Shoot

Well, we were home about 12 hours and then a fever re-routed us back down to TCH. We are sitting here in Room 908. We actually got here soon enough to be recipients of some of those leftover baked goods we delivered to the floor. Anyway, for a while yesterday it looked like it was just going to be one of those peek a boo fevers that came and went. No such luck. It keeps popping up and he's been vomiting a little bit. Just sick. He was also complaining that the spot on his head where the tumor is hurt a little bit when you touch it. He's never said that before. Obviously, we are a little concerned about that. But perhaps it is reassuring that the oncs up here are not rushing us to CT (the ER doc had mentioned it, though)??? Scans coming up in two weeks.

Hopefully Hans will turn around and be on the mend soon. He's just sleeping a lot inpatient.

I didn't manage to vote yesterday, but just checked - Arms Wide Open is still in 4th, and Support Kids Cancer Research moved up to 32nd. 11 more days of voting! Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!
Thanks,
Lara

Bake Sale Results

After a big busy day down at TCH we deposited $1,700 to the Children's Neuroblastoma Cancer Foundation. Not enough to change the world - but we figure every little bit counts. Every little bit helps to open up options for these kids!

Thanks to all my dear friends and the other NB mamas and grandmas and osteo-mama and rhabdo mama, etc etc! You know who you are and you are awesome.

Wanted to share the news of the day.

Please click and vote! Please do this daily - only 13 more days of my pleading. Are YOU voting??? I hope so. Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!

Baking for the Sale

Hans helped me bake for tomorrow's Back 2 School Bake Sale (a CNCF fundraiser at TCH) all morning. He worked hard right up until his teacher got here, and then worked hard some more.
My fabulous baker boy...

Hans doesn't have homebound on Fridays, so he'll come down to TCH with me. He's going to help - but I have a sneaking suspicion he thinks he gets to pocket the cash!! I haven't quite gotten him on board with the fundraising thing yet... I will drive him over to Kev's work after he tires of hanging out at the bake sale. He can help his daddy sharpen pencils and color maps and stuff like that for a while before they call it a day.

VOTING UPDATE: Arms Wide Open has moved up to 4th and Kids' Cancer Research is in 37th!
Have you voted yet today? Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!

peace love & cure,

Lara

Day 1, Round 13

Hans got the thumbs up to Start Round 13 of the Millennium (Aurora A Kinase Inhibitor) or MLN8237. At least we are safely two days away from the 13th! Although I usually do everything in my power to get everything going on time, every time, that was just bad juju to start Round 13 on the 13th... Especially when Hans relapsed on his 13th Round of ABT751. Okay, that's all I'll say about that. I'm just really praying that we continue to get the stable to improved scans we've been getting. Our next scan dates are 10/5 and 10/6. Thanks for any positive vibes, thoughts and prayers you can offer Hans for continued good news on those scans.

We are all preparing for the Bake 2 School Bake Sale down at TCH to benefit the CNCF! It's been a while since we had a bake sale and I'm trying to be even more organized than usual.

I wanted to share a couple thank you's:


This was all donated! Thanks to Kevin's Aunt Holly for beading and donating all of these lovely lanyards just in time for the next bake sale. And thanks also to Lana Williams Gallery in Old Town Spring. Charon got this local artisan to hand craft, weld and donate two of these stands for our cause. Awesome!

The latest on the Pepsi Vote: Arms Wide Open has moved into 5th Place! Just 3 places to go for the prize $$! And, Support Kids' Cancer Research is Flying up to 40th! Can you believe it? Please continue to vote for two more weeks! Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!

Peace, Love and Cure!

Lara

Made Counts

Hans 'made counts' today with HGB of 10, Plts about 230 and ANC of a whopping 3700! Yipee. Unfortunately, we are not cleared to start med yet. We are waiting for the numbers to get to CHOP and be approved and for new med to be ordered. Hopefully this will all happen tomorrow.

We are reunited tonight. Kevin's been on a field school in Utah. I'm going to ask him to post some pics here for you. He has been gone '7 nights' and Hans has been very mature about counting down, missing daddy and literally, being attached to me at the hip.

I am copying this link from Erin's Blog. President Barack Obama made a Proclamation that September 2010 is National Childhood Cancer Awareness Month. It's worth a read, for sure. Even though we live 'Childhood Cancer Awareness Life', this proclamation brings up many great points!

