G'Sale and campout weekend...

Hi there,
As I update today I am just a bit pooped! I just got back from a chilly NB garage sale. We did 1300 in sales! Thanks to those of you who helped out with it! Not bad, considering it was chilly and someone apparently made off with most of our cool signs. Here is a photo of some cute boys at the sale - Donovan, Alex, Roman and Hans. Can you believe all four of these cuties are NB boys - currently disease-free?
Last night I was invited to help with the dinner/campfire portion of a girl scout campout. It was a chilly nite - but the girls toughed it out in platform tents at camp Robinwood in Willis, Texas. The girls are going to cut their campout just one night and one breakfast short. They are going to pack it in tonight after dinner. It has been windy here and it is supposed to get down to 37 degrees tonight. Brrr.
Elle will be happy b/c she won't miss out on one night of Grandma Stephanie's visit. My mom is joining us for her spring break. I pick her up at the airport tonight.
Hans is doing well. We are so very happy and blown away with his continued NED (no evidence of disease) status. Thank you for all of the prayers you have said for him, and for each and everyone of his precious cohorts. Hans is doing great. I'm thrilled to announce that he is over his bath phobia! He has apparently completely recovered from it and he is now clean as a whistle, smelling like a precious little baby. There were a rough couple of months where baths were just torture to him, and he'd sometimes have an hour-long tantrum when we forced him to clean up! He's still sticking to his PJ's though??? I just think of it as one of those things. I've heard of kids who wear a superhero costume for a year straight.
I'll update more later on during the week.
Love, Lara
ps Thank you very very much to Aunt Holly for the care package, including about TWENTY FIVE lanyards! Wow - now I can be lazy before the Earth Day Bake Sale! Thank you!!!

Good (or I should say GREAT) News Has Arrived!

Lara asked that I update the blog..

She sent me a text a few minutes ago saying that Hans has more clean scans!! Will return in 3 months for scans again.

They are currently checking out of the Ronald McDonald House and will roam the streets til it's time for their flight back to Houston tonight!

Thanks for all of the prayers!
Carmen

More Pics

Elle and Sydney at the Oil Ranch

Elle and Caley with a real Texas Longhorn at the Rodeo

Sheri, Me, Elle and Caley at the concert

Elle and Caley

Hans on Pony Ride at Oil Ranch

Hans - Milking a real cow!

Elle and Caley

I'm just home getting the house ready to be gone a couple of days and packing light bags. Thanks in advance to Ginger and Michelle who are watching Elle and Honey while we're away. Hans is doing great. He just had a little incident at the park where he got bumped (by me, ugh!) and fell over and eventually needed the stress dose steroids, oral, at least, before he was back to normal. Always a little chaotic - but he came back around. I just got off the phone with Endocrine, too. We are going to run chemistries one more time and see if we need to just adjust one of the steroids to help him out with his Sodium. We'll get labs drawn tomorrow up at CHOP.
Just a few more pics to fill out our Spring Break Story. We made it to the Oil Ranch with Elle's friend Sydney for some kid fun, and then Elle and I went to the Rodeo! Thanks to Sheri and Caley for asking us and for the great seats! We saw Taylor Swift. She's kind of an impressive 'kid'! I love it that she writes all her own songs and plays guitar. The girls were in heaven. The girls actually got to stand right up against the gates for most of the show. It was over the top!!! Then, on Saturday morning, I was a good citizen and renewed my CPR/First Aid knowledge for Girl Scout Chaperone duties.... The big udate is that you give 2 breaths - 30 compressions for all ages now. Easy enough to remember. You now don't have to check for a pulse, or give breaths to a stranger when you don't have a mouthgaurd - compressions alone should suffice. Just a little FYI if you haven't had to take a class lately!

Kathy - we picked you a up a little something at the rodeo (early b'day), but the guy next to me accidentally dumped his beer all over my chair! So - I had to throw it in the wash - sorry!!! I was terrified I'd get pulled over, smelling like a brewery, (with a headlight out by the way), but luckily I made it all the way home without having to prove myself with a breathalizer! I wasn't sure the cop'd believe me - but I only had one!

We are praying for good news on Wednesday, specifically, continued NED status with more clean scans! We are also praying big for Erin these days. Apparently she had a little bit of a rough weekend - we can't stop thinking about her! Patrick starts (Round 4?) of Topo/cytox this week. Again - hoping for great results! Thanks for your prayers for these kids!

