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

Happy Thanksgiving

Happy Thanksgiving Weekend.

We sure realize how much we've got to be thankful for. Yesterday we enjoyed our least-medical thanksgiving of the past four. Our biggest thanks is that all four of us are here! It was a peaceful and relaxing day. We cooked and ate enough food to enjoy for a week. Kevin is getting good at cooking the "turkey dog", as Hans likes to call it.

My mom flies in today to help us out with Elle while we travel to Philly for scans.
We'll all get to spend a few days together on either end of her visit. She'll spend most of her time taxiing Elle to and from her various events, but they'll squeeze in some fun, too. I think we'll go to the tree farm tomorrow and if we are up for an adventure on Sunday, we'll hit the zoo. Hans would love to turn this place into a zoo... He's always telling us that we need to get a panda, plant some bamboo, and get a giraffe to keep the pine needles off the roof, and get a pool, to a put a dolphin in so that Hans can hang onto it and swim... oh, and an elephant to clean the hot tub with his trunk. I'm sure it wouldn't be legal, but pretty fun. But, I've got my hands full enough with two kids, three cats and a dog;)

Take it easy. Don't spend too much money out there! I know I'm getting into the holiday spending mood, for sure.

Lara

For Fun

Here are a couple of pics for a joyously 'normal' weekend...I could get used to this! Hans complained VERY little about his arm and is doing pretty well...

Elle and Hans...ahhh how sweet! I've been try to catch a good pic for the Christmas Card - that's a great yearly challenge!
Here's Elle at New Moon Friday Night (We didn't go at Midnight on Thursday like a couple of crazy moms/girls we know!) It was better than the first movie, I thought.
I think we'll have to keep trying to get a good photo!

Congratulations to our friend Alex who hit his 5 year anniversary of Diagnosis:NB and is now celebrating Long Term Survivorship. Way to thrive, little bro! He had a blow out of a party with the best balloon animal guy I've ever seen, but, alas, I forgot my camera.

I enjoyed beading yesterday with a dozen or so ladies in Katy. Thanks to Katie, Carlie's Aunt for hosting a great workshop.

We were rained out for soccer this weekend, so I have no update to share there.

Hans has managed to chalk up a few more days "present" at school. Tomorrow we have a meeting to make arrangements for all of his "special needs" at school, i.e. Intermittent Homebound, etc. etc.

Lara

Hans' Arm - Recap

We've been throwing out so much information over the past 4 - 5 weeks, that I thought I'd do a little recap for you, for where we stand now.

A month ago Hans had such bad pain in his arm, the upper right humerus, and site of original relapse of 5/08, that we were admitted to the hospital for pain control for a week. Many tests were run. Some were negative for NB, some were suspicious but Inconclusive:

The Xray, the MRI and the Bone Scan each showed some abnormalities to the bone. The official MRI report did read "concerning for recurrence", However, the fact is that Hans sustained trauma to that arm at relapse. It was then radiated, and there are no post-treatment images of the area to compare against. We then got news from the CHOP team that the MRI looked like "treated tumor, not active tumor.

The MIBG, CT Scans, Needle Biopsy, and Urine Catecholamines were all negative for evidence of NB. Furthermore, clinically, Hans' arm pain improved.

We thought the option of an open bone biopsy was too risky for Hans, so for now we've held off on that diagnostic bit of evidence. Instead, we opted to do a wait-and-watch approach. We put Hans back on the ABT751, the oral chemo he has been on since February of 2009, after he once again became NED. The idea here is that a follow up MRI will be diagnostic for relapse. IF the MRI is unchanged or improved, we will assume this is not relapse. IF the MRI is worse or shows progressive concern, we will assume it is relapsed NB. The idea is that if Hans has relapsed on ABT 751 that he has become resistant to it, thus, being the aggressive and nasty cancer that it is, it would progress after another round of that same drug and six weeks time.

The thing is, if it is not NB, we are no closer to determining what it is or was! We may wish to reconsider the open biopsy at that point, or hear CHOP out for other options.

I hope this helps! It has been a roller coaster. Hans was going along fine and woke up screaming and crying in pain at midnight a month ago. Now appears to be fine. He dances around the house using crazy flailing windmill moves with both arms. We have never had to withstand such a long diagnostic process. I hardly know what to do with myself. I feel like I have ADD - I can't focus on anything. But, to tell you the truth, I have a good calm feeling about what the scans will reveal. My only concern is that they say they cannot compare the two scans because they are from two different machines/institutions. YET, each institution assures us it'll be just fine.

