know you are all there, and you all know, and I can be a bit more open here than I can on the street. If I can say it like it is here, I can be strong out there…

Thank you for letting me say it like it is here, and for not running away saying LALALALALALA can’t hear you LALALALA….well, and the joys of the internet, if you DO do that I won’t know! : ) Run freely!

Peace,
Kristin

Please, please pray for our little Tiki Bird friend, Emma… I can’t even speak, just please pray

Thursday, January 17, 2008 8:05 PM CST

Hi, all.

Well…
I actually asked Dr. B, “how do we say this to everyone?”…and she didn’t really have a good answer, it is what it is, so I’ll go medical for a minute.

Rosie does have small, bilateral optic glioma—like Genna, but only “mildly tortuous” instead of “wicked tortuous” or however they describe it on G’s scan report.. While at this time the chiasm (where the nerves cross; the “magic” Yikes zone for og) is normal size (never seen that before), it does pick up contrast…which means there are tumor cells there.

Also to our great surprise (and dismay) there is a plexiform neurofibroma located below Rosie’s left ear. This is another type of NF tumor, also generally inoperable. We were totally unprepared for this. Of all the things I worried about, this wasn't on the list! Dang.

As a result, Rosie will have her regular eye check on Feb. 21, then an audiogram to check her hearing (now a concern because of the new tumor) and then a neuro check when she’s not walking like a drunken sailor. If we were homeland security we just moved up to the second highest color on the watch scale (orange? Yellow?).

I should have known, when I had the urge to sing “Go ye heroes! Go to glory! Though you die in combat gory! You will live in song & story! Go—to immortality!” from Pirates of Penzance in the parking garage on the way in (and ok, I did sing it) that we were in for a Day.

I don’t have many good words, as I said to Dave I can hold it together (which I did brilliantly until the last 30 seconds when our friend Brett said howdy, at which point I started crying at the crabby receptionist, who then almost sounded gentle—not often the diagnosis description changes between check in and check out, is it? But I NEVER cry at the hospital) OR ask coherent questions. I was together, not coherent. I am preparing my e-mail o’ dismay for Dr. B.

It is what it is. Now we know.

Now Rosie & Joey REALLY are twins…

Rosie did so well, really…we dragged her out of bed at 5, she slept most of the way to Philly, NEVER said she was hungry or thirsty…took a stand and pulled both arms inside the hospital pjs when we got there so she wouldn’t get a pinch….they gave her some oral “giggle juice” which helped her relax, the iv went really well. She was perky almost right after the scan, wobbled and bobbled around, but was fine—after she threw up rather impressively…(the ol’ “I have to go to the bathroom” then as we walked through the door “I have to throw up” and blam). But she was a trooper the whole day.

We did throw everyone off, coming with the wrong kid…the triage ladies said our name wrong, and then laughed to see who we were, the child life specialist & art lady were a bit “huh?” …it was funny.

I told them they just all missed us, that’s why we had this scan, now we’ll be back regularly.

Oh God…

And it was the worst drive home ever, 3 and a half hours…it took us an hour and twenty minutes to go the first 4 miles, due to the snow, heavy traffic, and a moron who ran out of gas on an exit ramp and wouldn’t let people move his car…then refused a tow truck…argh.

I feel ill and tired, and really pissed at NF. But I have to see this as Volume Two in The Camiolo Survival Guide…and in that vein I’m going to leave the survivor thing up a few more days…I just need to.

Thank you to all for your prayers, so especially to Banu for visiting and bringing us fancy food and distraction, and to everyone who stormed heaven for us. You all carry me.

Last night Genna came up to me in her pink footy pjs, her hair all loose for bed…and asked, “Mom, what if someone else in our family gets a brain tumor?”…my poor big girl, up at 5:15 this morning worrying for her little sister.

This world is too much with us…

Peace,
K

p.s. you can sing NF Sucks to the tune of Jingle Bells, try it, it’s fun.

p.p.s. if you call me and i don't answer, I'm sorry, please don't take it personally, I don't want to cry at people, and until I can be sure I won't I may just hide under my bed.

Coffeehouse for a Flipping Cure for Stupid NF (this is the unofficial name)
Saturday, March 1, 2008
7 pm St. Mary’s Stony Hill
Watchung, NJ

Really good raffles, a sickening number of cookies, and music you will love.

