About Me

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Bakersfield, CA, United States
Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.

Tuesday, January 29, 2008

Tuesday

Hi there,
Well, there are some new developments to tell you about today. Carlie has been admitted to TCH. Sadly, this little sweet girl is out of treatment options and is now being cared for by those fabulous doctors and nurses up there. I would appreciate any prayers and thoughts you can offer for her and her wonderful family.

On another note - Vickie turned me on to the website of Alex P. - he has had some of his treatments at TCH and apparently his parents have been real movers and shakers with the Conquer Childhood Cancer Act - you can read her brief at: http://www.caringbridge.org/visit/alexanderpodeszwa
It's a great summary - I learned a lot! I think the most disturbing fact is that what we are pushing for is $150 mil to find cures for pediatric cancers by funding research programs over the next 5 years. $150 mil is spent in about 7.5 hours on the War in Iraq! That's pretty disturbing to me.

Other than that, we're okay. I'm being a bit of a couch potato trying to catch up on Lost, Episodes before the new season starts. Well - that's not totally true - I'll tote the laptop around and try to do something semi-productive while watching, but I'm kinda hooked! Hans continues to work on his dance moves, and we think he's trying out a little opera singing. Elle's doing well at basketball! I'm just amazed that she loves it so. It's great - she is really light on her feet and she bounces around like Ali out there defending. She thinks it's a trip that she likes defense in basketball and offense in soccer. Kevin is extremely busy with work right now, but hopefully it'll let up a bit after this week.

Lara

Friday, January 25, 2008

Scroll Down to Check Out Hans' Dance Clip...































Pictures above = Hans - he loves to make coffee for us, Kevin, as captured by Hans, Lara and Elle, Hans and Roman at Chuck E. Cheese, Hans on the Dance Game at Chuck E Cheese, and Carlie and Charon... I tried to upload a 30 second video of Hans dancing this morning. He's got some pretty good moves!

So we got Hans' counts back and they actually look pretty good. His HGB was down to 13.8 and his Potassium was really normal at 4.4. His Sodium was just 1 low at 134. So, that's pretty cool! We actually did talk to Endocrine last week and they advised that we lower Hans' baseline dose of Hydrocortisone by 25%. We've been trying to do this. But, to tell you the truth it makes us pretty nervous. Hans was wiped out with some little bug on Saturday and we ended up putting him on stress dose anyway - so who knows. Endocrine thinks this adjustment will help bring the Potassium and Hemoglobin back into balance, so we'll see.

I think I'm getting one step closer to having my claims issues resolved. Actually, for the first time since I started calling United Health Care to complain in July I have a supervisor that is actually following my case, calling me back, sticking with it and sorting out my claims. It has honestly been a true nightmare. (Basically they've billed thousands to us as out of network/patient responsibility but they are really in-network providers, and UHC has paid on many claims to these providers as in-network...) I am actually pretty traumatized now as I have so many people involved in trying to straighten it all out that I'll get people calling me at random times of the day and they want to hear the whole story so they can try to sort it out! I only wish they were paying me to help them. Ha!

Patrick got good news with his scans, all clear/NED and now off Accutane! Congrats! Erin B. also heard back "stable", and Colby scans later this month after Hans...
Please keep our friends Carlie and Ryan and Chloe in your prayers as they fight relapse. Ryan was supposed to start a new clinical trail this week! Let's hope it's a good one!

video

Wednesday, January 23, 2008

"Dinner"-For-Life


I just wanted to let you all know about a cubscout den mate of Hans' friend Michael, Gregor Mathieson. At a cubscout meeting I (Michael's dad) informed the group about the Lunch-For-Life fundraiser and passed out some of the bags. When Gregor learned about it he went home and asked his mother and father if there was something that they could do to help. So Gregor's family, parents Gail and Derek, hosted a dinner to raise money. Gail sent me an email describing the evening and here's an excerpt:


"what we did was organize a “very late lunch” at 7.30pm where we donated $5 minimum to join a recipe exchange evening i.e. cook a dish and bring the recipe to share – there was wine, music and a lot of laughter and we really all had a nice time – the added bonus is that we have $120 to donate in Hans’ name. In fact it may be a little bit more than that as a couple of people who couldn’t make it said they’d like to contribute too so I’ll wait a couple of days before going on-line to do that.I know it’s only a small amount in the vast sums needed for research but it was our pleasure to contribute. Especially since Gregor really wanted me to do something when he brought home the brown lunch bag from Scouts – he can take the credit!!!"


