Just a quick post. First photo - our Brownie Troop last night at Build A Bear. The girls used their cookie money to build bears in teams that will be donated to needy children this Christmas. I'm very impressed with the generousity of our girls. After this past year, I am clearer than ever on the collective importance of charitable efforts. If we can all give just a little, consistently, it will make the world a better place for us all. Thanks again to all of you have given generously to Hans' Lunch for Life campaign. Hans' tree has filled out quite nicely - with 1,881 ornaments as of this evening! You can always check it out at www.lunchforlife.org.

Every time I take a photo of Hans with this new camera - he snaps one of me with his new "camera" just a toy from Jack in the Box. And Elle took the third picture of herself and I love it! Kevin and Hans were cute this weekend. Kevin got a new video game for his "hospital" portable play station. Every time Hans saw his dad playing the game he'd say, "Oh, we're playing Leapster (that's Hans' portable video game system), and he run and get it and sprawl out next to daddy to play.

Hans update: His Potassium was up to 4.4 (normal) as of Monday. But, after that, we're feeling just a little lost in the shuffle b/w the Cancer Center and Endocrinology. We've bumped his second steroid back up to full strength, and cut his Potassium in half. We have yet to hear when we go back in to re-check counts. Maybe tomorrow??? I'll keep you posted.

My big news is that I had the opportunity, or better yet, the necessity to buy Hans new shoes today! He had finally grown out of his battered Cars shoes and the only way to part with them was to find a new pair. I'll try to get a picture to post here soon. I'm just excited to see some measurable growth in the little dude! Way to Grow, bud!

Lara

Hans is Coins4kids.org featured kid for November! (aka Mr. November)

2nd post:
We did hear from the on-call doc that Hans' Potassium had risen .8 since Wednesday, that's great and just .6 to go til "normal" range. I guess they'll want to see us Monday or Tuesday to re-check. I'm hoping it's Tuesday. They're having a Christmas party up there and Hans may just as well have a little fun...
Elle got to go skating today with her friend Caley! Thanks for taking her, Sheri, it was good to see you guys!

Hi Guys,
I just realized that they picked Hans as the featured kid for the November Coins4Kids page. It's pretty cute! Check it out, and order your piggy bank, too. All proceeds you save up and cash in go right to the Children's Neuroblastoma Cancer Foundation, just like Lunch for Life: http://www.coins4kids.org/novemberfeaturedkids.htm

I thought I should post again, just because I was kind of bummin' out after all that Hospital action on Wednesday. Yesterday we actually had a nice and relaxing and quiet day. We rented a couple of movies and hung out and played games and did a lot of Hans' very favorite activity of late - snuggled! He has got to be about the snuggliest little 4-year-old boy out there! The meal from HEB was pretty darn good. We just spruced it up with Kevin's sweet potatoes and Elle and Hans and I made an apple pie. It all turned out very nice and we are still full! We know how much we have to be thankful for! Thanks to all of you, for all of your prayers and support this past year. We hope you all are having a lovely holiday!
Today - Kevin and Hans are going to do a guy run down to the clinic for counts. I hope all goes well, our regular floor is closed today, so they'll be going to another part of the hospital. They just want to see the Potassium numbers creeping back up. Hans has been a total CHAMP swallowing the huge Potassium pill. He takes it like he did the Accutane, in a teaspoon of Reddi Whip. I'm very proud to see him swallow such a huge pill!
Elle and I are snaking out of hospital duty to do a little shopping. I need to replace both my cell phone and our digital camera! Thanks to Kathy, Debi, Holly and Susan for getting us the perfect early Christmas gift of a new camera. I figure there'll be a good deal today. Elle and I are brave enough to go out there with the masses! Tomorrow Elle and I are going to the Nutcracker with Ginger, Morgan and Adrian. And, Marlene asked me to stop by the Woodlands Fit Run in the morning to possibly hand out LFL bags! I'll try to post again soon with the good news that the potassium is perking up!
Lara

Wednesday

Okay - so it's been a while since I posted. Holly - have fun in Hawaii! PL - have a great turkey day at home. Wish we could just show up with out the flight and all that jazz... Thanks Sheila, for your offer of sending a copy out. I hope people take you up on that. I got three copies of the paper, Kevin took one to work and I haven't done anything with the others.