****************************************************************

We are survivors.

I sometimes feel guilty saying “we”; after all, it’s Genna who does the hard work of survivorship. But since her battle began so young, she doesn’t fully understand the stakes. That battle we fight for her, the battle of knowing, of knowing too little and too much in the same gasping breath, of searching for answers and begging for ignorance.

We are survivors.

I am unsure, though, how…not so much unsure of the doing—Genna’s scars are a reminder of every painful moment of the method of surviving—but more unsure of our own credentials. Such is the ambiguity of a “benign” tumor. Genna is stable. But the tumors are all still there. The elusive NED, No Evidence of Disease…that will likely never, ever be an acronym we get to make up songs about, which is a shame, I love acronyms & songs and NED is much more fun to sing about than chemo and blood counts.

So Genna IS a survivor. But what does that mean in our world? I know, it probably seems silly, if we’re surviving who cares what it means? However, the last few years have made me think about EVERYTHING. I’ve always been obsessive, but the diagnosis of a brain tumor put my conflicted mind into overdrive.

You see, in the beginning, I felt almost guilty. Genna’s tumor was BENIGN, after all, NOT cancer, not the killing kind of tumor—I know better now. I felt guilty participating in an online support group for Pediatric Brain Tumor families…compared to children with the Bad “Omas”, medulloblastoma, diffuse intrinsic pontine glioma, glioblastoma, anaplastic astrocytoma, PNET, ependymoma, our optic glioma seemed almost like a brain tumor wannabe. How could I be dying a thousand agonies of grief when my child’s tumor grew slowly, without spreading throughout her little body?

Make A Wish? That was for REALLY sick kids, Genna just had a brain tumor. A BENIGN brain tumor. Her hair didn’t ALL fall out, it just thinned. She never lost tons of weight on chemo. Sure, she was having horrible insomnia, random pain, severe vision loss, crippling anxiety and fits of OCD, but she wasn’t dying, so it wasn’t really that bad—right?

Denial should not be underestimated as a survival mechanism.

Conversely, I felt angry when people downplayed our shock and devastation because Genna’s tumors were caused by genetics (i.e. we should have expected tumors!) or because her tumors were Benign. “Oh, so it’s ok?” one mom hopefully asked after Genna told them she had a brain tumor and I explained that it was benign. When I tried to clarify that benign is still a train wreck, I sounded a little Munchausen’s by proxy.

It’s a tightrope, one that I am still learning to walk.

But even when I wobble and waffle, we are survivors.

Back on the very, very first day of all of this, I so hoped for survivorship, for having this whole surreal horror be a memory that we could give inspirational talks about. You know, the kind with beautiful music, glistening eyes, and a triumphant flourish at the end. Kind of like a children’s hospital commercial, a story full of hope and happy endings.

But you know, not all the kids in those commercials make it…there are angels there, little faces to remind us how tenuous and costly survivorship is.

People say we are so strong, they could never do what we had to do. This is a terrible misinterpretation…for I Could Never Do all of this stuff…everyone who knows me knows I am a certified wimp. There is no human being more timid than I was back in 2004. The old Monty Python quote, “Run away! Run away!” wasn’t a punch line for me, it was my guiding philosophy, no joke.

But when catastrophe strikes, it’s not really like you have a choice. We didn’t round up our mighty steeds and say, “AHA! The hour has come at last for us to prove our valor! Arise, and let us go forth and smite the Tumors!” No. We cried. We prayed (or asked others to pray for us, in the beginning I was too mad at God to pray, I would talk to Jesus, but God was off limits). We read books we didn’t understand. I begged someone to just tell us what to do. But ultimately we had to decide; we had to DO. If that’s strong, well, I guess we are. But if so, then maybe I look like Heidi Klum, too…

Sometimes to our own surprise, we are survivors.

I hope we’ve gained some wisdom through all of this. The thing is, we aren’t done. How can we claim survivorship if the work of surviving is an ongoing process? The issues left in the wake of a sleeping tumor are a daily trial. The brain is pricey, exclusive real estate. There just isn’t much room for anything else, let alone a condominium complex worth of errant cells. Our story isn’t complete. We haven’t reached “happily ever after”, and I thought that was the mark of survivorship…making it to “happily ever after”.

