Speed Demon

Here's a funny video, hope you like it!
-Elle

Some Pics

All of us out for dinner at Tom Sawyer's (basically a pub) but Hans can do bar food! It was so nice to be able to eat outside!


They have a great system for identifying what rides the kids can ride at Hersheypark by height. Elle was a Twizzler


Hans was a Hershey Kiss (Kev and I were Jolly Ranchers)


Hans and some Canadian Geese on the Susquehanna at Downtown Harrisburg

The highlight of our trip to PA was just touring through the pretty countryside! We really enjoyed driving through the farmland in the much cooler 80-something-degree temperatures. It was exciting to see some families traveling on Horse and Buggy. We say many signs for Mennonite Churches, so we figured we were in Mennonite country. I think we passed at least 8 families on horse and buggies. It was cool! We also passed some crazy bicycle contraption that carried about 10 ladies, that Kevin and I couldn't figure out. We also enjoyed Harrisburg, the capital city, right on the river. It was so pleasant outside, you had to love it.

We had fun at Hersheypark (like a Disneyland), but it is a little crazy when your kids are such different ages and at different stamina levels. It was fun - but intense! I think Elle and I should have gone as the park opened, and had Kevin and Hans join us for the last 4 hours...

We didn't have much time to explore Philly, it was pretty much all business by the time we got there. It was awesome that we got a room at the RMH this time. The social worker called it a miracle, that a family had just checked out! We were taken care of from the moment we checked in. Hans was thrilled b/c McDonald's donated Tuesday night's dinner in the house, and then a magician, Mattcadabra, entertained a handful of us. Hans was at the perfect age to be mystified by his tricks.

We picked Elle back up from Austin yesterday and are up to our regular summer activities... a little swimming, hopefully a little beading, a few playdates and sleepovers, etc. Hans is looking good and doing well! I have to call to see if they have his echo lined up yet.

Thanks for checking up on us.

Lara

I guess I should Post Some More...

So, I thought I should fill you in a little better on the heart stuff... I have made contact with Dr. Russell and she is going to set up an appointment with a Cardiologist and she's ordering a special kind of Echo. What happened was Hans' Echo function has come down significantly over the last three tests in Jan, April and then June. From dead-on normal range, to below. But, we are assured by Dr. Mousse, who co-chairs the ABT751 Phase II Clinical Trial (open for kids with measurable disease), and who carefully pulled all of the files of kids on the trial that had similar patterns on their Echo, that any decreased function was fully and completely reversible. So this is our action plan:
- retest the echo (I hope this happens within a 2 week time table)
- hold the ABT751 until we get results
- if the heart function increases, we'll restart the ABT751 at full dose, and repeat an echo after 2 rounds
-granted the second echo looks okay, we'll go ahead and continue 2 more rounds before returning to Philly for quarterly scans and office visit
- if the heart function remains decreased, we'll likely find a med for that, and restart the ABT751 at perhaps a lower dose???
-However I'm a little nervous that a Cardiologist will take one look at this pattern and recommend coming off the ABT751. Wish it was that easy! Wish there were a handful of other options for keeping kids in a second remission!
The thing that concerns me right now is that our plan is up in the air. I don't like having things up in the air. I get worried that things will drag out farther than the time line at hand. I'll be a nervous wreck if two weeks have passed and we don't have a new plan. But, for now, I can almost get on board with this two week vacation from chemo. It'll be nice to have a side effect-free Hans to hang with!
It does make me a little sad to think that maybe Hans wasn't up for much action that past week because his heart wasn't pumping well enough, and just using his toe as an excuse...

Speaking of Hangin', Hans got to do some professional hanging with all of Erin's big-boy buds yesterday, as we were able to show up in Bryan, TX for Erin's Dream Lanyard Workshop. I had to drop off Elle for a weekend in Austin, at a drop off spot sort of out that way, so Hans and I decided to traingulate a trip to Vickie's to get in some good Willie/Uma/TedE time and he played Wii with the big boys. It was impressive and heart warming to see all of these BOYS show up to bead in Erin's spirit and honor. There were at least 5 or 6 of her guy friends, 3 girl friends, and a lot of hip mamas there to bead. How cool to be a part of it! I wish I would have had Elle with me, but she's off for some fun with her friend Emily.

