Stable, if not slightly improved, scan

Hi,
I'm updating from here in Philly. We had the scan and got the news this morning - scan looks good. When I inquired just how good - stable or better - Dr. Maris explained that all the radiologists in Nuclear Medicine (the department that conducts all the MIBG scans) are at a conference, so there had been no official read. However, he explained that he has seen "a few" of these and that Hans' spot on the skull looked perhaps a little better/fainter. He did ask if Hans had been more active on the table than usual because it was not quite as clear as usual. The scan is a 35 - 40 minute ordeal where hans is literally taped down to a table. Usually he is quite a pro in these scans, but this morning he did doze off, so we reported to Dr. Maris that his head did fall to the side a bit at one point.

It's good news. I hadn't felt too uneasy prior to this scan, actually, none of us had. So, that's good, we can move forward and go ahead and map out the rest of our summer. Yay.

Dr. Maris. alluded to the fact that Hans is in a small group of kids that has made it through this many rounds of Millennium, and that we might soon get to the point where we consider 'spacing out the evaluations'. I'll be excited to hear more about that. Scanning in Philly every 3 or 4 rounds would be preferable, over every two! This hopping the whole family on a plane every six weeks is a little crazy. But, ya do what ya gotta do, right? And, we seem to get by... with a little help from our friends! (Thanks Alana for watching Honey) And, thanks again for those who helped us rack up miles! Three of these four tickets were from donated miles. We just had to buy Elle's and we are so happy to have her with us this time. She's fun, but the two kids are a little on the wild side. They chase each other and harass each other through the hospital. They fight over who gets to push elevator buttons, and I think they are very loud - they come screaming through the halls! Elle is constantly trying to push Hans in the stroller, then she starts to push him crazy and then, Hans demands Kevin or I take back over. It's a bit of a scene! Elle was actually getting Hans to do this insane yoga move yesterday, where he crosses his legs like a little yogi, and then proceeds to walk around the registration area on his hans and still-crossed knees. He is quite a little yogi. I guess they have their own kind of hospital-fun! And, actually, they are both getting older, and more independent, I find I'm getting more down time. I get to read my book while on the plane and here and there while they are in the pool. I actually had to make a stop at the bookshop for more reading material for the flight home. They are working on this cute flip in the water. Hans was bragging a bit about their flip to the team today - he told our NP that they were amazing.

Anyway, we are curious to see what they will say next time. We will do two more rounds as soon as Hans makes counts and then go from there. Scanning again at CHOP in mid august.

For now - this slightly longer than usual stay in Philly is becoming an urban vaca. Scancation? I don't really think it counts, but now that the pool is open at the Sheraton, and the weather is warm here, we are having a nice time. The pool is outdoor on the rooftop so we are actually very pleased to be here over the RMH for this summer visit. We hit Penn's Landing yesterday and plan to kick the soccer ball around at Fairmont Park later, and then back to TX soon!

Thanks for checking up on us. Thanks for your thoughts and prayers for these good scans.
Every day is an adventure. Every day is a gift!

Lara

Laying Low

Hi,
Wow - sorry - I never meant to be such a slacker. It has been a whole week since I posted... Well, Elle was off all week at Camp Casa Mare. She had a great time, but is enjoying the relative luxury of the A/C back at home, and, the remote, to watch a lotta World Cup. Sadly, we aren't looking forward to another USA game, since we just lost to Ghana. Shucks. I guess we'll be rooting for our neighbors to the south, go Mexico! Camp highlights for Elle included learning a dance, "The Jerk" from fellow campers. There were a couple family of deer with babies that the girls got to admire. Elle selected Yoga and Spa for her morning courses to round out her week of "Sports Fan". She said the food was incredible - with a vegetarian option every night. I thought that was great - (in TX! :)
Hans' labs have been predictably low this week. This right now is where he's at his low point of the cycle. What are we, Round 9 now? He's all done with it - and counts are bottoming out. No transfusions needed, but the HGB is hovering at about 8.8, ANC just dropped down to 230. We had another little wrinkle this week. I actually got a call from the Endocrinologist that his Plasma-Renin level was a bit low. This is a test they run along with his ACTH levels only a couple of times a year. These two tests check that we are actually replacing Hans' steroids to an appropriate degree. (We only have to run these tests because Hans lost both adrenal in resection surgeries - most NB kids don't have this additional burden.) The good news was the ACTH level was fine. That is great - because we really made some dramatic changes to Hans' Hydrocortisone dosing back in the Spring. He is now stress dosed on Hydrocortisone while he is peaking on chemo, over about a ten day period. He seems to be doing quite well with the adjustment, and I actually wonder if it is responsible for his growth spurt. It's just good to know we are not overdoing it. However - the plasma-renin showed that he is not quite getting enough of the other steroid, so we made a minor adjustment and will retest next week. Hans also had a slightly low Potassium, which I attributed to the steroid fluctuation, and we just started him back up with three supplements a day and he seems to be fine.
Anyway, Hans seemed to be pretty low energy this week. So, we really laid low, just had kids over a few times, and I didn't push him too much to get out and about. I have been working on getting donations and sponsors for the NB HOPE 5K Fun Run/Walk - all week! Wish me luck! Check out the sponsor tab at www.nbhopefunrun.com, if you think your company could help. I am also looking for donations for our Raffle. Let me know if you can help!!! Thanks:)