I'll keep you posted! We have plane tickets! This always feels like a major accomplishment - - I always feel such pressure in picking just the right flights and dates and times, trying to predict just the right amount of time to be on the ground in Philly. I don't know why it's intense for me, probably b/c it's costly and a big pain to try to change tickets after the fact...

Everyday is an Adventure, Everyday is a gift!
Lara

Falling into Place

So, things appear to be coming together a little bit.
Yesterday we got a few things squared away. We'll now be pushing our sans up two weeks. We'll be back in Philly for scans on Dec 1/Dec 2. They are going to add an MRI to the agenda. This will give us a perfect 6 week window from the first MRI so we can see if there are any changes. I'm a little worried that comparing scans from two different machines/institutions won't be 'Apples to Apples', but, I sure hope it'll be close enough! We are working out travel arrangements now. Kind of a headache. But, at least we have scan dates!

Oh, and we got an encouraging email from Dr. Maris a few days ago. He had reviewed the original MRI with the Radiologists at CHOP and they thought the findings were consistent with "treated tumor, not active tumor"! We're putting that in the Good News Column. We also got some other good news last week. Most Cancer Centers check and track the urine catecholamines HVA/VMA... They don't follow them at TCH, though, so Kevin and I don't really know how to interpret them for Hans. My understanding is that Dr. R. feels it's a flawed gauge of tumor activity - lots of things (like diet) can make the numbers go up, causing panic among parents. BUT, we did get ours done on order from CHOP his HVA is 8.3, normal is 2.1 to 23! his VMA is 3.3, the lowest it has ever been recorded. But, I guess, it was only 7.8 at diagnosis when he had the Nerf Football sized belly tumor! (normal range 1.7 to 6.5).

Hans started back at school today! I was pleasantly surprised that it wasn't a struggle. I think it helped get him in the spirit to go up to campus yesterday and meet with his new teacher, Ms. Latta. He's rolling with the punches better than I could have hoped. Ms. Latta seems like she'll be just wonderful. He seems ready to be reunited with his classmates.

Thanks to Morgan Klein's Girl Scout Troop for Beading for a Cause yesterday with the Lanyard Project! It's fun to see what the kids come up with. We are staying pretty busy around here. I'm going to another workshop at Carlie's Aunt's on Sunday. I still don't have many stocked up for the next bake sale. I can't hang on to them. We did one at Dana's last Friday - and everybody bought them for teacher gifts!

That's the latest - Today is a good day. Kevin is in Oklahoma for a meeting, but he was able to make it an up-and-back in just one day. That's the way Hans likes it. It's fun to hear him pronounce Oklahoma when he is protesting, "I don't like it when you hop on a plane and go to Oklahoma, just go to work in our town!" I think he's fine as long as he gets to fly home at night.

Up in the air...

We had a pretty busy weekend. Elle had a sleepover Friday night and was just a bit groggy on Saturday morning game. Saturday night I helped my friend Vicki celebrated her b'day in style! We had toooo much fun! Thanks, Vicki! Then, Sunday, Elle had another game and Hans made it out to Main Event for Adrian's birthday. I'm glad we were able to squeeze it all in.


We had a wild time - but all in good fun...Brenda, Marlene, Jessica, Dana, Vicki, Me, Carmen, and Angela. Look out, Houston! Ha ha...

Hans is pretty mellow this week. Yesterday we went out to the park and fed some ducks. It was pretty exciting - they were chasing him.

He was having just a touch of arm pain once again over the weekend, so we're asking the docs what we should do now. Thankfully, he is using the arm like normal. He is actually moving and grooving! Kevin and I always feel great relief when we look over and see him using his arm doing his expressive dance moves. I'll have to sneak a video of him one of these days...

Hans and Optimus...

Also, Hans is getting a new teacher this week. Mrs. Nusbaum will be staying home with Mia (who is doing pretty well, I understand!!!) and a new permanent teacher was hired to replace her and started yesterday. I have a meeting with her tomorrow. So, with any luck we'll work on getting Hans back to school on Thursday. Just seems like everything is up in the air. It's sort of hard to operate with everything up in the air - but we're plugging along.

Thanks for checking up on us.

Lara

Retraction...

Sorry - As soon as I posted that, there was a rectraction within just two days!
I guess Noah got more cards than he could even handle. So, thanks for your thoughts and efforts!!!

Lara

Call for Bakers and Volunteers!

