Nightly News Clip

I missed it last night, but caught this clip from another NB parent, Dr. Maris was on the CBS evening News last night with Dr. Sanjay Gupta. He is talking about the Immunotherapy ch 14.18that has dramatically decreased relapse rates among our kids. You may wonder if Hans will get this? Did he get this? Nope. It wasn't offered to him when he was diagnosed 4 years ago - it wasn't around yet (at least not at TCH, not to our knowledge!) But, thank God it is now. This is just the kind of research advancement NB needs.

But, there are other kinds of Immunotherapy that Hans still might be able to take advantage of at some point in the future, such as the 3F8 antibodies in New York. This is what we've all been voting for all month long (actually a new version that has less side effects than the current antibody - from what I understand the big side effect is PAIN). Thanks for your votes. Last I checked we were still in second. We just need to hold the lead six more hours. 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)!

Peace, Love & Cure,
Lara

Holding Second Place

Thanks for continuing to VOTE! Wow - what an eventful time we've had this September! I am seriously ready for October:)

Keep voting - 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)! Just for two more days. Thanks for your support.

Hans is fine. It's gorgeous here. We are all busy. It's cool enough to start tackling the yard...that's gonna be a BIG job. Oy! We will try to be at Cold Stone tomorrow for the World's Biggest Ice Cream Social. Hans and I were able to join two other TCH mamas, Joyce and Charon, on Monday for the Chili's St. Jude's day. It's exciting that there's so much going on for Pedi Cancer Awareness month this September!

Erik's mom, Donna, keeps an interesting blog, NB Globe and posted this article that I think is worth sharing - on why our little pedi cancers get neglected by big business pharma companies...

Peace, Love & Cure,
Lara

Counts OKAY!

Kevin in Canyonlands, Utah this weekend

Kevin Arches National Park (Utah) This Weekend

We had to trek back down to TCH today for a follow up visit after last weekend's stint inpatient. Everything is groovy. Hans' HGB is 9.9 here on day 14, his plts are about 120 and the ANC came back at 810, a little better than the 500 it was Thursday. Dr. Russell's interpretation of that head pain was that we just feel more achy and painy when we are sick. That's what each of my parents thought too. It's right up there with my favorite alternate explanation of 'tumor kill'. That's always my favorite possible cause of any symptom!

Oh, Kevin has been gone again! (He is a geologist - so he still gets to take field trips - went to Utah to study salt techtonics and sand deposition. The rocks in Utah are ancient examples that they can see with their own eyes of the rocks he examines in the subsurface at work via computer.) We are just about to go pick him up from the airport from another field trip to Utah. I know it's hard for him to be away from Hans, but at least he got to be in some beautiful place he really really loves. Ironic that it was hotter there than here! We've had a gorgeous change in the weather and we've been able to hit the park again.

PLEASE KEEP TEXTING!!! Three more days of texting. We are still in third. Oh, it would be sad to end the month one away... 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! I love this story from our friend Dodie who teaches at the 9th grade campus:
"I let my students get out their cell phones to vote today for the Pepsi grant--they thought it was AWESOME to get to use their cell phones in class! Hopefully they actually voted as opposed to texting their friends! If they voted, that should add about 50 or so votes today. I told them we would do it again tomorrow and Thursday. Good Luck!!"

sweet

Elle's request for her birthday was that her friends contribute to the CNCF. Here's her request, in her own words:

"Some of you may know that I have a little brother with a pediactric cancer called Neuroblastoma, and I would love to have some money donated to the cause. I ask that instead of presents please just bring a donation for the Children's Neuroblastoma Cancer Foundation, it may help a lot!"

She brought in $860 in honor of her little brother.

I just want to say THANKS!

OH - and I failed to mention the vote this weekend! WE MUST KEEP VOTING! For a while yesterday we had dropped to third. When I woke up we were back in second. This is for a quarter of a million dollars - that's a lot of bake sales and birthdays!!! And voting is free:) We must vote across the next 4 days! 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

Happy Twelve to our Elle

Our girl is twelve. We really couldn't be more proud of our darling, scholar, athlete, beauty with a kind and generous heart and a fun fashion sense!

She's been such a sister and friend to Hans. She never treats him any differently because he's in treatment. He'll tell everyone how she tortures him! They have that typical love/hate brother/sister thing. She is turning her b'day into a CNCF event...I'll post more on that later. It's awesome.

We're so fortunate for her good nature. We've had to schlep her off on friends more times than we can count since Hans started treatment. Many families have told us she's on the 'short list'.

Why is it that with every major holiday our celebrations have a bittersweet undertone? We get this gorgeous girl. Every child ought to see their 12th birthday, and oh so many more...

