No Meds to Start

Here's the scoop: Kevin's in the new house! There is a lot of work to be done and we should be out there in about 10 days to join him and help him out. He'll come back out here once more next weekend to help us get packed up. We're swapping out pine tress for palm trees.

Hans was supposed to start the meds yesterday but they didn't come via UPS. It appears they were mis-shipped. They were supposed to come Air, but were sent Ground:( We may not get them 'til Wednesday! I guess the upside is that Hans barely made counts anyway, so a few days off may do him some good. I also found out Friday that they were considering a dose reduction due to the seriousness of his mouth sores this past round. Ultimately they decided to keep him on full dose for now. I haven't yet heard what they have decided about our scan schedule.

Elle had a bunch of girls over for a sleepover last night and we're going to try to join some pals at their bay house for tonight. Hans seems like he's doing increasingly better...willing to try new things. He made it through an entire 5th/6th grade band concert this week. He was actually cracking up at Mr. Flake's onstage jokes... We couldn't even tell that Elle couldn't really play. Poor kiddo had 6 stubborn baby teeth pulled this week. They just wouldn't budge and we needed to make room for the big guys.

Made Counts, but just barely..

Here's a shot of Hans "getting his groom on" - grooming Dash at his last lead line club class with Ms. Amy last night. He fed Dash 5 entire apples after the ride.



Here's another shot I took for the scrapbook - this is Hans with our Hands-down favorite pizzaman, Kendall of Pizza Tonight. They've had a great relationship. Kendall has helped us keep Hans on the face of the planet by keeping him in fat and calories these past 4.5 yrs and Hans has helped Kendall's business by being his "best customer"! Pizza Tonight is located just doors away from Hans' school.

Hans went in to see Dr. Irani this morning. Hans made counts but just barely with HGB at 9.4, plts at 118 and a really strong ANC of about 6000. Hans still has a rough little cold - I know it's rough because I got it too. I start getting a little whiny about my cold, but really stop myself realizing that all Hans does is stay "stupid" when I ask him "How's your cold?" He's pretty tough! That what Dr. Maris said after taking a peek in his mouth last week.

We have to wait for thumbs up and medication from CHOP - the plan is to start on Friday but we shall see...

This week has been heavy with paperwork and moving details. It gets kinda crazy stressful! We sold our playstructure already! Would you believe we sold it to a family relocating here from Bakersfield!?! She works for the same company as Kevin. It's like my dad always says, "It's a small world but I wouldn't want to paint it."

I feel like we are in a pleasant whirlwind of getting stuff wrapped up and having special little lunches, meet ups and play dates with some of our pals here!

home

I got an easy pic of Keiran but Hans was dodging the camera in the registration area...

I think I left you hanging. We've been home since Wednesday night and Kevin is now here with us! The news: Dr. Maris said there was a "very faint slight positive" read on that one spot on the skull on the MIBG scan. I think it's about as little NB as he could have (I could be totally wrong on this - maybe he could have way less NB, but that's how I like to think of it). They also had some WONDERFUL news that they are going to petition the FDA to amend Hans' scan schedule. I'm hoping and hoping that we can go back to scanning in Philly every 4 cycles or 12 wks instead of every 2 cycles or six weeks! That would be just amazing and amazing timing for our move - we'll be farther away and the trip will be harder. I hope to find out next week. Hans goes in for labs Wednesday and if he makes counts he is to start Round 24 (?) of MLN8237 on Friday of next week.

There were two little bits of bad news. Hans had awful Stage 5 mouths sores this round. It has been getting in the way of what he eats - which is actually sort of scary for Hans on two fronts: growth and risk for hypoglycemia. The mouth sores are better now, but he brought home a pretty rough cold from the plane!

Meanwhile - we have been enjoying many little get togethers and parties of Spring! It's been fun, and it does seem like perfect timing to make our move. We close on our home out there May 27th so Kevin will have Memorial Day Weekend to get a start on the place. The movers pack us up the first weekend in June and we close on this place June 8th!

I have posted Hans' Make a Wish playstructure on Craig's list and Woodlands Online. If anyone is interested, please email me at kevinandlara@hotmail.com. We will put proceeds from playstructure towards Hans' diving board for our pool and to 'do' his new room... he'll get a second wish out of it!

quick good news report

All seems to be well on the scan. We are actually just sitting in the waiting room before our appointment. Dr. Mosse kindly popped over to let us know the scan looks good. We haven't yet seen Dr. Maris so I assume that it's stable and not gone, but good to know.

We have feasted on chips n salsa, joe's pizza and wings, and then the philly diner! Enough feasts for the week I'd say. We should be ready to hop on a plane in couple of hours to get back to Elle and Honey and Kevin won't be far behind...

Thanks for your kind thoughts and prayers as we got through yet another round of scans!