Hi -
You've heard me talk about our Texas-Sized bake sales...Well, I wanted to invite everyone out there who wants to get involved in helping raise some $$$ for a cure the old fashioned way - by baking! Love to bake, but don't want to have all those temptations in the house??? I've got the sale for you! Want to roll up your sleeves and come spend a day at Texas Children's Hospital selling for a cure? Let me know!

Friday, December 4th, 2009 Texas Children's Hospital 10 am - 3pm.

What if you're not in the Houston Area? How about just doing a micro-bake sale??? Whip something up and leave it out in the Staff Lounge or Breakroom with a little donation box. Send in the proceeds to:
Children's Neuroblastoma Cancer Foundation
39651 Treasury Center
Chicago, IL 60694-9600

All baked good donations are appreciated! Thank you. Shoot me an email at:
kevinandlara@hotmail.com.

Thanks, Lara

PS - in other news, Hans just finished Round 12 of his ABT751, thank goodness! We are always pleased to get past Day 7. He is doing pretty well. We have a crazy weekend of one lanyard workshop, two soccer games and 3 birthday parties to attend.

Something Sweet We Can All Do...

I just became aware of a little boy named Noah who is likely losing his cancer fight in the near future. His request is to receive many many early Christmas Cards. It's such a sweet and simple request, I'm sure we can help to make that happen. If you wish, just drop a Christmas Card in the mail to:

Noah Biorkman

1141 Fountain View Circle

South Lyon, MI 48178

Here's a weblink to a site that tells a little more about the story.
Copy/paste, sorry:
http://www.mlive.com/news/detroit/index.ssf/2009/11/thousands_send_early_christmas.html

I'm sure putting this up on our blog will get a few more cards in the mail...Maybe even 20 or so from a third grade class in NM?

Hans is doing okay. Right now we are on alert - watching for clues that Hans is possibly suffering from what Elle had over the weekend...does it never end??? Ugh, So now we are keeping an even closer eye on him. Thanks to my brother, Tom, who got him an early Christmas gift of the newest Optimus Prime - he is busy today popping and slapping and transforming that guy into a semi. Fun, fun, fun! The gorgeous weather here has been getting Hans and I out and about to a new park each day - I can watch how he uses that arm. Looks good! He also is writing and coloring okay...

Lara

Weekend Update

For the first time in a while I have the luxury of giving you more of a normal update than a medical update. We are now on Day 4 of our oral chemo, and it seems to be going along pretty well. So far Hans is just a little bit moodier than usual, but not really too bad.

I've got both kids home today! Elle had a big start to the weekend. We had a fun mommy/daughter shopping spree on Friday night to get a handful of random things we needed. Then, Saturday am she and I set off to Athena's for the CNCF garage sale. It was on a smaller scale this Fall - I didn't even notify too many of my pals that it was coming up. So, we did $500. Not a record, but not too shabby...it's all for the good cause of funding research on NB. Then, in the afternoon we had a nail-biter of a game. Elle played Goalie the whole first half. Our defenders had to work way too hard and she didn't let one goal in! I was amazed by her. For some reason I just can't get over her being such a strong goalie! We held off this strong team, but lost by one, by a very unfortunate, accidental, own-goal on a penalty kick:( Then, by the time we got home from the game Saturday - she was DONE! She has some cold or something. She didn't really move from the couch all day Sunday. I hope it's not a flu. She's starting to look better, but we figured we'd keep her home from school today, and home from soccer tomorrow and she might be back to normal???

Kevin and I were able to get a couple of little house/yard projects done, which always feels like such a luxury after operating on 'hospital mode' for a while. Since Hans' arm is doing better - we are starting to let him resume a few of his normal activities. We just feel we can't let him ride his bike. A fall could really break it. Dr. Russell has explained to us that if he fractures it in the condition it's in, it may never heal. I guess they can't pin it the way it is. That's why it was so scary to go ahead with the open biopsy... there was a significant risk of fracture. We thought - if we aren't supposed to let him break it, we shouldn't let the surgeon break it either...

We are going to wait and see about school next week. We want to observe his arm while he's finishing this round of chemo and debate the school issue next week. School is so fabulous for him, and he loves it once he is up there. But, ever since diagnosis, he is pretty content to hang out at home! I don't think he's too troubled by the missed days.

Start Round 12

Today's counts looked "gorgeous". Hans just started Round 12 of ABT751.
Gotta run, but just wanted to let you know!

Tentative New Plan

Here are Hans' Picture Day Pics - Kindergarten Fall 2009, Age 6
His smile isn't super big - but I won't be takin' a gamble on retake day. I think they're great! If you click on the picture you can see it better and you can really see the pretty color of his eyes!

