Thank You's

I want to thank our Neighbors, our friends, our fellow soccer families of Texas Rush Swoosh Pool U11 Girls - Go Blue! Go White!, friends of our friends - especially friends of Michelle and Sheri, I want to thank our fellow NB mamas, and everyone who had Continental One Pass Miles to donate. Thank you. And, thanks to Michelle, such a dear dear friend and neighbor, who coordinated this second miles drive. I think we hit 300,000 miles - which is about 12 tickets to Philly! Thanks, guys. The good news is that I actually think it will be EASIER to try to use Corporate Angel Network while using miles. The thing is, you have to have a back up plan - another plane ticket to fly CAN. Miles are ultimately flexible and there are no change fees. With flying CAN you usually have to have very flexible departure and return dates. We are just flying so frequently now, that it doesn't really pay off to spend extra days in Philly to get a free flight, you know?

To other cancer families - if you don't remember me mentioning it, Continental's CAREFORCE problem is an excellent way to go if you've got someone willing to organize a miles drive. It's free for people to donate miles, and they are free for you use with no change fees.

If you have OnePass miles, or know someone who does, and you are willing to donate some of them to sponsor part of one of our tickets to Philly - you can email michnolen@earthlink.net. Thanks! Flying every 6 weeks now is getting a little insane!

On another note... St. Baldrick's is coming up! St. Baldricks Foundation, Shaving the way to Conquer Kids cancer is an international program. My friend Shannon is coordinating the local Shaving for Seany event and right now Kevin's signed up to shave for a cure. Sean is a local adorable boy who has beat Rhabdomyosarcoma! Go Sean! Shannon helps me out with the NB bake sales by going all out with tons of huge heart shape cookie cakes. She's awesome. The event is set for March 14th at The Goose's Acre here in The Woodlands. St. Baldrick's is a foundation that raises funds for all pedi cancers. Hans' favorite fellow Dr. Nino "my buddy" Rainusso is funded by this organization. Dr. Rainusso will be at the event and Shannon is doing a great job organizing it. So, if you want to come out and watch a few people go bald for a cure, or if you want to shave, or if you want to sponsor Kevin, go to www.stbaldricks.org

Thank you -
I'll try not to hit you up for anything else for a little while! That was a lot today.

Little Hansie Tidbits

Hello, I have a lot of random bits of thoughts on my mind today. Hans is having a little eye pain this morning again, now on Day 8 of Round 4 of Millennium. It's getting better after dosing him with Tylenol with Codeine. We are hanging out in the living room with all the shades drawn so the light doesn't affect his eyes.

Hans is funny - here is a pic of him last night. He wanted to serve us broccoli for dinner, but he didn't want to have to be bothered by the smell, see his solution.

I tried to upload a cute video of him dancing to Big Time Rush - his favorite song. Hans really loves this song and cannot hear it enough. But -the thing failed. Sorry.

The other day we were picking up our Girl Scout cookie order from our friend Lucia. I left Hans in the car with his favorite song going - Big Time Rush is loaded to his sister's iPod and we listen to it a minimum of three times in a row. I left Hans in the car with it playing (at a moderate volume), I parked by the garage and ran to ring the bell at the front door. Hans turned the volume up to 11. Apparently he was all-out dancing in the back seat. Lucia had been in the back yard. She heard the music blasting, she told me she wondered - who's here? She has a few teenagers at home and figured it might be one of daughter's boyfriends. She was surprised to open the gate and find Hans rocking out in her driveway.
I am trying not to eat toooo many girl scout cookies these days after pick all of those cookies up!

Hans also has a lively imagination these days. As we watch the Olympics Hans makes up stories to go along with it. When we were watching Ice Dancing, he says, oh, I used to do this, when I was 3...with this girl Emma... I'd throw her up, and let her catch herself.
He also has been telling tall tales about Grandpa Oscar. He has been repeating this story that he and Grandpa Oscar like to go out into the woods and feed the bears raspberries. Hans is a trip.

He has been working hard with Ms. Kathy. I can't believe how much ground they can cover in their sessions. He works really hard and we feel really fortunate to have her and these special one on one sessions.

I need to talk more about another Continental OnePass Miles Drive to help us get up to Philly without breaking the bank. I also need to talk about this year's St. Baldrick's Event -but I'm sort of tired from a day at clinic. Hans is holding his own but his sodium was pretty low for him at 131. His other counts look okay, but we'll probably be a little freaky about him being out and about since we have to presume they are still dropping. Clinic wasn't too concerned about Hans' eye pain. So, I hope that's a good sign???

Thanks for checking up on us today.

