Didn't Make Counts x 2

Hi -
Sooo, we didn't make counts again! We are closer... ANC is up to 570, HGB steady at 12.1, and Plts were pretty good in the 180's. I guess the take home point is that we don't want to hit him when he's down. We don't really understand why the counts are taking a bigger hit this go-round. Maybe a bit of a cold bug is bogging down the ANC? Maybe something more sinister? Who knows. We actually had to go back into TCH today for some labs they forgot to draw on Tuesday. Argh. I was trying to stay positive/keep it in perspective... it's about an extra 4 hours for us - compared to just being able to get them drawn right here! I think as a parent of a child with a life threatening illness - you're really in a weird space mentally. I find my 'self-talk' really walks the line of half-empty/half-full...
Everytime a problem crops up you think,
oh but we were going to ...
Hit the pool
Go to Pump it Up
Squeeze in another playdate with a pal before our trip
whatever, anything, just have a day that relatively approximates "normal"...
BUT THEN, at the same time your mind reassures itself...
But, at least he is here to get labs drawn,
at least he doesn't need a transfusion,
at least he doesn't have a fever,
at least we have health insurance,
at least we are able to get him what he needs,
at least he is sweet, and gorgeous, and 7.

Ah well, I guess I need to get a list of the labs to be drawn the week we start a round and make sure that we do in fact get them. (It was Bilirubin and ALT that were missed and I had no clue those were prereq's of starting the next round, but now I do!)

Hans really seems to be okay. We've gone out and done a few things this week... playdates with old pals - we met Adrian and Morgan's new kitties on Wednesday, and took Michael and Ryan for a swim yesterday. I was raising my eyebrows when Hans said he was ready to go home at about 45 minutes... that's unusual.

Also, a big deal this week is that we wrapped up our summer session of Home School. Our wonderful Ms. Lisa lovingly dedicated about a dozen sessions to Hans this summer. She has just about brought him up to speed. I can't believe the remarkable fact that a Title One Reading Interventionist lives across the street from us, and volunteered up a special part of her summer for Hans and his reading! Wonderful!


Kevin and Hans - we just pulled out our old popcorn popper. Hans has been asking for "cheese salt" for popcorn for about a week. I finally managed to bring it home from the grocery store tonight. Simple pleasures...

Lisa's incoming Kindergartener Ivory - in her end-of-summer-session reading performance at our house today.

Hans - in his end-of-summer-session reading performance at our house today.

Didn't Make Counts x 1

Hi,
Just got back from TCH. We had some mixed news. Some counts look great - HGB 12.1,
Platelets were okay at 138, but then, whoa, ANC was a mere 250! So - no chemo for Hans, today. We'll go ahead and go back in on Friday to see what happens.

The thing is, I am almost thinking he could use a few days of a break before he takes another hit.

We miss our girl! I know she's having a ball. She spent several days with Grandma Kathy, even worked a shift at the farmer's market in her grandma's jewelery booth. Now she is with Auntie Anna, Uncle Matt and two adorable cousins Emma and Hailey.

Lara

Oh, yeah, I'm still working on this site. I'm not done adding families. These are some of the stories I follow. I mostly follow some kiddos who have relapsed, and some angels! My many many pals who are doing well and are "survivors" just don't post so much these days - which is a good thing, I think.

Disclaimer:
Please let me know if I've linked your child's blog and you'd rather I didn't! I'll happily remove the link. Likewise, please let me know if you'd like your child to be linked here if he/she is "also in the fight against relapse." This is by no means a comprehensive list, it's just some of the many kids stories I've taken to... So many little souls to pray for... so many families... so many lives in the balance. They are each extraordinary.

And the Winner is...

I am pleased to announce that the winner of the NB HOPE 5K Fun Run/Walk T-Shirt design contest is our very own:
ELLE CADY WEBERLING!

We had a lot of fabulous entries to choose from. The final decision was made by the graphic artist. I sure thank everyone who took the time to submit an entry. We are going to try to get those up on the run website, I think! We must have had 20 - 30 entries. I wish I could upload an image of the shirt, but I'm not quite sure I'm able to do that.

If you can't get here to the run, and you'd like a shirt, they are available for a Ten Dollar (or more) donation to the CNCF plus $2 shipping and handling. Just let me know how many you want, what sizes, and let me know by Aug 10, 2010. We have to get our order in by then.