I feel a little pitiful tonight. We had a great appointment on Monday and actually found an Endocrinologist we really connected with! This was very exciting! Until we met Dr. Jeha we hadn't really gotten a good explanation for Hans' Hypoglycemic incidents. After meeting with him it seems to make a bit more sense. We also had a good appt. Tuesday with Dr. Russell. She actually seemed to have lightened up her attitude. She said we'll just take the Accutane on a monthly basis. This month we'll be off. So, maybe we can enjoy the month. I thought - okay -- no planned visits for four weeks. Will we make it ? Then, my cell phone rang. It was the clinic - Hans' Potassium was low in his labs, have him come back tomorrow to retest. So, we went back in today. We had them redrawn and I was sure they'd be fine - just a bad test - he's acting great. But no, they actually dropped .1! Ugh - so the docs and Shari did some thinking and consulting with Endocrine and they figured that Hans has been having too much Florinef, one of his daily steroids, while he has been on his stress dose of Hydrocortisone. So, we're going to try to give him some oral Potassium and then cut his Florinef in half and go back on Friday! UGH! I just counted it all up and we've had 8 medical rendez-vous in the past 11 days, by Friday it'll be 9 in 2 weeks. Before he had his incident last Sunday only two of these visits were on the books. It's pretty exhausting! I just can't believe Kevin is making it in to work! He has become quite the papa bear looking out for Hans, and his instincts were right on the money about the Potassium. Poor Elle was sick on Monday, and off today, so she accompanied me to two of these visits. But, she's a pretty good sport. They both are really.

For Thanksgiving, Kevin and I hadn't planned much. Planning seems to be such a joke lately, that we actually waited until today to order a pre-prepared Thanskgiving dinner from the grocery store. Turkey always sounds good though!

Thanks for your prayers. Please try to say a special prayer for our dear sweet little friend Chloe today. She has relapsed Ewing's Sarcoma and the docs have just told her family that her current treatment plan isn't quite doing the trick. She's seeking the advice of a new team of doctors and looking into some experimental treatments. She is one of the sweetest little girls I have ever met. Also, we can always think of our TCH friends with relapsed NB: Carlie, Ryan, Colby and Erin, as we also pray that Patrick, Hans, Roman, Will and Chloe will remain "NED". Thanks!

Lara

Hello...

Okay - things are starting to settle down a bit. Hans is perking up. But, yesterday he had to miss his buddy's bday party. Shhh... we didn't remind him. Elle went, but now she's out with a stomach bug! Poor thing.

I have just a couple of quick announcements or things I want to tell ya:

Check out this article: http://www.thecourier-online.com/site/news.cfm?newsid=19035267&BRD=1574&PAG=461&dept_id=532215&rfi=6 It's a story on Hans, Carlie, Will and Roman. The four kids fighting NB right here in the woodlands. The photo doesn't show up online, but I ran up to Randall's (grocery store-like Safeway to those on West Coast) and got the last copy. It is on the front page of the Sunday paper with a huge color photo of the four kids. We all got together on Thursday and I just ran Hans over to Charon's for the picture. I didn't want him spreading a possible virus to the other kiddos - it worked out okay. Thanks to Charon for doing a great job of making that article happen!

Also, we are Aunt and Uncle and First Cousins for the first time ever! Kev's sister Anna, gave birth to baby Emma Harvey this week! I'm so excited and I know Matt and Anna are proud new parents and Grandpa Dean and Grandma Diana are proud grandparents once more, just as Great Grandma and Grandpa Web are proud great grandparents once again! It's fun to have such a joyous event in the family to celebrate!! Welcome Baby Emma! I want to post your picture soon!!!

Finally, I want to post this picture of my Uncle Dean! I'm so proud of him for collecting pop tabs for the Ronald McDonald house. He only gets one soda a day, so he has been hard on the look out for all these others. Uncle Dean is Hans' godfather. I think it's cool that he has been collecting tabs for the RM House for years! He sent his most recent batch to Michael Smiley to support his cub scout troop's efforts to save up tabs for the RM house.

That's all for now! Thanks for all your posts, emails and calls after our rough week.

Lara

What a week!