Lara

Chase

Remember me mentioning our new little friend Chase up in Philadelphia? I learned yesterday that he lost his battle to NB the night before last. It is amazing how fast this disease can take a child. Chase's mom - Tiffany - had gotten the bad news the day after I met her - widespread disease - overwhelming - when just THREE MONTHS earlier he had achieved the golden 'second remission' status.
I just wanted to mention him because he was a really cool little kid. He was so positive and so happy. He just wanted to play and be a kid - Tiffany and Chase had that special, undeniable connection...the connection that you know what they have had to go through together...the joy they shared in the simple moments of the day...the perseverance. And I really only knew them for two days. But, I love them, and I am thinking of Chase and Tiffany today. Praying for them.

New Normal Week

Hi,
We had a full weekend. Kevin and Hans got back on Friday morning. Elle headed in to school and we hung around. We were going to make dinner plans with another friend in Houston, and then decided to chill out here. Good plan, because Hans started throwing up!?! He just did twice, which is unpleasant for anyone. But, for Hans with his adrenal insufficiency, it can get serious very quickly. We were pretty sure somebody would be taking him into the ER. But, we got a fresh prescription of Zofran, and watched him carefully and somehow dodged that bullet. He is doing well and today is already on Day 5 of Round 4 of Millennium. He'll go in one day this week for counts. And he'll do the home school thing with Ms. Kathy. We don't know if the nausea was more from the meds, from the flu shot he had gotten late Thursday, or just from being pretty messed up - waking up at 4am on Friday to catch an early flight. We'll never know. We are just glad that Hans is doing okay.

We just did a lot of hanging around, talking, eating. The guys took Honey to the park while Elle and I spent all day Saturday at a soccer tournament and half of Sunday too. We were in Sugarland. Three games - two losses, one tie. A lot of good sporting fun! Sunday wasn't so fun though. E got nauseated on the drive down, probably because she had just taken the Tamiflu....so, more puking! Argh. She didn't feel like playing because of her hurting tummy, but she went into goalie at the second half. And then Center Forward. Those were her two positions for this weekends soccer games.

Meanwhile, my friends Charon, Athena and Vickie handled a huge Bead-a-Thon (without me) here in the Woodlands. The ladies of the NCL set up a 70-plus volunteer beading event and I hear it was pretty fun and went well. Thanks all around. I was sorry I couldn't be in two places at once!

Sam left back to Alaska on Saturday. We're glad he could come out. He got some great shots of Hans. If you haven't realized, Hans is VERY resistant to posing for pics when we are behind the camera. Glad the idea of fresh blood worked.

Thanks for checking up on us.

Lara

Shrinkage!

Hey - sorry for the radio silence! No real reason.
The good news - it seems that Hans' gut instincts were dead on the money.
Shrinkage aka there is still a little bit of a spot on Hans' skull, but it is a little bit better.
I was hoping we'd have this spot wiped out by three rounds, as you recall, but I'm still putting this in the 'good news' column for sure!

We're forging ahead with Round 4 of Millennium. The guys are up in Philly and are coming home soon. Hans and Kev just figured out the fastest way to Toys R Us... via Subway. They will be home soon.

In the mean time, Elle tested positive for the flu, yesterday, so it is good that I am here with her. We have a visitor, Sam, our buddy from back in the day, who extended a conference trip to San Antonio from Alaska to hang with us. Wish he could have brought his lady Christie and baby Gus along! We shall have some good times.

Thanks for checking up on us. Glad to spread some good news!

Lara

Will Scan Next Week

Just to let you know - we didn't wind up getting a spot on the MIBG schedule at TCH this week. Bummer, but I sort of had a feeling that wasn't going to happen. We have appointments for next week up at CHOP - so we'll see how it goes. I am hearing reports of more snow, so who knows...

Kevin's bag made its way back home:) We were actually surprised by how quickly it got back here.

I took Hans in for counts yesterday. He is doing great counts-wise - he had a strong ANC of not quite 3,000. A HBG of 12.5 and plts of 326. I guess that's the other 'up' side of delayed treatment - a kid who gets to feeling pretty great with an extra week off chemo. His chems have been fine, but we've been giving him two Potassium supplements a day since we started to notice it drop on Millennium. He actually doesn't like taking the huge pills, but he does okay.

Hans is really making progress with Ms. Kathy. He is starting to get some sight words down, so now he's starting to read sentences. It's pretty exciting! They take little breaks and he likes to beat her at games. He has been kicking her butt at 'Art Ditto' (a famous artwork memory game fr cousin Erin) and every time he makes a match he practically does a touchdown dance.

It's still cold here - but I shouldn't complain b/c we're definitely not buried under 30 inches of snow. Elle is on a Girl Scouts adventure tonight to an Observatory at State Park.

Oh, PL - Hans and I actually end up doing a lot of the paper airplane-a-day pages together. It's sort of hard, but fun. Thanks, that was a neat find.

Where do I start?