I really wanted to share this story with all of you. I am very proud to know Gregor and I wanted be sure that he knows his desire to make a difference is greatly appreciated. If we all just do a little, we can make a big difference.
Friend of the Weberlings,
Jim

A Few Things...

Hi guys,

I wanted to tell you all that we got a very nice thank you card from Lunch for Life. Enclosed was a gift card from Toys R Us. We might just use it to go toward a Wii, if they ever come in! The note from LFL said that over $250,000 was raised just over the Holiday season - for a total of 1.2 million raised so far! So that you can know where your contributions are going, I'm going to quote:
"The CNCF will work tirelessly to fund promising new research in an effort to hasten a cure. We will continue to dedicate ourselves to advocating on your behalf. We will be closer to a cure this year because of your help. This year we will be funding research at the NANT, Memorial Sloan Kettering Cancer Center, and Texas Children's Cancer Center. The includes the funding of at least 4 clinical trials that would likely not be available if it was not for these lunches. In addition, we will continue support the CNCF's Junior Investigator Program by supplying research funds for 3 more 2 year grants. We are creating change."
I thought that was all amazing. Thanks to all of you, and your friends and family who reached out to give to Lunch for Life. I have been pretty inspired by your generous giving and have started working on my next project. We are doing a Valentine's Day Bake Sale at TCH on Feb. 13th from 10 - 3. I have recruited between 30 -40 bakers for this event! If you're in the area, please come by for a sweet treat. Any unsold goodies will be donated to the 8th, 9th floors and to the PICU... All proceeds will go straight to Lunch for Life, and will be split among all the TCH kids with LFL campaigns. I can't wait to see how it goes! I'm hoping to try out more fundraising ideas this year, and then do another big LFL email push next Fall, as Hans hits his 2-year anniversary of Diagnosis...

On another totally unrelated note - I want to say Congratulations to ELLE! She completed a major achievement this past week. Her school participates in a reading program that challenges students to read a large variety of books selected each year by Texas School Librarians. Elle rose to the challenge and completed all twenty of the books. She highly recommends Double Identity by Margaret Peterson Haddix to readers of Jr. Lit out there! The kids get to vote for their favorite and Haddix won E's vote. Congrats to her classmates Amber and Morgan who also hit the 20-book mark! Way to go, girls! For a complete list of the books check out: http://www.txla.org/groups/tba/masters/masterlists07_08.html It was a feat that we have been working on since August. Many of these books are hefty novels! I'm mostly proud of her that she didn't complain once throughout this whole process. It's neat that her school supports these extra programs and we're fortunate to have a wonderful librarian. Elle sure loves her school.

Okay - I think that's about it for today. We're going in for labs tomorrow, so I'll post the results as I learn them. I may try to post more pictures this afternoon...

Love, Lara

Saturday, January 19, 2008

Do You Have 5 Minutes?

Hi guys,
First - thanks for your support with Elle's cookie campaign - she has taken orders for 62 boxes of cookies to be delivered to the 8th and 9th floors - we'll have enough for patients and staff, too!
Thanks to Mom, Grandma Kathy, Aunt Susan, Aunt Holly, Aunt Pati, Tom, Neighbor Charlie, Cousin Erin in Chicago, Colby, Erin B., and Kerri - Malachi's mom. That is so sweet!

Now onto slightly more important things: The Cancer Childhood Cancer Act still needs lots more support in the to pass. Please click the following link and send a pre-composed letter to your Representative and your Senators. It is easy to personalize your letter and write a sentence or two about how Childhood Cancer has impacted your life. Just click this link or copy/paste into your browser: http://capwiz.com/curesearch/home/ Then, all you have to do is first click HR version to write to your Representative, then go back to the Senate version to write to your Senator. They have made it so easy at Cure Search, you don't really have an excuse not to write! We have so far to go with research for this beast they call Neuroblastoma...

Many many Senators have yet to sign on as Co-sponsors of the Act...Here is a partial list to motivate some of our known blog readers.

* Friends and Family in Washington State - Please write to senator Maria Cantwell and urge her to sign on.

*Friends in Texas, please write to Kay Bailey Hutchison,

*Friends in Oregon - please write to Sen. Gordon Smith.