I'll post some pics of our trip as soon as I can. I think we spilled something on our camera, and I'm not sure if I can revive it!

Lara

Back From Philly...

It's late and I'm a little pooped - I'll give you the quick scoop now.

Good news: Scans Still Clean! This was by no means a given. Hans and a handful of other kids in a second remission for Stage IV relapsed NB are on this ABT751 on a compassionate/experimental basis. There just isn't enough data to predict success with any certainty. Especially with a disease where, when it comes back, you can scarcely find an oncologist who can rub two digits together for a survival statistic. But, we are sinking all of our eggs in this basket and taking it as far as we can. The important thing to me is that our gut feeling is telling us to stay put, rather than calling us in another direction.

Not-so-hot-news: Echo cardiogram wasn't great. (Heart problems are an uncommon side effect of being on the ABT751, in addition to some of the other treatments Hans has powered through...) We are going to follow up with another ECHO in a week or two here at TCH. We are holding the Round 7 of ABT 751 that should have started Friday until after the second Echo. Kevin and I are hoping it was a bad test. It's a possibility. But I can be a little on the wildly optimistic side! Either way, it wouldn't be a deal breaker, we just might have to make some concessions to stay on the ABT...

I'll explain a little more in the coming days and fill you in a little on our trip, (we thought Central PA was very pretty!) but I wanted to put out the headlines before my head hits the pillow.

Thanks for all of the prayers you have said for Hans and all the other kids undergoing NB and other treatments. It really is a crazy life!

On another note...goodbye to Kevin's Grandpa Bud. He passed away on Father's Day morning. He was a really good man who lived a good life and paved the way for all of us to have so much in our lives. You will be missed, Grandpa. It was very special that Hurricane Ike brought us to your doorstep in Arizona and we got a bonus visit with you! We have also recently lost another of Kevin's grandpa's - Grandpa Don. He was a really cool guy and a special Vet who served the people and animals of Kittitas County, WA for 40 plus years. One family is lucky to have two such special gramps'.

Lara

We're off

We're all headed up to PA first thing in the morning.

Hans finally hopped back in the pool yesterday! Thanks to The Millers for having us over for a swim. I was thrilled that figured his toe healed up enough to allow for more normal summertime activities. Elle and I get a little cooped-up feeling, whereas, Hans can be more of a homebody type at times, more than thrilled with playing with his own toys, video games, shows, etc. Kevin and I still comment on how well he studies all of his Transformer directions to transform from Robot to Machine.

I should be able to post Weds night with news of scans. It is insanely nice to be able to go directly from the MIBG to an office visit with scan results.

Our scanxiety level is bouncing around a bit. Hans seems to have been senstive this week, but it has been more behavioral stuff than pain stuff. So, we're happy that scan are coming right up and we'll soon have them behind us.

Thanks to Alana for watering for us and feeding the cats!

More thanks: Thanks to Sparrow clubs for Hans' sweet new ride - a BOB jogging stroller. This is the perfect answer to 'sleepy' legs he gets at times. He can ride in style and we are planning to explore Hersheypark this week, and Sea World the week of his birthday - so we'll be putting some mileage on it! Thanks to the Sweebe family for Hans' other sweet new ride - Cassie's old Power Wheels! Can't wait to fire it up.

Thanks to everyone for your prayers of continued good news.

Lara

Who wants to take a survey???

Hi,
Just a quick post today! My friend Vickie has put together a survey on Survey Monkey cut and paste to check it out: http://www.surveymonkey.com/s.aspx?sm=yGa1bnjg_2f3jM52TcSJgKng_3d_3d She is working with her Congressman Chet Edwards on making recommendations to health care policy changes. She is specifically focusing on the needs of the family with an ill child. So, please go ahead and check it out! I think Erin would be so proud of her mom. I often have this image of Erin leaning down from above to give high fives for things she approves of!

