Slightly Improved

Just a quick update -
We are at the Ronald McDonald House this afternoon, having some down time before we head out for the Poconos tomorrow.

Dr. Maris reported that Hans' MIBG scan was Slightly Improved. There is just the one spot on the skull. It is a little bit more faint on the scan and a little smaller. We didn't really ask for percentages of how much fainter, how much smaller. The phrase of the day: "That's what we wanted, we're really happy with you, Hans." That's the scoop. So far, all of this time, Hans has been a Responder. He has pretty much always responded to therapy. We are really grateful for that. What more can we ask for? Other than, of course, complete and total healing for Hans and all of the other cancer kiddos...

Thanks for your ongoing thoughts and prayers for our boy. I'm visualizing that this spot is gone soon! Three rounds???

Next: we start Round 2 of MLN8237 today. We'll check labs weekly and we'll do a third round of the stuff and come back up for scans the week of Feb 8th. I'll try to move the bake sale up a week so I can actually bake for and work this next sale.

Happy New Year! Every day is an adventure. Every day is a gift.

Lara

Little News

I have a couple of birth announcements to make...

One is severely overdue, just because we were in the hospital at the time, and I wasn't on top of my game.
Kevin and I are the proud Uncle and Auntie to Hailey Marie Harvey, Born 10/19/09 to Kevin's sister Anna and her husband Matt. We can hardly wait to meet you, little one!

Our neighbor Michelle and good friend gave birth to Jace Bradley Nolen on Christmas Even. Welcome to the 'hood!

We had a very fun Christmas with lots of packages - Hans kept saying "This is the best Christmas Ever!" My mom left back to Seattle yesterday morning and
we are having a quiet weekend at home - just doing a little visiting, hitting the park, and Elle and I went to the mall last night (our gift cards were burning a hole in our pockets, I guess). Thanks to our friends and family who sent gifts to the kids. We could rake the yard this weekend- but I think it'll wait 'til we get back!

Hans is shedding a few hairs here and there, but nothing too severe yet.

I can't believe we already have to get back on a plane tomorrow for Philadelphia! They do like to make sure a new med is doing the trick, so Hans has another MIBG Wednesday - if it looks the same or better, we'll stay on MLN8237, if it looks any worse, we'll switch things up again. Kevin has to work Tuesday, so he's going to join us late Tuesday night. I am glad we are turning this trip into a vacation like we did back in June when we went to Harrisburg/Hershey Park. We are looking forward to our Snow Days. I do hope we have some good news as we take off to the Mountains!

I think that's about all I have to say - I was looking at our calendar, and I fear I might have to push the Valentine's Day Bake Sale up a week. I think we'll likely be back in PA for scans the week of the Feb 12th (our next sale), and I don't think I should try to have two sales in a row where I'm gone. I'll wait 'til I get scan dates, but I'm thinking of pushing it to February 4th or 5th. Any thoughts on a Thursday Bake Sale, over a Friday? We've always done them on Fridays...

Lara

Hans and Black...

Hans and his cat Black.

Hans is VERY into the Christmas spirit. Today we could get him to do just about anything if we said it was "for santa". We were all cleaning this morning, and at one point I found Hans on his hands and knees, scrubbing the floor for santa! He also picked up the sea of transformers from our study. Wow - some of those toys have rarely seen the inside of a toybox! Anything for Santa, right?

We had a GOOD day at clinic. It was realatively brief. We got labs.
HGB 11.1
ANC 1.76
Platelets 212

We are still holding. Also, I totally forgot to mention that Hans had a drop in Potassium and Phosphorous on Tuesday's labs. So, we started supplementing with Potassium capsules and today he's fine. I guess this is just something we'll have to watch for on the new med. I asked the docs how we take care of low phosphorous. Their answer: meat. Hans has already been self medicating for that little problem. He has been asking for A LOT of turkey dogs this week! Ugh. of course there are also the chickens, the bacon, the ribs and the salmon... look out livestock, Hans' phosphorous is low! Kevin makes a good short order cook, and at least Elle and I don't eat TOO much meat - kind of like a cap and trade thing going on at our house.

Merry Christmas...

Love, Lara, Kevin, Elle and Hans

"3 more nights!"

