New Bike

I figure it's about time I posted a pic or some fun news, so here ya go.

Santa brought Hans this cool bike - Transformers Motif and all.

Our weather was perfect on Monday and Hans had perked up some, so we went on a ride, quite a bit further than we'd usually take him on his old, much smaller bike!

New bike = new freedoms!

I took the girls (Elle and her friend Kelly) to our local winter skating rink last night and Hans and Kevin went out and invested Hans' Christmas money in a new Nintendo DSI (hand held video game), his systems see a lot of wear and tear with all our travel. It's good to have one working well with our next trip coming up next week:)

I would like to extend a thank you to the National Childrens Cancer Society! We just learned that they will help underwrite many of our travel expenses for our trips back to CHOP. This is certainly a blessing, so I wanted to share the resource with any other families who might find themselves in a similar situation. It is wonderful that there are such resources available.

On the not-so-fun side, Hans was up in the middle of the night complaining of back pain!!!??? He shed a few tears, needed a pain med and a hot bath at 1 am. So - I don't know what is happening here, but these mystery pains do often pop up in the days before scans.

Lara

Blood/Night at TCH

Yesterday we went in for labs up here locally. Info was exchanged rather slowly...we wound up getting word at about 3pm that Hans was to come in for blood! We actually wound up getting admitted to the 9th floor, starting blood at 10pm, finishing up at 2am and staying the night rather than drive home on little sleep. Crazy! I guess I did jinx myself in my last post.

The good news: Hans didn't have a reaction to the blood this time, and his ANC is through the roof at 2800! ! Bad news Platelets were low at 37, so it's back down to TCH tomorrow for more labs and possibly platelets! Gosh. I was a bit bummed to see these numbers. I had hoped to make some fun, regular Christmas break plans, like taking the kids to Pump it Up, Jumpin Jaks... but with these counts, maybe Chuck E Cheese is more in order??? Who knows!

I forgot to mention that my mom left the day after Christmas. She had to get up to Seattle to help with Papa, and to be there for my Aunt Pati as she underwent a delicate eye surgery!!!

Kevin's back at work this week. That's the scoop for now.
Thanks for checking up on us here on Day 15 of Round 17....

Lara

Home this Week!

I am sitting here watching the news... with the insane blizzard hitting the East Coast today, I think it's really great that we are going to Philly next week, and not this week. Originally, before Hans was delayed a week to start Round 17, we would be in the air tonight. I think it's very good that we aren't in the mix of travelers waiting for a flight. UGH. We leave in a week, and we are even pulling Elle out of school to join us this trip and extend all of our winter breaks by a couple of days:)

Hans is okay. Round 17 seems to be wiping him out a little bit. He had some mouth sores on Christmas Day, and he's very low energy! Poor little guy. It just breaks your heart to see him wiped out on the couch. Luckily Santa (and cousin Erin) sent him many of his Bionicles from his Christmas list. These are little action figures that you build piece by piece. Hans powered through six of them over ten hours or so Christmas Day. He said he was very happy. I am just blown away that in all of our 4 plus years of treatment we've only spent one Halloween, one Thanksgiving, and one Memorial Day Weekend in the hospital!!! Somehow we've spent each Christmas right at home. Am I jinxing us now????

Better go wake Hans up and get him fed. We don't have a plan yet for this week, I think local labs tomorrow, and maybe go into clinic later in the week.

Neulasta on Board

Merry Christmas!

Love, Kevin, Lara, Elle and Hans

Hans received his dose of Neulasta today in clinic. Counts were okay today... HGB 10.1, Plts, 240 something, and ANC 900... Hans didn't like getting the shot, not at all. I think next time we'll just have to make it all go down a lot faster.

Other than that we're just getting ready for Christmas. Fun and joy!

Lara

TIme Flies

It seems like time flies when things are going well. Sorry it's been several days since I posted. We've just been good-busy. It's been going pretty well on Round 17 so far. Hans still experiences the primary symptom of a 'mild euphoria' after he takes the med, so he is a little bit buzzed for a little while.

We managed to wrap up another project around here - painted the study - we went from pink to green. Painting and doing DIY projects has been my strategy for managing these stretches where Hans can't get out much with his low ANC. It feels good to get another project done, and it feels even better to put the painting stuff away in the garage for a little while. I think we'll do Hans' room next, and then I'm going to have to tackle the kitchen - cabinets and everything. That is going to be a BIG job.

My mom arrived last night:) Yay. We are all happy to have her, and happy that Papa is doing well enough to send her down to us for a week.

Our sweet girl scout troop had a fun night. We did a Christmas caroling progressive dinner. I used to do these growing up so it was very sweet to pass on the tradition. I loved that the girls were into it and aren't at that "too cool to carol" stage yet:)

That's about it- Hans is just as happy as a clam counting down to Christmas.

Lara

Round 17 Underway...

Hans mixing cocoa in class this morning.

Elle and Hans with Santa's helpers Debbie and Phil.

We got some news. I guess it just took a day or so to get all the right info exchanged.

Hans started Round 17 of MLN8237 last night. He is at the same full dose, 60 mg per day, 7 days on, 14 days off. Hans will now get one shot of Neulasta in the clinic on Day 8 or Day 9 of each cycle. The Neulasta will help boost his white count so that the ANC isn't sooo low for so long. I think this is a good thing and I'm very pleased about it!

We have been keeping busy as usual! Elle had a band concert last night, and then we got a surprise phone call. I guess Hans was 'adopted' by some of Santa's helpers at HP (thru Candlelighters, Houston)! We got a visit from a really nice couple - Phil and Debbie. They dropped off an embarrassment of riches. Hans was outfitted with a totally new bedroom set - Transformers. Supercool.

And then, as Mrs. Parker and I have been plotting (well, I was actually doubtful his counts would rebound), Hans made his first visit to the classroom this morning. We were able to join the class this morning for hot cocoa making and watching Polar Express. Sweet. Hans' classmates won me over by their care and concern. They were genuinely sweet and pleased and excited to meet this Hans they had heard so much about. It was darling to me that the other students, boys and girls both, wanted to come and just say hi and pat him or give him a hug. They got to choose where they wanted to sit and Hans was quite surrounded by a sea of pretty little girls during the movie. He stayed through the whole thing. Sooo cute!

Hans is working with his teacher Ms. Yoakum right now. My mom will be coming for Christmas. All is good. Those few sorta rough times of Round 16 are happily behind us and it's beginning to look a lot like Christmas.

Peace, Love and Cure,
Lara

Made Counts

We had an early office visit this morning. I was completely surprised to learn we 'made counts'. Hans' ANC has climbed to 1050! Yay. But, we are holding off starting Round 17 until we get a new plan from CHOP. I just got a brief email that said we should hold off until they review current height/weight info, and review the requirements for Hans getting Neulasta (daily at-home shots to boost white count) on this next round! Wow - I didn't expect to hear that. I am going to try to sit tight and see what that means. I think we might have to open our case back up with Home Health b/c they provide us with all of our syringes and everything necessary to give shots at home. I'm happy to be off the hook, since Kev is 'down with' being the shots guy!

If they've been measuring him right, Hans has grown 2 cm in the last couple of visits! That's quite a growth spurt for our little dude. He's really looking forward to hitting the 48" benchmark as there are many rides and slides with that height requirement. Looks like we're about 5" away now. If only he had some of those big loopy curls back and a pair of cowboy boots, we'd be right there:)

I'll keep you posted as I learn more. And I will happily take Hans back out into the world with this almost normal ANC!!!

weekend

Kevin and the girls had a good day yesterday at the 3 v 3. Although it doesn't sound too too impressive, their 1 win, 1 loss, 2 ties got them 3rd place! (Of 8, rec division) Most importantly they had some fun. And, we were all able to make appearances at our block party.

