Hello From Seattle

Hi There,
Just a quickie little post to say that all is well in the Pacific Northwest. We have been hoppin' around the state! We got in on Monday and delivered Elle to the top of Snoqualmie Pass to meet up with Grandpa Dean and Auntie Anna and Emma so they could get her to this week's golf camp with Grandpa Dean in Mattawa, WA. They are having a blast, but are not exactly beating the heat in 105 degree weather...

Hans and I are hanging on the West Side of the (Cascade) Mountains. Hans is doing great. We are coming into the fun time on the calendar/in between chemo side effects. I'm enjoying it. It's great to be here in the pleasant weather (we can actually go outside!)surrounded by friends and family. Hans and my dad and I took a day trip to Mt. St. Helen's. It was incredible! Kevin's still working back in Houston; we feel for him that he's not up here, but maybe he'll be able to join us for a long weekend???

Anyway - Hans doesn't need to go into clinic here until the middle of next week, and everything is going well!

Lara

Happy Birthday to Hans!

This post is belated by a couple of days. Hans celebrated his 6th birthday on Wednesday. We are so happy to party with him all this week. He had a big Pump It Up party with a bunch of his friends and a home made crazy iron man cake. I didn't hardly get a picture, because I am way too frantic during a party to remember to take many pics. But, we want to thank Roxie, our friend and Hans' godmamma for coming out to be here with us this week (she flies back to Santa Cruz today), and we want to thank Vickie for coming down from Bryan to celebrate the day with Hans. I also want to thank all of our friends that we were able to invite for coming out to make his day special. Hans loved his party and felt like the king of the world, I think.

When Hans was first diagnosed and getting through his first course of treatment, I remember thinking that if we could get him to age 6 (without relapsing) we would be out of the woods. I don't know what stats we based this assumption on, or what it means now that he has relapsed and is NED once again, but it is still joyous to be here, at the big 6, looking forward to giving Kindergarten another shot in just about 5 weeks! I think he feels proud to be getting big. It was cute to see him figure out which configuration of fingers to use to show people he was six for the first time. He tried it out a couple of different ways, but now he's opting for the traditional five on one hand plus pointer on the other.

His actual bday was cluttered with a counts appointment at TCH. His counts are looking good! But, he is on a bit of an emotional rollercoaster that makes him moody and unpredictable while on the ABT751. So, we decided it best not to brave the 105 degree heat to go do Sea World and San Antonio just now. We've been entertaining ourselves at home.

Yesterday, we knocked out several more lanyards and even taught Kevin how to make one! I sent all my stock and Carmen's stock too up to the CNCF NB family conference up in Chicago with Athena and Tracy, so it feels good to be getting some stock built back up. I think we're already back up to about 20 lanyards after a day's effort.

I've got two days to get ready for our trip. Looking forward to seeing our family and old friends. Email me at kevinandlara@hotmail.com if we still need to make plans to see each other! We'll try to come up with a couple of open invitation get togethers, one in Ellensburg and one in Seattle/Edmonds so we can be sure to see everybody.

Lara

Mission Accomplished

On Saturday we got a little ambitious and hit two pools to complete our mission of 13pools in 13 days! It might be considered cheating that we only made it to the last pool with 30 minutes before closing. That was fun. Now, we can just go back to our favorites. We like the pools with diving boards these days, since that's Hans' favorite thing to do...just jump.

Hans is on Day 4 of Round 7 and it's going okay so far. He sleeps a bit restlessly, but he sleeps. I think there is an edginess to his moodiness at times, and some real crises can brew. But, usually what we try to do is just change up the venue when trouble starts. So far so good.

We pick up Roxie today. If all is going well, we'll try to do a short trip to San Antonio and perhaps even Sea World???

Round 7 ABT751 Under Way...

Hi,
I think my feathers were a bit ruffled this week. It's frustrating to get information painfully slowly when your boy's treatment decisions hang in the balance. But, I need to move forward, and focus on the fact that the Echo showed good heart function, and we can just proceed! Halleluiah!

Hans started round 7 of ABT751 yesterday. The side effects haven't popped up yet, but they likely will be showing up over the next several days.

We are just continuing our mission - two pools to go! Then, next week, Hans will be celebrating his Big 6th Birthday! Yeah!!! Our great friend Roxie is coming out for the week and we will surely have some good fun times. Then, it's off to Seattle the next week. Kev can't come though:(, he has got too much going on at work. But in this crazy economy, we just feel lucky to keep the paychecks rolling in, so I guess we'll do what we gotta do, or he'll do what he's gotta do for us, rather...

I have to share this blog. In some of the saddest news I've ever heard, this family has suffered the loss of their Super Ryan, www.superryan.blogspot.com, but also their loving mom, Missy, as well. Missy lost her 2 year battle to breast cancer two days before Ryan lost his 5 year battle to NB yesterday. If any family could use our thoughts and prayers now, certainly, the surviving members of this loving little family could... Les, Will, and Heidi.

I used to ponder so hard over the hypothetical question... if you only had one wish, what would it be? Now I'd tell any little genie that popped up in front of me in two words, two seconds, no second guesses, "Cure Cancer."