We leave for Philadelphia on Monday. Scan is Wednesday. Praying for a little bit of remarkable news!

Lara

Here are a few pics from swim lessons, and one with Hans' last day with the excellent Ms. Kathy.

Wow - we are on a roll! Hans and Elle have now each completed a program and received a certificate already this summer. Hans completed Level 2 Swim Lessons, and Elle completed the Safe Sitter training program through a local hospital.
I probably could have signed Hans up for Level 3, I had him tested and he was right on the border, but I didn't want him to feel over his head. So, we checked off Level 2 and we might be ready for Level 3 sometime after he turns 7! Wow - that's coming up, July 15!!!

Elle and her little pal Toni had a great time with their Babysitting Course. I was actually very impressed with how professional it was. It was a full two-day training course. They learned infant, child, and adult CPR, choking safety and first aid.
They are ready to go!

Today, Hans is cruising along - already on Day 5 of this round of Millenium. So Far, So good!!!
Hans had a little sleepover with longtime pals Michael and Ryan this past week. It was fun to be able to do that. He felt pretty big! He is doing really well with Ms. Lisa. The bonus is that Lisa brings her Ivory over, an incoming Kindergartener, so they get to work in a small group, and it's a two for one all around. And, I get to hang out with Macy while they work. It's one of those win-wins:)

Today we are all heading out for a long day of fun at the Amazing Grace Golf Tournament. We'll raise money for NB research while hanging out with friends. Kevin is golfing with a bunch of his buddies. I appreciate everyone's support! Fun, fun, fun!

More later. Thanks for checking up on us.

Lara

Made Counts:-)

The kids with Jack Josh and Jace on an ice cream run
Yeah! We made counts today. Thank goodness. We don't like being off meds for too long.
Well, obviously that's the goal - to be off meds, eventually. But, you know what I mean.

Hans has actually been pretty happy and busy right now, despite the little low counts and fever. We are loving summer. We spend lots o time at the pool. Sometimes we even go twice a day - crazy. I just like having kids over, being busy, running around... we all love it. Our friend and neighbor, Lisa, has agreed to tutor Hans to help make up a little ground on reading. We just had our first session yesterday and she's pretty good. Hans should be in good shape for first. I really think it was just that he didn't get A LOT of time in Kinder...

Art Needed

Hi There,
Wanted to throw it out there - my friend Charon (Carlie's mom) and I are on the T-shirt committee for the NB HOPE 5K Fun Run/Walk Aug 28 www.nbhopefunrun.com and we need some art. Our graphic designer (Carlie's uncle) suggested that art done by kids in a wide marker such as a sharpie or crayola marker would be best.

Seeking original art work submissions to use on our run
t-shirts. Please consider submitting images of: Adult/children running, Runner on a path, Sunshine, Running shoes, Jogging, Parent/child, Holding hands

Submissions needed by 6/30/2010

Please drop me an email if you'd like to make a submission, or you have any questions.
kevinandlara@hotmail.com

We had a pretty decent weekend. More World Cup, and a couple get togethers since Hans could get out and about with a slightly improved ANC. Hoping to make counts tomorrow!

Lara

Coming Back Up

Good news, we went to our local counts (wow - 40 mins, from home to back home, counts in hand), and Hans' ANC is on the rise. It's 800 now, so it's not too bad. BUT, not quite good enough to start the next round, so we'll recheck on Tuesday back down at TCH. His HGB is only 8.5, but hopefully that will come up soon.

It's pretty much all soccer around here. Elle has had soccer tryouts this past week and it all wrapped up with an end of the year pool party tonight. Elle will be coming back to play with her same group again. We will be happy to be with the same girls next year. They are really nice girls! I always tell Elle I"m glad that they get along so well. For as much time as they spend together, there is very little drama, which is nice!
World Cup fever around here. Kevin got to take today off to watch opening day here with all of us. Go USA! We'll see how they do against England tomorrow morning.