Please continue to VOTE VOTE and VOTE! We can rake in a half mil for Neuroblastoma Research from Pepsi by clicking, signing in and voting! AWO still in 6th. Kids Cancer is flying up to 44th, thank you for taking the time to VOTE! Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!
Peace, Love and Cure,
Lara

"Any troubles you may have will pass very shortly"

Not only was that a good fortune which I whole-heartedly hope comes true for Hans and all of his tough little NB buddies, the charming thing about it was that Elle told us Hans read it out loud to her:) We were in line at Panda Express and the kids sat down, Elle said Hans only needed help with two words! Yay for reading!

Anyway - we had a nice 'normal' weekend. Hans seems to be over the worst of his cold. We had a couple of trips to our community pools with the kids' pals. Hans is a pro at jumping off the diving board and diving all the way to the bottom of the deep end. He is pretty Amazing! We spent yesterday afternoon floating along our lazy river pool. It is still swelteringly HOT here. UGH. I had a bunch of lanyard/bake sale errands to run, but should be just about ready for Friday's Back to School Bake Sale at TCH...a fundraiser for The Children's Neuroblastoma Cancer Foundation.

THANK YOU AUNT HOLLY and GRANDMA KATHY for sending lanyards and model lanyards for an event later this month!

Back to the business of voting. Arms Wide Open is now in SIXTH PLACE! And Support Kids' Cancer Research is up to 56TH!!! With 17 more days to vote, why shouldn't we both win??? Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!



Hans is already starting the countdown to Christmas and working on his ELABORATE Christmas list for Santa. It's not so much a list as it is a three dimensional living document! 102 nights 'til Christmas???

The nurses on the 9th floor wear these cool shirts that read
Peace, Love and Cure, I think I might go with it.
Lara

46 Mommas Slideshow

If you haven't caught a lot of Stand Up to Cancer stuff on the news (like me, somehow), check out this You Tube video. Shannon (the mommma from the woodlands) posted this on Sean's Caringbridge site yesterday. I borrowed. What an event! I sure think it's fun to hear about what is going on around the country to recognize Pediatric Cancer Awareness month.

Dates you might want to save for this month:

Monday, Sept 27th, The Big Day at Chili's, where ALL PROFITS earned that day are donated to St. Judes!

and

You might want to plan on being there for The World's Largest Ice Cream Social at
Cold Stone Creameries everywhere!, Thursday, Sept 30th 5 - 8 pm. Receive a free Kate's Creation ice cream. All donations that night will go to the Make-a-Wish foundation.

I love it! Please share with me more cool links you find. Thanks.

And, don't forget to vote. Arms Wide Open is in a holding pattern at no. 7. Support Kids Cancer Research Foundation has soared to 78th. 19 days left to vote. Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)!

Oh, Hans now has Elle's cold:( We are laying low yet again. Another family kindly picked Elle up for soccer this morning. Thanks, Magees! I HATE to miss a game, but love to chill with Hans! We are on a board game thing lately - it's still toooo hoooot to hit our parks. Uno and every kind of Uno, Sponge Bob Game of life, Cranium games. It's fun now that he's really able to play with out cheating tooo badly.

Lara

There's a Monkey in Hans' in Chair

There's a Monkey in Hans' Chair! Even though Hans isn't cleared to go to school these days, his little monkey he named Pokey is going for him.

I attended his classroom's Open House last night. Mrs. Parker is just fabulous. She is making a very special effort to make Hans a part of her class, even though he is starting out the year right here at home. He has a desk, a chair, and Pokie can go to school for him. Check out There's a Monkey in my Chair! This sweet little program was developed in honor of a girl named Chloe who had to go on homebound after being diagnosed with a brain tumor. Unfortunately, Chloe lost her battle, but what a special legacy to leave other kids in her shoes. You can order a kit, or sponsor a kit through the link.

Back to the business of voting. 20 more days to vote. Let's rake in the dollars from Pepsi! Arms Wide Open in 7th place, Support Kids Cancer Research has moved up to 81. Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)!

Thanks for checkin' up on us! Please Pray for Patrick today as he begins his new trial. xoxo
Lara

"This is a Job for Oxi Clean"

I think Hans has a little bit of a pitch man in him; those Billy Mays commercials strike a cord. A couple of weeks ago he convinced me that our household needed Oxi Clean. We picked some up, and now every time he catches me doing laundry, and I am holding up a stained garment (like Elle's soccer socks after last night's endurance training...in the MUD) he comes running into the room, with his finger pointing up saying, "This is a job for Oxi Clean!" He then eagerly gives the load of laundry all of his special attention.

I guess things are going well around here if all I have to report on is the laundry.