Success, Fiasco, and a great loss all in one day.

Success in the bake sale. We had ten full cafeteria tables full of yummy baked goods - sorry - I didn't manage to get a pic!
Success in the fact that many of our clinic and West Tower friends were able to pull themselves away from their hectic schedules to support the sale.
Success in that we sold about 30 lanyards.
We brought in almost $1900 for the CNCF.
Thanks to all the many NB and TCH mamas who came down to work the sale: Shannon, Charon, Mayada, Virginia, Sarah! Thanks to Mike and Athena for gathering up and delivering a carload of baked goods from their friends. Thanks to Tamiko, Michelle, Matilda, Carmen, Ginger, Dana, Lisa, Debbie, Ingrid, Dodie, Kim, Anne, Laura, Amy, Kay, for baking for us! As well as Charon and her friends, and Mayada and her friends. Please let me not have let anyone out!!!!
It's amazing to see all that good stuff lined up. Thanks again to Laura at Comfort Cookies.


Fiasco - let me tell you that Kevin and Hans were going to go it alone for a guys trip to Philadelphia for scans yesterday morning and the universe converged against this happening. I think I'm going to give the WHOLE story here, both so that I can remember the lessons learned, and so that I don't ever have to tell it - DRAMA!
First off - I must have turned off the alarm in a deep cycle of REM sleep that was set for 4:45. I was sure it was properly set - I triple checked it - yet, we failed to have a back up cell alarm set (Lesson one - set 2 alarms for an early flight!) (Lesson 2 - leave more time, duh?)
Kevin woke us up late, but we made it to the airport with 40-45 mins before take off.
With a light line, the guys would have been fine.
However, Hans instantly had to use the rest room.
Kevin made it all the way to the security checkpoint three terminals away (from Term C to Term E)
when he realized the machine hadn't spit out his boarding pass. (Lesson 3 - always triple check that you've got each boarding pass in hand, don't just walk away with what the machine spits out.... which was, in this case, Hans' boarding pass and a baggage claim ticket... One of the employees later told Kevin that the boarding passes get jammed in there all of the time.)
They tried to get him checked in at a nearby ticketing station, but he was locked off due to being too close to the time of departure. The lady tried to help, seeing little bald Hans there.
No one picked up the phone at the Ticketing Desk. The only option was to go on foot, three terminals back, to the check in, and get a boarding pass. But time ran out and the plane had to leave without them. They didn't make it on. However, Kev's big duffel did. So now, his favorite belt, toiletries, the PS2, as many Bionicles as Kev could cram in, a total of 44 lbs of winter dude gear is already up in Philadelphia. We have no idea how it'll make its way back to us. Normally, if it wasn't for the massive winter storm blowing in with about 19 inches expected to bury the Eastern Seaboard, they would have just hopped on the next flight. But, all flights were cancelled but a 12:30 flight - which the guys would have to either fly standby or upgrade to first class. I told them to use our miles to do this! But then, I called CHOP and we realized they'd just land too late. On that flight they wouldn't get to the hospital until 6pm and everyone from Nuc Med would be gone, so he wouldn't even be able to get the injection necessary to make Wednesday's scan readable. (Lesson 4 - I guess we need to give up on the idea of flying up on a Tuesday morning and back on a Weds night, we're going to have to go with flying in on Monday night! This puts us in tooo late to check into the RMH though!)

So, then, I had to get Elle home so she could make it off to school - she actually had an early appt/audition at school. I also had to load my entire car with baked goods and get to the sale. Insanity. I couldn't even pick up my guys stranded at the airport. Luckily, our friend/neighbor Mark was off that day and was able to go retrieve them! Thanks, Michelle and Mark for rescuing us, and saving us the cab fare!

Now what? TCH was unable to move the necessary mountains to get Hans on the schedule for an MIBG here this week. So, unless I get a call around 1 - 2 today that TCH had a no-show or a cancellation for an MIBG, we'll be going back to CHOP next week for the scan. The biggest part of this fiasco is that Hans can't start the med until he has another scan. Hard to swallow! We feel pretty culpable! But, the glass half-full part of my brain, is telling me that maybe they avoided a real unforeseen
disaster by not flying directly into the eye of the storm.

Great Loss - The world lost a great man yesterday. Erik Ludwinski battled NB once at the age of 6, then he relapsed thirteen years later, while in college. He beat it again, and it came back again. He has been fighting four years since his relapse. He and his mom, Donna, have provided great inspiration to all of us in the NB world. I've never personally met Donna nor Erik, but we heard Erik speak at the 2007 NB conference in chicago. He was awesome. I am once again struck very hard by the fact that the impact of loss of this one is incalculable. Donna has proivided me with both inspiration and direction through the ACOR listserv (our online parent support and information list). She was one of a handful of parents who took time to reach out and share experiences with me when Hans first relapsed in May of 2008. For her kindness and insight I am forever grateful.
http://www.caringbridge.org/visit/erikludwinski

I guess I better sign off and pick up this place. After a jam packed Monday and Tuesday - it sort of looks like WWIII around here!