Hans copes really well with missing out on activities, he's very good at making his own fun.

And, he's been a little low energy anyway, so he really needs to stay right here at home.

We did make MORE cookies yesterday, thanks in large part to a very special visit from Mrs. Nusbaum, Hans' teacher at Glen Loch for a few days back in 2008. She and Mia brought lots of cookie cutters and frosting kits and a baking mix. What a special early Christmas surprise. Hans was really thrilled to round out our cookie cutter collection with a few we didn't have - ornament, snowflake and santa's cap. I keep finding things to paint and rake while we're here at home.

Okay - guess that's about it for now. Wanted to share some pics. Elle is out paintballing as we speak. But I don't think I'll get a picture of that.

Lara

ANC back

We got it back, but it's still quite low at 96. I'm not getting too far ahead of myself worrying about what this means, I do think it's a good sign that the platelets are rebounding nicely!
All I know for now is that it means more 'home' fun. I'm bummed that Hans and I won't make it to one of the cancer kids foundation parties on Saturday while Kevin and Elle have a full day of soccer. And, he won't be able to go to our block party tonight, but he'll hang out at home and the rest of us will be able to switch out. He is helping me with the baking and cooking for the party though. I shall try to focus on what is going on, rather than what is not happening for us!

Okay - that's our update. We don't recheck until we go back for a TCH office visit with Dr. Russell.

Lara

ANC Pending...

We had another surprise today. Our teams decided it would be okay to get our labs drawn locally at our pediatrician's office today. Well, their machines are not quite as high tech as the hemonc machines. I guess Hans's ANC was too low for their machine to read! We are having it sent out to an outside lab and should have a value tomorrow. We did get the overall white count back, and that had come up a bit since Monday, it was 1.4, and now 2.0, but it's still pretty low, indicating that we'll get a low ANC back. HGB levelled off a little to 10.4, and Platelets came up to 117. I guess it's just a wait and see kind of Round!

So, we stayed home again...more home school, even home PE - Hans joins me to do little parts of work out videos, it's pretty cute! And, we just mixed up a batch of chocolate chip plus cranberry (craisin) cookies. I am doing more online Christmas shopping than usual this year, so that works. I'll keep you posted as we get that wacky ANC back tomorrow.

Lara

Holiday Low Counts Fun

Hans is not letting his lack of ANC beat his Holiday spirit down.

We've been pretty cheerful around here. Hans is looking a little low energy, but he has enjoyed decorating the tree, making a gingerbread house, and baking our first batch of sugar cookies! Hans says "I know everything about baking." He is getting really good at placing the cookie cutters right next to each other to maximize the number of cookies we can get. He doesn't use sprinkles sparingly, so it's good we have a lot. We hope to bake many more batches of cookies around here in the next couple of weeks. I have a 'beat the fever' attitude right now. If we can do it - let's do it today! Let's get it done (while we can! right now!) It's fun. Of course, since I can't take Hans into any stores with me, things get a little tricky... But I keep flashing back to 2009 and 2008. In early Dec '09 we were just relapsing for the second time, living in the RMH for a couple weeks, trying to find a new trial... and back in early Dec '08 we were recovering from MIBG plus Irinotecan and Vincristine. That keeps it all in perspective. Life is Good.

Hans should go in for a counts recheck tomorrow morning. Today is Day One of not making counts to start Round 17. We'll just see how long it takes. We hope not too long. We hate to leave the NB untreated.

We stay pretty busy around here. Kevin is coaching Elle and three other girls, "Goalbusters" on an all day 3 v 3 soccer tournament Saturday. Should be fun. Elle has also started Volleyball again , we've got a couple of Holiday parties, (none of which Hans will probably be able to make) and a band concert coming up. Elle did make first alternate in the district's honor band, but I'm not really sure what that means yet!

I'll keep you informed on tomorrow's counts, and I'll try to keep taking pictures, mom!

Lara

0.00

All I can say is shucks! I don't know why - but Hans' ANC is heading in the wrong direction!!! While the HGB and Platelets looked fine at 11.1 and 73 today, Hans' ANC tanked even further from 60 to "0.00"! Yikes, I don't think we've seen an ANC like that since Bone Marrow Transplant??? Who knows! I guess if you have a little virus, like this cold Hans keeps getting, your counts can struggle. I think I remember the team explaining that on this Trial, they START GCSF shots (to boost white counts) only if Hans' ANC is lower than 1000 for 14 consecutive days after the date he was to start the next round! That actually seems like quite a little while before using an intervention, huh? But then, I understand he'd automatically get GCSF each Round??? We'll just have to see what happens. He is supposed to Round 17 on Wednesday. It's pretty clear that he's not going to make counts.

He is doing fine! He has missed a lot of school though for these appointments and treatments days. We are about to go for a bike ride. We will just have to avoid crowds and sick people for a little while. If he spiked a fever, I have a feeling they'd keep him for quite a few days until that ANC popped back up! UGH.

Lara

Hans doing fine again

Hi, sorry to keep you all hanging without a post! Hans has had a very 'normal' time ever since Friday morning. Go figure, huh? As soon as I decide not to make the trip to Seattle! Hey - we'll take 'normal' any way we can get it, right?

I just haven't posted because we've been pretty busy over here between sleepovers, birthday parties, Volleyball, soccer tourney team t-shirt designing, getting pics with Santa, replacing the old TV that finally bit the dust (much to Kevin's delight;), girl scout meeting and 3 bike rides and completing a handful of lanyard orders, I just honestly haven't had much computer time. Whew. I don't know how I thought I could get out of this weekend???

Hans is back to a more normal energy level for Hans on this med. He hasn't had any further complications from his transfusion. He is just super thrilled with the Holidays. He and Kevin have hung up more Christmas lights now - I think they are almost done.

Thanks for checking up on us. Hans goes back in for a counts recheck tomorrow/Monday. He is supposed to start Round 17 on Wednesday. We have a pretty good idea that his counts won't be back in shape for a little while after that - just anybody's guess as to how long!

Lara

Long Day in a Nutshell

So, Round 16 hasn't been very good to us! This morning when I asked Hans how he felt, he said "all better!" I took him into clinic with the hopes of hearing "looks great!" But, come to find out - ALL Hans' counts tanked. His HGB was 8.0, his platelets had dropped down to 59, and his ANC is stuck at 60:( Shoot. We got a slot for a blood transfusion in the clinic.
I always have a very grateful feeling as the mother when I see the bag of blood coming. Some stranger gave up a couple hours of their time, their life, their blood to save my boy! They don't even get a high five, a pat on the back, or a toothless 7-year-old smile. Thanks to all the donors out there who keep Hans and so many others tickin'.
We had a hiccup of a few hives towards the end of the transfusion. We pulled the plug 3/4 way through the bag. It was enough to give his HGB a good little boost. He got more Benadryl and some fluids. The hives started to melt away. Wow - we haven't had a transfusion since July (???), and we haven't had a reaction to a transfusion since 2006!!!
It has been a rough couple of weeks for Hans. We are reaquaniting ourselves with this emergency managment lifestyle. It has been pretty boring and pleasant for most of the Fall!

I was going to catch a flight to Seattle tonight to see my grandpa for the weekend. I'm postponing that trip to keep an eye on my little dude.

The good news: Dr. Russell says Hans' mouth sores are all better. AND, my pal Claire, Patrick's mom, was able to drop in and say hi. It's always good to see her.