I never expected a marathon. I hoped for a cure, I never knew “stable” could substitute for cure.

So now I feel guilty when I don’t feel happy enough about “stable”. I try, I really do. It’s so much better than the alternative…but the scars are so deep now, I know that stable can shift in an instant and we’ll be sliding down into the pit again. I want a cure.

I want survivorship without strings attached.

But Genna is genuinely a survivor. Things she can do now, I truly never thought she’d be able to do after those dark months of 2004-2005…and after the even bleaker months of 2006, when I thought we had crossed out of imitator and into the Real Deal…well, every single thing that G does is a victory, the mark of a survivor.

That’s not to say we have erected a pedestal for her in our home. She drives me berserk, I bug her. We disagree on snacks & when a shirt is officially too small. She needs to constantly talk to me, I need some quiet. She gives me Diva Attitude and I tell her to do things Because I Said So. She is a 9 year old kid who likes books, coloring, and telling jokes. She is a normal kid, and I am a trying to be normal mom.

This is what survivors look like at our house.

When I go back to the hospital now, the emotions of our experience flood over me. Pressing my fingers against the cold glass of the clinic playroom windows four floors above the courtyard, I feel trapped again, like time is passing by while we fight in a parallel universe. I know our battle is on standby, but still…I can hear it, smell it, taste it in this place. It’s not just mental, it’s tangible. The battle LIVES here, it’s not just a story.

I can joke with nurses, make up cheerfully sarcastic commentary—but it only barely drowns out the wailing of my heart.

Still, here, at the hospital, Genna IS a survivor. She is taller than last time; she has new animals for her guessing game with nurse Mindy; she has a full head of curly hair and eyes that never seem to pick up on which kids are the patients, which in oncology isn’t always a difficult visual judgment to make. Absence does make people happy to see her, smiles and hugs await her at every turn. Here, she is the victorious champion returning to the scene of battle…

…even as I prepare my list of questions for the doctor and wonder if that 2nd cup of coffee is going to make me sick if the scan results are bad.

WE are survivors.

So we move on. I try to find the funny parts in our journey, but an awful lot of brain tumor stuff just isn’t funny. Sometimes I can’t talk about it. I get weirdly emotional about old pictures and school assignments and songs on the radio. People get uncomfortable, they cautiously ask how Genna is and brace themselves for the answer…and usually now I can say “she’s doing really well” and not be paddling down the river of my own denial. But if it’s near scan time, or she’s had a hard week with the ongoing issues that come with whomping huge tumor swirling through her brain…well, then, sometimes I tell people how we Really are. I can’t help myself. It’s not fair to them, not fair at all, and I feel bad later, bad that I was so selfish and bad that I have such answers to the simple question, “How is Genna?” Why can’t I just say, “Fabulous!” without it being my stock sarcastic response?

But I know…survivorship isn’t always pretty. It’s hard earned, it’s gritty, it keeps you up at night and throws you to the ground exhausted. It carries you to euphoric heights after crushing you to the lowest pit. Survivors fight for every inch, every molecule of their victory, scarred and battered though they are.

We are those survivors.

Our story isn’t done. But today, in this moment, we cling to all we love…we live, we do laundry and homework and fill prescriptions and leaf though the LL Bean catalog and through medical abstracts that may hold the key to our future…and in doing so…

We survive.

Sunday, January 13, 2008 2:03 PM CST

Wednesday, January 16, 2008

I want to keep the survivor thing up a bit longer, I kind of need it.

I just wanted to request prayers for tomorrow. After some discussion with Dr. B, we decided it would be a good idea to scan Rosie. Obviously this is not the happiest thing ever for us, but we kind of need to know…she has been mentioning headaches, and she’s not a complainer…and she’s the exact age G was…and she does have NF.

Anyway, I won’t ramble on. But if you could pray for us really, really hard tomorrow, I’d appreciate it. I apologize for the late notice, I only told Rosie about it today at lunchtime. She is not amused. Even the prospect of a trip to Build a Bear & the fact that “Joey does this too!” is not getting her past the “I have to get a shot!” (ie. The iv).

I hope very much to update tomorrow night. We have a 7 a.m. arrival time (which means a 5:15 departure time, banking on no traffic that early), 8 a.m. scan, 11:30 Dr. B visit. When we spoke of this a month ago, G’s one concern (since she was there) was “WHO is going to check Rosie??” (asked very fiercely)…when Dr. B raised her hand, G was ok with things.