So, Let me know by leaving a comment here, or by emailing me at: kevinandlara@hotmail.com

To say that we started painting the little bathroom this weekend should indicate that we were not quite frolicking out and about in the sun and waves! Hans has had a few headaches and curiously vomited one time this weekend. You may recall that with Hans' Adrenal Insufficiency, two good vomiting sessions usually throw his electrolytes out of whack enough to require about 24 hours of fluids (inpatient!) So - at least it didn't go that way! Thanks for the love.

Lara

New Look

Hi - I have been wanting to play around with a new look and I finally took advantage of Blogger's new templates. Hope this is easy to read, let me know if you have some suggestions! The next thing I want to do is make a link list of a lot of the other NB kids blogs/pages I read..



We got done getting blood. It was all day. Hans zonked out shortly after getting Benadryl. It was no fun, but it is over! The benefit was that I at least knew to pack for a long day before leaving the house. Hans was a super sport until he woke up from his nap. He asked how much longer we had - and I told him the truth, about two hours (his blood transfuses over 3 hours). He had a moment. But, as usual for him, he did better than I did! We are enjoying today. It is lovely. Hans is all souped up - the little Vamp! He was looking like a little ghost yesterday. I asked him how it feels to get blood, he said GOOD. I can imagine. He actually read as low as 6.2 yesterday by the time we got to TCH. We go back in on Tuesday where we shall just see if we make counts and are deemed fit to start a new round o MLN8237.

Check out the new lanyard page where you can order a lanyard, book a workshop, start beading for us from afar, finding homes for lanyards, donate beads, etc etc. NB Lanyard Link I applaud Vickie for her extraordinary efforts on this project! I think I am taking the summer off lanyards myself. Slacker!

Bag o Blood

Shoot - I thought we were getting away without these by the skin of our noses. But, no, we discovered with a local lab draw this morning, that Hans' Hemoglobin is a mere 7.3...so, transfuse we shall. Bummer.

But - I wanted to give a little shout out to all of the donors in the world who offer up their very lifeblood on a regular basis! Thanks to those of you who are willing and able to 'commit for life' - someone is saving our boy today!

It has been about a year and a half since Hans has needed a transfusion. It's certainly a mixed bag of emotions, and not the direction we want to be going... we wanted to do tutoring, swimming and make about a dozen calls to run sponsors today! What are ya gonna do?

At least Elle has safely landed in Seattle and in the span of less than 12 hours has already soaked up love from family members across 4 generations!

Fried...

The Monkeys...in action at clinic.

Hans looking for his hat, thrown onto a high ledge by that pesky sis. (He loves this hat. We had a neat trip to Home Depot a couple months ago where one crew member took to hans. He came up and placed this hat on his head and Hans has worn it almost every day since. The guy said he was a resident in pediatric oncology and really made a connection with Hans. Also note the gold chain. Part of his everyday look.

The newly painted room!

Elle and her pal Genna treated themselves to a mani/pedi last week.

So, Hans was apparently hit pretty hard with this last round of chemo. We were so glad that we didn't take up Kids Unlimited on their offer of a free trip to Fiesta Texas (an amusement park) in San Antonio (about a three hour drive from us). But - it was sure nice they asked. We just pretty much laid low. Hans was a little fried looking! He had those deepset dark chemo eyes, low energy, low appetite. He was eating much and wasn't talking much. We finally realized he had a couple of mouth sores:( Mouth sores are a noted side effect of MLN8237, but it's just been a bullet we've dodged til now. We are kind of taking a good wallop from the upped dose. This is now the third round of 60mg instead of 50. I think we all wish we could go back to 50. I guess we just have to hope Hansie grows into this dose. Or, I hope the extra 10mg can mop up those stinkin' stubborn tumor cells. UGH. We just returned from TCH where we learned Hans has a whopping 7.9 HGB, platelets at 60 something and an ANC that is a mystery (not back yet). Yuck. Poor kid is taking a while to recover. This is already Day 14 of this past round:(

Whilst Hans wasn't feeling so hot/kickin back, takin it easy with Kev - Elle and I decided to PAINT! She's about to be shipped off ahead of us to Seattle, but we took this weekend to go turn her room into a tween dream. We painted in Purple, silver and chalkboard paint for a graffiti wall. It feels good to be done. But, now I look around and realize that ALL the OTHER rooms in this house could use a fresh coat. Maybe that's what we'll do with each of Hans' rough weekends...paint. Sounds like a nice idea, I'm just not sure if I'm that productive! I'm a little sore from just the one room...