Peace, Love and Cure,
Lara

ps - Check out Angel Max's site. Max's dad Andy has created an awesome cheatsheet Christmas Shopping shopping in support of pedi cancer.

Just for fun!

Just because he's sooo cute - here's another pic of my grandpa.

I think this must have been last christmas, I just raided this pic

from my cousin Brandi's Facebook page. My grandpa is sort of surprising people by holding his own if not getting better!

Hans has made a pretty great recovery. He is eating and drinking all day! We are very pleased.

We'll still go in on Thursday for an office visit and labwork.

Peace, Love and Cure,
Lara

Triage Cancelled:)

Hans looked good enough this morning for us to cancel out our second day of fluids and labs at triage. Hans is already on his second bowl of chicken noodle soup this morning, and he's got a plate of chicken, a gogurt, some fresh raspberries, a soda and an ice water. He's taking his pain meds, and he has negotiated with his nurses that he can just swish around diluted kids' listerine, instead of that numbing pink mouthwash. We're keeping an eye on him. He'll go back in for a recheck on Thursday with Dr. Russell, unless he needs to be seen sooner.

Thanks for checking up on us!

Lara

Long Day!

Form long weekend to Long Day. I was doing my thing around the house this morning, after getting Elle onto the bus, and I thought - I better get up there and wake up Hans! I just didn't have a 'good' feeling. Well, he woke up for me, but instantly said 'I don't feel that good, I better go to the ER.' Oh, my baby! Kevin and I had been watching him - he has been struggling to eat and swallow with those new mouth sores. Ouchie! We start to worry about electrolytes.... and hypoglycemia...when Hans doesn't eat well.

Soooo.... we really lucked out by getting a bed in 'triage' at the clinic. This is really an ideal health care setting. It's one bay of about 8 private rooms. The Onc and nurse to patient ratio are great, everyone knows you, and everyone is dedicated to taking care of you carefully and quickly! So at least we had a good customer-service day. They peeked in his little mouth, and shook their heads. Yiikes. Mouth sores, bad, outta nowhere! I don't understand how Hans can be on this med for an entire year, and suddenly acquire mouthsores???? Anyway, his sodium was a little low, so he got fluids all day, and some special mouthwash with lydocaine. He is to take Tylenol with Coedine around the clock for now. They said it should take just a couple of days to heal. They also said our biggest concern is avoiding dehydration...so he has to chug drinks. Hans has lost a whole kilo (2.2 lbs) since he last got weighed! And... his ANC is at rock bottom, 60.

We got sent home this evening to drink lots of fluids, but we actually have a 'reservation' to come back and do the same thing all over again tomorrow. We can cancel it if Hans looks great in the AM, but it's nice to have that cozy spot booked just for us if we need it! I'm exhausted! Poor Hans is somehow managing to eat chicken tenders from his new favorite place...Popeye's. That's the scoop. In the here and now we just need to get his mouth healed, keep dosing him with mouthwash, tylenol and all his other meds. In the big picture... I start to get a little freaked...what does this mean? Will Hans get mouthsores on this med each round? Will his mouth recover quickly on its own? Will his ANC recover? Will we be able to stay on this med at full dose? Will we have to start dosing him with GSCF shots to boost his white blood count?

Long Weekend

We've sure enjoyed our long weekend/week off school! Yesterday we went and cut down our Christmas tree at the Red Caboose Tree Farm. It's a neat place that actually has all kinds of live farm animals and exotic birds you can check out when you are done cutting down your tree! We went there last year and loved it so we went back.

Hans' ANC was low going in to this weekend. I forgot to mention that it was at 400 when we went and got it checked here at our locals ped's office on Tuesday. He's starting to get a not-fun pattern of getting a cold with every single dip in his ANC. And, for some reason, I'm starting to follow suit! You always forget about how not fun a cold is until you get one. We had to miss a little play date with our old pals today because of our colds:( Ah well, maybe next time! Oh, and Hans is also having more mouth sores than usual on this round. Poor guy! It's like he's really doing relatively well on this med. But, dang, he is still on chemotherapy!

Elle got to go the Texans football game with her pal Kelly and her family today. She was really excited!

Starting tomorrow, I guess we have three more weeks of school and then Christmas break, yay! We'll go in for counts (somewhere) once or twice this coming week, and then we'll have an office visit next week to start Round 17 of this med next Wednesday. That will bring us to a full year on MLN8237!

Extra thoughts, prayers, and love are being sent to our little pal Patrick at this time.

Peace, Love and Cure,

Lara

Happy Thanksgiving, part deux

These pics are especially for our family! We love everyone and still sure miss you all, especially during the holidays. Happy Thanksgiving.

Happy Thanksgiving

Happy Thanksgiving to everyone.

Of course, we are thankful that Hans is holding his own and doing so well on this MLN8237.

I am also thankful for thoughtful kids like Kayce. Kayce took a sewing class over the summer. She got really into and started getting good at making numerous pillow cases. Her sweet mama, Laura, who has been baking for us for a while now, wanted to find some special homes for her project. So, Kayce set out to make 36 adorable pillowcases for each child on the 9th floor! Anyway, Laura got them to us, and since we don't have to go down to TCH for a little while, we sent them down with our buddy, Mickey, who is bringing a turkey day dinner. They will find new homes tomorrow. I love little stories like that. Hans got his own designer pillow case - Transformers in red and blue. He jumped up and down when he got it, saying "it's awesome!" Thanks, Kayce and Laura:)

Just a little pic or two to say Happy Thanksgiving.

Peace, Love and Cure,

Lara

Treehouses

Elle and I are back from camping. We had a fun girls weekend sleeping in these way-cool treehouse cabins, hiking, horseback riding and doing archery. The girls also worked in a lot of cooking and cleaning, eating, playing, a service project, and one craft. Wow. It was a whirlwind for us getting ready for that trip. Mon - Weds we were en route to and from Philly, Thurs a surprise ER trip, and Fri - Sun a girl scout campout. I can't say that I was mentally prepared for it on Friday - if I had had on "out" I may just have taken it! But once you're all packed and in the car to go, it's all good. I always feel better once I've got all the laundry sorted and started, and the fridge cleared out and restocked back home. Check. Yay.

After Thursday's incident, Kevin and Hans took it pretty easy around here. Video gaming and home decorating! With Christmas lights, that is. We are the first on our block this year to deck the halls, with rainbow icicle lights, no less. Hans and Kevin are the Christmas light designers. I always think their design flair is a little honky-tonk/cantina. Elle and I think it's festive, so we'd never object.

Hans is great on Day Five of Round 16. We are just very much focused on getting him to eat and eat and eat. Our Endocrinologist suggested last year that Hans may have a problem absorbing all the food he takes in. So the treatment for that has always been to feed him more. That's our job.

We had a very special visit on Friday from our pal MICKEY! Thanks for coming by, Mickey. We met Mickey in the Fall of 2006 as Mickey was beginning his treatment for ALL. Mickey is now done with treatment, NED, and doing well as a college student on the road to becoming a Pharmacist. He dropped by, bearing the most perfect gifts for Hans it was unbelievable! He brought Hans a Pillow Pet and the one Mario Galaxy video game he didn't have. He could almost drop the Pharmacy career for a job as a mind reader:) Thanks for dropping by, Mickey! Your friendship is very special to us.

Peace, Love and Cure, Lara

Santa Letter Mailed

While we were in Philly we rode the Subway into Center City to catch a bit of the Holiday Lights and find the Magic Mailbox at Macy's that goes 'straight to Santa'. Hans was all over it. We also hit the Gallery Mall to pick up another Kung Zhu Hampster for Hans...