Peace, Love & Cure,
Lara

Second Place

I almost can't believe it, Arms Wide Open is in second place! It just tells me that NB families are organized and they can and do mobilize people to make a difference. All the stories of our kids are so gripping. They are so heartbreaking, and there is such hope that all of it can change with key treatment findings of the future. I have to live with that hope! Every couple of days I stumble across the statistics..."there is no known cure for relapsed NB, ...survival stats hover around 5%..." I don't dwell on these or think of them often because those stats are based on yesterday's research. There are efforts going on all over the country and the world to make the change. We are in a battlefield and we've already lost so much. We'll never forget the angels amongst us. And still, tomorrow is an entirely different ballgame.

That's how I have to operate anyway!

Check out this link - Hyundai's Hope On Wheels program funding grants for Dr. Sholler's research in VT.
(Stole the link from Pat.)

And one more link: watch this You Tube video, Abby Miller sings for Taylor Love, promoting the Arms Wide Open Vote. Talk about gripping!

Don't forget to keep voting...8 more days and we can rest. 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!

Stephanie... I log in and vote several times a day online. I figure it's okay because I'm using the log in. It usually makes me wait an hour between votes. It only allows me to text for each issue one time per day per cell phone line.

Mrs. Parker's class - I forgot to answer your question, Elle's team is in BLUE:-) That is Elle there, no. 41.

Peace, Love & Cure,
Lara

We have adjusted just fine to life back at home. I was wondering if Hans would have to cut his session short yesterday, but he did just fine. He is learning big 1st grade math...story problems and everything. I'm pretty proud of him! Oh, and we were pretty sweetly suprised by a get well packet from his first grade class at school. They had caught wind that he was in the hospital, and each student sent him a note with a little picture. My favorite was a note that said (your monkey - Pookie - has been messing with the calendar!). I guess that little monkey is playing tricks on Hans' class. Too cute - thanks Mrs. Parker and class!

We emailed Dr. Maris about Hans' complaints of pain. He got right back to us, saying that it would be prudent to add a head CT to our next round of scans, "hopefully just to reassure us". We will be heading up to Philly in two weeks.

In the mean time, on to the next thing. Elle celebrates her birthday this weekend! She's going to be 12. Oh, what fun.

Keep Voting! Nine more days. AWO has moved uo to third. Support Kids Cancer Research is 31st. Thanks. 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

Home

We are home! It is nice to be home. But, oddly enough it is never an easy transition for me. There are always 1000 things to do in 4 hours as opposed to 4 days. That's just the way it goes. You run around filling prescriptions - usually we have to call around to a few pharmacies to places to find the right meds - and make impromptu shopping trips - squeeze in laundry and call in favors for rides to/from soccer. It's a zoo! BUT we are most certainly glad to be home. Glad Hansie is fine. Glad to be all together - all 4 of us and our 5 little pets (a dog, 3 cats and 2 frogs still kickin') under one roof! I flipped through my calendar and I don't think we've actually been inpatient since JANUARY! That sort of tells me that Hans is actually holding his own on this Millennium! Only 2 hospital stays and one transfusion in the 10 months/13 rounds since he has been on this med. He has stayed on track with his dosing and will actually complete the round tomorrow. Yay. We are to get a CBC locally Thursday and go back in for an Office Visit to follow up with Dr. R. next week. No one seemed that concerned about the pain in the head (it is only when he/we touch it) so we are just going to bring it up with our oncs and see what they have to say about it.

Thanks to Shawn and Dean for rides for Elle, and Michelle for offering to have Elle over after school, but we made it home!

That's about it. Gotta go to bed. We left for the hospital for a bake sale Friday morning and we are really just now getting home (Monday night). Feels sort of like the twilight zone.

Peace, Love and Cure
Lara

Waiting for Discharge!

Here's a picture that Elle's teammate Allison took over the wknd. Go Elle! The game was great I guess. Elle scored a goal. A beautiful punt from our goalie that Elle tapped in right over the goalie's head! I wish I could have seen it. We won that game 2-1. Just the news we needed to hear from the ER Saturday morning.

Hans and I are just hanging on the 9th floor. Hans is actually looking pretty great now!!! We are just trying to stay entertained and bust out of here. We watched Home Alone 2 last night and I don't think I've EVER heard Hans laugh so hard. He didn't eat so much besides chips and soda yesterday, but breakfast is all about bacon to Hans when we are inpatient, and he's already eaten what came on his tray and sent me out for more.

That's about it! Kevin and Elle were home last night and are at work/school today. Thanks to Rebecca my Girl Scout Co-leader who took over our first meeting for me at the last minute. And thanks to Debbie for taking care of Elle yesterday while I came back down to the hospital. She even sent me off with the most delicious lunch!

Please Keep Voting - TEN more days of voting. I've heard through the grapevine that we were in third for at least a brief moment in the wee hours on Sunday, but we're back in fourth, and 32nd. 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

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

Hans Bouncing Back!

