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