Hans seems to have recovered quite well from yesterday's incident. It sure shakes the rest of us up for a day or two. Check out Will's Site for a little write up on Hans' hero sis as the 'artist of the week'.

I'll check back in with you on Monday, after our campout.

Peace, Love and Cure,

Lara

Hypoglycemia No.5???

Gosh, there we went again. We are just fine and dandy right now, but we are recovering from Hans' fifth (I think) low blood sugar episode. I guess Hans was soo busy playing games on the plane that he didn't eat as much as he should have. Hans actually ratted me out to the ER doc this morning. The doc asked "Why do you suppose this happened?" I started to go into the entire history of recurrent NB, adrenalectomy, stress dose steroids while sick, etc, And Hans interrupted us, "Tell him the truth! You guys didn't feed me enough on the plane!" I think the biggest deal was that he went for the big water instead of the big soda...so, no sugars in water???

He didn't wake up for poor Elle this AM. Kevin had to pick his car up at the dealer (a whole other story!!! We think it's a pre-recall problem on the new 2011 VW TDIs) and I had dropped him off at the dealer, I walked in to hear Elle on the phone to 911. I found a non-responsive Hansie on the couch. I was able to get him injected with his solu cortef and Glucagon while Elle wrapped up the phone call to 911. What a gal! That's at least the third time she's saved her bro.
How's that for a babysitting credential??? When the EMT's got to our place his blood glucose was 33.

OMG. Our poor guy! Kevin didn't even make it all the way to work, he rerouted and followed us in the Ambulance to St. Lukes in the Woodlands. But now Hans is fully recovered. He's planning out his guys' weekend with Kevin while Elle and I are on our Girl Scout Campout.

Thanks to Michelle and Alana, who came running over to check on us when hearing the sirens. I haven't even had a chance to tell them thanks for caring for Elle and Honey while we were on our trip.

We are on Round 16 of Millennium...started yesterday. 6 days to go. I had promised Mrs. Parker I was going to bring Hans into class for the Thanksgiving Day feast today. But, alas, it is not to be. Hans now gets to start his Thanksgiving Day break 1 day early...school's out for 11 days.

Peace, Love and Cure,
Lara

Stable Scans

Hi,
I'm just updating super quick from clinic. We got the news that Hans' scans look great, as in there is just that one little spot. Nothing new. So - it was all that dancing causing his back and shoulders to be sore. Thank goodness! It is always sweet relief to get another round of scans under our betls. We are sort of loving life on this med these days - it's predictable and not too tough on Hansie.

NOW we scramble. We have to wait in the lobby til the med shows up. Get a cab to the hotel to pick up our stashed bags, and try to catch our flight!!! Wish us luck. This med can take a little while...

We were fortunate to get to visit with Lily's and Elijah's families while up here. Two more NB families to love! Lily has been in surgery all day!

Peace, Love and Cure,
Lara

We're Off

Were off to Philadelphia this evening. We'll get the MIBG Injection tomorrow and the scan on Wednesday and we'll be back on a plane to Houston Wednesday night. One of my friends pointed out that I've never explained what this injection is all about, so here ya go:
(adapted from this site)
An MIBG scan is an imaging test that uses a substance (called a tracer) and a special scanner to find or confirm the presence of Neuroblastoma, a tumor of specific type of nervous tissue. A radioisotope (MIBG iodine-131 meta-iodobenzyguanidine) is injected into Hans' port. The compound attaches to Neuroblastoma cells. The next day, Hans lies under the arm of a scanner. The whole body is scanned in a test that takes about an hour. Hans is literally taped down to the table so that he doesn't move and the image is clear. The scan is later read by Radiologists to determine Hans' disease status. Hans is given SSKI drops for five days, starting the day before the injection, to minimize the effect of the radioisotope on Hans' thyroid. I haven't officially been keeping track, but at a bare minimum this will be Hans' 21st MIBG scan of his young life. There is a DVD player in the Scan room, kids can watch and listen to a movie while they scan. For the past two years straight Hans has chosen to watch the movie The Incredible Hulk as he scans. Nothing else.

Six weeks ago we scanned and learned that Hans' tumor is getting smaller. We are hoping to get similar or better news. It seems like every NB kid I know of starts complaining of pain the week before scans. This week, Hans is pointing at his back and shoulders saying we better get them checked out because they are sore. Kevin and I attribute this soreness to Wii's JUST DANCE, which we just purchased over the weekend and it has turned our place into a dance-a-thon! But, only the MIBG will tell us for sure that there isn't new disease cropping up.

Ah, we had such a very busy weekend around here that in some ways Philly will be a place to catch our breath. Crazy, huh? Elle really had back to back activities including a party, Honor Band Try-Outs, a soccer game, a sleepover, a girl scout meeting where we planned next weekend's campout, and a babysitting gig. Kevin had a golf tournament with some of our buds and we managed to do one 'training' bike ride (21 miles). Taxiing and cheerleading fell to me and Hans.

I'm really thinking about and praying for some of our NB cohorts right now, especially Patrick, Lily and Elijah. And of course, I cant stop thinking about my grandpa - who is holding his own, and my uncle - who is recovering quite nicely.

Peace, Love and Cure,
Lara

Make A Wish

I found this link today. If you Write a Letter to Santa and drop it off at Macy's, they'll donate $1 to the Make A Wish Foundation, up to 1 million dollars. Clearly, this is right up Hans' alley, so he has already typed up his letter and we've printed it out. Its cool though, there's an online form to Santa, and your child can practice his/her computer literacy, decorate the letter, print it, then cut it out, and take it to Macy's. We'll have to hit the Macy's in Center City Philadelphia next week to get our selves into the holiday spirit.


Hans is Mr. Holiday Spirit. He has already had us doing a little holiday baking (gingerbread turkeys), and he has taken me to the store for a few more Thanksgiving decorations. He's got a little Martha Stewart in him, I guess. It's pretty cute!


I restored my little list of kids "Also in the Fight Against Relapse". These are just a few of the stories that have stolen my heart. I had accidentally deleted the whole column, but it's back.


Peace, Love & Cure,
Lara

ANC Back Up

Thanks to Carla at Kiss the Moon for another cute pic. Yes, we even brought Honey on our photo shoot. She's even less photogenic than I am! She can't sit still or keep her huge tongue in her mouth. She's crazy but sweet.

We went down to TCH yesterday for labs and an impromptu office visit. Hans still has this cold and I wanted to get him all checked out. Dr. Russell said his lungs were good, and didn't find an underlying issue. The good news is that his labs look fine. HGB 9.9 Plts 3-something, and an ANC of 1600. He said, good, I can have my friends over! Yay.

I got some NEWS about our next Bake Sale. The 3rd Floor Foot Bridge at TCH is going to be under construction next month, so our Bake Sale is not going to happen 12/3/10. Thanks to everyone for their ongoing support of these bake sales! We'll be back at it in February for the Valentine's Day Sale. The bridge is already booked for Friday 2/11/11.

Also, my uncle made it out of surgery, and last I heard, he was supposed to be going home yesterday. He was up and eating and all is well.

We return to CHOP for routine scans next week. We will be up there at the same time as two of our little NB pals Lily and Elijah. Hoping and praying for good news all around.

Peace, Love and Cure,
Lara

I've Never Been This Organized!

another cute pic from Carla at Kiss the Moon Photography, thanks Carla!

With ordering my Christmas Card, that is. Usually I'm the last one. Sometimes I'm actually sending a Happy New Year card! But, this year I guess I was motivated since Pat and Rebecca initiated the Cure to the Kids Photo Holiday Card Campaign, Elle submitted a design, it was selected, and sweet Carla took our pictures, everything came together for me to order our Holiday card before Thanksgiving - that's a first. Too bad I couldn't manage to get my frizzy hair cut before the pictures were taken, but ah well! We're not perfect huh? Check out the site and order your cards too, if you want to check one of your things off of your To Do list:) All proceeds go to Cure Kids Cancer!