Hans is very good at counting backwards... He has been counting me down for years on meds. We start at 7 minutes, and go back. (For some reason, he doesn't require my mom or Kevin to do this backward counting, just mommy!)... He counts how many nights we have on a trip, or how many more nights daddy has to go to work, he and Elle have school. Lately, every morning, the first thing he tells his Grandma is how many more nights we have 'til Christmas. I have been pleasantly surprised that he isn't trying to sneak a peek at the presents piling under the tree, but waiting patiently for now three more nights. He is also doing a good job at giving this year. He happily handed out our little treat bags to about 30 docs, nurses, and staff yesterday. I was happy to see he was as willing to give as to receive. Last year, he wasn't feeling so hot at this time (he was just out of MIBG therapy and his chemistries had been knocked out of whack), and he didn't want to have much to do with handing out lanyards to all of the nurses, docs and staff. So, I was happy this year to see him running to each of his clinic buds and handing out treats and hugs.
It's also pretty incredible up there this time of year. Many former families - both angel and long term survivor - organize toy drives for the clinic. These days clinic looks like Toys R Us. It makes it fun for the kids who have to be there... Like yesterday - really, we were there ALL DAY, left the house by 9am, and didn't get home til 5:30pm. It's a job, really. Thanks to families like The Castillos, and Natalia's Crew who think of those still in the fight. Hans scored a very cute Astros Build a Bear Dog from Chloe's toy drive and yesterday he picked out a neat toy too, from Natalia and Drew's crews. It was fun to have Elle in tow at clinic - everyone was happy to get to see her, she helped Hans hand out bags. Everyone said she'd grown so much. She has! She's creeping up on me in height and is already taller than one of our favorite nurses:) Love ya, Randa! She's such a sweetie, she refused a toy yesterday, she wanted to make sure there were enough for all the other kids.

We went in for counts, an office visit and an appointment with our Endocrinologist, Dr. Jeha. Hans' Blood counts are still holding out:
HGB 10.9
Platelets 229
ANC 1500
All good - just a bit lower than last week. They never know how meds will hit each kid, but we had been prepared for transfusions, but so far we are not going there.
For Hans, we transfuse red blood cells at HGB 8.0 or lower, Platelets at 20 or lower, and we put him on restricted activity when ANC is less than 1000 (preventing risk of infection). Our doc yesterday said to be prepared for counts to drop a little lower on the next round, but we shall see! Hans still has his hair, but, we have been told to expect it to fall out towards the end of this round. Today is Day 14 of 21 of this round.

That's about it for now. We've been having fun and I think we're all set. We just have to run out and get the kids some snow pants, because we've decided to extend our next visit to PA by just a couple of days to go up to the Pocono Mountains for some snow days.

Lara

Cruising Along

Hi,
I just realized I hadn't posted in a bunch of days and some of you are probably wondering how Hans is fairing on his new med, MLN8237 or Millenium... So far so good. Hans is fine. His counts have been good. We've been to clinic twice this week and Hans' counts are great so far:
Monday/Wednesday app:
HGB 13.2/12.5
Platelets 288/258
ANC 2200/3200

He still has hair, but it is supposed to fall out by the end of this round.

Did I tell you this is an oral chemo that he'll take for 7 days (two capsules once a day) and then get 14 days off? We'll actually scan again in Philly before we start Round 2. So I just booked flights for scans 12/29 and 12/30. At least we are home for Christmas. We've all been chipping away at the to do list related to Christmas...we're getting there! I just need to order that Christmas Card. I guess it's good they do make the New Years Card for slackers like me!

Today Kevin got to go to Elle's science class and teach about rock types, fossils, etc. I actually got to see it this time. Kinda fun! It's been a joy having my mom here to help out...go to clinic, stay with Hans while I run around, run around while I stay with Hans. They went out on a cute little date - treated to lunch at Chili's by the teachers at her school. Thanks for the nice card, guys! Hans and my mom are cute together - today they made cookies for Santa and decorated a gingerbread house and are building a lego set together, too.

Sooo... that's about it. Elle finally got all of her projects completed and books read in time to make teacher gifts tonight - she wanted to make everybody Chocolate Covered Pretzels. She also made her famous green wreath cookies to take to the all-day class party tomorrow. I think I wrapped a 30 gifts today and made up little candy bags to have something to hand out to all the lovely ladies who take such good care of Hans up at clinic next week.

My mom and I got to go to Mom's Night Out with my group o' girlfriends plus Carmen's mom last night. I also had a pre-baby day of fun with Michelle for lunch and pedicures on Monday. Michelle's baby is due the 2nd (Kevin's birthday), but they usually come early, so we went out while we could. So, we really are doing okay!

Thanks for checking up on us!