I wish I felt ok. I don’t know what to feel, but the day is here and it is what it is. And Ikea was out of the shelf I needed to assemble this week! ; ) I am trying to keep insanely busy, I substituted at school today, which was good, even if it was all science classes, yikes! Now my brain has a bit of time to think, which is not good.

But we will survive…

Please pray for our little Tiki friend, Emma, who needs prayers upon prayers right now…

Peace,
K

And happy birthday Ceril & Donna…

***************************************************************

We are survivors.

I sometimes feel guilty saying “we”; after all, it’s Genna who does the hard work of survivorship. But since her battle began so young, she doesn’t fully understand the stakes. That battle we fight for her, the battle of knowing, of knowing too little and too much in the same gasping breath, of searching for answers and begging for ignorance.

We are survivors.

I am unsure, though, how…not so much unsure of the doing—Genna’s scars are a reminder of every painful moment of the method of surviving—but more unsure of our own credentials. Such is the ambiguity of a “benign” tumor. Genna is stable. But the tumors are all still there. The elusive NED, No Evidence of Disease…that will likely never, ever be an acronym we get to make up songs about, which is a shame, I love acronyms & songs and NED is much more fun to sing about than chemo and blood counts.

So Genna IS a survivor. But what does that mean in our world? I know, it probably seems silly, if we’re surviving who cares what it means? However, the last few years have made me think about EVERYTHING. I’ve always been obsessive, but the diagnosis of a brain tumor put my conflicted mind into overdrive.

You see, in the beginning, I felt almost guilty. Genna’s tumor was BENIGN, after all, NOT cancer, not the killing kind of tumor—I know better now. I felt guilty participating in an online support group for Pediatric Brain Tumor families…compared to children with the Bad “Omas”, medulloblastoma, diffuse intrinsic pontine glioma, glioblastoma, anaplastic astrocytoma, PNET, ependymoma, our optic glioma seemed almost like a brain tumor wannabe. How could I be dying a thousand agonies of grief when my child’s tumor grew slowly, without spreading throughout her little body?

Make A Wish? That was for REALLY sick kids, Genna just had a brain tumor. A BENIGN brain tumor. Her hair didn’t ALL fall out, it just thinned. She never lost tons of weight on chemo. Sure, she was having horrible insomnia, random pain, severe vision loss, crippling anxiety and fits of OCD, but she wasn’t dying, so it wasn’t really that bad—right?

Denial should not be underestimated as a survival mechanism.

Conversely, I felt angry when people downplayed our shock and devastation because Genna’s tumors were caused by genetics (i.e. we should have expected tumors!) or because her tumors were Benign. “Oh, so it’s ok?” one mom hopefully asked after Genna told them she had a brain tumor and I explained that it was benign. When I tried to clarify that benign is still a train wreck, I sounded a little Munchausen’s by proxy.

It’s a tightrope, one that I am still learning to walk.

But even when I wobble and waffle, we are survivors.

Back on the very, very first day of all of this, I so hoped for survivorship, for having this whole surreal horror be a memory that we could give inspirational talks about. You know, the kind with beautiful music, glistening eyes, and a triumphant flourish at the end. Kind of like a children’s hospital commercial, a story full of hope and happy endings.

But you know, not all the kids in those commercials make it…there are angels there, little faces to remind us how tenuous and costly survivorship is.

People say we are so strong, they could never do what we had to do. This is a terrible misinterpretation…for I Could Never Do all of this stuff…everyone who knows me knows I am a certified wimp. There is no human being more timid than I was back in 2004. The old Monty Python quote, “Run away! Run away!” wasn’t a punch line for me, it was my guiding philosophy, no joke.

But when catastrophe strikes, it’s not really like you have a choice. We didn’t round up our mighty steeds and say, “AHA! The hour has come at last for us to prove our valor! Arise, and let us go forth and smite the Tumors!” No. We cried. We prayed (or asked others to pray for us, in the beginning I was too mad at God to pray, I would talk to Jesus, but God was off limits). We read books we didn’t understand. I begged someone to just tell us what to do. But ultimately we had to decide; we had to DO. If that’s strong, well, I guess we are. But if so, then maybe I look like Heidi Klum, too…

Sometimes to our own surprise, we are survivors.