Meanwhile, while I'm marking things off my to do list, my family back home just got more bad news. My uncle Dean, who has Down's Syndrome, just got some bad health news too! My poor mom and aunties and cousins now have two patients to dote over and I'm just feeling useless so far away. My uncle is going in for a hernia surgery asap this morning and he will most likely have to have some of the intestine removed. Oh, my goodness! My Grandpa has actually been doing okay at home. He is there on hospice, but he is eating, eliminating, and having regular sleep and wake cycles. His issue was also with the bowel. Some dead tissue in the small intestine and for many underlying reasons he is not a candidate for surgery. When it rains it pours.





Peace, Love and Cure,


Lara

Round 15 Done

Hi,
Hans finished Round 15 of Millennium yesterday. It went okay. Hans does have occasional aches and pains on this medication and yesterday it was a little scary when he had a pain in the same spot as all that crazy arm pain last year and at initial relapse! Argh! Kevin and I plan not to bring it up and he hasn't mentioned it again, so that's a good thing. He had labs yesterday and his HGB and Plts are great, but that ANC is still pretty low at 600. He still has this cold! Uck. Going on Day 8 now.

Hans is cruising along in school - he brought home his first real report card and he got got all A's and one B:) He actually helped me finish painting my bathroom yesterday, too. My plan was to paint when Hans' counts were low but somehow I've only done three rooms! But, I am re-staining all of our cabinets so that is a pretty big job. I have been trying to tackle a 'project' each day when Hans works with his teacher. Makes me feel sort of productive. It doesn't happen each day - but it's good to have a game plan.

We just have a very normal busy weekend ahead of us. It's cold here now which is just great. Gonna go take Hans for a bike ride.

I messed up a couple of weeks ago and accidentally erased my whole column of kids "Also in the fight against relapse", we've recently lost many of those kiddos including Samuel, Elizabeth and Evan. I don't have the words at this point. Their families are in my heart, along with the great hope I have for all these kids still in the fight.

Peace, Love, and Cure,
Lara

Insane Christmas Wish List!

This is just too funny Hans has been working on his Christmas list since mid-September. We went online today and found all the Bionicles he has been wishing for and he made up a wild Amazon.com Christmas Wish List. Hans is crazy! We told him Santa's sleigh can't hold that many items for each kid. hee hee... Hans suggested Santa recruit some llamas to help out the reindeer. I guess Llama's can bear a bigger load???

We got our medication in the mail! Just two days off course. I actually think he did great with his two days off! His Platelets and HGB look great today at 272 and 10.7, however, his ANC is really dropping here at 381. Yikes - we are no where near the lowpoint on this cycle, so we'll go back in for a labs recheck on Friday. No Fever! But, ugh, that's not good, I fear. Our NP did think his cold is contributing to such a low ANC...

Halloween

Wow, we were able to fully enjoy Halloween. It seems like in the past few years Hans has had something crazy going on in the Fall, so we have really been enjoying being able to do it up. We have been able to decorate a little, bake a lot (Hans loves to help me out): brownies, sugar cookies, popcorn balls and caramel apples! We hit a few parties - missed a few. Kevin and I really sort of stink at going out and leaving the kids or getting a sitter. I guess we're sort of nervous nellies. Elle left us for a party at her friend Kelly's - that was weird to trick or treat without her for the first time ever! Hans had really pretty great stamina and was able to trick or treat to a lot of houses. He was the scariest "Fade In/Fade Out Unknown Phantom" and Elle was a little over the top as a glitter glam lion!

That's the scoop. We are waiting on meds. They are supposed to get here today now. I think Hans actually benefited energy-wise from his 2 day Halloween vacation from Round 15 of Millennium, especially with this cold that we all now have!

Yikes!

Whoa - we had a rough morning around here. First off, we found out last night that CHOP accidentally shipped out our med wrong. We had enough Millennium for 3 days, and needed more med by day 4, today. Whoops. Med is on a trailer somewhere between here and PA via UPS. Not due til the 2nd. Hans gets an unexpected 4day break in round 15??? We touched base with Dr. Maris via email. He said there is not much to be done about it over a weekend, but he did say given the fact that Hans has been on this med so long, that he wasn't too concerned about it.

Also, somehow my alarm didn't go off and we woke up late for soccer. We got to the field in time to start the game, but it was hairy. Elle is having some ankle pain and has been on and off the disabled list for the team. We are taking her to a Sports Medicine therapist on Monday.

Hans was able to make it through our friend Clay's Pump it Up party yesterday, but he's got a pretty nasty little cold. He didn't spike a fever last night, but I was sure watching him like a hawk. Oh, and Elle and her friends had a great time with the Rock A Thon! The kids had fun hanging out on a Friday night and I guess they raised $4,400 for their band! Isn't that great?

Lara

I got a couple dozen pictures from Carla at Kiss the Moon Photography today.
I'll have fun sharing these with you! Thank you so much Carla! Carla donated her time and talent to get these pics for us. I think it's so sweet of her.

Update: Hans is hanging in there on Day 3 of Round 15. It is a busy weekend around here with Halloween parties, get togethers, trick or treating, more pumpkin carving, soccer playing, bike riding (Kevin and I registered for the BP MS 150 next spring - so we have to start getting in training rides!!!), and more. Elle is doing a "rock a thon" tonight at school. Hans helped me haul my much beloved and well used glider rocker into the school today. She will rock for 4 hours with her bandmates to raise money for the band department. Sounds like fun! I'm just hoping this whole weekend gets to happen!!! I don't want to jinx us, but Hans has a pretty bad case of the sniffles as of this morning... but NO FEVER!!!!! He did have a pretty nasty headache last Saturday, but then Elle gets those too. Sometimes it feels like we are just hopping over landmines. Oh, how nice it would be to trick or treat from home.

My grandpa is to be sent home on hospice care today. My cousins and aunts have been working around the clock to retrofit his place for a new medical bed and various equipment. BIG job when you've been in a place 50 years. I wish every elderly dude had the love and support that my grandpa has!!! I wish I was there to roll up my sleeves and dig in. He'll be sure to have a good view of the TV for the World Series. In that vein, and for my grandpa, in fact for all of the grandpas (we've lost three this year - Kevin's dad's dad Len, Kevin's mom's dad Bud, and Kevin's stepdad's dad, Don!) I've got a few more Yogi Berra quotes, I love these!

"Nobody goes there anymore, it's too crowded."

"It was impossible to get a conversation going, everybody was talking too much."

"The towels were so thick there I could hardly close my suitcase."

"Slump? I ain't in no slump, I just ain't hitting."

"The future ain't what it used to be." - Yogi Berra

Peace, Love and Cure,
Lara

Hans is doing just fine. He is cruising along, counting his blessings. We went in for an office visit and a counts check yesterday. Everything checked out okay. We got the go ahead to start ROUND 15 of Millennium today. What a great trial this has been for Hans! We are looking forward to the day we get the all clear. Remember when I hoped we'd clear in 1 -3 rounds? Well, now I don't really care how many rounds it takes. I'm just pleased and amazed that we are moving in the right direction.


My mom called yesterday with very sad news that my grandpa has been admitted to the hospital and is not expected to recover. His whole family is gathered around and right now we are there in spirit! I had to share this picture again. Hans and Papa have a special connection. Hans gave Papa multiple long back massages this summer. They also made their annual raspberry jam together.