Alaska needs both Senators, Stevens and Murkowski

Arizona also needs both Senators - McCain and Kyl

Illinois needs Durbin

Montana needs both Senators, Baucus and Tester

Californians are off the hook - but you can always send a letter thanking your awesome Senators for their support:) If you know 'activists' in other states, please check the complete list at
http://capwiz.com/curesearch/issues/bills/?bill=10267781&cs_party=all&cs_status=X&cs_state=ALL

Okay - for a mini update. We have one of those busy weekends filled with a Bday Sleepover for Elle's friend Kira tonight , a Christening party for our new Neighbor Zoe tomorrow, our first Basketball game of the season, I actually went on a mom's movie night to 27 dresses last night (it was cute), and of course, Kev's got NFL playoffs to watch. Oh, then, if it's warm enough - we're heading to the best parade in the South! We're going to the MLK Day parade in Houston. That is, if all goes well...

Thanks for your letter writing. Hans will do more labs next week to test his levels.

Later, Love, Lara

Tuesday, January 15, 2008

Elle's Cookie Drive for TCH

Hi -
So - we got a pretty good idea this year to boost Elle's cookie sales and support a fun cause! So far Elle has taken orders from our out-of-town family members and one neighbor for 32 boxes of Girl Scout cookies to be donated to patients at TCH! Thanks for the support from everyone so far. We're very close to having enough boxes of cookies to deliver one to each patient on the 9th floor. If we get more we'll do the 8th floor, too. (9th floor is the Cancer Treatment floor, and 8th floor is Bone Marrow Transplant.)

If you want to participate and order a box of GS cookies from Elle to go to TCH kiddos, just email me at kevinandlara@hotmail.com. The cookies are $3.50 per box and you can choose from Carmel Delights, Thin Mints, Peanut Butter Patties, Peanut Butter Sandwich Cookies, Lemonades, Shortbread, Thanks A Lots, and new this year Low-Cal CinnaSpins. Thanks, guys! I know Elle and Hans are going to be proud to deliver all these cookies. I'll get a picture to post. Hans has continued his tradition of ordering a case of the Thanks A Lots to hand out to the Cancer Center staff. He had lots of fun being cookie santa last year. I'll get a picture of that this time, too.

Otherwise - we are doing well. Hans has been actually pretty great. We're not really getting a full story on why his HGB and Potassium might be off, but hopefully I can connect with Endocrine and get a better idea??? We squeezed in some fun this weekend between cookies sales and Kev's NFL playoffs...

Okay - so we've got two friends now faced with the news that tumors have spread. So prayers, thoughts, "good vibes", whatever you've got for Carlie and Ryan. Also, for pretty, clean scans for Hans in February, and for Patrick, who is scanning this week!
Thanks.
Love, Lara

Thursday, January 10, 2008

"Love me some Hans!"

Hans had a good visit to the clinic today. He gives such good hugs to everyone up there and his famous pat, too! It's pretty cute. Cynthia, one of the nurses said it best today, "Love me some Hans!" Poor Dr. Russell still doesn't get hugs quite yet, but she gets high fives. I guess Hans is still just a touch traumatized by what she had to put him through.

It was a little strange - I got another story on the counts today. I guess I had gotten the numbers wrong from the nurses last week. His HGB was really 13.8 (not 12.1) and this week it was 15.4?!? It's high - but not to the point they get too concerned or consider treating him for it. We'll watch it with more blood draws in 2 weeks. The current plan is to get through this round of scans and then in February we'll all reassess the Accutane decision.

Hans is doing really well right now (knock on wood - I hate to say that out loud or on the blog!) and everyone admires his curls. He's also perfectly happy to be staying at home with mommy right now. I think he'd be happy to do it one more year before heading off to Kindergarten... it works for me, too!

Please keep our little Carlie in your prayers and thoughts these days. She's going through some changes in her treatment plan which is always unsettling. Thanks.

Lara

Tuesday, January 08, 2008

Scan dates




A lot of you have been asking when are Hans' next scans. I am happy to finally have an answer! I just got a call today that Hans will be doing scans between February 4th and 14th. We're praying and hoping for another clean bill of health. They're doing the Kidney test again (GFR) this should be interesting since last time it was way off and was ultimately ruled a "bad test". He'll also do a CT with sedation, a Bone Scan and an MIBG (major body organ scan). They have yet to schedule his Bone Marrow Aspiration but they'll get it in sometime. It's always nerve wracking, but we are certainly encouraged by Hans' general good health and well being lately:)


Hans has been busy coloring and painting and watching Tom and Jerry (his current favorite cartoon), eating lots and lots of rotisserie chicken, pepperoni pizza and Jack in the Box kids meals. He did have a little incident at the park this weekend where he fell (not too far at all), but he did need to get his stress dose of steroids. Luckily we were able to give it orally so that he didn't have to go through the shot. A little scary, but he was back to his normal self soon!


