doing okay

Hans is doing well here in our early spring. I took him in locally here for labwork and was a little surprised at the results...HGB okay at 8.8, ANC robust at 4400 (thanks Neulasta), but Platelets quite low at 37:( Not low enough to quite transfuse, but the value did buy us a re-check and possible transfusion down at TCH on Friday. We shall see. We are here at Day 15 so they may well be at rock bottom about to rebound.

More fun, more helping, more horseback riding. We had a little relay 'race' at our ride last night. Hans was "accidentally" trotting a bit on DAK, a fine 31 y.o. YMCA horse. Hans was squealing with delight! My joy may have been tempered had I known the platelets were so low, but luckily I was quite clueless!

Here's a quick shot of Hans and Kev working on one of our backyard projects. It's just been too long since I've posted a pic, so here ya go.

Lara

Planting Day

Hi,
Things have been going pretty well since we got back home. Hans had his one and only day of school this week on Thursday - it was Math/Science day and it went well. We then had to jump into the car and go straight back down to TCH for labwork and another shot of Neulasta. Labs looked good! The shot stung, though.

On our way home, we stopped by the Houston Garden Center and stocked up on a bunch of flowers to replace some that we lost in our 'big freeze'. Spring comes early here! If you're up north, don't hate on us because Hans and I spent the morning planting almost all of our pots. Hans declared it Planting Day! Soo cute. He is a very good helper. He's also helping me restain the kitchen cabinets. We are going for a darker red cherry - moving away from a sort of 80's orange tone. He's also been helping his dad and his sister stain the decks!

We are just feeling a little rumpled from our crazy week! But ready to tackle many spring projects - we are also spring cleaning and getting ready for a big old (CNCF Fundraiser) bead-a-thon this weekend.
Lara

HOME

That's just about all you need to say right? Elle is about to hop off the bus and we're ready to see our girl!!

ps... I didn't mean to leave Kev out! He's been bringing us food every day at the hospital, so we've gotten to see him a bunch, but no Elle, since the hospital is a 2-hr round-trip drive....

Detained

It's a pretty uneventful stay here. Hans had been fever free all night, but then he peaked a little this morning which just bought us another night here. I guess we'll continue with the IV fluids and the thrice daily anti b's. I think 10 am was the last known fever. At this point we are going for 24-36 hours fever free before break out.

That's all for now!

PM update

We DID get admitted. Hans is awake and alert and doing just fine. I guess we always figure better to be admitted just in case a line infection may possibly be brewing/causing fever, than to be admitted for a raging line infection! Hans is getting IV antibotics 3 times daily and fluids around the clock. We don't know when we'll get "sprung" but we are doing just fine.
Thanks for checking up on us!
Lara

Fever Fever!

Well, here we sit. I was a little too wiped out to update last night. We were cruising along happily all weekend, or rather frantically, with an 'away' soccer tournament and Kevin and I each being in the middle of house projects, and me getting ready for a big Bead a Thon coming up next weekend.... AND THEN... Kevin noticed Hans was HOT at 4:30 am on Sunday. So - long story short...ER run #1...labwork (fine), IV antibiotics, chest xray(normal), flu test (negative), urine test (negative) blood culture (neg so far), IV Hydrocortizone for the Adrenal insufficiency,and Fluids (fluids always seem to help this kid!) sent home, a little more fever, took a little tyelnol...AND THEN... wake up, get another fever! So, here we are ... ER run # 2. More labs, more antibiotics. We'll see what they do with us this time. It's probably just a virus, but when you have a Port or a Central Line, you have to get to the hospital fast in the event that you have a line infection. We've been down that road twice... don't want to replay that scene. So, we are extremely compliant and by-the-book with fever. There are sure a lot of other things we'd rather be doing... but I'm trying to have the right attitude. I'm trying to just be grateful to these nurses and docs and to this facility for always being right here when our special little guy needs them. It may not be the coziest place to spend two 8 - 10 hour days, but thank God we can come here and get all patched up when we need to!