CHOP CHOP

Hey there!
Haven't even posted to let you know that we are already here - here at CHOP for Hans' 40th or so MIBG scan!!! Nah, not 40th, but it's gotta be up there.

We flew in last night to find out there were no rooms at the ronald McDonald, nor at any of the hotels in Philly because its graduation for just about every college in town! We were stuck. Luckily, our friend Dawn came to the rescue and came to scoop us up and take us home. We are borrowing her wheels and her son! Keiran escorted us to CHOP for a day of Labs and MIBG injection. What a sweetheart. This is a 13 yr old boy who is carrying my bag around saying 'Thank You' at every opportunity! What a treat.

I'll post tomorrow with MIBG results. Gosh, so hoping and praying for stable or better! Thanks for your thoughts and prayers for our intrepid little dude... Go Hans!

Lara

back in the saddle

I finally, actually brought my camera, with batteries charged and all to horseback riding!

We are down to one more session, but here's Hans on Dash. Last night we rode the sensory trail and practiced transitions. Hans is good at getting his horse to stop, go, circle, turn and reverse.

We finally got some rain here. We've been in a rare 60 day drought here in the Houston area. Usually our springs are peppered in thunderstorms which I mark by cancelled soccer games and trainings. No trainings or games have been cancelled this Spring and things had gotten so dry that telephone poles started to go up in smoke around town. It's very charming to me that over these past two months, the same time I was living through the leukemia scare, each time we pass a certain fountain, Hans' wish was simply for some rain! He's just a sweet regular boy thinking about our flowers and our little tomato plants, wanting it to rain so that he can get a break from watering duty.

Elle is spending the weekend away at a girlfriends b'day party beach house weekend. Hans and I plan to hit the Woodlands Community pools preseason opening day. We've, of course, been counting down the days.

I want to say thanks to my NB mamas, who treated me for a special mom's night out this week. I received a ridiculously wonderful going away gift of the James Avery Sisterhood Ring. The meaning behind it is so special, and it's just a gorgeous thing! It has fast become one of my most prized possessions. Thanks, girls.

Med News: Got Neulasta shot yesterday at clinic sans tears. Labs were still pretty regular HGB 11.3, pLts 278, and I'm delighting in the fact that the MCV has been falling since our scare, yesterday back down to 95!

Cool as a Cucumber

Made it through another night - cool as a cucumber! Hans is doing a double session with his teacher right now, so all must be well. We may have just run him into the ground this weekend?? He seems to be okay!

I forgot to mention a THANK YOU! I'd like to thank our local chapter of the National Charity League. The NCL is a group of young ladies and their mothers who do charitable acts for the community. This past Saturday, I attended a lovely brunch and received a generous $1500 donation to the CNCF! Charon and Athena were huge helps to me in pulling off our NCL lanyard workshops this year. Thanks:)

cinco de "mario" to "mudder's" day

We just had a nice little whirlwind weekend with Kevin home for the weekend. It was nice! I took the kids out for Los Cucos on Thursday - and I got a kick out of Hans calling it Cinco de "Mario". Kevin got into town and Elle had already left for her final Girl Scout Campout with her troop. She got a pass to go to a soccer game and managed to get a goal in her last game with the Texas Rush! Yeah. For Mother's Day we took a hot little hike up to Spring Creek at the Montgomery County Nature Preserve. Hans is a water dog just like Honey!

Hans is now on Day 4 of Round 23 of MLN8237. I actually took his temp this morning to find he is fighting off a fever - at just 100, it's not enough to call the docs yet, but I've cancelled his school today to watch him like a hawk and make him eat, drink and rest and hopefully we can dodge a big fever! Yikes.

Lara

Made Counts - Round 23

Quick update here - Hans Made Counts to start Round 23. Now we will just wait until the meds get delivered from CHOP and we're all set to start. Hans' HGB was up around 11 and platelets were over 200 and his ANC was about 1500. We just had our last scheduled office visit at TCH with Dr. Russell. Our next 'local' office visit is scheduled for around June 14th at CHLA! That's a trip. We'll still be back up at TCH for a couple of Lab draws, and a Neulasta shot that we won't forget this time;)

As far as what we've been up to... a fun weekend with soccer (only one game left) a first Communion party for our little friend Ryan, and a girl scout shopping trip for a campout next week (Hans was Elle, Amber and Kelly's official assistant). Hans' horseback riding is back in session, but has been cancelled or we missed a few weeks, so we've only gotten to go twice this session...

I'm actually lounging around here a little bit - relaxing and putting my feet up now that we've got a contract on the house and just over a month before the move. Can't complain!!!! I just ordered a couple of home design books to get some ideas for the new place. And, I feel I have so much time on my hands after what we've just done with getting the house ready and then showing it, that I actually got started early on my summer reading and ordered War and Peace -I've not yet read it so I figure no time like the present.