Lara

Sweet

Hello,
There is a lot going on - but I'll try not to be too long!

First off - I need to say THANK YOU to all of my volunteer bakers. It's wonderful to hear how the word gets out for the big bake sale. A lot of first time bakers are joining into the mix. I am making great use out of one Christmas gift - my as seen on TV Perfect Brownie Pan! I love it:) I'm on my third batch of the morning already. Thanks Elle, and mom. The big sale is tomorrow. Can't wait to see how we do. I see these bake sales as a pretty simple and pretty easy way for families to contribute to the CNCF and make a difference. Even families caught up in the midst of treatment can give all or part of a day to bake or work the sale, can recruit a few or a ton of friends to do so as well, we can all chip in and all those little contributions add up in a big way. I do hope we are able to hit the $10, 000 mark for our four bake sales of 2010. We shall see!

I got a very special donation of cookies from a Sweet bakery in Vermont: Comfort Cookies http://www.comfortcookiesinc.com/ if you're up there - stop by and say hi to Laura. I think she'd be happy to give any kiddos on their way to Doctor Sholler a cookie or two! I guess it's not too far out of Burlington. Thanks so much for the 100 beautiful cookies! YUM! Laura is a friend of Vickie B/ Erin's mom. That's how I got the hook up!

We had a special invitation this weekend to a place outside of Brenham, Texas called Camp Periwinkle Family Camp at a place called Camp for All. We joined about 8 other families for some fun. For some reason, Hans was a little hesitant about going for the whole weekend. So - we wound up scaling our visit back somewhat from the others. We went for a very full long fun day Saturday. The others spent Friday and Saturday nights out there. Our trip was long enough to include some canoeing, horseback riding, a little bit of a low ropes course, two meals, and a BINGO night! I hope I wasn't too obnoxious as I won the big Black Out. Elle and I get a little competitive! So, sorry to the other families if we got out of hand! Hee Hee... We did a neat "Wish Float" ceremony and saw some fireworks. Then, Elle was watching a movie and Hans just said he had to go back home! He said he missed his pets too much??? Ah well, we loaded up and headed out, and I was actually happy to be home for the big day when we woke up Sunday. I am sure there is so much that goes into a weekend like that behind the scenes. I'm always so impressed at what people are moved to do.

I had a lanyard meeting and workshop all the way up to the Superbowl. Kevin was rooting for Manning and the Colts - Elle was rooting for Saints. I decided to root for the Colts - poor Colts - I think I'm jinxed. I'm always rooting for the losing team!
You could certainly argue that the Saints deserved that win. That town in going to be crazy right up to Mardi Gras! I think I'm starting to get a cold - so we didn't even drag ourselves across the street to our neighbor's Super Bowl Party! We just lazed around in the study and I think I watched more of a football game than I ever have in my entire life.

Hans has scans on Wednesday. I was actually talking to him a little bit about it. He is doing so well these days - he actually said that he thinks the spot is still there on his head, but just a little bit, a little bit better! We shall see.

Thanks for your thoughts and prayers. There are so many kids on my mind these days... Erik and Sam especially... Chase, Colby has scans coming up, and Mikey just had them. Patrick is doing really well!

Lara
Every Day is an Adventure. Every Day is a Gift.

Update

Sorry - didn't mean to go so long b/w posts...

Hans went in for counts yesterday and it looks like all is okay. We forgot to get Chemistries, but the ANC is back up to 1600! Yay! He can have a life again. And the HGB and Platelets are also just fine. We are sooo lucky not to need any transfusions on Millennium.

Hans is doing school right now with his teacher. She says he's sooooo smart! We already knew that, of course, but the validation from an Educator is reassuring:-)

So, That's about it. Elle is still supposed to post, but that kid is kinda busy. And, I think my computer bit it over the weekend - so we are down to one laptop!?! Who knows, maybe Kevin can save it! He has before. Now Elle has added two extracurriculars to her before-school schedule, so we really have to be on our toes. She's doing Student Council, and a program called Ambassadors, which I think is kinda like the 'natural helpers' program when we were in school. Soccer is in full swing, but Volleyball wrapped up. So - at least we get a breather there.

I'll post more, when there is more news. Or, Elle will!

Thanks for checking up on us. Hans helped me post flyers for our bake sale. He was a very good helper!

Lara

PS - Thanks Nurse Natalie for meeting up with us yesterday! Thanks, Nurse Randa for helping me post flyers. TCH has the best nurses and staff! We love you!!!!