I hope we’ve gained some wisdom through all of this. The thing is, we aren’t done. How can we claim survivorship if the work of surviving is an ongoing process? The issues left in the wake of a sleeping tumor are a daily trial. The brain is pricey, exclusive real estate. There just isn’t much room for anything else, let alone a condominium complex worth of errant cells. Our story isn’t complete. We haven’t reached “happily ever after”, and I thought that was the mark of survivorship…making it to “happily ever after”.

I never expected a marathon. I hoped for a cure, I never knew “stable” could substitute for cure.

So now I feel guilty when I don’t feel happy enough about “stable”. I try, I really do. It’s so much better than the alternative…but the scars are so deep now, I know that stable can shift in an instant and we’ll be sliding down into the pit again. I want a cure.

I want survivorship without strings attached.

But Genna is genuinely a survivor. Things she can do now, I truly never thought she’d be able to do after those dark months of 2004-2005…and after the even bleaker months of 2006, when I thought we had crossed out of imitator and into the Real Deal…well, every single thing that G does is a victory, the mark of a survivor.

That’s not to say we have erected a pedestal for her in our home. She drives me berserk, I bug her. We disagree on snacks & when a shirt is officially too small. She needs to constantly talk to me, I need some quiet. She gives me Diva Attitude and I tell her to do things Because I Said So. She is a 9 year old kid who likes books, coloring, and telling jokes. She is a normal kid, and I am a trying to be normal mom.

This is what survivors look like at our house.

When I go back to the hospital now, the emotions of our experience flood over me. Pressing my fingers against the cold glass of the clinic playroom windows four floors above the courtyard, I feel trapped again, like time is passing by while we fight in a parallel universe. I know our battle is on standby, but still…I can hear it, smell it, taste it in this place. It’s not just mental, it’s tangible. The battle LIVES here, it’s not just a story.

I can joke with nurses, make up cheerfully sarcastic commentary—but it only barely drowns out the wailing of my heart.

Still, here, at the hospital, Genna IS a survivor. She is taller than last time; she has new animals for her guessing game with nurse Mindy; she has a full head of curly hair and eyes that never seem to pick up on which kids are the patients, which in oncology isn’t always a difficult visual judgment to make. Absence does make people happy to see her, smiles and hugs await her at every turn. Here, she is the victorious champion returning to the scene of battle…

…even as I prepare my list of questions for the doctor and wonder if that 2nd cup of coffee is going to make me sick if the scan results are bad.

WE are survivors.

So we move on. I try to find the funny parts in our journey, but an awful lot of brain tumor stuff just isn’t funny. Sometimes I can’t talk about it. I get weirdly emotional about old pictures and school assignments and songs on the radio. People get uncomfortable, they cautiously ask how Genna is and brace themselves for the answer…and usually now I can say “she’s doing really well” and not be paddling down the river of my own denial. But if it’s near scan time, or she’s had a hard week with the ongoing issues that come with whomping huge tumor swirling through her brain…well, then, sometimes I tell people how we Really are. I can’t help myself. It’s not fair to them, not fair at all, and I feel bad later, bad that I was so selfish and bad that I have such answers to the simple question, “How is Genna?” Why can’t I just say, “Fabulous!” without it being my stock sarcastic response?

But I know…survivorship isn’t always pretty. It’s hard earned, it’s gritty, it keeps you up at night and throws you to the ground exhausted. It carries you to euphoric heights after crushing you to the lowest pit. Survivors fight for every inch, every molecule of their victory, scarred and battered though they are.

We are those survivors.

Our story isn’t done. But today, in this moment, we cling to all we love…we live, we do laundry and homework and fill prescriptions and leaf though the LL Bean catalog and through medical abstracts that may hold the key to our future…and in doing so…

We survive.

Please pray for our friends, our survivors, and the families of the little angels who inspire us to keep fighting.
Peace,
k

and happy birthday to my nephew Damien, 8 is Great! And to Aunt Donna, G’s special friend…

Tuesday, January 8, 2008 8:22 AM CST

Hi, all—

Happy Tuesday.