One of my favorite memories of Papa was the Christmas I bought him a book of quotes by Yogi Berra. It was really fun to watch him flip through the book, tears streaming down his face through his laughter! I am sure he was remembering some of these quotes straight outta the press.


In honor of my grandpa, I'm going to share a few of those quotes over my next posts. We've got all World Series Fever over here, rooting for SF! We actually WERE rooting for Phillies, but oh, they didn't quite make it. I guess I should explain, we used to live in CA - not far from SF in Santa Cruz. We are obviously huge fans of Astros, but don't know too much about the Rangers, so GO GIANTS!


"It ain't over till it's over." - Yogi Berra

"If you don't know where you're going, you might wind up someplace else." - Yogi Berra

"If you come to a fork in the road, take it." - Yogi Berra

"In baseball, you don't know nothing." - Yogi Berra

"It ain't the heat, it's the humility." - Yogi Berra

Peace, Love and Cure, Lara

Four Years

Hans was diagnosed with High Risk Stage IV MycN Amplified Neuroblastoma four years ago today.The funny thing is - I don't really feel like reflecting on it today! I don't think I will.

Usually I go through this whole thing on anniversary. Usually.

But, actually, today things are going well and I'd rather worry about Halloween and raking the yard, and keeping kids on track with their school work and upcoming events! I guess I'd rather look forward today than look back.

Hans is a beautiful boy. His life has never been the same since his diagnosis day. None of our lives will ever be the same. The medicines and procedures used to save Hans' life have caused him some serious harm. But, I believe with all my heart, that Hans would choose to fight for this life over and over. He rolls with his punches. Kids are resilient, and Hans is an incredible kid.

I hope science can keep the docs one step ahead of his disease. My heart is full of so many hopes and prayers that I sometimes feel greedy. My prayers are not just for Hans, but for each of these kids in this fight.

Today we will do home school, I will start on painting my bathroom, we will run some errands, get our girl to soccer and back, eat some dinner, hang out, play Sorry! And we will celebrate the fact that we are all here, all four of us. And I cannot tell you the gratitude and thankfulness in my heart for that fact - just that we are here.

Peace, Love, and Cure,
Lara

Kiss the Moon Photography

I just wanted to share a pic. Our friend Carla at Kiss the Moon Photography met up with us Friday to take some pictures at a local park. This is the first one i've seen.

Hans's picture day was supposed to be last Monday. We couldn't send him b/c we weren't sure his ANC had recovered. I think we got alot more that the typical first grade shot. Thank you sooo much, Carla. Carla is available for family shots, senior pictures, etc etc... check her out at Kiss the Moon Photography:)

Christmas Cards Now Available online

I wanted to share this link with you. Order your Photo Christmas Cards this year from Cure to the Kids and you can help fund a cure for NB while checking off one big item off your Christmas list. Elle submitted a Christmas card design and it was one of the seven selected for this project.
Check out the link!

ALSO....if you are looking for something fun to plan with the family - think of taking your kids to The Bootstrap Foundation's Fundraiser day at Dewberry Farm! Saturday Nov 13th.... CHECK IT OUT. This event is put on by friends of two other NB families. I think it's pretty sweet that they are doing this for the CNCF!

Peace, Love and Cure,
Lara

Homework "Genius"!

I just have some fun news to report. We have done a 180 on homework around here. Hans went from protesting any form of homework in the form of fit throwing tantrums, to going to the cupboard looking for more! I am loving this 180! Hans now says his homework is easy for him because he's a genius. Whatever it takes. I'll serve him his homework on a silver platter. I just want him to keep up.

I am thankful for Mrs. Parker's amazing diligence. We are benefiting from an extremely gifted and dedicated teacher. She is showing Hans all the care that she shows her classroom students. Our Homebound teachers are all stellar as well...seriously, pinch me! Our Ms. Kathy is going to be out for a total knee replacement until the new year. Poor thing - I can't help but cringe every time I think of her surgery. We are getting an excellent sub while she's recovering.

Hans is burning through several days of math and science this afternoon...right there from his comfy chair, with his food tray and his favorite shows in the back ground, but I guess there are a lot of different ways to learn, huh?

Monday

Not much to report on the Hans front. We just had our quiet weekend with a low ANC...so, we did take advantage of the weekend at home to get crackin' on some more house projects. We all sort of feel like we're 4 years behind around here!

Hans is doing super - just sort of on Cruise Control (right Ashton?)...He does complain of mouth sores a little, and of phantom leg pains...oh, but we'll take it!

I have to give a shout out to our babysitter Katie - who took orders for 18 lanyards from her education major classmates at Sam Houston State. Also have to thank a group of my beading girlfriends who spent Friday here beading with us to get the order filled. Awesome! AND we got a nice visit from Kevin's cousin Jessa who is here in Texas at College - she's a few hours away in Waco, but we were happy to finally get to see her! Elle was able to pack it all in with a b'day party (pictured above with her pal Kelly) and a soccer game. After the game, Elle and Kelly sure made me smile when they told me they get sad at the end of the game b/c they love the action and don't want it to end!

I have a very special request. Our dear friend Patrick just got news of new progression after giving the Seneca Valley oncolytic virus trial a shot. His sweet little family just hopped on a plane to Lourdes, France in search of a healing miracle. Please send this family some special love, prayers, and thoughts this week!

Round 14 Done

Yesterday Hans completed Round 14 of his Millennium. This is Round 14 of a possible 34. Hans is on a Phase II Clinical Trial on this drug. The way the trial is written, Hans is able to stay on the drug for 2 years. A cycle is one week on the oral med, two weeks off. So - if everything stays on track, you should be able to get 17 rounds into a year. We were delayed a couple of times this year, so we can actually only squeeze 16 Rounds into our first year on this med. I don't know if it is time-limited or round-limited, I'll have to ask. We'll cross that bridge when we get there. We are just feeling fortunate that we've stumbled upon a drug Hans' tumor responds to. When we relapsed for the second time back in December 2009, Dr. Maris had a pretty guarded optimism. He suggested that we may be treating the NB as a 'chronic disease' for Hans. Well, here we are ten months into the drug and things are looking good. For the first time during our last office visit, Dr. Maris indicated that the spot might just clear on this med. I always thought it would/could - but what do I know?

Hans' counts are holding their own. We got counts locally yesterday. His white count is actually quite low with an ANC at 500. His HGB is 11.9 and plts are fine about 250. That low ANC is the culprit for keeping Hans in a homebound school program on this med. But, I do think that Hans is fine with being homeschooled. I sure do miss his opportunity to socialize with the other kids, but ultimately, I just hope he can keep up academically!

That's the scoop for now.

Lara

10-10-10

We are back into the swing of things here at home.

It is nice weather this fall. We've been able to spend some time working around the house, on the yard, decorating for Halloween, going to soccer games,
etc etc. Kevin is getting his 'old' road bike out and cleaning it up this weekend. It's all the regular stuff of life that most families are doing, but we always feel so extremely grateful to be able to do these mundane things. I have this 'blown away' feeling after the news of those scans. I just really feel like we are in the right direction, in the right place, and it's all such a mystery of Science and Biology and God, and I am just so grateful! I feel like we can breathe. I have this amazing feeling that we are in the right place, for us, for Hans, for now...

I ordered Hans a Halloween costume with red light up eyes - it's a random costume called "Fade In/Fade Out Unknown Phantom" Costume. I'm just glad that Hans still wants to dress up. In some ways he is so "mature" for all he has been through that I wouldn't be surprised if he just said, "I'm not dressing up." He is getting really into it, and he has agreed to dress up for Halloween until he turns twelve - then he's done, apparently. He actually took great care in helping us set up the Halloween lights and he's the one who thought of getting the three-way plug in and ran to get it from his room for the job. He's already thinking ahead and said that we need to get more Thanksgiving and Easter Decorations (guess he feels we are okay on Christmas).