Thanks for checking up on us. We'll get his counts rechecked on Thursday morning. We'll hope that we can avoid a transfusion and that they start to rebound...

Lara

Happy Birthday!

It's Hans' birthday today! A these milestones I can't help but spend a little bit of time wondering at all that he has been through. Sometimes I look at a picture from when he was three just before diagnosis and it hits me for a second. Why? What would his little life have been like if this had never happened? But then, just as soon as that question hits you, you realize -- why not? I still have days I wake up and think - is this real? Does my kid have cancer? Do I really live in Texas? Yes, yes, yes.

All I can say is this. Hans is a little bit of a bad a**! You can tell even at a mere 7 years old and only 42", 39 lbs. He's tough. I guess it's critically important for him to be so tough. He hasn't had a day off treatment in 3 years and 9 months. He's beaten the cancer back twice and we are under the powerful thinking that the third time will be the charm.

Hans is sassy and very determined to do things how he wants, when he wants! But he also has a kind and loving streak. He's loyal to his friends, family and animals. He'll never complain about the side effects that keep him out of many of the normal activities of boyhood. And, he's about the cuddliest, sweetest, lovingest 7-yr-old boy I've ever met (when I'm still in jammies). I think it's his sassy bad-boy side that gets him through the rigors of his treatment. He's not the only pedi-cancer pt. who has a wild attitude. I think it serves them all well.

Obviously, we feel so fortunate to be his parents. Hans is a trip. Kevin will say after giving Hans a kiss on his big bald head, "Not everybody gets to do this." We get to show this kid a lot of love. And in return he gives us an entire world of love. And the trust he has in us, and in his team, is remarkable.

I feel both proud of him and scared for him. I'm proud of him for offering himself up to science in the name of multiple clinical trials. Without a word of complaint, his contribution is not only for his own benefit, but he's testing out these meds to help save kids in the future. I'm scared that we can't ever know what trial will be best for him and that we essentially have to take a shot in the dark. I'm scared we don't know the toll the years of meds will take on him, but we know it's better than the alternative - of letting the tumor have its way with him.

Thanks for following us on this wild ride. Thanks for the positive thoughts, vibes and prayers. I hope we continue to benefit from them for many happy returns.


Lara

Home again

(Not) too cool for sparklers!

Hans' Bday Cake

Bday party

Hans and Kevin in Chuck E cheese's New ticket blaster

The four of us at the conference. Pic taken by angel Daxton's lovely parents (thanks)


We are home. We are just a little wiped out after that trip, but we are good!

Poor Hans had a little episode on Thursday. We were all supposed to leave and he just didn't want to/flat out refused. It was almost like he was having a bit of a panic attack. He'd never done anything like that before (with airplanes) And, of course, with his adrenal problems, we don't like to put him on the plane if he's going to have some kind of event/episode. We'd hate to have to land the plane. We literally flipped a coin. I headed out to the conference with Elle, and Kevin and Hans stayed home! But, Kevin quickly started to work him up to it, and they were able to join us for the second night. What drama! Kevin's take on it was that Hans had caught wind that he was heading out to an NB conference, and that was simply not his idea of a good time. How much medical travel ought to be expected of him anyway??? We don't know! We're just glad he got on board.

Wow - we saw so much - some of the talks we'd actually seen before, were familiar with the materials, and some we'd only heard of, and a few things we'd never even caught wind of. In my humble opinion - there are a few take home points:

1. If your child has NB and you can get a sample of his or her tumor to Dr. Maris/Dr. Mosse at CHOP, do so! They can test your tumor for the ALK gene mutation. If the ALK mutation is present, the ALK trial might be recommended in the event of relapse.
If you have any power to do so, request that your child's tumor samples be FROZEN, rather than stored in paraffin.
Right now, Hans has the dilemma of not having a tumor big enough to test (they can't get a sample out of bony disease), and they saved his original tumor in paraffin at TCH and are currently working on a test to check for the mutation in paraffin, but it isn't ready yet. They also say that the biology of the tumor can change b/w original diagnosis and relapse.

