Beautiful!

So far so good! Hans is now on Day 6 of the ABT 751 - and it seems he has managed to avoid major complications. Dare I say it or post it? This is beautiful! It is nice to get a breather. I think Hans' outlook is pretty rosy these days. Lately, instead of asking to go on a bike ride, he says, "let's go on a beautiful bike ride!" We've been riding a lot. He is not only going around our whole big mile-long circle, but also exploring each and every cul de sac. He is starting to get better at the rules of the road...stay to the right, keep your helmet on...etc. Today, when it was time to get on the bike to pick Elle up at school, he said, "Let's go get my beautiful sissy!" I have been telling myself I need to start jogging again to keep up with him!

A few events are coming up quickly:

The Sparrow Clubs, Highlanders for Hans is having a Chili's night on Tuesday March the 3rd! A good way to celebrate a big day of TAKS testing... flyer below... It is pretty sweet to know that 1,000 ninth graders 'have our back'!!! Thank you Sparrows!




On March 14th, there will be another fundraiser garage sale in Spring for the Children's Neuroblastoma Cancer Foundation. If you have any items to donate, just let me know. Drop them here, or I can come get them. Tax Donation receipts available!

April 18th - Earth Day Festival NB bake sale! Looking for bakers, workers, shoppers! Location The Woodlands High School! Proceeds go to the CNCF for more research, to save more kids, now!

Just email me at kevinandlara@hotmail.com for more info!

Please keep some of our sweet friends in your thoughts and prayers this week. Little Michael undergoes his second resection surgery Friday. And, Erin is starting up an additional round of Radiation.

Hans is on ABT-751!

All of our prayers came through for Hans today! His ALT (sorry, last time I posted I said it was his AST we were waiting on) was 133! Even though it was 8 points above '5 times normal', Dr. Russell called it good and gave us the go-ahead to start. I'm very happy about this. But then, I really had put all my eggs in this basket, so I can't imagine waiting the weekend with a no-go. So now, all we have to do is hope and dream and pray that the ABT 751 will go down easy for Hans, and that it will keep his NB away! I know I'm not asking for much here, huh? Apparently, he can go on this drug for up to 3 years. We will scan again (in Philly) in about 6 weeks to see if we get the thumbs up to keep it up.

Here is a picture with Elle and Hans and all of the CASES of cookies she sold for the Ronald McDonald House! Thank you very much to all of our sweet buyers. There are even more boxes from her troop, too! Elle sold a personal record of 422 boxes this year, with 164 of them going to the RMH Houston - Thanks!

I have been wanting to post a couple of other research-related things. Did I ever tell you that I found out that the CNCF at least partially funded the Phase I Trial that Hans went on up in Philly that put him back into NED status! It just gives me chills to know that you and I have saved this boy with every ornament we put up on his giving tree, every lanyard and baked good we've beaded, baked or bought, we've helped fund important research. It's huge. If you feel moved to do so, you can go back out to www.lunchforlife.org to celebrate by putting another ornament on Hans' tree. Or, better yet, you can put up a few! Put one up for Erin Buegner who has been battling NB since age 5 and now she's in middle school beading lanyards and authoring cookbooks for the cure! Visit her site at http://erinbuenger.blogspot.com/ she's one of my favorite girls in the world. Or, you can put up an ornament on my bud, little Michael Bazargani's http://www.michaelbazargani.blogspot.com/ giving tree - he just learned today that he will go ahead and have surgery next week to remove some residual tumor after 8 rounds of chemotherapy! Don't forget our friend, Colby Ash, who is still stable after relapsing almost 3 years ago! Or, Alex Black who just moved into Long Term Survivor Status! Just a few ideas... there are so many children to adore all over the country and world who are battling this disease, or who have already finished the fight.

I'll post more later with news of the Earth Day Bake Sale, the next NB Garage Sale, and the Amazing Grace Golf Tournament. There are so many ways to help fund the cure. We are continually humbled by your ongoing support.

Have a good weekend! Lara

Liver Panel too High to Start ABT...

Aaargh! This is so not what I want to be posting. Hans had one value on the liver panel that was too high yet to start the new therapy. The theory is that his virus made the liver work too hard and caused the inflammation of the liver... We are starting to get antsy about being off therapy! We don't like it one bit! Hans' AST was at 239 today. (But it was 375 while inpatient!) 239 is almost ten times normal range, and they don't want him starting a new therapy until it is closer to 5 times normal. They suggested rechecking next week, or even putting him on a different therapy for now. We have decided to give it one week. We even talked Dr. Russell into letting us come in to re-check this value on Friday. If you are thinking about Hans, or praying for him this week, please pray that his liver enzymes will come back down! It'd just be another little mini miracle to me if we were good to go for Friday! THANK YOU!

We found out his virus: Rotavirus. No fun, but a communicable disease going around up at TCH these days. Poor Elle had a run in with it on Friday and Saturday, but was improving by Sunday! Much quicker than her little bro. But the girl missed out on a total of three sports games, her very favorite take out burrito, and an invitation to go see Hotel for Dogs with her bud Shane. Not the best way to spend a three day weekend. We were all good to go for a two hour bike ride and park date yesterday though.