I got official word on my temp job with the Census. Our work is all complete as of tomorrow, though we may get another assignment in a few weeks.

That's all for now. Lara

Watchin' It!

Hi,
So, we had a surprise. We had a counts check yesterday. It was supposed to be routine, no biggie, go in/get out, get on with our lives and our big plans (sleepover) that night. Well, for the first time EVER in our almost FOUR YEAR history of treatment, Hans turned up at clinic with a fever! I had no clue until they took his vitals. Well, actually I had just commented that his hands felt HOT and I was watching the digital thermometer like a hawk. So - wow. Maybe that explains what we've been noticing. Maybe Hans didn't just take a harder hit from an upped dose of Millennium. He's been a little punky and sluggish, and a lower energy level than usual. Poor dude. But, the good news was, it wasn't that high at 100.2. Sooo, they took a blood culture, and gave us a dose of Rocephin (Antibiotic), some Tylenol, and sent us out the door with our fingers crossed. So far so good. Dr. R. called me to say that the blood culture was negative for a line infection. We are to get a CBC here in The Woodlands on Friday.

The BAD news was that Hans' ANC took a nosedive from last Thursday. It dropped all the way down to 320 from 1500! That's bad because we're not going to make counts to start the next round on Thursday:( His HGB is also not recovering yet...8.5. So, Dr. R suspects that a little virus is affecting his numbers, and I'm going to go with that theory!

So, in the meantime, we're making Hans lay low. He hasn't had a fever since that time in clinic. I am hoping he'll fell well enough to start back up with swimming lessons tomorrow morning. He started this week and it has been fun.

Thanks for thinking of him with any fever-free, counts-rebounding thoughts and prayers. We wanna get that next round of MLN8237 to do it's job ASAP.

Lara

ANC lookin good

ANC is looking good at 1500. We went into clinic and the HGB is stable at 8.9.
The Platelets are dropping a little to 89. We just have to cross our fingers and hope that the platelets bounce back up over 100 by Tuesday, when we go back to see if we 'make counts' for Round 9. Kevin also wants Hans weighed to see if he still needs the upped dose.

Hans finished school yesterday and was promoted to the first grade. Ms. Kathy was wonderful and I'll miss having her around. I'm going to play next school year by ear - but I'm thinking that if Hans' disease burden is good (or gone!) and the side effects from any meds are under control, we may as well send him to the classroom. We can always switch back to homebound if we need to. I think it'd be easier to switch from the classroom to the homebound than it would be to do the opposite. We'll see!

Elle finished 5th Grade! She was also promoted to the next grade;) We're proud of her achievements. Fifth has included - representing her class as both a student council member and an ambassador, making the cut as one of the WINN news anchors to read the daily announcements, participating in Science Club, the school talent show, and Destination Imagination. She brought home excellent grades in her all-"G/T" class schedule- completed ALL those many projects! She was nominated by her peers as an 'Unsung Hero', she met her commitments to both girl scouts and competitive soccer. I think she even squeezed one season of volleyball in there?? Whew. I'm ready for a break! I think she really blew me away with this band stuff! It's fun to see her taking to her clarinet so easily. She ended the year tied for first chair in her grade on her instrument. I probably sound a little braggy. Sorry. This blog also serves as a family journal - so I do want to be able to look back at the way Elle continued to excel, rather than skirt back into the shadows, as we all navigate pedi cancer. She is also building some nice friendships with her soccer girls, and girls who've been in her class all year. Three elementaries came together into this Intermediate and it's a nice mix of kids. But, she still holds her first BFF's Greta and Sierra, as well as Madi and Ashley close in her heart:)

Okay - that's all for now. Thanks for checking up on us!

Lara

Referral

Hey - this is totally off topic - but I wanted to share a referral with you!
We've just had our kitchen project completed by Schulte Reconstruction Services. Blaine was pretty awesome. If he was ever even 15 minutes late to the job, he'd call. We had some pretty bad plumbing problems, but he handled them all - cool as a cucumber.
So, if you're local (N. Houston area) and you have a project in mind, consider calling him! We've been 100% pleased. Blaine Schulte. 281 686 2967.

I always say with everything that's going on with Hans - we don't need another headache, and we don't need any 'negative energy' around the house.