With all her big hair, Elle is going to be a Lion for Halloween. A group of her girlfriends are creating the whole cast of the Wizard of Oz around that idea. Fun!

Oh, we can keep voting! The Pepsi Refresh Challenge is still going on: Support Kids' Cancer Research has submitted their application once again, so we can keep voting for them HERE or Text* 102462 to Pepsi (73774)!

Guess that's about it for now...
Lara

Spot Very Faint

Hi,
Just got done with our Office Visit. The big news: CT scan Negative, aka normal. I swear I figured that was the case. Our techs cheered yesterday at the end of the scan. I didn't figure we got all that just for being good patients. The techs really aren't supposed to say anything, and I really try to NEVER ask or NEVER interpret their facial expressions or anything. But it was hard not to read a little something into the cheering!

The MIBG was completed this morning, and it is still very faintly positive right on the top of the skull. Dr. Maris told us today that it is very difficult to detect the spot. He said that if he shows the scan to another doc (a resident) he'll say it's a negative MIBG scan. But he also said that since they've been staring at it so long now (10 months now) they can detect it. We talked about what's next... and he is so strongly pleased with where we're at he's pretty much recommending that we stay the course with this med for up to the full two years or 14 more months/or 21 more rounds or so... He actually seems to think we are going to clear the spot if we keep it up. He is happy with the result thus far!

We are hanging out in the waiting room waiting for our next dose of MLN8237. One of the nice things about being on a clinical trial like this is that the medication is prepared in house, just for your child, and it's handed right to you. (Oh, and it's free, which is nice! But, really - that's the only thing about a clinical trial that is free - the rest of it goes through your insurance just like any other therapy. I think I used to think the whole tab would be picked up by the trial. Not the case, which is probably a good thing - keeping costs of trials down.) Sorry about that tangent, I get asked about that every once in a while so I thought I'd throw it out there.

That's about all for now.
Thanks to Kelly and her family for taking care of Elle in our absence, and thanks to Michelle for taking care of our animals!

Peace, Love & Cure,
Lara

Scanorama

Hi,
We are in Philadelphia. It's coldish and rainy here but not too bad so we are not complaining.

We got in LATE last night and today Hans got accessed for a lab draw and an MIBG injection and got a head CT. The day went very well. Hans is always a rock star getting his port accessed! I am not sure if I've described this process here. Hans's port is just under his skin over the left nipple. Getting it accessed means a nurse sticks a 3/4 " long needle into it. The needle is attached to a plastic head that tubing fits into. After he is accessed, he's all taped up with a dressing. When he gets deaccessed, the tape comes off and the needle and tubing is pulled out. Labs can been drawn through the port, and meds can be given. I think most kids with a port use a numbing cream or freeze spray before getting accessed. For some reason, Hans does not. Hans has had this port since he was four years old. He has never wanted any freeze spray or cream. He has always insists on taking it 'like a man"! On days like today when we are in an oncology clinic, Hans usually does really well. When we get accessed in the ER or, say, an ambulance, the accessing can go less well. Practice makes perfect. I think Hans is a pretty easy stick. We are kinda proud of him about this. Not usually a single tear. I'm just glad this doesn't have to be traumatic, since we have to do it at least monthly!

Most scans and other procedures go well for Hans as well. This Head CT today was a breeze. He had to be without food this morning, in case the IV contrast made him nauseous, but all went well. The CT is by far the best scan! Fast! No Sedation! Easy! And, we found out today that when you just get a head CT - no oral contrast is necessary. Hooray. This is good because drinking the contrast is icky and it takes like 3 hours! So - we had a pretty 'easy' hospital day today. in and out in less than three hours. MIBG scan and follow up office visit will all take place with Dr. Maris tomorrow. Needless to say, we are wishing up stars that these scans are as good or better than the last.

We had a special night. We were able to meet up with the Tenneson's for an early dinner. This sweet family lost their brave Braeden to NB. We've kept in touch and were finally able to meet up on a trip back. They are sweetie pies.

Thanks for checking up on Hans. Hope this is a good scan week all around. Our NB buddy Elijah is up here getting scans and Patrick is getting them back at TCH...

Peace, Love & Cure,
Lara

Perfect Days

We are fortunate to have nothing to report but some perfect days. Hans has been doing school, helping us in the yard, planting flowers, laying mulch, making soup! It's all good. Elle is going a mile a minute with school and extra curriculars and now working - she had her first job babysitting this weekend, thanks Shannon!

I'm sure everyone in the world has heard Arms Wide Open won the $250,000 for NB research. Yay! Thanks for your votes. I hope there are few more Pepsi grant applications that come through for us in the future. I know that Support Kids' Cancer Research has submitted their application once again, so we can keep voting for them HERE or Text* 102462 to Pepsi (73774)! NB probably has hundreds of different parent fundraising organizations - I sure like it when we all work together for the greater good.

I was posting nearly every day during September for Pedi Cancer Awareness month, I don't think I'll have as much to say this month, so we can go back to a couple/few times each week. We go to Philly this week. I am praying so hard for great news that I can't even tell you! I am praying for Hans and our friend Patrick who each have scans this week. Thanks for joining me and keeping these two and all the children in your thoughts and prayers.

Peace, Love & Cure,
Lara

Nightly News Clip

I missed it last night, but caught this clip from another NB parent, Dr. Maris was on the CBS evening News last night with Dr. Sanjay Gupta. He is talking about the Immunotherapy ch 14.18that has dramatically decreased relapse rates among our kids. You may wonder if Hans will get this? Did he get this? Nope. It wasn't offered to him when he was diagnosed 4 years ago - it wasn't around yet (at least not at TCH, not to our knowledge!) But, thank God it is now. This is just the kind of research advancement NB needs.

But, there are other kinds of Immunotherapy that Hans still might be able to take advantage of at some point in the future, such as the 3F8 antibodies in New York. This is what we've all been voting for all month long (actually a new version that has less side effects than the current antibody - from what I understand the big side effect is PAIN). Thanks for your votes. Last I checked we were still in second. We just need to hold the lead six more hours. Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)!

Peace, Love & Cure,
Lara

Holding Second Place

Thanks for continuing to VOTE! Wow - what an eventful time we've had this September! I am seriously ready for October:)

Keep voting - Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! Just for two more days. Thanks for your support.

Hans is fine. It's gorgeous here. We are all busy. It's cool enough to start tackling the yard...that's gonna be a BIG job. Oy! We will try to be at Cold Stone tomorrow for the World's Biggest Ice Cream Social. Hans and I were able to join two other TCH mamas, Joyce and Charon, on Monday for the Chili's St. Jude's day. It's exciting that there's so much going on for Pedi Cancer Awareness month this September!

Erik's mom, Donna, keeps an interesting blog, NB Globe and posted this article that I think is worth sharing - on why our little pedi cancers get neglected by big business pharma companies...

Peace, Love & Cure,
Lara

Counts OKAY!

Kevin in Canyonlands, Utah this weekend

Kevin Arches National Park (Utah) This Weekend

We had to trek back down to TCH today for a follow up visit after last weekend's stint inpatient. Everything is groovy. Hans' HGB is 9.9 here on day 14, his plts are about 120 and the ANC came back at 810, a little better than the 500 it was Thursday. Dr. Russell's interpretation of that head pain was that we just feel more achy and painy when we are sick. That's what each of my parents thought too. It's right up there with my favorite alternate explanation of 'tumor kill'. That's always my favorite possible cause of any symptom!