2. If you can get a sample of your tumor sent to Dr. Sholler in VT for her biology study, that might be a good idea as well! She's been growing cell lines of individual tumors to test which chemotherapy agents are best for your child. It's pretty cool. Again, Hans' tumor doesn't qualify for that test.

3. The Immunotherapy agents 3F8's are now available for refractory patients right here in Houston! This is exciting, because these had only been previously available in Hong Kong and New York. So, if your child has disease that never went away in front line therapy, you now have a more local option for 3F8 therapy, in Houston, at MD Anderson with Dr. Peter Zage.

Other things docs are working on out there - combing MIBG therapy with Transplant, using donor stem cells in relapse (usually sibling), and for the first time ever on the history of the planet Earth - they are using an Oncolytic Virus on human children with NB. They present a virus that attacks the tumor only. It has been found to be safe, but they are only now enrolling the third child on the Seneca Valley Virus Trial.

Kevin and I continue to hear about two trials that we think might be worth trying if/when we ever have to change trials: ALK inhibitor, and Fenretinide. We remain curious about 3F8's and possibly even radiation or a second MIBG therapy. But, for now I think we are happy to see where the MLN takes us. We learned in Dr. Mosse's presentation that MLN8237 has been shown to have an even better synergistic effect if it is combined with other chemotherapy agents such as Irinotecan/Temodor (which has already worked for Hans!). The thing is, we don't know if he'll ever be able to benefit from the combined drug since he is now on the trial for taking the single agent drug.

I guess the conference left me with a couple of thoughts. There is a lot going on in NB research. A lot more than there was for such a rare disease (app 700 kids in US diagnosed w/ it) about 10 - 15 years ago. I believe that there is hope that some of these kids relapsing today will be 'salvaged'. There is even greater hope for the kids diagnosed tomorrow. I am so proud of Pat Tallungan who founded the CNCF and brings these families and doctors together every year. Pat lost her son Nicky about 10 years ago and has been dedicated to making a change ever since. She's our hero. I believe that this conference not only informs parents, but, it must also be motivating to these docs out there to get solutions into these kids. Actually, there are NB parents pushing research forward all over the country/world. It's really amazing.
The best benefit to the conference is probably just meeting these other families!

off to the conference

We went in for labs Tuesday. Hans was cleared to start the next round of Millennium. Round 10 I think! He made counts/ but didn't leave too much wiggle room.
HGB only 9.5 (at least it bounced up without a transfusion)! ANC 1200, and platelets over 200. I don't like it that he's not starting out a little higher - but at least we are starting right? Hans had a b'day party at Chuck E Cheese on Monday night. I'm pretty sure he was on top of the world.

Hans is feeling great. He keeps bringing me back to the pool so he can use his new snorkel set (thanks for the great b'day gift, Dana!) He even wants to squeeze in a trip to the pool if we've only got 30 minutes. It's adorable.

We are off to the Children's Neuroblastoma Cancer Foundation Conference later today - all of us. It should be a really great and informative time.

I'm sorry I haven't posted any pics lately. Don't seem to have it all together! Soon??

Thanks for checking up on us. Lara

Hello -

Hey there,

Just another little update. I got the official read on the scans - STABLE. It is so ironic and kinda sad that I am slightly disappointed to get a stable scan. I keep hoping this thing will just disappear. I guess I'll keep hoping and we'll keep praying that it doesn't start going in the opposite direction. Must remind myself: Stable Is Good!

Got bummer counts on Friday. Yikes. HGB of 7.9 and to my great surprise they allowed us to wait and see if they climb back up over the holiday weekend before a red blood cell transfusion. I guess that's good. We'll check again on Tuesday and sooner if need be. More laying low for Hans in the meantime.

I got some news - more work! We're not supposed to "blog" about our work with the Census, but I think it is okay to say that I did get another case load! So - back to figuring out the whole work/life balance thing. It's all good! I'm just going to try to knock out all of my cases before I leave for Seattle - and yes, PL, I'm coming up just haven't managed to get those tickets picked out yet!!! We just don't know if Kevin can swing it - these Philly trips tend to absorb the majority of his annual vacation days:(

Okay - that's it for now.
Be safe!
Be happy!
Go see some fireworks.

Lara