So, our rough luck continued beyond Sunday. I am just now getting to post. We went back into the ER early Tuesday morning. Hans had some serious diarrhea at about 2:30 am, then we noticed a fever, first of 102.2 and then it rose to 103. something, then he had more diarrhea, we called the oncall doc and headed down to the ER. The poor baby was vomiting on the way down. We got there at about 6am. They just gave Hans fluids, and, figuring it was likely viral, didn't dose him with Antibiotics. He only vomited once more at the ER. We were sent home by 3pm. My mom was supposed to fly out on Tuesday, but pushed her flight back to Wednesday. Then, early Wednesday morning, Hans had another fever, we gave him Tylenol and then watched it continue to rise. At 1:30 am it hit 103.9 so we called the oncall docs once again, and we were headed down to the TCH ER for the second consecutive late night/early morning run. He was again given fluids and stress doses of Hydrocortisone via IV, and this time a broad spectrum antibiotic. Just in case. They are still thinking it was viral. We were sent home just after 7, and somehow Kevin went into work after those two rough nights. Hans has remained borderline stable. He is not totally wanting to drink, so we are forcing it on him. His diarrhea hasn't completely subsided and he just acts like his tummy doesn't feel right. He isn't eating much.

Then, on Thursday, I decided to keep his TCH Dental appointment. I was pleased that they only found one small cavity which they said I could sit on and come back in 6 months! Thank God! With all the sugars we have had to push on him to keep him stable, I thought it might be much, much worse. In fact I totally lost it in the dental room and the tech just gave me a big hug and said, "You've gotta keep his sugars up, mama!" She made me feel better and deserves a gold star!

We also met with Dr. Russell for a conference after all this yucky stuff has been going on. She told us she wants to keep Hans off Accutane for December and January. She suspects that the Accutane is somehow acting to weaken Hans' already compromised immune system. I took this news pretty hard, as Accutane is the best known defense against the significant risk of relapse. We just need your prayers now, for Hans' increased health and stability; for Hans to get well enough to continue his course of Accutane. Hans is a complicated case and he is sort of charting the course for how to recover from the Neuroblastoma treatment protcol without the benefit of adrenal function. Thank you for including him in your prayers. Thank you for going online to http://www.lunchforlife.org/ and giving a little to help fund research to make these treatments better.

The up side was that my mom was here for all three trips to the ER. Can you imagine what a blessing that was? Elle was taken care of, she got to school, managed to keep up with all her homework and reading and extra projects this week. She's quite the young lady!

I'll keep you posted. We meet with TCH Endocrine on Monday, and Hans has his monthly office visit on Tuesday. I'm once again logging many hours in the car to and from the hospital. But - I've been checking out books on tape from the library. It helps and Hans doesn't mind at all!

Thanks again for your prayers. And, thanks to Laurie Miller for taking care of Elle and getting her to the Pump it Up party on Tuesday while we hung out with my mom and stayed home with Hans. Sorry to Alana, for having to cancel taking care of Zach while you wre at your pre-op appointment. I'm glad to hear the op went well! Sorry to Glen Loch for backing out as a chaperone for Tuesday night's party! Guess I should try not to commit to too much these days!

Lara

Wow! What a weekend part 2!

Wow! What a Weekend!

Okay - this time I mean that in both a good and a not-so-good way.

I'll do the not-so-good first: Hans woke up groggy and out of it on Sunday and we checked his

blood glucose and it was at 31! Dang - had to call 911 and rush off to the ER. He remained awake and stable and mostly with it- just a six hour tour of the St. Luke's at the Woodlands ER. It was our first time receiving treatment outside of TCH and that part actually went okay. We're working on getting him seen this morning and getting more clues on how to prevent these episodes... He had a slight cold, but had just checked out at the pediatrician on Friday with no ear infection and no fever...