Things are a little wacky this week. Hans sustained a very MINOR toe injury (I am pretty sure he scraped it on a diving board at Alex's pool party on Saturday). Bandaid only required. And now, he is being rather unreasonable about going swimming. Which is a little nutty in this record heat - it was really just about all I had cooked up for the kids this week! Ah well. He should be all patched up by the time we get back from Philly...

Thanks for doing the survey, if it applies to your situation.

Lara

Happy Monday

Hans at the newly remodeled water works at the Houston Children's Museum. This is just about the coolest water exhibit I've ever been to!

The girl in the blue shirt is the one who worked best with Hans on his design

Hans' shirt was sent to him from our pal Sam in Scotland! Nice to see him in clothes, huh? We can thank Alex for that!


Elle, Kae and Kelly sweating it out at Rice Owls Soccer Camp

Hi there,
In my last post I mentioned a few of the side effects of the ABT 751, I guess I failed to mention Constipation - which is fairly easily controlled by Colace. Hans also seems to get dry skin in a couple of places, cracks at the sides of his mouth, and dry skin in places like his ears?? Just a couple more things to note.

So, I wanted to put up just a few pics of our Camp Week. I wasn't able to get many of the girls. But Hans also had a super time at the Houston Children's Museum on Friday. We haven't been there in a really long time (for quite a while there I was actively avoiding large germy crowds). He is a trip. Instead of flitting around a million exhibits, he pretty much stays in one place. Here, he planted himself at the pipefitting station of the water exhibit. It was interesting b/c he seemed to think of himself as junior boss while he was there. The other kids who came up didn't all have the same blueprint for this pipefitting that Hans was working on. He was an expert at using nonverbal cues to get the other kids on the same page. Most of them just shook their heads and ran off, but one girl really fell into step with him and they worked on a great design together. I've heard Dr. Russell refer to her cancer kids as the "Alpha Child". They are very used to getting just about everything exactly as they want it. It'll be interesting to see how things go at Kindergarten!

We had a fun weekend of more and more swimming, Alex's bday party, etc. And then, yesterday I decided to go ahead and give blood at church. The last time I tried was about a year and a half ago and I actually fainted afterwards. But, a post from Chloe's mom asked us to consider giving blood in her honor this month. Well, I made it! And, I decided I should just lounge around the house and recoup. Kevin grilled salmon for dinner - so I was off of all domestic duties, and it was rather nice. I feel back to normal now.

We are just planning on doing a few swimming dates this week, and getting ready for Philly. We leave on Sunday and we are actually going up a couple of days early to take Elle to Hershey, PA, the home of her favorite chocolate bar.

Lara

Last Day, Round 6 ABT751

Hi,
So far the ABT goes down relatively easy. There are a few side effects that pop up... Hans can be a restless sleeper and he also says that his legs feel tired or sleepy. Both Neuropathy and Insomnia are possible side effects of the ABT. We are also starting to see that there is an emotional component to it for Hans too. It's just hard to tease apart, what are normal 5 year old behavior issues, and then what are drug related, possibly stress dose steroid related, or other issues! Hans used to have tantrums... but these days, when he has an episode, it can turn into almost total withdrawal and it's a little scary b/c we don't know if he's having an adrenal crisis! Or, is he just playing us??? I guess we'll never know, but it all keeps us on our toes, but so far, we see no reason to stop using this drug. I just wanted to put all of that out there for other families considering using it, or who are already on it.
We are now less than 2 weeks away from scans. I've been flipping back through the blog and I'm awed by where we were one year ago (at original relapse), and even more so, awed by what we were going through 6 months ago (the MIBG therapy in Philly which was really rougher than we'd bargained for). But really, the biggest surprise is where we are right now. Things are relatively calm and normal. I have learned that the only need us in clinic once every three weeks. The oncologist effectively told us we can go get a life! It's a funny transition - coming off regular clinic visits. It's good, but yet it is an adjustment. I think, on some level, I associate going to clinic with keeping Hans afloat - so coming off of regular visits is good and weird at the same time. But, in the mean time - we are keeping busy!
One bit of good news is that Hans' Potassium has stabilized and he has been off his supplement for some time. This is a huge relief, we weren't sure if the kidneys weren't a damaged to the point that he'd always need to supplement his Potassium...