Lara

Soccer Weekend

Hi
We just go back in from a weekend in San Antonio. It was all-soccer, so we didn't even manage to squeeze in a trip to the River Walk. The good news was that all 5 of us made it there and back in one piece. I say 5 b/c we got to host Elle's teammate Jules. Her family was out of the country, less one older brother playing in another soccer tournament in Dallas. We had a lot of fun team bonding. The girls' season had a happy end. Elle broke her streak with two goals this weekend. She and Jules each had tie-breaking/game-winning goals this weekend, so I guess we stayed in the lucky suite - 107!

Hans had some pretty low counts on Thursday. HB 9.5, Plts 135, and ANC of a mere
165. So, we were a little apprehensive about bringing him on the trip. But, in the end, he did just fine and we were all able to stay together. I had printed up directions from the hotel to the Chilren's Hospital in San Antonio - just in case we spiked a fever. Thank Goodness I didn't have to pull those out! We'll try to get him in for counts locally at our pediatrician's office Tuesday, then it's back to the clinic on Thursday. Thursday is also the last day of school here!

Soccer has just ended, but we do have try-outs for next year the week after school gets out!

Hans is starting to look a little better. You could just tell that that upped dose of Millennium was hitting him pretty hard this weekend. Just hope it's working on that little spot!!!


Thanks for checking up on us.

Lara

Wonderful

Hans getting sprayed by Seany with Ms. Katie's mister at the walk a thon. Madison in the background walked all night!

Hans spraying Seany.

Hans at TCBY today - his FAVE is rainbow cream. Kath - this is the pic we took when I told him u needed a pic. I actually told him it was so you could show Pepper.

Hans and Kev heading into the Atrium area at CHOP.
Hi,
Just got back from The Sparrow Clubs Walk-a-Thon for Hans on the 9th Grade Campus. How wonderful. It's such a surreal feeling to be walking laps at a High School and see students whom you've never met turning out to the fields to drop off envelopes full of pledges. It's that 'Its a Wonderful Life' feeling that there are no words for. Kevin has often said, I wish everyone could get a taste of such benevolence. We wish everyone could feel it, but we certainly wouldn't wish the NB on a soul. Thanks to all the great, cute, wonderful, sweet, kind, giving, optimistic, spirited, helpful, cheery TEENS who came out! Thanks to Dodie for setting it all up - and your awesome little family who was there the whole time. Thanks to the Sparrow Clubs Prez Travis for his ongoing support. Thanks to Shannon and fam for making it to the Walk-a-Thon. Thanks to all the sponsors. It was so nice:-) Thanks to our new babysitter Katie. We luv ya. Wish we would have found you three years ago! You are the best. Katie donated today's wages! She was able to get Elle to soccer, and then show up to have Hans walk an entire lap with the 4 other kids out there. That is actually a pretty big deal in this ridiculous heat. Thanks again everybody!


In Hans news, he is doing pretty well. He is happy it's pool season. The kids are in school through next Thursday and then it's swimming, playdates, a few camps. Fun.

Hans finished his 8th Round of Millennium. I don't think I mentioned that they had to up his dose because he grew a bit and gained some weight. It seems he is tolerating the higher dose just fine. Counts tomorrow. I am also trying to take him to get signed up for a summer reading program through the Houston Children's Museum tomorrow. He only has to comply with the assessment process to get in. Keeping my fingers crossed, compliance isn't his best strength! But, hey, he walked a lap today and I wouldn't have counted on that.

Thanks for checking up on us!

Lara

Walk-a-Thon for Hans!

Wow - I just got an email from our sparrow clubs rep, Dodie. She and the 9th Grade Campus at Branch Crossing are putting together a Walk-a-Thon for Hans. This walk is for Hans' Medical/Travel Fund through the Sparrow Clubs.

All I can say is WOW - I had no idea they had this up their sleeve. If you live here and you'd like a registration form, you can email Dodie Neimeyer:
dniemeyer@conroeisd.net. The Walk-a-Thon for Hans is open to anyone.

Here are the details:


When:
Wednesday, May 26th, 4-7 pm
Where:
TWHS 9th grade campus track
Why:
to help raise funds for 6-year-old
Hans’ cancer treatment

Dodie says anyone can participate. If you don't live locally and you want to participate, please contact dniemeyer@conroeisd.net.

We appreciate these fundraising efforts. It gets expensive to fly to Philly and keep pushing for the best treatments for Hans. We are humbled by people's ongoing contributions to both Hans' medical/travel expenses, as well as our continued efforts to raise funds for the Children's Neuroblastoma Cancer Foundation ! How do we thank you?

With our new news we now feel we have the freedom to 'plan' the next six weeks of our lives!

Lara