More Good News

Hi there, we got more good news! Scans look good -- stable or slightly improved. It's great and fabulous and wonderful and we will gratefully take it!!! Dr. Mosse compared our first positive scan from 12/09 to this scan. I guess there is a big, good difference b/w the first and the current scan. But, the differences are hard to quantify at these frequent 6 week intervals, so that's why our reports are seemingly ambiguous each time. The good news is: there is still just one small spot on Hans' skull bones (not in the brain). It's just one spot and it has gotten smaller and has lessened in intensity on the MIBG from a year ago. I am always hoping we'll hear it's gone. But, we can be patient!

Hans and Kevin went this trip alone, at the last minute I decided to stay at home with Elle and her hurt neck! (She's starting to feel a little better.) The guys are on their way home and Hans starts Round, what... 20 tonight. They got to have some fun with our friends out there - the Tennesons, and hit their favorite restaurants....

Thanks for your thoughts and prayers for Hans and all of the children in the fight.

Lara

New Total

We actually have a new total, a couple of donations of baked goods and checks came in on Saturday...thanks to Elle's whole team for pitching in and shopping when I showed up with extra baked goods to the tournament on Saturday! We brought our total up to $2215, with a grand total of $21, 515 . Thank you Michelle, Sarah, Shannon and Jennifer for working the sale with me! Thanks to Comfort Cookies in VT for a special shipment for our sale!!!

Elle had a pretty great weekend on the fields. The girls actually lost each game, but she played like a champ in a brand new position - center D! It was exciting and she was a "beast" as her coach Phil pointed out. She got fouled a couple times, got into a few scrapes. That's my girl!?!?!

Hans has scans tomorrow! He has a great attitude about it and has the whole trip planned out - he's simply squeezing scans and office visit and injections in around eating at Mad Mex, Chili's and hanging out with the Kieran.

Elle got a "muscle spasm' following the big tournament and has a sore neck and she's on the DL from playing until she gets better. I was a little sore from carrying stuff for the bake sale (am I getting old???) so we had asked Hans for back rubs. He gave us great massages on Sunday and he told us - "I know what the problem is... you never go for a 'Spa Day'!" We better get on that.

$21,300 in cupcakes, brownie cookies and treats

End of sale, only 4 items left to donate to PICU.




Hans and Kevin with all the cookies and brownies and cupcakes we did for the sale. Cutest tip ever - put cupcakes into a clear plastic cup for easy storage. Thanks Mrs. Nusbaum - your idea went viral at this sale!






Thanks Mrs. Parker and class for the best bake sale sign ever!!!

Full Swing - we had seven tables full of baked goods,

and had to restock til we ran out of product.

Hi!
Quickie post here - we did $2,000 in sales at our TCH bake sale yesterday. That brings our grand total to $21,300 from our TCH bake sales over the past three years. All our proceeds go to the CNCF. I'd like to thank all of our friends, neighbors, and the other NB mamas for keeping these sales going! Fabulous!

Hans and Kevin visited the sale while Hans got pre-flight labs at TCH yesterday. His HGB and platelets came up just a bit, and his ANC is still outta this world. It's all good for a pretty, chilly weekend of soccer, soccer, and more soccer. Elle has her first spring season tournament this weekend.

Lara

39 Nights 'til Spring

Hans loves a good countdown and the countdown is on 'til Spring. 39 nights to go, as of today. It's been colder than normal here, so we've been spending more time than usual inside. He's ready to go for more bike rides, get back into the pools and plant a lot of flowers.

Hans had OKAY labs yesterday. HGB 8.7, plts dropped to 73 and ANC is still crazy high at about 12,000! I'm awaiting word to see if he will need to go back in for another lab draw before we go to Philly NEXT WEEK! These trips sure come up quickly...

Hans and Kevin went out for chilly horseback riding last night. It's cool that Kevin got to see it. I guess they played Simon Says on horseback.