We are actually planning to take it pretty easy. I don't want to tempt fate and wind up with another virus that for some reason wreaks havoc on Hans' liver enzymes. Just hoping that Friday's counts will be good enough. I've also been running Elle around quite a bit. This is her busiest time of year, soccer and basketball overlap for about a month, and it's the same month as science fair and Girl Scout Cookie delivery! We are hoppin' around here. I should be able to pick up cookies tomorrow and we'll get busy getting orders out soon...

I'll keep you posted.

Feb 13th Update!

So much for Friday the 13th, I think we did pretty good. Hans is discharged, (peeing! eating!), at home, and looking much more like the old Hansie.

Also, we did a pretty dang good job with the bake sale. We sold about $1,550 worth of baked goods and lanyards/jewlery. Thanks to all of you who were able to bake or bead for our sale. And thanks to Breanna, Nurse Natalie, Mayada, Sarah, Virginia and Carmen who helped me work the tables today. Fun, Fun Fun!!! While we were selling baked goods, Kevin and Hans were having "guy time" playing Wii in the room on 9, and Elle partied with her 4th grade class for Valentines Day. Thanks to Alana and fam for having her after school today...

Short Commute to our Bake Sale

I have only a 6-floor elevator ride to our bake sale this morning. The downside of the short commute is the fact that we won the 'golden ticket', as my friend Mayada says, to a one (plus?) night's stay on the 9th floor. Poor Hansie has taken a pretty good hit in the form of this virus he is fighting. We had a very rough Wednesday night of Vomiting, Diarrhea, and an emergency stress dose injection of his solu-cortef. By the time Thursday morning rolled around I was ready to RUN into clinic. Poor guy was so wiped out, and he was nothing but skin and bones after fighting off this bug for 6 days now.

I don't do so well on less than a full night's sleep these days, and I was a mess rolling into the clinic. Actually, as soon as Ms. Cynthia in registration asked me, "How are you?" I just exploded in tears. As they always will, the nurses and staff just scooped us up, ushered us into the triage area, and finally I felt relief, and I felt safe, that this familiar staff could take over the job of keeping Hans afloat! Everyone had heard I was freaking out, and then our nurse joked that we needed a guest book at the door to keep track of everyone who popped in to check on us. Hans has all of those ladies in clinic wrapped around his little finger! I guess we all have it pretty good up there.

Hans is hydrating on IV fluids formulated just for his needs. He has started peeing again (thank GOD, I was REALLY freaking out about that one), and he has tested negative for the entire Hepatitis panel. I didn't even have the heart to put it out there that they were testing him for THAT virus, so, now you just get to learn that he does not have it! Since he is not peeing very regularly yet, they may do an ultrasound of the bladder to get any clues as to what is going on with him. Dr. Russell had a very serious talk with me that this is NOT a serious condition, it is just a GI virus and we have to watch our little Hans carefully, but that we'll steer him through this and onto the ABT751...

So, that's our news. I'll update more soon on Hans and our bake sale. A lot of our bakers (including me) had to back out due to being sick or having sick kids. It seems like half the people I know are fighting something off right now. We'll see how the scaled back bake sale goes. Thanks to everyone who was able to bake or work or shop today!

Lara

ABT 751 on hold for now

We have had a few more events since my last post. Sunday was pretty casual, Hans seemed to be making some improvements after his 'big night' in the ER. The same on Monday, but then he had an unfortunate bit of vomiting. Which, for most kids wouldn't trigger much concern. But - Hans, with his Adrenal Insufficiency, risks dehydration. So, we spent Monday night at the St. Luke's ER in The Woodlands.

This morning we went to see Dr. Russell for what was supposed to be the visit that cleared us to start ABT 751. Not Yet! Both TCH and CHOP agree that we need to wait until Hans returns to baseline...

For now, Hans' liver panel indicates that he may have a virus. We've done tests for EBV, CMV, and even some other unpleasant viruses out there.

It may take a week or more to get all of the tests back. Hans seems to feel okay at certain points of the day, and then he really loses steam. He needs to get better so we can get him on the Med that we hope will keep this cancer away. He is drinking okay and eating just a little. But he isn't really peeing very often, so we need him to get better at that now too! He is also sort of on isolation from pals, mostly to protect them from picking up this unknown virus.

Hope to post of his improvements soon...

Lara

Tour d'ER

Hans on Swing in new Bathrobe Friday

Kev and Elle

Elle and Grandma Kathy before B'ball game

Hans Elle and Honey (hard to get a good shot!)

Hans and Jack playing near our park

Okay - so I feel a little bipolar! We were on this glorious/magical looking well, doing well, feeling well high and then...