I wanted to add another update, though, to let everyone know that the two NB Pepsi Refresh Everything causes are gaining ground. Arms Wide Open has stepped into the 7th slot (just 5 to go to get the prize) and Support Kids Cancer Research has taken the 88th slot. Just 86 places to move up to win a prize. If you're fighting relapsed Neuroblastoma, you've got to cultivate that wild optimism. Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND by voting for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)!

Looks like we might just make counts

Just got back from a local lab draw.
Everything actually looks okay right now! HGB 10.0, ANC 2200, and Plts 230 or so.
If we keep it up, we might just make counts. Hmmm...usually the even rounds have been tougher for Hans, maybe he is building up his tolerance to the 60mg dose. Good news.
My problem with starting the 13th Round on the 13th resolved itself. Dr. Russell is out the end of next week, so she is getting him on her schedule the first thing on the 14th! That'll work.

The school year is keeping us hopping with getting Hans going, getting Elle going, getting Girl Scouts going, and getting lanyard workshops back up and running! I feel like I need a major organizational makeover around here. I should be good at that, as a Virgo, but apparently not so much. Kevin switched to a new group at work and he seems to be really enjoying it.

PEPSI REFRESH EVERYTHING VOTING UPDATE:

22 more days to vote. Arms Wide Open is now in 9th Place!!! Support Kids Cancer Research is up to 96!! I've been voting multiple times a day, I actually just added two new tabs to my favorites bar for the month. I vote just about every time I sit down at the computer.
Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND by voting for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! Sorry if that's confusing. But, the top two projects each win 250K! Why not nominate both?

A Day on the Breakfast Tray...

Just a typical day on the breakfast tray!

If your kid has a pedi cancer - you may be able to relate here. Thier taste buds can get pretty fried, like Hans, about to start his 39th round of treatment. He will only eat what he wants to eat, when he wants to eat it! I relate it to how I felt being first pregnant. I just couldn't stomach certain things.
So, this is what he's into every morning these days! It's one reason I'm truly pleased with homebound. I don't know how I could rouse him early enough to get a bunch of this stuff in him and still have him sitting in class at 8am.

Good news on the homebound front: Hans' sessions have increased from 2 sessions per week to four! I'm pretty excited about this. We lost Ms. O :( We'll meet Ms. Yokam and we'll get to mix Ms. Kathy back in from last year. I'm excited. We'll see what Hans thinks.

23 more days to vote. You can vote in Pepsi's Refresh Everything give away for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND by voting for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! Sorry if that's confusing. But, the top two projects each win 250K! Why not nominate both?

Thank you thank thank you!
Lara

"I"m allergic to Pictures"

If you think I'm a little lazy with the pictures, I swear it's not just me - Hans told me yesterday, "I'm Allergic to pictures!" Argh.

So, from our entire Labor Day Weekend at the Labor Day Cup in Austin, this is all I have to show for it! Elle's coach entered her pool into a tournament in Austin. Elle's team had a pretty respectable 1 win, 1 tie, 1 loss. I had fun watching. Kevin and I tag team to watch the games/watch Hans b/c it REALLY is TOO HOT for him to sit by the sidelines. He did watch one of our other teams from the car though, in a nice shady spot. Too bad one of Elle's games didn't happen to be right by the street. He does like to watch his sissy play. The girls played and bonded at the hotel. They really have that group mentality now. It's nice, too, that we really like the other soccer families. We spend a lot of time together.

We were able to enjoy just a bit of Austin in between all the games...we tried to go out to eat at the original Chuy's, but with the line around the block, we opted for El Rancho. We also were able to take a quick dip in Barton Springs Sunday, before heading back to The Woodlands. Not a bad Labor Day Weekend! I am just soooo glad we didn't wind up making our way to Dell Children's Hospital while there. Hans has visited enough Children's Hospitals.

It's still September! More days to VOTE HERE FOR ARMS WIDE OPEN! Arms Wide Open goes toward funding antibodies at Sloan Kettering New York or, we found out there is another foundation for NB research in the running. Since we have 10 votes a day, may as well VOTE HERE AS WELL! This is a new foundation starting out in California. I met this guy, Frank, up in Chicago this year. His daughter Calli couldn't make the trip. Thanks for your time, attention, love, and votes...
Arms Wide Open is now ranked no 12. The top two ideas get funded. When I first started voting they were ranked 28 or something.

Hans seems to be doing just fine. I'm going to try to set his office visit for next Thursday or Friday. He is scheduled to start his next Round, 13, on Monday the 13th! UGH. If you are even the tiniest bit superstitious how do you wrap your mind around that? Especially when Hans relapsed for the second time on Round 13 of the ABT751??? I don't know. I did email Dr. Russell to see if we could start it on the 14th!
Lara