Accutane, Round 5 Complete!

Yay! Can you tell we're excited? Round Five is complete and now we get to enjoy two weeks off the stuff before the last two weeks of Round Six. Hans actually seems to start doing better on his second week. So his skin is looking a lot better right now. We're really just happy that he has been able to handle it, despite its challenges. I saw an article yesterday that Accutane is also being used a bit for other adult cancers, to prevent relapse as well. That was encouraging. We're really doing this for a reason!

We have one of those rare weekends without tons of places to be. It has been actually quite nice. We're trying to have a marathon work party in the back yard, enjoying spring and getting ready for Hans' surprise...I'll share more in just two days! Elle and I had fun taking a trip to the garden center for some annuals and starts for a little herb garden and some tomatoes. We also picked up a few seed packets - zinnia, sunflowers and pumpkins. We'll see how that goes. The last time I tried Sunflowers here, it was like it my special treat for the squirrels. It feels so good to be doing normal stuff! At this time last year we were in very different/rough place preparing for BMT and getting over the shock of the second surgery and all of its complications and that terrible second line infection... Needless to say our yard was pretty neglected. So, we've had our work cut out for us. But Kevin and Hans had to take a trip into the office yesterday - and Kevin has been studying well logs - oh well. (He is a Geologist for Marathon Oil Co., with natural gas wells in the Anadarko basin of Oklahoma if I have never mentioned that before.)

On another note - my Aunt Michelle, up in Seattle, just got through a Rotator Cuff surgery. Those are tricky! So - I'm glad to hear that she made it through the surgery well and is now on the road to recovery.

More later -
Lara

Day 12, already!

Hi,

Hans seems to be taking this round (of Accutane) in stride so far. His skin looks a little bit better today, less red rash, a lot of peeling places... He has been a pretty good sport. I'm glad there's a light at the end of the tunnel, though. We're only on for two more days, then off for two weeks. It'll be perfect timing b/c my mom and Uncle Dean are coming up for four days next week during her spring break. I'm very excited. I can't wait to take them for the best hot fudge sundae I have ever tasted (at Culver's), and my Uncle is also planning to treat us to Chuck E Cheese. Hans is also getting another great surprise on Tuesday - but I'm gonna leave you hanging for a couple of days on that one - more next week!

I just want to give a couple updates or "shout out's" My friend Dana is having a tumor removed on her neck this Friday. We are praying it is benign, as the doctors believe it will be. But Friday will be a rough day for her and her family. Also, my friend Bernie, from Little Saints Preschool, had precious baby Luke two weeks ago. He was born with a rare heart condition and has already endured open heart surgery. I was so thrilled to hear a couple of days ago that they now have a room on the Cardiac floor, and are no longer in the ICU. He is doing so well! Finally, I just heard from my friend Kelly that she has finally found a chemo cocktail that is producing SHRINKAGE of her relapsed breast cancer! Hooray! It's a little crazy how many people we all know are facing traumatic health situations....

On a lighter note, Carmen forwarded this picture to me from the Houston Rodeo and Fergie Concert Last Friday... Like I said, it was fun!

Lara

Happy Easter!

Hi,

Happy Easter to everyone. We had a pretty nice day - the bunny was here to hide a few eggs, drop off some candy and give Hans a PowerRangers T Shirt and Elle a swim suit. Then Elle and I went to church (we still leave Hans at home with daddy when we go...) I'm trying some French recipes for dinner tonight - Chicken with 40 cloves of garlic!, a potato casserole, and made my Grandma Tynne's Pineapple Jello Salad. We actually couldn't bring ourselves to put in the entire cup of mayonaise and heavy whipping cream it called for. I have a feeling it'll be almost as tasty though!

For a little more spring break fun we went to the Houston Aeros game on Friday night. It was a first for all of us but Kev - (Aunt Holly used to take him to the Seattle Thunderbirds, I guess). It was tons of fun. Hans made it through the entire game.

Here are a few Easter Pictures. I tried to get one of Kevin and Hans, but we didn't get a good one, so I'll have to snap one of those later.

Hope your Holiday is happy!