Hi,
I was pretty nervous in Clinic yesterday....sitting there HOPING we didn't come back with a low HGB and need a transfusion heading into Labor Day Weekend. Guess what! We didn't :)
Yay. HGB was 10.1 and ANC 1050. Plt okay, and chemistries normal. Yay. Normal weekend activities can resume... aka soccer, soccer, and more soccer.

The only wrinkle is that Elle and Honey and my washing machine were all out for a couple of days. Pretty good when Hans gets to take care of everyone else. Elle got her back to school cold. Someone better remind me next year to jack her up on Vitamin C next year. This happens every year. I pulled her out yesterday, and am keeping her home today. She was just miserable. Honey has a hurt leg from over-doing it last weekend at the park. She also has an ear infection... so she is on pain meds and an antifungal. Hans is very serious about his role as vet tech around here. I love it - I need the help. Our washing machine is now agitating after a visit from the kind, quick and efficient "1/2 Price Appliance" guy. That about sums it up.

Oh, our Girl Scout year started up last night with a mom's planning meeting. I'm back in the role of Troop Leader and I'm actually really excited about it! I stepped down as leader when Hans was diagnosed, and it's fun to be back at it. We have a great troop.

I guess the past 24 hours have been rather packed - I also submitted a request with homebound
to have Hans switched from the 8 am time slot to a later one. Much to my surprise, my phone was ringing almost as I hit send! He got the time slot that works best for him, but in the process we lost our lovely Ms. O:( We'll meet Ms. Yokam on Tuesday. I hate it when you solve one problem with another problem!

Oh, and I found a better link for voting for Arms Wide Open on that Pepsi Refresh grant.
Please consider voting 10 times per day all month. Perhaps it is the one thing we can all do for Pedi Cancer awareness month. How cool would it be for NB to receive one of Pepsi's top quarter of million dollar prizes. VOTE FOR ARMS WIDE OPEN HERE

Have a happy and safe Labor Day!
Lara
Every day is an adventure. Every day is a gift.

September is Pediatric Cancer Awareness Month

I'm a day late here - but I wanted to help highlight the fact that September is Pediatric Cancer Awareness Month. Hopefully you will be seeing a few things pop out at you in the media in your area!

Here in Houston we will have our annual Back to School Bake Sale. Friday, September
17, 2010 at TCH the third floor foot bridge, 10 - 2! Can't wait! It has been a while since we had a bake sale. Let's fund the research to get our kids off treatment, out of the hospitals (off of homebound!) and Back to School! Our NB HOPE 5K FUN RUN/Walk was meant to kick off this month. We actually had a couple of local charities with walks in September - Candlelighters on 9/11 and BIG Love on 9/25. Candlelighters does family support, like provide parking tokens! I heart Candlelighters! BIG Love furnishes inpatient children with toys, games and love! We didn't want to compete with their efforts. So, we had our run in August.

There are a lot of things happening around the country. In a few days a St. Baldrick's Group called 46 Mamas Shave for the Brave will take the media by storm. This group of 46 Mamas from all over the country will be congregating in L.A. to shave to put Pedi Cancer in the spotlight.
Why 46??? That's how many children are diagnosed with a cancer each and every day.
Keep your eyes peeled for my pal Shannon from right here in The Woodlands. She'll be one of the mamas shaving. Shannon is Sean's mama. Thankfully Seany is two years off treatment for his Rhabdomyoscarcoma, but his mama won't stop!

Another Mama is spearheading a group to compete for the Pepsi Refresh $250,000 prize. This can be the easiest thing we all do to support Pedi Cancer Awareness month, CLICK HERE AND VOTE by entering "Arms Wide Open" in the search engine at the top right. Or, you can just text away...TEXT PEPSI
(73774) and then Text 102653. Arms Wide Open would donate 100% of the 250K to fund a new Antibody treatment for NB.

That's only a few things happening across the country. I will steal a paragraph from Jack's mom, Sarah here,as she promotes an upcoming golf outing, that helps explain us pedi cancer parents are always worried about fundraising for research. Research is the only thing that will make a difference in our survival rates!
"The upcoming event represents more than just another fundraiser; rather, this is where the cancer war is won and lost. We often think it's in the laboratory or in a hospital room, but really this war on cancer is won or lost in our hearts and minds right this very minute. We have learned over the last five years that it's money that gets the cure. That's it, pure and simple, down and dirty. As one of Jack’s doctors said, “It’s not science holding us back, it’s funding.” It is money that attracts the researchers and institutions to study a particular cancer to get better treatments . . . and get us closer to the cure. That's why the odds of survival are better now for breast cancer and for leukemia. It's because the money was raised for the researchers to do the work. That's it."

Anyway, thanks for your ongoing support on all of our fundraising schemes!
Happy September.
Lara