Lara

Back

Hans and the decorated tree today

Today, at the tree farm
Coach Dean with the "Sweet Feets in Cleats" Team: Camryn, Cassie, Elle and Kennedy Saturday at the tournament

Seeing Santa Friday

Chase and Hans showing off their scars Wednesday
Elle and Kevin at Band Concert Friday

Me and my Aunt Pati in Philly Thursday

Tom Hans and Pati Thursday

Grandma Stephanie and Elle in Old Town Spring Last Week

Hans and Dr. Maris - Dr. Maris was informing Hans that he'd lose his hair on his next med Wednesday

Hans, on the flight on the way up Last Monday

Hey - We are back in TX. It's been a whirwind, so I'm very behind on my emails/phone/and posting. Most importantly, Hans is doing well. We hope to get rid of this spot of disease in one to three rounds. Rounds of this new med are 21 days. No one told us the spot should go away in one to three rounds - that's just me and my wishful thinking. I like to have a tangible outcome to visualize. He still has hair, his counts haven't dropped yet. The main side effect that he experiences with the med is a "mild Euphoria". He's a bit loopy/drunk. Hans has appts twice this week, and we expect counts to fall between Tuesday and Thursday, so, we'll be cautious this go-round, and keep him out this week. Stinks to miss so much - but it's NO FUN being admitted to hospital for fever when you are just fighting off some bug, so we'll see how this round goes, and make some plans for getting him back to Glen Loch in January!

We made it home Thursday. It was cool - we flew Southwest for a change. They were VERY flexible and didn't charge any last minute change fees. I LUV that. We had a change of planes in Nashville and were the last to board. SW flight attendants are allowed to express their personalities more than on most airlines. The flight attendant asked Hans' name, and as we found our seats in the last row, he was commenting over the loud speaker on Hans and his gorgeous hair. He told everyone that it was Hans' real hair. All the way down the aisle, I was just thinking it was about to fall out:( Hans covered his head with both arms (he's shy about the comments he ALWAYS gets about his hair), like he was averting the paparazzi.

My Aunt Pati and Tom were vacationing in DC last week. They made their way to see us, pick us up from our last day at clinic, take us to lunch and get us to the airport. It was fun to have a ride from family! We loved seeing them!!! Thanks for making the day of it!

Since we got back (late Thursday) we have accomplished quite a bit -
- Totally missed a lanyard workshop at Tamiko's House on Thursday - but I'm sure Vickie and Tamiko had a great time.
- We made it back just in time for Elle's debut band concert with her clarinet!
We met her band teacher who seemed tres pleased with her musical beginnings. So are we:)
- We actually got Hans and Elle to see Santa. Hans is a little moody about certain outings - but, in the end, we somehow played our cards just right and Hans hopped up there. He brought a transformers brochure with him so Santa would be perfectly clear as to what Hans was thinking!
- Then, Friday night - Hans and I gave Kevin a big hair cut. We actually braided his hair in a dozen ten-inch braid. Hans chopped them off. We'll send them in to Locks of Love. Kevin didn't want Hans to be the only one to lose his locks!
- Yesterday we hit FIVE of Elle's games. I haven't mentioned that right now Volleyball and Soccer overlap (chaos!) so we had an AM volleyball game followed by the four soccer game that made up her 3 v 3 Tournament. It was quite a Mudfest - but her team - "Sweet Feets in Cleats" - took second place for best name. Fun, but cold day.
- Last night we partied in our neighborhood with a progressive dinner. I honestly wasn't sure I'd be up for it, but it was fun to be festive with the neighbors. We have a neat block!
Finally, - today we went out to The Red Caboose Farm to cut down our Christmas tree. Hans was on a mission to get it decorated. He got the job done. He was focused!

My mom is able to stick around for another week. Hans is doing well right now, but the chemo typically gets to you in days 7 - 10, so we are bracing to see how it will hit him. Hopefully it'll be OK!

Okay - not that I got all of that down, here are finally a few pics. Did I ever tell you that I actually did get Hans to the Liberty Bell this last time?? But, he wasn't in the mood for a pic, so you'll just have to trust me on that.

Lara

On a New Trial!

Hans is now on the Aurora Kinase Inhibitor, a Phase II trial. I'll post a little more about it when I can put something competent together - it has been a long day, but dare I say, a good day.

