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

THEY ARE ALL SAFE!

Kevin, Lara, Elle and Hans are all safe! They did have a large tree fall across the study and garage, causing some structural and water damage. In addition to the house damage, power is not anticipated to be back up for 3 - 4 weeks so they are trying to come up with a plan.

Kevin has been in contact with his employer, Marathon Oil, and they have resources available to help the hurricane victims which may include alternate housing for them. They are also considering having Lara and the kids go to Arizona to stay with Kevin's Aunt Debi,Uncle Mark and Cousin Kalene. I expect that they will make a decision in the next day or so. Hans' health and his ability to deal with the physical and emotional stress on his body, heat, disruption to his day to day schedule, the chaos of the aftermath all create additional concerns for Hans. Fortunately Hans finished his recent round of chemo and is now just scheduled for counts during the next couple of weeks. Counts and transfusions can be coordinated with other medical facilities while they continue with their plan to start Hans' treatment program in San Francisco.

Kevin and Lara continue to demonstrate tremendous strength in this latest blow they've been dealt. It's overwhelming for us to imagine how much more they can deal with at this time. Be sure that their primary concerns are for the safety of their family and Hans' special needs. I know Roxie's suggestion for those that would like to help, to send pre-paid cards for gas, food, etc would be a tremendous help to them at this time and once they get to San Francisco (thanks Roxie!). I will let you know where the best place to send cards will be as soon as they know where they will be staying.

Thanks again for the prayers. As they make a plan, I will try to keep you all current.

Kathy and all of their extended family

PS - Lara spoke with a family at TCH and they seem to all be doing ok. TCH has enough power to meet their immediate needs.

Sprung!

Hi!
Would you believe it totally worked out? They totally fast tracked us on 9 and we were "outta there" BEFORE noon! The roads were clear and quiet, there was no gas to be found, but I had enough! I am happy we're all "up home" as Hans likes to say, me, Kev, Elle, Hans, Honey, and the cats - Black, Orange and Cotton.

We left a floor full of patients and nurses down in the Med Center. It's pretty scary! But I'm sure they'll all be safe. Those nurses sure are brave! They're leaving their families to 'ride out' the storm. I know they'll be safe in the building (hope hope hope) but not very minute will be a hurricane party. The plan is to pull patients mattresses out into the hall tonight, to keep them safe from possible broken glass.

Kevin has secured things around here, and cleaned out the downstairs closet, where I guess we're prepared to spend the night if need be! Elle and I made a stop to get more beading supplies on the way home, so we should be able to keep busy.

Thanks for checking on us.

Lara

We've got all of Hans' prescriptions and we're glad he's mostly just enjoying feeling well and his counts aren't at risk to drop too low...

Going Inpatient Due to Ike!

Hi,
Just wanted to let everyone know that they finally figured out what to do with us. They gave us the option of declining tomorrow's chemo and just staying home, or...
sticking around as inpatient tomorrow to get the full dose of Round I of Irino/Temodor. I didn't think missing 20% of chemo was a real option. They got Dr. Russell on the phone and she concurred (she's at a Children's Oncology Group Conference in Philly). We are now waiting for the room. Hans should be done at noon tomorrow. IF road and weather conditions look decent, we'll be headed home at noon. But, if not, we'll ride out the storm on the 9th floor (actually - I can only hope they are able to put us up on the ninth floor)!
Kev was here to make the big decisions with me, but then he headed home to batten down the hatches and ready our place for a storm. I hope the roads aren't getting too bad out there for everyone!
I had a feeling we'd be going inpatient - so I decided to pull Elle out of school this morning as Hans and I headed into clinic. I just felt I should grab her since everything was such a big question mark...I'm sure glad I did!
Will update later. Hospital should be pretty good on generator.
Lara

Bake Sale Postponed Due to Ike

Hi Everyone -
I just wanted to be sure that all of our bakers, sellers and shoppers got word that the Memorial Bake Sale has been postponed due to Hurricane Ike. Hopefully IKE won't be that much of an event - but it's better to be safe than sorry. We want each of the families to be able to participate in this day safely! As soon as I get my hands on dates for travel to UCSF I'll throw out some more ideas for dates.

As Shelly pointed out, Houston is likely to be on the "dirty" side of this storm, [for our friends who live elsewhere, the dirty side is the east side, as hurricanes move counterclockwise they are more dangerous and faster as they blow in off the water] and we don't want our friends coming from hours out to be put in harm's way. They'll likely scale back appointments and be operating on a skeletal staff - so we won't have as much of a customer base. It's better to wait so we can raise a lot of funds for NB research!

