Round 6 here we go...

Hi,
Just wanted to let everyone know that we did start Hans on Accutane yesterday! He is now on day 2 (12 days to go, but who's counting?). So far so good. His cold symptoms are all cleared up so he got the thumbs up from Dr. Russell. We've had a quiet week - but he's got a busy weekend/week ahead of him, so we'll hope he can keep his energy up and try to stay in a good mood and we'll see if we do it all...Friday night Astros Game, Sat. Amazing Grace Golf Tournament, Sun our friend Morgan's first communion party, swim lessons M and W, scans Tuesday and the bake sale Friday. When I list it out like that it does sound a little ambitious for accutane - so we'll just have to see how much we can do.
Not much else to report - so I'll make this one short and sweet for a change.
Matt and Anna and Emma - you've sure been in our thoughts and prayers lately - our deepest condolences on the loss of Matt's brother, Ben. Lots of love-
Lara and all

Happy Milestones

Hi,
I'm pretty pleased with our boy's progress as I write this post. Yesterday, we recognized Hans' 1 year anniversary of receiving his transplant. (We also recognized our 10th Wedding Anniversary)... a lot to celebrate and soak in. This past year has been more difficult than we bargained for. Hans is slowly starting to make some steps toward being the healthy, happy boy he has every right to be. The other day I signed him up for swimming lessons, and he was so excited he wanted to jump right in. He has also had a little more stamina in social settings. He has been enjoying little restaurant outings and being over at people's houses better. We were at Chili's one night when Kevin was out of town and Elle and I had to drag him out of there. On the way out, he said "that place is cool!" It was cute, because many times over this past year, he has been ready to leave a restaurant shortly after the food arrives. Which just translated to not getting out all too much.
Today, we took the kids to REI to get new bikes. At first Hans found a really big red trike and I thought we'd never get him on a bike with training wheels (he never took to his sister's first bike/hand-me-down). But I talked to the store manager and asked him to show Hans some of the bikes. We backed off, and the manager was able to talk him into a cute little blue bike with trainers. He did laps around the store for quite a while. As soon as we got home he was off to the park, we just have to help him get the concept of brakes.
Elle also got a very cool big girl bike. We took it for a test ride. It's sweet! She's so much faster on a big bike - it's got gears too... Now I'm going to be the one who has to keep up with her...
Okay - that's all, just thought it would be fun to post a little sweet news from around here.
BTW... That's Ryan, Hans, and Leigh Ann at the golf tournament...

Kevin's Back!

Hey there,
Okay - so it's been a couple days - I didn't even mention it, b/c I guess I've grown a tiny bit paranoid, but Kevin had his first major trip since Hans got sick. He was in South Carolina, off the coast of Charleston, looking at 'modern depositional environments' for the past 8 days. Hans really did well. His mantra, though, was "I'm having a hard time waiting for my dad to get back." He would just tell me that, but he didn't cry and get sad. I guess he thought I wasn't picking him up on purpose or something, because he kept saying things like, "Maybe Ryan's daddy could go get my daddy from the airport." We wonder if he thought his dad was just hanging out at the airport for 8 days, waiting for someone to come and get him.
Hans and I still have this stinkin' cold - so no Accutane yet. I heard from our nurse, Belinda, that Dr. Russell is going to call tomorrow to check in on Hans and we can talk about when we'd all be comfortable starting this last round!
Hans and Ryan had a great time at the Golf Tournament on Monday. His Grace Foundation sure knows how to treat everyone like royalty! We all got to ride around on golf carts, we got lunch, and the boys got some nice presents. We also saw Mark, Carlie's daddy, out on the course, and we also saw Leigh Ann, Serenity's mama. So that was neat and I was happy it went off without a hitch.
We actually don't have a busy weekend ahead of us - Kev will just be happy to have a day off! He brought home lots of shells.
Also, we got Scan Dates - we go back in on the 6th of May. Scans will just be one day this time.
Our dear little friend Chloe is experiencing some pain with her relapsed Ewing's Sarcoma. Please say a prayer for her.
Lara
PS - I did have a lot of fun finally watching Juno! I started reading that book Beautiful Boy by David Sheff about a father who tries to help support his Son through his drug addiction and now that's sucking me in. It's great to have a good book when you have a cold. You have a great excuse to just lay around and read!

Sunday...

Hi,
Just wanted to share that we had a special treat at the yard sale. Kevin's Great Auntie Irma from Everett, WA was in Texas, traveling from Houston to Dallas for a wedding and she was able to pop in on us and see us while we were at the Glen Loch yard sale. How fun to see some relatives, her daughter Raya was here too. Pretty cool! The yard sale went really well, I guess, some things I thought for sure would sell (power tools - blower and trimmer) didn't move, and there were still a lot of Hans' clothes left. People kept asking for sizes we didn't have. But, it was fun to do one, since The Woodlands doesn't allow them at your home, we have to wait until a school or group sponsors one...Thanks to Carmen Jim, Ginger, and Alana, who helped watch my space while I had to run up to Elle's last soccer game! Elle was picked up from the yard sale and taken to her friend Caley's birthday party at their Caney beach house! She just called me to say that she's going to try to knee board today. Fun!