Oh, Kevin has been gone again! (He is a geologist - so he still gets to take field trips - went to Utah to study salt techtonics and sand deposition. The rocks in Utah are ancient examples that they can see with their own eyes of the rocks he examines in the subsurface at work via computer.) We are just about to go pick him up from the airport from another field trip to Utah. I know it's hard for him to be away from Hans, but at least he got to be in some beautiful place he really really loves. Ironic that it was hotter there than here! We've had a gorgeous change in the weather and we've been able to hit the park again.

PLEASE KEEP TEXTING!!! Three more days of texting. We are still in third. Oh, it would be sad to end the month one away... Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote! I love this story from our friend Dodie who teaches at the 9th grade campus:
"I let my students get out their cell phones to vote today for the Pepsi grant--they thought it was AWESOME to get to use their cell phones in class! Hopefully they actually voted as opposed to texting their friends! If they voted, that should add about 50 or so votes today. I told them we would do it again tomorrow and Thursday. Good Luck!!"

sweet

Elle's request for her birthday was that her friends contribute to the CNCF. Here's her request, in her own words:

"Some of you may know that I have a little brother with a pediactric cancer called Neuroblastoma, and I would love to have some money donated to the cause. I ask that instead of presents please just bring a donation for the Children's Neuroblastoma Cancer Foundation, it may help a lot!"

She brought in $860 in honor of her little brother.

I just want to say THANKS!

OH - and I failed to mention the vote this weekend! WE MUST KEEP VOTING! For a while yesterday we had dropped to third. When I woke up we were back in second. This is for a quarter of a million dollars - that's a lot of bake sales and birthdays!!! And voting is free:) We must vote across the next 4 days! Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!

Peace, Love, and Cure,
Lara

Happy Twelve to our Elle

Our girl is twelve. We really couldn't be more proud of our darling, scholar, athlete, beauty with a kind and generous heart and a fun fashion sense!

She's been such a sister and friend to Hans. She never treats him any differently because he's in treatment. He'll tell everyone how she tortures him! They have that typical love/hate brother/sister thing. She is turning her b'day into a CNCF event...I'll post more on that later. It's awesome.

We're so fortunate for her good nature. We've had to schlep her off on friends more times than we can count since Hans started treatment. Many families have told us she's on the 'short list'.

Why is it that with every major holiday our celebrations have a bittersweet undertone? We get this gorgeous girl. Every child ought to see their 12th birthday, and oh so many more...

Peace, Love & Cure,
Lara

Second Place

I almost can't believe it, Arms Wide Open is in second place! It just tells me that NB families are organized and they can and do mobilize people to make a difference. All the stories of our kids are so gripping. They are so heartbreaking, and there is such hope that all of it can change with key treatment findings of the future. I have to live with that hope! Every couple of days I stumble across the statistics..."there is no known cure for relapsed NB, ...survival stats hover around 5%..." I don't dwell on these or think of them often because those stats are based on yesterday's research. There are efforts going on all over the country and the world to make the change. We are in a battlefield and we've already lost so much. We'll never forget the angels amongst us. And still, tomorrow is an entirely different ballgame.

That's how I have to operate anyway!

Check out this link - Hyundai's Hope On Wheels program funding grants for Dr. Sholler's research in VT.
(Stole the link from Pat.)

And one more link: watch this You Tube video, Abby Miller sings for Taylor Love, promoting the Arms Wide Open Vote. Talk about gripping!

Don't forget to keep voting...8 more days and we can rest. Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!

Stephanie... I log in and vote several times a day online. I figure it's okay because I'm using the log in. It usually makes me wait an hour between votes. It only allows me to text for each issue one time per day per cell phone line.

Mrs. Parker's class - I forgot to answer your question, Elle's team is in BLUE:-) That is Elle there, no. 41.

Peace, Love & Cure,
Lara

We have adjusted just fine to life back at home. I was wondering if Hans would have to cut his session short yesterday, but he did just fine. He is learning big 1st grade math...story problems and everything. I'm pretty proud of him! Oh, and we were pretty sweetly suprised by a get well packet from his first grade class at school. They had caught wind that he was in the hospital, and each student sent him a note with a little picture. My favorite was a note that said (your monkey - Pookie - has been messing with the calendar!). I guess that little monkey is playing tricks on Hans' class. Too cute - thanks Mrs. Parker and class!

We emailed Dr. Maris about Hans' complaints of pain. He got right back to us, saying that it would be prudent to add a head CT to our next round of scans, "hopefully just to reassure us". We will be heading up to Philly in two weeks.

In the mean time, on to the next thing. Elle celebrates her birthday this weekend! She's going to be 12. Oh, what fun.

Keep Voting! Nine more days. AWO has moved uo to third. Support Kids Cancer Research is 31st. Thanks. Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!

Peace, Love & Cure,
Lara

Home

We are home! It is nice to be home. But, oddly enough it is never an easy transition for me. There are always 1000 things to do in 4 hours as opposed to 4 days. That's just the way it goes. You run around filling prescriptions - usually we have to call around to a few pharmacies to places to find the right meds - and make impromptu shopping trips - squeeze in laundry and call in favors for rides to/from soccer. It's a zoo! BUT we are most certainly glad to be home. Glad Hansie is fine. Glad to be all together - all 4 of us and our 5 little pets (a dog, 3 cats and 2 frogs still kickin') under one roof! I flipped through my calendar and I don't think we've actually been inpatient since JANUARY! That sort of tells me that Hans is actually holding his own on this Millennium! Only 2 hospital stays and one transfusion in the 10 months/13 rounds since he has been on this med. He has stayed on track with his dosing and will actually complete the round tomorrow. Yay. We are to get a CBC locally Thursday and go back in for an Office Visit to follow up with Dr. R. next week. No one seemed that concerned about the pain in the head (it is only when he/we touch it) so we are just going to bring it up with our oncs and see what they have to say about it.

Thanks to Shawn and Dean for rides for Elle, and Michelle for offering to have Elle over after school, but we made it home!

That's about it. Gotta go to bed. We left for the hospital for a bake sale Friday morning and we are really just now getting home (Monday night). Feels sort of like the twilight zone.

Peace, Love and Cure
Lara

Waiting for Discharge!

Here's a picture that Elle's teammate Allison took over the wknd. Go Elle! The game was great I guess. Elle scored a goal. A beautiful punt from our goalie that Elle tapped in right over the goalie's head! I wish I could have seen it. We won that game 2-1. Just the news we needed to hear from the ER Saturday morning.

Hans and I are just hanging on the 9th floor. Hans is actually looking pretty great now!!! We are just trying to stay entertained and bust out of here. We watched Home Alone 2 last night and I don't think I've EVER heard Hans laugh so hard. He didn't eat so much besides chips and soda yesterday, but breakfast is all about bacon to Hans when we are inpatient, and he's already eaten what came on his tray and sent me out for more.

That's about it! Kevin and Elle were home last night and are at work/school today. Thanks to Rebecca my Girl Scout Co-leader who took over our first meeting for me at the last minute. And thanks to Debbie for taking care of Elle yesterday while I came back down to the hospital. She even sent me off with the most delicious lunch!

Please Keep Voting - TEN more days of voting. I've heard through the grapevine that we were in third for at least a brief moment in the wee hours on Sunday, but we're back in fourth, and 32nd. Vote for Arms Wide Open Here, or by texting Text* 102653 to Pepsi (73774). AND vote for Support Kids Cancer Research HERE or Text* 102462 to Pepsi (73774)! You have to click the link, register and sign in to vote!
Thanks,

Lara