Sat AM Hans woke up a little hot, and by noon we were at the TCH ER. Yikes! The fear is always a line infection. So, after 8 hours, and negative, strep, flu, and urine tests and a neg. chest xray - we were on our way home. A dose of IV AntiB's to fend off any threat. But then, he spiked his highest fever of the night at about 10:30, only a half hour after getting home. So - I spoke with our on call docs, and pleaded with them to spare us another trip down to TCH. We were granted permission to visit our local ER. The docs up there did pretty well for us! Hans received fluids, a stress dose of steroids, and we were out the door looking better by 5 am. What a *(&(^ weekend. Not what we had in mind. Ah well. Hoping it is just a viral thing, and not an infection. The blood cultures can take 48 - 72 hrs. to come back positive. I am also hoping that Hans recovers quickly enough to go ahead with new treatment on Tuesday!

Thanks to our friend Dana for having us over to celebrate our news on Friday night. It was fun!!! Hans hung in there for a few hours before bailing.

I just found out Kevin's sweet Grandpa Bud took a fall and is in the hospital. We're praying for a surprising recovering and some encouraging answers from his docs! Love ya Grandpa Bud!

Here are a couple of pictures. I promise to post on Tuesday with news about the ABT 751.

toothbrushing and bathrobes...

Not the most exciting post, but I'll take it. I am thrilled that my focus these days has been on the more mundane, or normal aspects of parenting. Hans has been borrowing my and Elle's bathrobes to snuggle in. They are both too big, so we just had fun going to pick out a new one for him. Cars! It fits great - sz 4. He is a professional snuggler and now he can do it in style.

I also feel it's just an absolute luxury to focus on regular behavioral stuff. We have had a tough road with treatment the last few years and we have really 'picked our battles'. Hans hasn't ever been very good about wanting to brush his teeth and it can often be an interesting/unpleasant experience to get the job done. So, we started him on his first ever star chart yesterday. So far, it's going pretty well! His reward after 14 happy teeth brushing sessions will be a new transformer (Bulkhead), and hopefully, we'll take some of the drama out of this little task. I've already got big plans for future star charts (getting dressed, taking baths) but I think we'll take it one star at a time. He's funny, it's like he is kind of into getting the stars, but he has to play it very cool/low-key. He told me today that he'd put the star on for this morning, but only if I wasn't looking. I can meet those terms!

Hans is getting more and more energy! He is enjoying bike riding and the little park/with the rock wall. We are planning to keep celebrating our good news into the weekend, and right into next week. I honestly think he is doing better these days than he has since before he got sick in Oct. 2006, at age 3.

We got the OK from CHOP yesterday for the ABT-751 for Hans. We should be able to start it next week. It is an oral pill, 7 days on, 14 days off. I guess the first pill will be taken in clinic, go in for counts I think once a week for now (while we're still monitoring his Potassium levels) and watch him for side effects and go back up to CHOP for scans again after the first 2 cycles...

The Valentine's Day Bake sale will be at TCH on Feb 13th. Please email me if you'd like to help out and I don't have you on my mailing list yet. Thanks. kevinandlara@hotmail.com.

Lara

ps i wanted to post a couple pics, but I cannot find my camera battery charger at the moment:(

Super Sunday

Hi again,

It's been a few days since I have posted and our news is settling in. Actually it seems more surreal than anything else. I keep rolling it over in my mind - how did this happen? It doesn't usually turn out this way. I think that Hans' tumor simply has the mysterious feature of being responsive to therapy. If only all NB tumors had this feature. I also think we were on the 'opportunistic' side, and tried to maximize our treatment options for the specific features of Hans' tumor. I feel that while this may not qualify as an official miracle. It is our miracle.

We never would have been able to do this last 9 months of treatment without support. We thank everyone who has kept our Hans in their thoughts and prayers. We feel so deeply indebted to our friends, family, our Sparrow Club - the Highlanders for Hans, and to each and every family that donated miles to Careforce. We have already been able to make four trips to Philadelphia on donated miles. There at CHOP, the no. one Children's Hospital in the country, with the MIBG therapy, we have found a little bit of hope. This is the HOPE we have clung to like a life raft. The thing is that MIBG doesn't work for everyone. But, we thought it could for Hans. Two features of his tumor were indicative of that - it lit up when we did the MIBG scan (this said that the MIBG isotope knew how to find it). And, his tumor was in the bone, which is better for MIBG therapy compared to soft tissue.

Our next step is to try to keep it away. This is no small feat, no one knows how to do this with any confidence. In fact, relapsed NB is still considered 'incurable' even once you get rid of it. But, Dr. Maris has an interesting suggestion for us - he is going to try to put us on an oral chemo pill (ABT751) that will hopefully keep the beast at bay. But, this is an experimental drug now being tested for kids with active disease. He has to renew a contractual agreement with the drug co. to get Hans on it. Kevin and I feel pretty strongly that we should be following Dr. Maris' recommendations at this point. And, Dr. Maris and Dr. Russell work really well together, so we'll be able to do all of our local and follow up care and our endocrine stuff at TCH with the docs, nurses, staff and other families that we
all love and rely on...

Not to make this post too long - but, thanks to Gr. Kathy for coming down and for the gifts you showered on all of us! Have fun in PHX next! I think Elle and gr. Kathy had a ball without us. And thanks to Claudia Podowski and fam who has made a generous miles donation!

Happy Superbowl Sunday - don't eat too much today, haha... Hans is rooting for 'the red guys'!

Love, Lara