Hans continues to chug along with his Accutane. We've been cleaning up the back yard this weekend, but I had to cut it short yesterday and just bring him in. It was kinda warm, and Hans was getting blotchy red rash spots all over his face. Last night he also said that his arm hurt, but he did manage to sleep okay. Bone pain is listed as one of the top ten side effects of Accutane. Poor little dude - it's nasty stuff. We're just praying that it does its job and keeps relapse away!

Oh - if you're in the mood to buy some really neat original art, or prints, please check out this website www.noelledass.com. My friend Shelley forwarded it to me. Her friend Noelle does animal prints and she gives 15% to the charity of your choice - so buy some art and select Lunch for Life! The artwork is really fun and precious!

Finally - our one and only babysitter and future pediatric Oncologist, Courtney Sweebe, chopped of her goldilocks for Locks of Love this week. I tried to get her to make me a wig of that pretty hair, but I think she thought I was kidding;) This is one sweet kid! Thanks Courtney - Pictures above..

Catch ya later -
Lara

PS This was Miley - the little doggie we called Emo and took care of over one weekend!

Accutane, Round 5 Day 5

Hi,

Well - it's been kind of a crazy week around here. I was in a ton of pain and got my first Root Canal. Yuck - don't recommend it, but it wasn't that bad. So - it was kind of a "lame" kick off to spring break - but we did try to squeeze in a little fun. I took the kids to the movie - Spiderwick Chronicles. I was thoroughly impressed that Hans was able to do it - his first movie theater movie since Diagnosis! That was exciting! Kevin got us free tickets to the Houston Rodeo and Fergie concert. We didn't think Hans could handle the whole nite of fun, so Elle and I took Carmen and Michael. I was so glad they could come! We had way too much fun. It was pretty exciting that there were two cowboys from Ellensburg, WA in the roping competition (that's Kevin's hometown), so we cheered for them really loudly! Fergie was a lot of fun. Elle used her allowance money to buy a Fergie t shirt. The kids also saw some of the cows and bunnies and rode the roller coaster.
Today all four of us went back down to TCH to go to a parent meeting. It was interesting - on all the arts programs that are available through the Cancer Center. The neatest thing we learned about is a songwriting program called Purple Songs Can Fly. A woman helps patients write and record their own songs in a one hour session. The coolest thing is that Continental Airlines just arranged their In-Flight selections to offer some of these songs for their passengers. What a great treat if you're flying Continental - but, dang, don't forget the tissues... Some of those kids' songs are pretty powerful. We also had a unique opportunity to pass out some cookies! I'm sorry - it was so crazy (Hans' wild emotions on accutane - we'll blame it on that;) that I didn't even get any photos. First, Hans really enjoyed passing out cookies to his main staff helpers in the clinic, and he did buy that case of "Thanks A Lots" himself. He loved that part, and Elle and I were able to pass out some of the prayer and rosary bracelets we've been making to our staff. It was pretty cool to give them a little something sparkly to hold on to after all they have done for us!
Then, we went up to the 9th Floor/Cancer Treatment floor. We had purchased a few small toys to pass out too. Kevin and Elle were having a blast passing out the cookies and then Hans and I joined up - and poor Hans had a pretty rough time separating with some of the toys we brought up. So, Kevin whisked him off. Elle and I found a super Ronald McDonald House volunteer who handled the rest of the distribution for us. She also posted a sign in the family room that the cookies were donated by the families of Hans Weberling, Erin Beunger, Colby Ash, and Malachi Schaeffer - thanks so much to everyone for your contributions. We also took two cases down to the 8th floor/ Bone Marrow Transplant. Oh, that place is a pretty rough place to be! We were thrilled to be back there just contributing a little bit. It really used to perk up our day quite a bit when some person or group would sweep through the floors with a treat.
There are other things I want to share - but I'll save it for the next post. This one has been so long. Hans is doing okay on Accutane. It is certainly difficult in that impacts his behavior (irritability is a very common side effect), and our lifestyle. We have to keep him indoors a lot during this completely gorgeous spring weather, and it feels almost criminal! His face is starting to peel now at Day 5. But, one thing that has made it easier is that we did upgrade Hans' hand-held video game system from a Pre-K "Leapster" to a Nintendo DS. It's kinda crazy that he knows what to do! We didn't even think he'd be ready for it, but when he kept stealing Elle's - we figured it was time.
Okay - more later. Thanks for all your prayers for Hans and all of his NB and TCH buddies. If all goes well, we'll be off Accutane on April 26th and at that point we'll be considered to finally be "off treatment".
Love, Lara