On another, sad note, I learned yesterday that Baby Luke didn't make it. I mentioned him about a month ago. This beautiful boy braved his first open heart surgery one month ago at TCH. He was doing great, but then on Friday he went into distress and didn't make it. His mom, Bernie, is really about the kindest, sweetest person you could meet. Bernie did A LOT to help organize the Run for Hans, and she has been amazingly supportive and helpful to us last year. It'd be great if you could say a little prayer for Baby Luke's family today - they are surely facing some rough days.
www.caringbridge.org/visit/lukehaberman I guess you can copy and paste the link if you would like to check out his site...

Thanks, Lara

PS - Hans is doing okay! No Accutane yet, this cold is a bit nasty. We've both got it now and it's got a pretty yucky cough. Poor boy. Hopefully he'll get over it soon. But we just spent a lot of yesterday painting, reading, snuggling, napping and watching movies. I'm going to go rent Juno today - I can't wait to watch that movie...

A few Random things....

Hooray! I just heard the news - we have all 60 of the senators we needed to sign on to the Conquer Childhood Cancer Act! This is wonderful. But, I'm not sure if we're off the hook yet- we might still need a few more Representatives - so you may not have heard the last from me yet. Unfortunately, it wasn't Senator Hutchison that came around - but maybe there's still hope for her yet:)

It seems like there's a lot going on in the near future, here are some highlights:

If you're in the area - try to come out to the Glen Loch Elementary garage sale tomorrow from 7am - noon at McCullough Jr. High. It's a PTO fundraiser and we'll be out there selling some of our stuff.

Also - my friend Blair helped organize an Alex's Lemonade stand at Market street on May 3rd from 11am - 4pm. Their fundraising goal is 5K for pediatric cancer research.

We're going to hit TWO NB Fundraiser golf tournaments in the next few weeks- Carmen and I are going to make an appearance with Hans and Ryan at the His Grace Foundation Golf Tournament on Monday April 21st. I guess we get to ride around in a golf cart. I'm looking around for a collared shirt that's not too warm. I wouldn't want to get kicked out of the country club...

And then, on Friday May 3rd, we're going, as a family, to Baby Gracie's "Amazing Grace" golf tournament. We're not golfing - just going to join the group for lunch and support the event, and listen to Dr. Russell!

Finally, we're planning the next bake sale! The TCH Pre Mother's Day Cake and Bake sale is set for Friday May 9th from 10 - 3pm! I'm excited. I guess we set the bar a little high with the first sale. I think what ever we sell will be a wonderful contribution to Neuroblastoma research!

I'm probably missing something... but those are the main fundraisers I know about in the next few weeks...

Okay - Hans is doing just fine. He still has a cold - but he's on the downhill slide. He's been working on some more dance moves, so I'll have to put another tape together. He is eating like a horse, as usual. He is still very into his rotisserie chicken, but also loves fresh blackberries and green apples.
Elle has her last soccer game of the season tomorrow, but I think we've finally talked her into trying out Volleyball -so that's coming up next! That's it - I'll let you go now...

Lara

PS - Joey - Glad to hear you made it through surgery okay! Hope you heal up quickly!

Hair Cut and Some Pictures...

Hans got a haircut! it was a little rough - I swear he acted like getting a haircut was tougher than doing any medical procedure he's every been through! But he finally calmed down and now he cracks up whenever he sees himself in the mirror and says "I look like Ryan!" I was just thinking if I go short now, we won't have to send him back to the torture chamber for a while!
Other pictures get me caught up from my mom and Dean's visit: Kevin and Dean modeling hats; Carmen, Ryan and Michael inside video game; my mom and Dean shootin hoops, Ryan and Hans; my mom and Elle; dean and Hans in berry fields; power rangers etc etc playstructure party! (Taylor, Blaze, Ryan, Adrian and Hans; my mom and Dean; my mom and Hans at Dino Museum.

Follow Up

Hi again,
Just to follow up, we got in touch with Dr. R., and she instructed us to hold Round 6 until Hans is symptom-free. He had another little low grade fever last night and he has a heck of a stuffed up nose. Elle and Kev have it too....
So we'll just hang in there, hope it clears up quickly so that we can get Accutane going!

Lara

Monday...