Elle loves going to this Rice Soccer Camp with her pals Kae and Kelly. It's such a pretty campus that I almost think it is worth the 40 mile drive (it's right by the med center and TCH). But it is soooo hot here 94 degree highs with high humidity, that I feel a little crazy for sending the girls out in this heat. I think it's very cute that the campus busses read, "Have a Rice Day!" Hans and I have been making the most of being down in the Museum District area. We've been back to the zoo, and to Rice Village... and once we are back in The Woodlands, we swim, and Hans jumps off the diving board and slides!!! As for Elle she is doing well learning Baton Twirling on Wednesday nights, and she has her last Volleyball game of this season tonight. I am providing Pink Cupcakes for the little party. I think I was somehow inspired by Chloe Castillo who would have turned 10 years old tomorrow.

That's the update for today. Thanks for checking up on us!

Lara

Summer has come (w/ same-day pics!)

Elle with her award for excellence (signed by Barack Obama!) She told me everyone got one of these

Hans and Elle on the Carousel at the Houston Zoo - Hans made a beeline for the snakes

Hans and the crab shell.

Hans, Elle and Patrick at Zoo event

Girl Scouts at Pool Party

Hooray for summer! Elle is now out of school and free as a bird and we already have tan lines! Hans has the best tan, even though I slather all of us in '50', one of the side effects of the Adrenal Insufficiency is that he excretes an excess of melanin, so he has to suffer with being gorgeous all summer long! His blond curls are coming in too, so he is all around just fun to behold these days. He has just started Round 6 of his ABT 751 and we scan in just about 2 weeks. I'm not putting too much energy into being nervous about these scans though. I honestly don't see what good it would do, so I think it's very adaptive of my psyche not to get too freaked out about it.

We have been having mostly good times and just a few quirks. Hans and Elle and I enjoyed an event called Star Night at the Houston Zoo last night. We had a very good time visiting with some TCH friends and having the children's section of the zoo to our selves with free carousel rides and a very cool lady name DJ London laying out dance tracks for us. Meanwhile Kevin was at the Astros for work, and he actually got to enjoy a winning game! Yay! Tonight we all got to enjoy an end of the year girl scouts pool party and Hans got to show off his swimming skills. Our friend Lucia has a tireless swimming and fetching dog, so Hans got to combine two of his loves swimming with dogs:) He was blissed out - but we had to pull him out of the pool to eat. We are still on high alert about making sure he gets enough calories to sustain him through the night. We have realized he won't stop the fun to eat, so at some point, we just have to pull the plug.

The big quirk was not wanting to be there at the big end of the year Glen Loch Awards Ceremony. I think the crowd really stressed him, or maybe it was the fact that he had still been on stress dose steroids, but he really didn't want to stay! Being a with-it, and go-getter student, Elle did have lots of awards bestowed upon her - but my favorite was "Future Environmentalist" as voted by her classmates:-) This fits right in keeping with her current career idea of being a 'green' architect. I got to see her get most of the awards, but eventually gave in to an upset Hans and headed back home. I wish he was a little more adaptable in novel situations. But, I'm very glad that we have chalked up two good nights at pool and zoo parties! Tomorrow he and Kevin get a guy's night in while Elle and I will do a beading workshop with another girl scout troop for lanyards and jewelry to sell at the next bake sale, (which is set for 9/11/09 btw).

I'll try not to slack so much with the posts and keep you updated, esp you, Vickie;) But, typically speaking, no news is good news. Thanks for checking up on us.

Everyday is an adventure. Everyday is a gift.

Lara