The Scoop

Hi,
Hans had his monthly check up today- I guess everything looked good. His counts were normal and he'll start back up on Round 5 (of 6 total) of Accutane this weekend. Kevin had to take him - I'm kinda messed up with a dental problem and I'm on antibiotics. I hope they can take care of it by mid-week next week. It was GREAT that Kev was able to get him into that appointment. He has just been working around the clock with a well, and a quick trip to Oklahoma. It'll be nice to have a relaxing 3-day weekend, and then he'll take a day or two off for spring break next week, we hope.

Hans has generally done well being Off of Accutane. He had a few hang ups, though. We tried to attend our Nurse Practioner, Shari's, going away party Tuesday nite over at the Scasny's (Family of TCH NB Angel Baby Gracie - I hate that we never had the opportunity to meet her, but people still talk about her with GREAT love and fondness, they lost her just weeks before Hansie was diagnosed), but Hans just threw a little fit when we got there and refused to stay. Elle and I were pretty bummed (Kev was up in Oklahoma overnight for a meeting), but there was really no staying - when Hans digs his heels in and doesn't want to do something - he can be quite a little bear cat! He also had a little episode like that over trying to sit in on a little tumbling class with Roman this week. Hmmm... He's not quite the "joiner" his sister is. I'm sure I could spend thousands signing my girl up for stuff! My mom says we just need to take it slow. I plan on finding a swim class for him in May (after Accutane) and we're planning to enroll him in a PreK class in the Fall. We shall see! I know he'd like his daddy to coach his soccer team too this Fall.

The little doggie was returned to her family. We put up signs on Monday afternoon and got a call within an hour. She actually belonged to a little girl named Maisy in Elle's class! Elle was very upset. It was so sweet though, Hans comforted her by saying, "it's okay, sissy, God is building us a new doggy!" So, I guess we're opening our hearts to a special little dog that might walk her way into our lives. We had a dog that died just before diagnosis - Kramer - he was very special to Hans. And, we were instructed not to get a new dog during the first year or so of treatment.

I guess that's the whole story. We're headed into what will probably a V ERY Quiet weekend, based on how I'm feeling right now. I guess now that Hans is fine and stable right now - my body decided I have the green light to fall apart! UGH!

That's all for now,
Love, Lara

More Good News!

Hi there,

Okay - just got the GREAT NEWS from Shari that Hans' biopsy was Negative for disease! Hooray! Thanks for keeping our little guy in your prayers.

Just a quick post/picture. We had a very busy weekend around here! A little dog appeared at our door on Friday night. She looked pretty bedraggled, so Kevin and the kids gave her a bath, and Hans named her Emo. We'll put up some signs and go get her scanned at the vet to see if we can help reunite her with her family. We sent Roxie off Saturday morning and Elle and I pulled three volunteer shifts this weekend! I worked my little shift at Elle's school carnival - the place was packed out and I'm sure they raised thousands and thousands of dollars for the PTO (we're hoping some of it will go for a fabulous playground). Kevin and Hans spent much of Saturday doggie-proofing our backyard and replacing several fence boards. It was pretty cute how Hans went and got his plastic hammer and had to be hammering right out there with Daddy. Then, on Sunday, we went to help set up for the Egg Hunt. The Mothers of Young Children playgroup sponsors it every year, so we had fun. It's amazing how thousands of eggs get scooped up in about 30 seconds! Cute Bunny picture above. When we got home there was a message for Elle to help out with a Girl Scout cookie sales booth from 6 - 8pm. So, she went and did that. I have to say congrats to Elle for hitting $1,000 in cookie sales this year! Thanks to everyone who bought from her this year. We plan to do the big cookie pass-out up on the 9th/8th floors next week. We're ready for spring break! It was kind of hard to wake up after Daylight Saving time - it was so dark out this morning!

