So, I Think We Have a Plan

Hi -
We had some real ups and downs last week (or, should I just say downs?) with getting information. As of last week, we were under the impression that we'd be traveling this week to UCSF (University of California at San Francisco) to receive MIGB treatment for Hans. Wednesday morning I actually made contact with nurses at UCSF for the first time. I learned that they were planning on having Hans come for a CONSULTATION. I immediately went into a panic when they told me he wouldn't be slated for treatment until Oct. 7th or 23rd. That would mean letting him go untreated (letting this stuff grow in his little body) for too many extra days. Many convoluted emails and phone calls later (I'll spare you the blow-by-blow),but at about 4:55pm on Friday, we 'confirmed' a new plan. Hans will receive one more round of Irinotecan/Temodor this week on an outpatient basis in clinic at TCH. Kevin and Hans will travel to Cincinnati for a consultation next week, the following week he will undergo another MIBG scan. (Please PRAY that the Irinotecan Temodor is keeping his tumors under control - or, better yet, for pretty, clean scans once again). Then the following week, the week of October 27th, will tentatively be the MIBG therapy up in Cincinnati, Ohio. As it stands now, all of us will be going, and my mom will join us up there as well.
It's terribly sad that we won't be able to be right there in California where we have the love and support of Roxie (Hans' Godmother), Megan and Phil, our good friends, the new beautiful baby Desmond who was born on July 16th and who we are all dying to meet, our friend Aimee, who was willing to drive up from L.A. to help give us more love and support, and all of their parents and siblings who we love, and who love us, and they all treated us like family when we were in Santa Cruz, CA for Kevin's Grad program. I think I'm grieving the loss of all that right now. BUT - the most important thing is Hans' timely and effective treatment. So - Ohio - here we come! Cincinnati Children's Hospital is in the Top Five in the country. And, they are on the cutting edge with this MIBG treatment for NB - being one of only 5 hospitals in the country to offer it. Furthermore, we are impressed at their willingness to get Hans on their calendar in a timely manner.
Life has been a little 'intense' these past weeks, as we are trying to figure out how to handle all of this, in addition to crawling out from under Hurricane Ike - but we seem to 'get by with a little help from our friends' and family! Thanks for your support during this crazy time. I keep finding myself saying "this is insane!"
Lara

Wow - Hans is Featured Sparrow Child on Nat'l Website

Okay - I guess Hans is just a star this week - one more site to check out! http://www.sparrowclubs.org/ You'll see Hans there as the featured Sparrow Child.
I really can't say enough about this program. The whole idea is that students adopt a sparrow child for a year and do service and fundraising for a medically fragile child's family. It was pretty moving and powerful to be there yesterday. Sparrow clubs is the nation's only youth-based charity program. I think it's truly wonderful. If you are involved with a school, or have a student - maybe you would be interested in looking into the sparrow clubs program for your community. It's truly a win-win-win. I must say thanks to Carmen, she forwarded me an email about last year's sparrow child and I just kept it in the back of my mind, and then found out that Alison Kilway was desperately looking for a new Sparrow Child in The Woodlands. Fate.
There is a chance they could need another Sparrow Child in The Woodlands this year. Please email me if you have an idea of a child who lives in The Woodlands kevinandlara@hotmail.com.

Proud mama moment - Elle scored 1 goal and had 2 assists today - way to go sportyspice!

Lara

Find out more about Hans, the new Sparrow Child and the upcoming Bunko fundraiser for the Weberlings at following website

http://www.yourhometown.com/sparrowclub.html


Love,
Carmen

1000 9th graders cheering Hans on today!/Support the Fundraiser (Bunko on Nov.8)

Check out the two surprises Lara was referring to

Great Day Houston guests Hans and Kev (link)

http://www.khou.com/greatday/medical/?nvid=286367&shu=1

Hans and Kevin Featured on Local Talk Show this AM

This is kind of fun!
Hans and Kevin were asked by Elizabeth Garcia of the Gulf Coast Regional Blood Center to join her on the local talk show "Great Day Houston" with Deborah Duncan about the importance of giving blood on a year-round basis - it was pretty cute! I'm proud of my guys. We think it's important to help get the word out about this subject. We can't count how many transfusions Hans has had. (Chemo kills the fast-dividing cells, like hair, blood and tumor cells. That's why cancer patients need to receive transfusions so frequently during treatment.)

Check it out - Thursday, Sept. 25th 2008, www.greatdayhouston.com click on segment three. I'm not sure how long the website will keep it up - could be today only...

HAPPY 10th BIRTHDAY, ELLE!!! We're so proud of you, cutie!

Photos

Kathy is right - it's hard to photograph jewelry. But the lanyards are turning out fun!

Tyson and Jim on roof over garage

Kevin, Tyson and Jim on Roof (Gregg and Mike were helping too - just not pictured here)

Hans with Bumblebee Lanyard

Elle with Lanyard

Hans With Mrs. Reedy - Glen Loch's school nurse, and the reason I'm not a nervous wreck for the three hours Hans is at school! She is wonderful, so is Mrs. Nusbaum!