I am running through the office here, and figured I should holler a quick howdy. Things are hurtling along again, and I feel a bit like I’m two steps behind. I had one of those moments of Revelatory Duh the other day…lying awake at 6 a.m., I realized that while March is the 3rd month of the year, that doesn’t mean that March 1st is 12 weeks away…it’s EIGHT weeks away. 8 little weeks…now less than 56 days…

AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH!

Ok, so I’m NOT the math teacher of the family, and December was a bit stressful…but yikes. I thought we had a bit more time to prepare for our Coffeehouse. Yikes again!

Dave is much less concerned than I am…so hopefully I can channel some of his laid back, “the raffle paperwork isn’t going to be a problem” vibe and focus on the “meat” of the evening—music, cookies, NF awareness stuff….

We do have some good performances lined up…and Rosie decided SHE wants to do a song, so imagine that for a few minutes…she is no prodigy, but geez she’s super cute.

My sisters set up a Facebook event for the Coffeehouse, so if anyone does Facebook you can find info there, too…

And I kind of need busy right now, so that’s good.

It’s freakishly warm (yesterday & today)…like 65! Hello! The normal is 38, so we are basking in this fake spring. I made G stop doing homework yesterday after 45 minutes and go play…

This weekend the kids went to PA with John & Peg to see the Sight & Sound Christmas show and go swimming at the hotel…they had a blast. Rosie got terrible chlorine eyes, and G ruined a bathing suit (I have never seen so much chlorine, my kids smelled like a pool store…toxic, but germ free!), but they loved every minute. It was such a treat for them, even G felt less bad about missing her radio prize (and our friends dropped off movie posters & the t-shirt G won, so she was happy to come home to that).

Of course this kind of Christmas present isn’t just for the kids…Dave and I had a great weekend…we finally replaced our cell phones (mine dates from G’s diagnosis), ran some errands (ran into a friend we haven’t seen since high school & chatted for 45 minutes, which was awesome), watched the end of the RU Bowl game (GO RU!), figured out the cell phones (I never did this with my old one…I actually put phone numbers in this one! I bought a ringtone!—the RU fight song! Woohoo)…we went for a hike on Non-Genna-Friendly terrain (rocks, hills, leaves), and actually ate dinner at a restaurant that was 30 minutes from our house! (when we rarely get out together, we always have to go somewhere 3 minutes from home…this was Lovely). It was nice to remember, “hey, we actually have fun together!”…

So thank you, John & Peg!

Now everyone is back to school…I have to go talk to the speech teacher today about Rosie, then tonight is the school pageant (yes, after Christmas, don’t ask), the girls are psyched…and Andrew has a huge project due Friday. I think I have to make a Julius Caesar costume (sheets, anyone?). G has been waking up and worrying about school projects & such…we are starting to see some of the difficulties the neuro-psych doc told us we’d see as G got older. She works SO HARD, but it’s hard to know the best way to help her. Her grades are good, but every one is hard earned.

I started investigating a consultation with a nutrition lady named Jeanne Wallace. She works with brain tumor families to come up with a plan to help health through food & vitamins & stuff…all RECOMMENDATIONS (not edicts), all scientifically backed (real science with trials & studies), all in conjunction with traditional medicine and chemo, etc. I just wonder if this could help G while she’s not on treatment. It’s hard to just watch & wait for the beast to awake, I’d kind of like to kick it while it’s sleeping. So I’m pondering Dr. Wallace…it’s expensive, but seems rational & carefully thought out, as opposed to other info we’ve occasionally been given. Ahem.

Anyway, before I drag out my soapbox I’d better run & clean something or ask some folks to sing or search out raffle donations before I run down to school. Please pray for us….for a cure for this stupid NF. It is getting old already. But how can we stop fighting?

Please pray for our friends, especially our Idaho buddies Drew & Joey this week, Gabbie, Carly, Devon, Nora….way too many others…

Peace,
Kristin

COFFEEHOUSE FOR A CURE
March 1, 2008
7 p.m.
St. Mary’s Stony Hill, Murray Hall (in the new parish center)
An evening of music, raffles, and really really good cookies (you know I’m not lying about that!)…
In support of Genna & in loving memory of Sandra…who had so much fun there last year…

Stupid nf…

Thursday, January 3, 2008 9:44 AM CST

Hi, all—

Happy New Year.

I’ve been meaning to write for days, I was going to post something I’ve been thinking about for a while (but it’s long, even by my standards!)…but things have been busy.