I am about to go make some insurance calls. For some reason (just a paperwork mishap, I'm sure), Hans' last Neulasta injection was denied by our new Insurance Carrier. Even though this is actually our 6th 'benefit year' since diagnosis and I've seen A LOT of bills and benefits statements, my eyes still bulge when I see some charges. Would you believe that one shot of Neulasta is billed at $18,000? I'm pretty confident I'll make sure Insurance picks up the tab on that one!

BAKE SALE UPDATE!!! Our 4th Annual Valentines Day Bake Sale for the Children's Neuroblastoma Cancer Foundation will be held at TCH this Friday, Feb 11th! I'd like to thank the other NB families and our network of friends, neighbors, and CLASSMATES that have helped make each sale special. This year, Mrs. Parker and Hans' class are helping out! They are making us a gorgeous new "Bake Sale" banner! I can't wait to see it and use it! I love the bake sale fundraiser, since our bakers donate their goods, there is zero overhead and 100% of proceeds go to the CNCF. At this sale we'll surpass the $20,0o0 mark. That's a lotta LOVE!

Thanks,
Lara

no tears!

We went up to clinic and got labs and a shot of Neulasta today. This was Hans' third shot and for the first time he had no tears! He is usually such a toughie, it was surprising to see him crying to get his first two shots. Not this time! I guess he has absorbed it as his new routine and can now handle it. Hans' ANC was already 1800, but he gets Neulasta each round anyway, now. HGB was only 9.0 so hopefully all will be well when we go back and check next week!

We are having a "hard freeze" here getting into the 20's with chances of snow. That's a Big Deal here! We actually all have 3 and 4 day weekends because of it:) Kevin was sent home today and school's out tomorrow! Isn't that amazing at just the chance of snow? We are all thrilled about it though.

I think Hans is already having a case of spring break-itis. He's been slow to transition into getting to work for his teachers this week. One of his teachers coined a new term - "He's a Hansful!" I love it. When you're right you're right...

Kevin had Strep Throat last week and Elle is trying to get it this week. We took her to the pediatrician yesterday and her test was negative but she has missed a half day yesterday and today because of a sore throat. Hans and I are dodging it, knock wood/fingers crossed!

Please say some prayers for our dear friend Patrick! I got to see him up at TCH today. I am always glad to see him and his mom. He's just been in a rough spot in his treatment for a couple of weeks and could use some prayers.
Love, Lara

Mid Cycle

Things are going really well for us here, mid cycle. Hans is actually usually doing fine when he is actually taking his med, it's the week that follows (Days 8 - 15) where he can have a hard time. I'm thrilled with how he is doing and my fingers are crossed that we'll sail through next week. Scans happen just after Valentines Day back in Philly.

These two pics from Saturday morning - grooming Ginger before Hans and I got to do a trail ride. It was awesome - the only thing that I was nervous about was that I was the one holding the lead. Hans took the reins, but moms or dads hold the lead! Yikes - but it went well. We are at the Conroe YMCA Equestrian Program...it's great! He seems to have had more energy lately. We spent all afternoon doing yard work and then went out to our friend Dana's 40th b'day celebration, and he was up and 'partying' until 11 ;) Pretty good!!!

Aunt Susy asked about Elle - let's see - the big news is she won her student council bid last week! She's also on one of two teams of kids that reads the announcements on the Wilkerson News Network, she just had her last volleyball game of the season thru the YMCA, and soccer is gearing back up. They played their first 11 v 11 scrimmage yesterday...the kids play 8 a side til the age of 13, then they go to a bigger field, more players, etc. We are all excited about that change next year. AND... we had parent info nite for the incoming 7th grade class at her Junoir High. I understand our choices a lot better. We figured out how many Pre AP courses she'll take (3 out of 4- we decided not to do Pre AP Texas State History) and she has decided to go out for Cross Country since there is no "real' soccer at the Jr. High level. She just joined Running Club at her school she's loving it. She is also selling girl scout cookies, well, sort of! We're kind of slacking at that this year.

Kevin and I keep trying to squeeze rides in, but the hardest part is keeping huge chunks of our schedule open for the long rides!!!