Unfortunately, Hans had to miss his big Lunch for Life Block Party:( But, we all had fun! And our amazing neighbors raised $500 for Neuroblastoma Research and we had an awesome time. The big organizers of the bock party, Mark and Michelle Nolen (in kahootz with Kevin and Elle) gave me the surprise of a lifetime. They arranged to have my mom fly out for the party on a buddy pass! (Mark is a pilot for Continental.) Was I surprised! And, it worked out perfectly that my mom was here to take care of Elle while we took Hans up to the ER. He was discharged by 2:30pm and we were all able to do a shift at the party! Hans was fine at home, he was stable by the afternoon. Right now he is playing in his new sandbox. It was supposed to be a big surprise for the block party. Michelle's parents, Mathilda and Lonnie Minz got it for him since he had so much fun with Jack's over at their house. (Two weeks ago at baby Josh's christening party, Hans played in their sandbox for seriously 3 1/2 hours straight. That's when Mathilda decided she was getting Hans one of his own!) Pretty incredible family. We are fortunate to be blessed with many sweet neighbors. Everyone pitched in for food. Becky did a beautiful Lemonade stand, and Michaella and Tyson provided a bouncy house! So cool...Above!

Lara

A few more pictures

Thanks, Michelle, for sending these along from a couple weeks ago! We all had a great day at Baby Josh's Christening party!

Crazy Week!

Wow - we had a little excitement around here this week. Thankfully, it had nothing to do with Hans. One of our cats, Orange (Hans' favorite), must have gotten hit by a car on Tuesday morning. He was acting strange and not walking right. But, he managed to crawl up under the deck. Kev had to pry up a deck board to get him out so we could get him to the vet. Xrays revealed a fractured pelvis. They kept him in "intensive care" overnight to see if he was going to make it. Fortunately, he pulled through. Now we have him crated and he has to live in there for 6 weeks to allow his pelvis to heal. Poor kitty. He's on a Fentanyl patch and we'll have to give him oral narcotics for a while. Geez! Thanks, Ginger, for loaning us a crate and an extra kitty box and saving me a trip to the store!

Other than that, Hans is still holding his own with 3.5 days to go on Accutane for this round.

It's nice to have such great help with Hans' LFL campaign. Thanks to everyone helping us pass out bags all over the place:
The Woodlands, TX, Raton, NM, Chicago, IL, Scottsdale, AZ, Santa Cruz, CA, Portland, OR, Seattle, WA, Edmonds, WA, Bellingham, WA, Ellensburg, WA and Mattawa, WA. It's pretty cool to see Hans' tree grow. I'm going to order more bags next week, so please let me know if you want more.

Our wonderful neighbors are throwing a Lunch for Life Block Party/Potluck for Hans on Sunday. We're all really looking forward to it and I hope to have pictures to post for you soon.

Elle is doing great and we're enjoying a week of light homework after progress reports came out last week. She's doing well and has worked hard in 3rd grade. She's learned all the lowercase cursive letters and they're about to begin both uppercase letters and multiplication! She's getting so grown up!

Lara

Poem by Elle

Here's a poem that Elle came up with last week:

My name is Elle,
I am a bell,
I may have fell,,
Oh well!


Elle

Bone Marrow Clean!

Hi there,
Just wanted to share the good news we found out today that Hans' Bone Marrow Biopsy was clear! Thanks for everyone's prayers.

We did have a mellow weekend and enjoyed just getting a chance to do random things around the house - spot clean the carpet, clean the kitchen window, etc. etc. Kevin trimmed up the yard and Hans had fun spraying all of us with the hose.

Elle's soccer team, The Dragons, chalked up their first tie of the season. We found out that they will make it to the City Playoffs! It's pretty exciting. We always played at the Y up until now, and they didn't even keep score. It's fun to see the girls playing out there.

That's it for now!

Lara

More Halloween Pictures!

Our Neighbor, Alana, just sent us these pictures. Hans and Elle, Hans and Elle with neighbors Jack and Zach, and then one of our newest little neighbor, baby Zoe, just over 1 month old.

We got through Hans' two appointments this week! Yesterday, we finished with the Audiogram and had enough time to go to the zoo. We saw the aquarium and then went right to the food court where Hans ordered both a kids chicken nugget meal and a slice of pepperoni pizza. This round of Accutane has been okay so far, he seems to be tolerating the increased dose now for the first 5 days.

Still no official word on the Bone Marrow...I called and left a message, but I haven't heard back. I assume that if they did find something in there they'd be treating it by now, but still it'd be nice to know. We are happy to have a sort of quiet weekend with not a lot going on other than soccer and CCE this morning.

Thanks for all your LFL contributions. Hans' tree looks great. He likes to look at it, when I'm on the computer he'll come up to me and say, "let's check out my tree!"