Hi guys,
Sorry I left you hanging after Thursday's visit. It was FINE! Hans numbers are looking good, for the most part. His Hemoglobin is just a bit high. No big deal, I guess, like 14.3, when normal range ends in the 13's. All the chemistry's that can bother us are looking good. So, I guess this means that when we made the adjustment to his Hdrocortisone and Florinef dosage a couple of months ago it has done the trick to keep his sodium, potassium and hemoglobin in normal range. How nice!
Otherwise, the docs were very pleased with how Hans has tolerated these last two rounds of Accutane, especially after the fiasco of the first three rounds. It was all thumbs up. He is gaining a bit of weight, up to 14.3 kgs, but not doing much with his height. I guess in a couple of months I can start seriously bugging endocrine about this. Basically they don't know what all they've done to him in Bone Marrow Transplant... The wonderful and somewhat unbelievable news is the plan from here on out: Get Hans through this Round of Accutane, bring him back in for scans (just the CT and Bone Scan) in early May, and then no appointment for three months - when we scan again! Whoa! I literally asked the docs "You mean that's the plan even for Hans?" Since we've had so many unexpected problems, I actually thought they might still want to check on him monthly for counts... They just kinda smiled and nodded, and said that he does need to follow up with Endocrinology for life, but he only goes there quarterly right now.

Hans had a little party over here with a few friends to celebrate his play structure! It was pretty fun :) Hans has recently become a HUGE Power Rangers fan, and he was calling his little party his "Power Rangers Mute Force Super Marber Dino Adventure Party". The name of the party was just about longer than the guest list.

So, we started him on Accutane yesterday. We had a funny weekend because after Elle's soccer game on Saturday (go Dragons!) I got a little bout of Vertigo and I was literally on the couch from 9:30am - 5pm, feeling seasick! Crazy! Kev was golfing with a couple buddies and the kids were both so sweet about letting me rest, I think they knew it was all I could do. But, bummer, we didn't get to hit The Woodlands Earth day festival as planned. At least we were all better for Elle's Girl Scout Olympics on Sunday. She took Gold in the three legged race with her friend Kae! So cute! And then we joined Kids Unlimited at the last regular game of the season for the Houston Aeros (minor league hockey). It was pretty cool - the Aeros presented Kids Unlimited (a cancer kids foundation - basically a group that focuses on providing outlets for fun for pediatric cancer families), with a check for 5K last night!

But, ugh, Elle has had a stuffy nose, and then last night I noticed Hans has a bit of a low grade fever. This is a potentially scary event with his Adrenal Insufficiency. So - we went ahead and dosed him with stress dose Hydrocortisone and
are giving him Tylenol. Now, I'll call the clinic this morning just to make sure they want me to proceed with the Accutane, or wait until the fever passes...

Okay - that's it for now. I'm hoping to get pictures up soon.

Lara

Wow - it has been almost a week

Since I posted. I guess we've been busy - time sure does fly when we're OFF Accutane. We still get to enjoy this week and then start up (the 6th and final!) round of Accutane on Saturday or Sunday. Hans has a clinic visit on Thursday. I'm curious to see how he's doing on his height/weight - so I'll let you know. He has been doing fine! He had nosebleeds a couple times one day and he has been taking more naps lately, but I think that's all normal kid stuff. But, it'll also be nice to see his counts on Thursday. He has been fully enjoying his "park" - going out there several times each day. It was cute though, the ladies from Make-a-Wish came out to snap some pictures and I was prodding to get him to say thank you. And, he pretty much flat out asked when he was going to the Rain Forest and to see the Volcano! Hans I guess thinks he should get two wishes! Why not?

We had a whirlwind of fun with my mom and Uncle. We got ten pounds of Berries at The King's Orchard, went to Chuck E Cheese with some friends, also went to the Dinosaur museum, and once again hit Johnny Rockets. We got a few requisite pictures of Hans in a field of Bluebonnets (a Texas thing - Elle was off at school), and then before we knew it - it was time to take them back to the airport. I'm glad they were here it was like getting two Spring Breaks!

I need another favor from all you Texans out there - please send one more email regarding your desire to have Kae Bailey Hutchison sign on to the Conquer Childhood Cancer Act- only this time, please direct it to her Legislative Aide in charge of Health Care issues. Her name is Ms. Cameron Krier, and her email is cameron_krier@hutchison.senate.gov your email can really be short and sweet - go to www.curesearch.org for ideas. We are very close to getting the 60 Senators we need -as of yesterday there were 58 signed on to the bill. We just need two more, and I'd be pretty proud to have Senator Hutchison as one of the last two to sign on. I just made a PowerPoint presentation for Ms. Krier and Ms. Hutchison just to illustrate why one family needs that bill signed. If I can figure out how to post it, I will, if not - if you email me at kevinandlara@hotmail.com, I'll share it with you!

Have a good week -
Lara

Wish Granted!

Hi,
This is our exciting news. The "worker guys" were here yesterday to build Hans a play structure. Wow - we are totally excited. What a cool thing. It's all thanks to the Make-A-Wish Foundation. We decided to go ahead and change out Hans' wish from a Costa Rica Adventure, to a play structure. Kevin and I came to this decision somewhere after the hospital runs in November, and as soon as the kids got on board we officially changed the wish. Now we get to enjoy it for years and years! We'll just have to do the rain forest/volcano trip on our own someday.
Thanks Make a Wish and all of its supporters. How wonderful!

We are off to enjoy a day of berry "hunting" and Chuck E Cheese. Pretty cool. We're already enjoying my mom and Uncle Dean's visit quite a bit - more pictures later!

Lara