I said to my sister the other day that I felt a bit like a Louisa May Alcott book character, one of those country girls who goes off to a grand time in the city partying and dancing and frolicking about, only to realize she is tired and wants to go home. We had a lovely holiday season, really, it truly was good to see friends & family & a show and eat cookies (oh, I have so many cookies still!)…I am just glad that today the kids are back at school, I went to the store, things are getting cleaned up…

Things are getting back to normal.

The bathroom was mostly finished on Friday. Andrew said it feels like a suite (it’s a 5ft x 8 ft. bathroom, just to give context). Genna’s comment? “Now if we get water on the floor, the tiles won’t fall out, and that’s actually…(threw arms up in air) Hallelujah!”. I have to second that.

Peg & John are taking the kids to Pennsylvania this weekend (Sat-Sun) as their Christmas gift, which should be a treat for all concerned. And Andrew finished one part of his big history project, which makes us ALL feel better!

This morning was very momentous for Genna. Every single day she listens to her favorite radio station in the a.m. (we don’t let the tv go on before school, it paralyzes everyone). There is a game called “Beat the Toaster”…and today, Genna got through. They made me be the voice, but G was right there…we were the second in line, but the first guy botched it, and Genna got to actually Beat the Toaster by naming 5 weather conditions in 10 seconds (yes, I almost said rainsnowsleetgloomofnight, but opted for monsoon, hurricane (G yelled that) tornado)…

But here’s the bummer…the prize was tickets to a movie showing this weekend…G won’t be home—she’ll be with Grandma & Grandpa! Oh, the gnashing of teeth!

She was so disappointed, I guess she didn’t hear them say WHEN the tickets were for (and I was fixing Rosie’s collar), ugh! She finally does it, and can’t get the prize. She does win a t-shirt, which she is happy about, and Dave thought of someone we could offer the tickets to (classmates of G & R’s)…I think G will feel better about that, knowing Josh & Melissa (and Abby & Ethan) can go to the special Veggie Tales movie. We’ll go another time.

But ugh!

She’s been struggling so much with food, but in a happy note she had a FRIEND over yesterday…and I am signing her up for kids’ choir at church, just so she can be with people. The choir director was the accompanist at our Coffeehouse last year (and I hope her whole family will perform this year, they are a musical fest all together), she is one of the best people in the world, I know G will love to be with her.

This is so flibbily-floo, I know. There’s always stuff I can’t write here, stuff that fills my brain…and we have some medical things coming up that I’m trying not to dread…I’ll say more about that another time, when I am more free to do so. I’m very torn right now, I guess…this season we really got to see the good in people, the deep, pervasive good that folks have within…we’ve laughed (and laughed & laughed) while playing games or eating meals with family & friends, we’ve got to see friends & loved ones at parties & church…it’s been so great. But then there’s world stuff, brain tumor stuff…(little Daniel earned his wings this week; Dani-Ella & Justis both have their angel anniversaries; our Tiki friend Emma desperately needs prayers for a miracle), other stuff…I just wish that good would win more often, you know?

Well, in one giant victory, BABY ANDREW IS HOME!!! Talk about a miracle of modern medicine…please keep him in prayer, but hooray already!

And we are officially working on the Coffeehouse. I am nervous & overwhelmed a bit, but I know it will come together and be great. It’s just overwhelming to START again…but we have too many kids we are fighting for, our own G-bone & Rozilla, Carly, Gabbie, Nora, Drew & Joey, Meadow, Sarah, Jules, Landon, Lexi, Ari, the other Carly, Mary Margaret…and of course to honor Sandy. How can we stop when NF is such a …
Ok, family site, but you know how I feel about NF.

March 1, 7 pm. in the new parish center: Coffeehouse for a Cure. It’s a more intimate setting (yes, that means the room is smaller), but really nice. We are trying to start getting raffles together now, I am trying to figure out who won’t throw things at me if I ask them to sing…!

Ok, I have to run…I should be running a few errands, but it is SO COLD, like 20 degrees…as the accountant rats say in my favorite movie, “our assets are frozen!”…it’s THAT cold here today. Thank you for your prayers & support…and I hope you all have a blessed new year. I may post my new Year thoughts later…now I’m going to stick my toes in my coffee (it is so cold in my house!).

Peace,
Kristin

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