That's all for now...

Lara

The check presentation on Tuesday, Elle with a former Miss America at the campaign event Sunday, Roxie and Elle and I got our pic snapped with Melanie Griffith on Sunday!, Me, Roxie and Elle, hiding from the camera, kev and me, as captured by Hans on the sidelines of Elle's game, Hans with his new fave thing - a spray bottle, the dragons getting ready for the big game - e's #25, Our NP Shari with two moms Tracy Ash and Athena Friday-Black back at the bake sale,

Carmen and I loading baked goods up in the morning (we took two carloads down to TCH)

Picture Time!

Or, so I thought... blogger doesn't want to load for me right now - but
I know what pictures to post, so I'll get them up as soon as it lets me.

I wanted to tell you that we made it through yesterday. It is over! Yeah! It was not uneventful. The morning actually went beautifully! Yes, beautifully, for a bone marrow aspiration that's saying A LOT! And the dentist filled the one cavity, and took xrays and did a full exam with Hans under and found no other cavities! I am totally thrilled with that news! We were on our way home at 10:30 and then I got a call that Hans' Potassium was through the roof at 6.2. So we picked up Roxie, checking out from her hotel, went back to TCH and did a stat blood draw to find out that his Potassium was fine/perfect at 4.2. Good news. Not fun experience. Oh well. We were home in time to meet Elle off the bus, so that was good.

I have to just vent that the caucus process was not fun and it was actually ridiculous. We were at our polling place for 2 hours to get our vote fully counted. The thing was that we just waited and waited in line to fill out a piece of paper and there wasn't any special dialogue or consensus building (it looked like that was sort of going on in Iowa and Nevada, from the clips I watched on the news.) A lot of people had kids with them and this was the night before the TAKS test. I don't think it was well planned out and I will make a formal complaint to the election board, and my party, for whatever that's worth...

Hope to post later with pictures. We're just taking it easy with Roxie in town for the next couple of days after what has been a whirlwind of activity! It's nice to be OFF Accutane! Hans was pretty slow moving around yesterday after both the BMA and the filling, but he ate well and is doing just fine this morning.

Lara

Some Good News!

It feels a little patriotic for me to share some good news with you on Election Day here in Texas! I just found out today that our representative, Kevin Brady, has signed on as a co-sponsor to the Conquer Childhood Cancer Act in the House! He did this back in July, but I just clued into it. I found out yesterday that Senator Maria Cantwell of Washington State signed on as well. I think we can all give ourselves a pat on the back - it may have been our letters that did the trick! Senator Kay Bailey Hutchison still needs convincing. I called three of her offices yesterday, but really just left general messages with staffers. Thanks, Vickie, I usually just follow your lead when it comes to knowing what to do about the CCC Act!

Senators from Arizona, Oregon, Alaska and Pennsylvania (and many others) still need encouragement to sign on. We only need 7 more co-sponsors and the Act will go to a vote where it would win with a majority! Read all about it at http://www.curesearch.org/!

Charon Edgington and I were at TCH this morning for a Lunch for Life Check presentation. Mark Dungan came down from Dallas to present a check for $66,000 to TCH to fund Dr. Russell's research! Pretty cool. Hans and Carlie's funds were combined with another TCH angel, Gracie, and then matched by LFL for this total. We are so very fortunate to be well supported by family and friends! Your contributions and sacrifices will make a difference! Thank you!

It is pretty electric around here with Election Activity. Kevin and I will get our first taste of a caucus tonight. Don't forget to vote, and then go back and Caucus. It seems kind of funny to vote and caucus, but the media is dubbing it the 'Texas Two Step".

And at this very moment Elle's class is featured on the www.conroeisd.net main district website. They are getting pumped up for their first major "TAKS" test of their school careers tomorrow. I know they'll do great!

Hans and I will be heading back down to TCH tomorrow. Kevin may just be able to meet us down there. Hans has his bone marrow aspiration and a small filling scheduled for tomorrow. Wish us luck for an uneventful day followed by some good news!

Okay - I'll post when I hear back about the Bone marrow...
Lara