Thanks for checking up on us today.
Lara

Scratch that, I guess

Okay - so this week has been a bit of a rollercoaster, but all's well that ends well, huh? As of my post this AM I thought we'd be waiting until 7/21/09 to see a cardiologist to make a decision. But, I just got off the phone with CHOP and they agreed that the report looks normal. Maybe the Echo in June WAS just a bad test?
The tech was way off, by the way, the value was MUCH better than the June test.

Soooo... We start Round 7 tomorrow! We will do an additional Echo after Round 8.

So, you can scratch the post below. This is good news. We'll take it!

Lara

Gridlock

Hi, I haven't had much illuminated about those echo results yet. It is honestly a bit frustrating. But, these are the dangers of dealing with multiple hospitals, mulitple departments...gridlock. After many phone calls, emails, voicemails, etc. all week, I think we finally got an appointment with a cardiologist. But, the date is set for July 21st. That doesn't sound so hot to me. So, I'm trying to see what I can do to get that pushed up.

Meanwhile, Hans has continued to do well. His stamina for doing activities and being out and about/having fun has improved. I was watching my friends Kelly's boys on Tuesday and we got some much needed rain, so we made it to Chuck E Cheese rather than a pool, and they kids played for FOUR HOURS! Three other girlfriends joined us, so there were 11 kids in all. Yesterday we checked Harper's Landing Pool off of our list. I think we have 4 to go...

Thanks for checking up on us... My friend Kelly continues to do well fighting her relapsed Breast Cancer, and her boys were darling while they were here. We have so many little friends both locally, and cyber-friends, now fighting relapse, just wishing them all the best in their news of scans and while they are all out there fighting the good fight.

Lara

Echo is somehow 'normal'!?!

So, today has been a strange day for news. I'd have titled this post ups and downs, but I didn't want to freak anyone out. We went in for the Echo Cardiogram early this morning. Hans did great. Most of the time he is a really great sport about his treatments and scans! It doesn't hurt that children's hospitals are so well equipped. He watched Imagination Movers the whole time. I was more chatty than usual with the technician, and wound up telling him the whole story of Hans' last few echos. He was very nice, and then he told me that the shortening fraction was pretty much the same as the last echo. Ugh. So, I was a little bummin' today. We had to get Elle directly to an appointment in The Woodlands by 10:20 am, and then, I was wiped out by the time we got home. We just took it easy around here, and I sort of tried to make sense of the news...And then, I got a voice mail, at about 4:30pm that the caridiologist had reviewed Hans echo and the results are normal!?!

So, I haven't had a chance to speak to anyone about this yet. We don't know what it means. If his shortening fraction is still low, how can that be normal? Is it just normal for Hans? Or, is it explained by something else? We don't know yet if/when we'll go back on the ABT 751. But, I hope to get more info soon! I am just a little confused. But, I'm left wondering if maybe my gut instinct to think of it as a non-issue was right on the money???

I perked up a little bit after getting the voice mail. We hit another pool after dinner. We now have 8 down and 5 to go on our mission of 13 pools in 14 days.
It's not the most noble mission, but it has been a good way to pack in some serious pool time in our two bonus weeks off chemo!

Lara

Happy Fourth of July!

Hi there,
Wow - I just looked at my last post and was surprised to see that was last Monday. Whoops. I was trying to do better... Guess I was just busy... this week we've been swimming a lot! We're taking The Woodlands Pools 13 Pools in 90 day challenge, but we're trying to do it in more like 15 days, so we'll see how we do. We got our punch card on Monday, and we've already checked off five pools. I can get a little obsessive;)

Tuesday, I had a group of four beaders over...Elle and her friends Kelly, Kae and Morgan. The girls did a great job and we are getting stocked up to send some lanyards to the CNCF conference this month. We can't go this year, but the lanyards will be there, in case people want to buy, or maybe some other families will get the 'bead bug' too... Kelly got it! She's already been back by to pick up more beads for additional projects! I love it! I'll try to do a couple more of these little workshops.

Since then, its been some swimming and pool play dates and more fun. We're very much enjoying Hans being more back to Baseline Hans. No ABT side effects! Life is good. We found out his Echo is on Monday. A cardiologist will be standing by, watching, as this echo is ordered with some "extra windows". Whatever that means... I think I'm putting a mental wall up about this heart stuff for the moment. I almost don't want to learn about it because I hope it becomes just a non-issue. Maybe I have my head in the sand, but maybe it's a little more self-preservation. Who knows! I'll keep you posted.

This morning, we had the privilege of watching Elle do Baton with the Texas Twirlers in The Woodlands Parade. It was pretty cool. Elle and I went and helped decorate the float last night. So, this has been a pretty big deal around here. I am pretty impressed with her skills after only 3 or 4 classes! Being from the Northwest, I never thought I'd be the mom of a "Texas Twirler", but hey, it was pretty fun! Now we have a few hours of downtime before we can go stake out a good spot for the Fireworks. The Tour de France starts today, so, we shall be watching and enjoying.

We snapped a couple pics - Elle and friends at the parade, and I snuck one of Hans (he was trying to hide from the camera), but this one was taken just now. Too bad I couldn't get one of his hair. It's been kind of amazing lately, it looks like he's seeing a professional colorist for all his pretty blond highlights.

Happy Fourth. Be safe. Take it Easy.

Lara