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