Love, Lara
I'll post news when I can on Wednesday!

just because it's been a while for pics, here are a couple

Hans has been getting the most out of the play structure, and his dog in our pretty Spring Weather. He is now on Day 7 of Round 2 of ABT 751. He is doing better. Yesterday we were able to do a big bike ride while Kevin and Elle were at the driving range - and then he had two playdates. One at the park, and then one at Alex's house while I went to the Houston CNCF meeting. He is doing pretty great, afterall. Thank goodness. We are just figuring out what to do today, and I thought I should share some Spring Break! pictures. The one with Kevin and Hans is from our Chili's night a few weeks ago. Also, Elle saved up for a camera and has been taking pictures of all the flowers she finds in bloom. We DO spend A LOT of time on swing sets!
Haven't heard from Endocrine yet... We'll keep you posted. We are heading up to CHOP on Tuesday!
Lara

Join the World Community Grid to Unlock the Mysteries of NB

Hi,
Just for a quick update - we are off to a not-so-hot spring break start, but we are hoping it's improving soon! Saturday was nice but cold and rainy here, and then Sunday everyone sort of fell apart around here. Elle got sick enough with a fever, and even some vomiting, to miss out on a birthday party. Hans SUDDENLY started displaying significant side effects from the ABT 751. Specifically, he didn't sleep at all Saturday night, he had that rough glazed over eye look, he was complaining of leg pain (neuropathy), he couldn't eat and he did get sick once. We were terrified that the ABT 751 was starting to get to him (and yes - the greatest fear is then that'd we have to take him off of it), but then he was better yesterday and today.

He slept well and has been able to eat and keep things down. He has had bike rides and a park playdate today. So - let's hope he can continue to handle ABT 751. Also, he went in for counts yesterday. His Potassium was better at 4.0. But, his Sodium was lower at 130! So, we got bounced back to Endocrine for advisement. I am just not as smooth at working the Endocrine system as I am now at the Oncology System - so we are waiting for a consult to see what if anything they'll do about the Sodium??? Meanwhile Elle was on the mend yesterday and today - but just got sick AGAIN! We feel like we are running a hospital around here.

Oh - I wanted to share something with you - you can sign up to be a part of the World Community Grid I am cutting an pasting, below, an email I recieved thru the NB Listserv about this very cool "space aged" project to help you solve the problems of NB.
Hello All,
I am forwarding an email I received through LISTSERV. Please, take a close look and see if you can enroll your computer to work as part of a network that tries to match around 3 million drugs that could influence several proteins found in NB.

It is as easy as signing-up, downloading a piece of software, and leaving your computer doing the job during the night (or any unused time). Please, visit http://www.worldcommunitygrid.org to learn more. There are many causes using this approach, please check the one associated with Childhood Cancer that directly aims for solutions related to NB https://secure.worldcommunitygrid.org/projects_showcase/hfcc/viewHfccMain.do

The installed software will tell the main computer that it is idle (while you are sleeping or not using it) and then it will be assigned a job. In simple words, when you are not using your machine for an x number of minutes, it will tell the main computer "hey, I am sitting here doing nothing, do you have something for me to help you with?", the main computer will send it a small job to perform and your machine will run it and provide the results.

The impact of enrolling your computer is high, one super-computer could take up to 8,000 years to match those 3 million drugs and see how they impact those proteins. If enough people enroll, time could be cut down to two, yes only two years!!!

It is very encouraging, but as you know it is still incredibly slow when time to set up clinical trials is added and contrasted against survival rates for NB. In consequence I would like you to join the cause and try to enroll as many people as possible, your family, co-workers, friends, neighbors, anyone! How many of us leave the PC on during the nights? It consumes barely any energy and it will be helping to find new treatments.



Okay - I signed us up today and as of right now, my first project is 46.9% complete -according to my desktop. I thought it was worth passing on. I might just send it out to a bunch of my contacts via email and facebook???

Lara

Last Call...