Hans' bone Marrows and CT scans came back CLEAR! Alleluia! I was very happy about this - I had been bracing myself for worse news. We got the news this morning, and then found out the ALK study was temporarily closed today. We were hot to trot to get Hans on a med. We are not fans of leaving NB unchecked for long. We went with Dr. Maris' recommendation of this Aurora Kinase Trial. It's an oral chemo, he'll take it 7 days on, 14 days off much like the ABT. But, it'll be a little different, it's more of a counts suppressant than the ABT. He'll lose his hair and be at risk for blood transfusions:( Hans and I were both in tears over this today! It's just such lovely hair. But, Dr. Maris was cute, he explained that it'll grow back, but that his own hair wasn't coming back;) Hans should also be able to go to a lot of school, he just may have to miss a little more for treatment or stay home for home-bound work with low counts.

From Day 1 it looks like Hans might have some fun side effects on this drug, but I'm going to hold off writing about them 'til I see them in action for a couple of days. Mood-wise, I think it's going to beat ABT.

We were lucky enough to be at the RMH for it's annual Share a Night Christmas party and lighting ceremony. It was beautiful. They light one light for every donation they get throughout the year and the result is impressive. I got a few pics, but have no idea how they'll turn out. Hans has befriended a cool little boy named Chase, also 6, also facing relapsed NB. It was fun to see the kindred spirits playing together tonight.

In more good news, we get to go home TOMORROW! I'm ready for our little family to be reunited! I miss my girl, and Hans misses his dog. We both miss Kev. Luckily, my mom is still there too, helping get Elle to and from her one million adventures and commitments. I swear, she seems as busy as you'd think an 11th grader might be! She has had a ton of homework and projects due. At this rate, what will 11th grade be like - she's only in 5th???

I'd like to thank everyone for their thoughts and prayers. Thanks for the encouraging calls, texts and emails. And thanks to my girlfriends Aimee and Tracy for care packages sent to RMH. Hans was SO excited to receive packages here!

Monday

Hi,
Wanted to let everyone know that Hans was able to go ahead with the Bone Marrow procedure today. Yuck. Bone Marrow days are never fun days, but, we got one more thing checked off the list. I'm glad he was able to do it and hopefully it is going to come back Negative. Dr. Maris actually suggested that he thought it would. I have been having this fantasy that the "spot" on his head was actually shampoo or conditioner. (One time we got a false positive the day of the test because he hadn't washed soap off his hands well enough. The image came back fine as soon as he went back and washed and rinsed his hands well.) But that's all in my head, I'm pretty sure. Dr. Maris seemed pretty confident that it lit up with tumor activity. I guess we'll know more Wednesday. Tomorrow's CT results along with BMA results will be discussed on Wednesday morning. Then, we might start a new study Thursday and Friday. I should know then when I can book our return trip (Friday or Saturday). It has only been a week, but we are ready to go HOME. I guess we're on the down hill slide, hu?

Lara

PS I didn't think to bring my camera cord, but you can copy/paste this link to check out our PRMH. It's pretty cool. www.philarmh.org

Also - you can copy/paste this link to read a little bit more about Dr. Maris. He's a true Physician/Scientist http://stokes.chop.edu/programs/maris/

Bake Sale Results

"It'll be a great day when Education gets all the money it wants and the Air Force has to hold a Bake Sale to buy Bombers." - author unknown

Substitute Pediatric Cancer Research for Education above and it works for me today. I guess I saw this bumper sticker enough in my youth (I think it was pretty big in the early '80's, esp. on Volkswagens) for it to make an impact.

Well, since Pediatric Cancer Research funding falls far short of getting everything it wants, we shall hold bake sales. I want to thank my friends and family, the 'bake sale goddesses', as I think of them, who bake their buns off for a cause. We had a good bake sale with a total of $1922 raised for the CNCF. Not bad for a day when I'm totally out of state and we had a rare Houston Snow Storm. Thanks to my mom (Grandma Stephanie) and Michelle who staffed the sale all day, and to Mayada and Shannon who were able to work as well. Thanks to the dozens of bakers that made this sale a success! I appreciate it! We sold almost everything we had. So, I think the key to success is retaining our bakers and recruiting new ones.

The next TCH Bake Sale is already all set for February 12, 2010. I can't believe this will already be our third annual Valentine's Day Bake Sale at TCH. I just crunched some numbers and it looks like we did about $8,200 in bake sale sales in 2009, and $7,200 in 2008.