Meanwhile - we are working on our own contingency plan for Hans' treatment. They aren't overly prepared in clinic yet, but I am going to bring my overnight bag tomorrow, just in case we are detained as inpatient. I'm getting back-up plans for Elle worked out, and it's all kinda crazy!!! I have heard it said that text messaging can be the best means of communication during a bad storm since the phone lines can get swamped so easily. So, MOM - you might have to learn how to text - i just sent you a test message. But, Carm, just not while driving;)

Lara

Irino/Temodor Under Way

Hi -
So for a 'quick' post and update - we are finished with Days one and two of Irino/Temodor. So far it seems to be going okay. The main side effect doesn't seem to be hitting Hans!

Hans went to school today and we plan to send him tomorrow and Thursday. I guess he got on the teacher's chair today and explained to everyone that his was port was accessed so they shouldn't touch it or run around. His class seems to have fallen in love with him. Whenever I pick him up just before lunch, it seems each student has to say goodbye, hug him or give him a high five. I feel for Mrs. Nusbaum - I'm willing to pick him up in a less disruptive way. Mrs. Nusbaum reports that Hans is adjusting quite well to the routine of being a Glen Loch Gator! How cool is that? I couldn't be happier with his team - to the point that I don't even worry about him during his 3 hours of school (unless the phone rings!) I try to take a nice long walk and pick up this place a little bit...

Today Hans got to ride home with daddy - so he was pretty happy about that.

I wanted to post information about a couple of upcoming events:
There will be a Blood Drive in memory of Blaine Brandon on Saturday, September 13th at: American Dream Cycles in The Woodlands

Also - the Sparrow Clubs is doing a Bunko Night for Hans - their theme is
Highlanders for Hans. The Bunko will be Oct. 4th. How cute! For more information you can email: Sparrows@YourHomeTown.com We sure appreciate that Alison Kilway, Travis Kilway and the Highlanders are doing this for our family. I can also forward you the flyer, if you email me at kevinandlara@hotmail.com

It looks like Hurricane Ike is coming right at us. Bakers, please bear with me a little longer - Kevin and I are watching it, watching Marathon Oil's weather alerts, and we're staying in contact with clinic staff. I'll try to make the call by tomorrow evening as to whether or not we can go ahead with the Memorial Bake Sale on Friday, or if we'll need to reschedule.

The Pics above are from our Gulf Coast Regional Blood Center photo shoot back in June. We have no idea if any of them will be used in the Blood Center's Print Media or not...

I'll post more when I find out about Ike.

Lara

News from Doc

We've talked with Doctor Russell a few times since the last post. She told us that she has conferred with the docs at MSKCC in New York, and that we should hold off on that option until "Hans' disease is back under control."

So, we're working on that. Feels a little like taking a shot in the dark. But - it's all we can do. Things are in the works to get Hans into the MIBG treatment at UCSF. It looks like it'll take a couple of weeks to make this happen. Meanwhile,
we are going to get some chemotherapy in him starting Monday. We are going to go with (IV) Irinotecan/(oral?) Temozolamide. Hans has clinic appointments set up for 12:20 each day next week. As long as he is feeling well, he should be able to go to Kindergarten in the morning and head down to clinic afterwards. He will also be given his third dose of Zometa. From what I understand - the hydration requirements aren't as strict as with Topo/Cytox, and the blood count drops aren't quite as low. He should be feeling well the whole time, and he should only have to go into clinic for counts once in each of the following two weeks... There are some side effects, but he's starting a new Antibiotic in hopes of countering those.

It's pretty scary. There are no guarantees that any of these treatments will have the desired effect in Hans. I wish there were some quick lab tests where you could predict how Hans would respond to each therapy. All we can do is keep going, keep fighting, and keep praying. We are trying to make the best decisions we can for our boy. I am happy that Dr. Russell is working with us to help coordinate the treatment at UCSF.

Meanwhile - 'normal' life moves along. Elle has started soccer (go Wolves!) with her first game Saturday. My proud mama moment was when she was the only kid on the team who called out begging to take a penalty kick and aced the final goal:) They didn't win their first game, but they seem like nice kids, and the coach isn't gonna let them goof around. That's good. We also met with Girl Scouts to plan out the year and I am pleased to report that Girl Scout Troop 11251 will help with making lanyards for Neuroblastoma Research, and they will do a cookie drive for either Ronald McDonald House, or for TCH. Sweet.

We'll keep you posted as we roll into another hectic week of balancing school/work/treatment/soccer and another Bake Sale!

Lara

PS - anyone can click on the "Neuroblastoma Parent Handbook" Picture icon, above on the right, and read more about the MIBG or 3F8 Treatments.