I just found out our troop has 17 boxes of cookies to unload. Elle has sold 491 boxes, so with 9 more sales she's reach the 500 box point. Wondering if anyone needs more cookies? I could get them to you asap. I think the cookie mom is ready to deposit the $$$ soon and get the Council off her back! Thank you so much for all you've done so far. We have collected about 210 boxes for the RMH and are just waiting for the House Manager to call us back to nail down a delivery date and mini-tour! I am looking forward to the cookie drop off experience for the girls. It's not so much the project itself, but the idea that you don't have to be rich and powerful to make a difference. You just need to have a little heart, make a goal, and come up with a plan.

I can't buy anymore cookies - I am just too good at eating them! I got sooo good at it, in fact, that I was thrilled when Ash Wednesday rolled around and I had a good excuse to stop by giving up all sweets for lent. It is not exactly easy for me, but not too hard. It was great though, on NPR the other day, Elle and I heard a review of a kid band called Lunch Money, and they played a snippet of the song "I want a cookie as big as my head!" I think it's a pretty good theme for this Lenten season.

Hans is having his own Hans cravings. He has been powering through the chips and salsa. He can seriously eat a normal-sized bag of Tostito's in just over a day. We buy the Jug-sized salsa, and it doesn't last a week around here. It's crazy, but today we got chemistries back - a high (for Hans) Potassium of 5.0, and a slightly low sodium of 133, I guess his body just knows what it needs. So, we are adjusting his potassium supplement downwards, and salting everything for him. They want us to come back next week to make sure his numbers are doing the right thing. The good news: Liver panel was a bit high, but not too bad. We'll start Round 2 of ABT 751 tomorrow!

Lara

Cruisin Along...

Hi Guys,
I guess from our neck of the woods, no news is rather good news! It has been pretty gloriously normal around here. I get all kinds of mixed feelings about posting things like this - worried that I may be jinxing myself. But I'm just pretty much deciding that I will accept it as the new normal. For now, life is good! I sort of get the sense that I should think of this as a break, or enjoy it for now, but I am sort of refusing to do that. I am just hoping that Hans will be okay, and I'm trying not to worry about future scans. Isn't 'living in the moment' what we're all supposed to be doing anyway?

We have been... planting flowers:) riding bikes, wrapping up the basketball season (with 4 baskets Saturday!), soccer, a school carnival, girl scouts, beading, CNCF fundraising stuff, etc. etc. Just normal stuff and it's pretty sweet!

We have dates for our next set of scans. We will actually fly up to Philly on the 24th, and back on the 25th. We will only do the MIBG, and get the results from Dr. Maris on the morning of the 25th.

I wanted to share the flyer for our upcoming fundraiser garage sale (but it won't post, darn it!) You still have a few days to get things to me if you have extra stuff laying around! The garage sale is Saturday morning - and I will be there parts of the morning, and I am making a trip on Weds in the morning...

We have a clinic visit Thursday, where we'll check labs, including Liver Panel, to make sure that everything is A okay to start the next round of ABT-751. I'll try to post soon with pics...

Gotta run - check on screeching kids/playing with dog!

Lara

Status Quo

(photo pirated from Erin Buenger's Website: www.erinbuenger.blogspot.com)
Hey There -
Not too much going on here. It looks like we might just have a quiet regular week. Hans finished Round 1 of ABT 751 with only one side effect - a little constipation. So, we'll talk with Dr. Russell tomorrow about when to start dosing him with Colace for Round 2. We just don't want to start too early and leave him with the opposite problem. Very manageable.

We had a lot to do this weekend - two soccer games and a basketball game and the science fair. We actually let Elle miss her b'ball game since the science fair followed immediately. I just didn't want her to crash and burn!

Yesterday we were able to make a sweet little trip to Bryan to go see our friend Erin! Since she got the great gift of a Wii from a nice group of ladies, we thought we could at least bring her a game. She said she would like Lego Star Wars, which Hans and Kevin happen to be experts in. Hans and her had a good time playing Lego Star Wars and Elle and I were able to do a lanyard or two with Vickie. The sweetest moment of the visit, was the way Hans told Erin to "call me" if she had any trouble with a level. Hans enjoyed visiting the 4 dogs, and I think they liked him. He is truly beyond 'dog lover' and into dog whisperer territory. Erin was certainly sweet, but not feeling too spunky.

Michael B. made it safely through his surgery and is finally sprung free from TCH.

We are staying busy with a little bit of beading and some serious spring cleaning. These garage sales are perfectly timed so that I have no excuse to hoard stuff. I can move what I don't need...