In a Hans update - we are doing okay! Hans is okay. His cold is getting a little better, I think. He still has a bit of a cough, but I'll hope he'll be okay for the Bone Marrow Procedure tomorrow, esp since it is a much shorter sedation then the MRI would have been. We have moved to the Philadelphia Ronald McDonald House. It is pretty sweet to be here. The rooms are actually bigger than the Sheraton, there is free food, cheap rent, and all kinds of perks! We've actually had to go out and do a little shopping b/c we had only prepared for a three night stay. But, that was alright with me. The downtown Macy's here is really pretty at Christmas time, so nobody had to twist my arm to get me to go. Friday I actually got my haircut. Before the appointment we all got out for some sightseeing. Yesterday we got to see the Philadelphia Flyers vs. the Washington Capitals (NHL). We tried to pack in some fun before Kevin left today. Hans did pretty well saying going bye to his daddy today. He's pretty incredible and is handling all of this remarkably well. It suddenly got pretty cold here, and we had some snow last night. It's actually a little prohibitive for on-foot sight seeing, but we've got some good books and we're on the "Mansion" side of the RMH, and it's actually a nice big room with a view!


I'll update more on Elle another day. She has A LOT going on - my mom has been working hard keeping up with her. A lot goes into raising a fabulous girl!

Lara

Changing Things Up

We got some unfortunate news today. Hans' MIBG showed a new smallish spot on his skull. Hans has relapsed for a second time with Neuroblastoma. Surprisingly, the problem area was no where near his arm, which was negative for disease. Hans was unable to go ahead with the MRI today due to his congestion. So - we have no idea if it would show changes or not. So, the right arm is moving to the back burner.

We are working out a new plan. Hans and I will stay in Philadelphia through most of next week. We'll get bone marrows and a head CT (currently the thinking is the tumor is only involved in the skull, but a head CT will reveal if it is actually in the brain). We are also going to try to get a sample of Hans' tumor that has been preserved from his tumor resection in January of 2007. They'll look to see if Hans' tumor has a mutation to the ALK gene. There is a new clinical trial open with a drug that inhibits this gene and is potentially very exciting for controlling NB among kids who have that genetic mutation. We may put him on that trial, before we even get the results of the test.

It is upsetting to get this news. It just plain sucks. We'd love to have been "the ones" that stayed in a second remission until Hans turned 85. But, we're gonna keep trying! As Dr. Maris and his team said today, it is an exciting time for Neuroblastoma research. We can look to the new drugs with the hope that one of them will crack the code on this ugly disease. We continue to hope and pray that Hans and the other kids battling NB and specifically relapsed NB will benefit from breakthrough research. Yet, it is wildly optimistic to think that everything will be okay. But, thankfully, we can be wildly optimistic.

I'd like to thank all of our family and friends who help us with our grass roots fundraising efforts for research dollars through the bake sales and the lanyard project. It is vitally important to us that we feel we're not taking this lying down. I strongly believe that each of us can do something to make a difference in issues that are important to us. Through bake sales and beading projects, even families like ours, that don't know when we'll even be home for sure, can chip away at the problem. Can affect change. But they'd be pretty meager projects if we were doing them all on our own. So we thank you. The giving trees and lunch for life are temporarily on hold, but you can always donate to the CNCF to promote this important research at www.nbhope.org.

Lara

From Philly

Hi From Philly -
So far we've had a totally relaxing and non-stressful trip. It was off to a good start, we had our first Corporate Angel Network Flight. I had thought we didn't qualify for those flights or something, but I went ahead and registered with them, and got a flight on Monday. It was a pretty cool experience to fly on a little 8 seater. It was cute - the copilot was also our flight attendant. Hans has become a pretty pro traveler and he kinda acted like we flew like that all the time. It was sweet of the company to sponsor us a car from an airport near NY to Philly. It was definitely a relaxing, non-stressful way to fly! No airport or security, no lines, and we didn't touch our bags from the time we put them in our car 'til we got to the hotel lobby. Fun, but I best not get used to it! It's just cool that someone thought of Corporate Angel Network. They seemed genuinely pleased to be helping out.

Things are going well so far. Hans had his MIBG injection, labs and an Echo today. Tomorrow we have a BIG day of MRI, MIBG and an office visit. Hans came down with a cold over the weekend, so he has got a rough cough and a little bit of drainage. Kevin and I have been worried that they wouldn't want to sedate him with all of this going on, but we stopped by sedation and they thought he'd be okay. Hooray.

Tonight we'll hit Hans' favorite University City restaurant for chips and salsa and "cow steak" for Hans.

Thank you for your thoughts and prayers for these scan results and for our sweet boy.

Every day is an Adventure. Every day is a gift.

Lara