Tree on House

Back in The Woodlands

Hi -
I thought we should post to let you all know we are back in The Woodlands. We had a very relaxing and nice time in Scottsdale. We just missed Kev! Thanks again to Mark and Debi for getting us out of here after IKE - at first we thought we'd be without power for weeks and that we may just stay in Scottsdale until we left for UCSF. At this time, I'm still not even sure if we are doing UCSF next week, or in three and half weeks - I need to get down to the bottom of that one soon!

We were working feverishly on our Lanyards! I will do my best to post some pictures of our tonight. Here is the ordering information: Email me at kevinandlara@hotmail.com and give me your address. We ask for a $15 minimum donation for the lanyard, plus $1 per lanyard to ship it to you. This is an excellent Christmas gift idea for your favorite nurse, doctor, or your child's teacher - anyone who needs to wear an ID badge!

Our cousin KK also approached two stores in Scottsdale and will be making Doggie Necklaces and keychains at The Barkery and Sonny and Chair, and Debi will be making Necklaces to sell at a Scottsdale restaurant - the HerbBox. They just got these ideas and they're going to be featured on a radio program! These ideas are taking off:) Proceeds will all be going to the Children's Neuroblastoma Cancer Foundation.

We had an awesome visit with our old friends, The Browns, who now live in Tuscon. Thanks for coming up to visit!

Still haven't heard from the insurance adjuster. We all can't wait until they make it out here. We still have some debris to clean out in the big beds out front and back - but the place is really pretty operational at this point...

Talk to you soon - I think there are some pretty exciting things cooked up for Hans on Thursday and Friday - but since nothing is set in stone at this point, I'm going to leave you hanging...

Lara

Counts looking good!

We had a very quick little trip to Phoenix Children's Hospital yesterday. Would you believe it was 45 minutes in and out the front doors and we had great counts in hand! HGB 11.7, Platelets 191, and ANC 5,000! We were glad to be here because we heard that the Texas Medical Center is pretty much out of blood. They are not giving out platelets unless people are bleeding!

THIS WOULD BE A VERY GOOD TIME TO DONATE BLOOD OR PLATELETS! Even if you haven't done it in a very long time. I'm a little worried about the other kids down there who might need transfusions. Check out the website www.giveblood.org if you are in the greater Houston area... If you are not in the area, you can find your local blood center and give, anyway;)

Hans is enjoying his trip. We are all having fun and being at least a little bit pampered. Lots of swimming, lots of playing Wii. Debi had been asked to bring Gabi, the new puppy, in for a photo shoot. We ended up having a little impromptu photo shoot of Hans, KK and Elle with and with out the doggie. I'll update with the photographer's website when he gets our photos up, so that you can check it out. But, I was able to post a couple of the photos today. Pretty good for just getting them yesterday!

Kevin is doing fine. We acutally got power back on at our house Wednesdat afternoon. He was able to return the favor and help another guy get a tree off his house, yesterday. Our block has been doing a few hurricane parties, so it's not all doom and gloom down there. He also said he got a very reasonable quote on getting the rest of the tree down. It was actually just the top 20 or 30 feet of a tree that landed on our house. The other 40 feet is still standing and we needed to get it down. I guess the guy is going to come out to the house today - amazing!

All we have left to do is figure out when to come home. That's a little tricky b/c we don't have our dates for UCSF nailed down yet. It's tentatively set for the week of Sept. 29th. We think the kids are going to be back in school Tuesday, so we'll see.

Thanks for checking up on us. Please keep Chloe Parker's family in your prayers. They are in truly unthinkable circumstances. Chloe's services are today and they still are operating without power at their house.

Lara

Hello from Scottsdale

What a week...
We're now safe and dry in Scottsdale. We are framing it as an early spring break. We get to hang out with KK, and Debi and Mark, and the boxers Harley and baby Gabby and the cat J2. Our house has some sturctural damage - but it's habitable. I have to confess - if you live on our block or in The Woodlands - I was wishing this would have happened to you, not us! But now I realize that a handful of our friends and neighbors do have trees on their houses as well! So, we'll all deal with it. I was pretty much a disaster on Saturday morning, but now we're just adding it to the list. My mom was able to contact the insurance and they gave us a five day estimate for getting to our house. Thanks to Mark and Debi who flew us outta there to get away from the storm. Kevin and I were a little worried about how Hans would fare for an extended period of time w/o power. He's fine though, he did okay. But now he's beside himself to be on vacation!

The 'real' problem we are facing is the Neuroblastoma. As soon as I was able to get online this morning, I learned that we lost Chloe Parker this week. We were in the room next door to her on Thursday/Friday on the 9th floor. Her NB progressed and took over organ function in the previous 2 days. We are so sorry for her family. She was a strong willed and incredible little girl! Thanks for any prayers you can offer for her family at this terrible time.

Lara

The Plan For Now

Lara, Elle and Hans are scheduled to fly to Phoenix on Tuesday evening. They will be staying with Mark, Debi and Kalene for at least a couple of weeks. Lara is setting things up for Hans to have counts done at Phoenix Children's Hospital.

Kev will stay in Houston to take care of the house. With the help of friends they were able to safely remove the tree from the roof today so at least they can tarp it and stop some of the water damage. Lara also mentioned that all of their friends are safe. Sounds like a lot of them are making alternate arrangements while their power is out. Gasoline is scarce right now so they are limiting travel to only necessary trips. Otherwise, they are holding their heads up and making the best of the situation.

Prayers to all of them,

Kathy