Elle is busy reading to complete her Bluebonnet Reading Program, but I'll fill you in on that more when she finishes. She is just starting basketball, and she'll be selling Girl Scouts cookies soon. Luckily she doesn't start soccer until February.

I'm proud of myself because I seem to be getting the year started off right. I just completed a little household project that I have been putting off for a very long time! I re-did the trim in our living and dining room and it feels great. I was happy that Hans cooperated with my project. And, it was nice to start and finish a little project without any significant medical mishap.


Kevin is still super busy at work. He has a lot of wells right now. We've had such warm weather here that he was able to take the kids to the lake this weekend and do a little fishing with their new poles. They had fun even though they didn't catch a thing.

We just got our Lunch for Life cookbook. Hans has a few recipes in there, and so do some of the other local NB families. You can order a copy at http://www.lunchforlife.org/. 100% of the proceeds will go to benefit the Children's Neuroblastoma Cancer Foundation. It's a neat way to support the cause and get a few new meal ideas! Elle's excited to try out some of the recipes.

Okay - that's it for today. I'll let you know how Thursday's office visit and counts go...

Lara

Friday, January 04, 2008

Yea!

Hey - we just got word on yesterday's blood draw. Hans' Hemoglobin is back down to 12.1! Whoa - I was just wishful thinking that it'd be anywhere in the 12's. What a pleasant surprise:) This time his Potassium is just a bit off at 3.1 (normal = 3.5 to 5.5), but that's nothing we can't correct with Oral Potassium, so that's just fine, I guess.

Other than that- Hans is doing okay. He's looking forward to going to the park tomorrow and he has enjoyed playing with all his Christmas toys - especially the Fishing Pole he got from his Uncle Tom!

I am happy to get the house back to normal and put the Christmas stuff away. It feels a lot less chaotic around here now.

Okay - that's it for tonight - thanks for your prayers for Hans and his NB buddies.

Lara

Tuesday, January 01, 2008

Happy New Year!

Opening Stockings - Christmas morning.

Silly Elle posed for this picture she called - Death by Presents!

Hans and Grandma decorating Gingerbread House
Elle and Grandma with Gingerbread houses...

Happy New Year! I hope everyone had a fun time ringing in the new year last night. We did okay - we tried out a little party over at our friends', Carmen and Jim's. Hans had to go though right at the height of the evening. Oh well - at least we got out and had some fun! We were actually supposed to hit another party too at our neighbor's - but that proved to be a little much excitement for our little dude. He was out shortly after we got home. Elle and I watched Dick Clark ring in the New Year while Kevin made an appearance for us at the neighborhood party.

I have never been so ready to welcome a new year, and to kiss the past year goodbye! I appreciate the good things that came out of 2007, but I'm ready to start out '08. I am hoping to see Hans contiue to grow stronger and healthier each month. I am also praying for the other kids we've come to know at the Cancer Center - Chloe, Carlie, Patrick, Will, Ryan, Roman, Erin, Colby and all the others. Also - it's really special for us that each of you and so many have included Hans in your prayers these past months. We're also praying for you and your families. Here's to health and happiness. I'm also hoping for some really significant strides in Neuroblastoma Research! Thanks to you who have given a little, or a lot, to Hans' Lunch for Life Campaign. Together, we have placed 2399 ornaments on his tree just since late October - I'll let you know when we get the total from LFL, but that could be as much as $6,000 - $12,000 (depending on how many ornaments were doubled with the giving codes). "Wowie!"- my grandma Tynne would have said.

It has been a nice little relaxing break. My mom flew out yesterday and I know it's nice for her that she has two days off before school starts back up. We just did a little shopping - some eating, played a lot of Clue, did some Origami, and hung out. I keep thinking pretty soon we're going to be a scrambling two-sport family! Elle's basketball and soccer seasons will overlap a litle. We might even talk to Dr. Russell about signing Hans up for spring T-ball or soccer. We'll see what Papa Bear has to say about it too - it doesn't start for a while - we shall see!

I think I forgot to mention, but back on the December Office visit, Dr. Russell said she wanted to hold off on Accutane until at least January. We were talking about it - Hans did hit the ER five times during the three months he was on Accutane. I'm not sure what she'll do with him.


I'll keep you posted on Hans' counts if I get them back on Thursday. Let's hope that HGB works itself out! It'd be nice to see a normal "12.6" or something like that.

Happy New Year!

Lara