So - we have a rough new plan:

Recheck counts tomorrow (Hans' liver panel was a bit High last week, and it needs to be rechecked before he can do the next step. If that rings a bell, it was high back in February 2009 when Rotovirus really wiped him out!)

If he clears counts check, he'll go back on ABT 751 for a Round or Two, and then his next scans at CHOP will be pushed up just a little bit.

If his liver panel is still high, we don't have a plan! We'll be back to winging it.

While it is wonderful to have two competent Oncology Teams reviewing your child's case - I do think it introduces some Gridlock. It takes longer for info to be shared and to get answers. This has been about the longest diagnostic process we have been through - and we are just sort of moving on for the moment. Pretty scary big decisions that we are making. It's a little intense, so it's been hard for me to focus on anything else. The good news: Hans' arm is pretty great. We think it still bothers him a bit, but we think it's much better. We are now only giving him one pain pill at night.

We are enjoying some gorgeous weather here in TX. Nice break from heat, heat, heat!

Lara

Change of Plans

Well, we arrived at TCH with an apt for a biopsy and some lingering questions. The outcome was an impromptu team meeting and the current decision to postpone the Open Bone Biopsy. I know - that is a surprise! We had hoped to get some questions illuminated, and I guess our questions didn't necessarily "have" answers... We were also hoping for a greater confidence that the surgeon could go in and get what he needed while doing minimal damage. I guess we were under the impression that they only needed a very small sample, but the surgeon indicated needing a much larger (dime sized!) core sample...

Our next step is to see whether we are cleared to start back up with Round 12 of ABT 751 and go from there (like do a wait/watch with another round of MRI and Bone Scans in a little while...) Waiting for a response. In the mean time, Hans' arm has continued to show marked improvement. However, we have been instructed to keep Hans home from school, and to ensure that he does not injure it. That is, for the time being. We are trying to push through the process of getting Hans set up with Home bound instruction. But, everything is such a process... We are, I think, pretty bummed and confused. We feel no closer to the truth or an action plan to make Hans better. No closer to knowing if it is NB, some other thing, or what! We just in our hearts couldn't put him through a procedure that could hurt him. The docs left it up to us, so we made the best decision we could at the time.

Open Biopsy Today

Oh, gosh, I don't think I've even written to let you know the big open biopsy is today. I'm a little nervous about this one for some reason. I guess we have never had to have anything like this done. We are just trying to get through all of this one step at a time, but to be honest, it hasn't been very fun. Hope our little guy gets through it with minimal trauma, hope they find something ultimately treatable.

Thanks for any prayers, thoughts or good vibe you can send his way. His procedure is scheduled for noon Central Time.

Love, Lara

More Pictures

This is Hans Friday Night as Bumblebee... He doesn't like his picture taken at all anymore - what a pain! he doth protest! He had fun Friday night, but that was all the fun he needed - he stayed in and let Elle and her buddy shane do all the trick or treatin' Saturday night!

Shane and Elle

Elle, Morgan and Adrian Hans' head in forefront...

Kira, Clay, Joey, Cole, Ryan, Hans, Michael, Elle

Happy Halloween

Hello! Happy Halloween. As for us, we've had our share of scares this month! In fact, I think I'm a little overdosed on the whole Halloween gore decor. When we were first diagnosed in 2006, Hans hit TCH Oct 21st and was diagnosed the
25th with Stage IV High Risk NB. Halloween decor was everywhere throughout the backdrop of that experience. It was a little like the Twilight Zone to be back in it all over again - the same exact week, just three years later. When you are inpatient, you get wheeled everywhere for your scans by transport. We've had our fave transport guy "smooth ride" Sonny, hauling us through back alleys of the hospital, with the same spooky Halloween decor popping out at us in the hallways...'prepare for a scare', the signs say. No thanks, I'm preparing to be pleasantly surprised by our next findings! I'm ready for the skeletons to come down and the pilgrims and turkeys to go up.

Nonetheless, we are going trick or treating! Hans was rarin' to go to our local community shopping center last night, and he is going to hit the 'hood tonight. He is dressed up as Bumblebee (the transformer) and I was surprised that he was wearing his mask the whole time. He walked the whole night - which was more of a physical effort than he's been up for in a while, and he actually kept trying to hold his candy bag in his right hand. I had to keep correcting him. Elle, at 11, is totally into it. I'm pleasantly surprised by that. Both my kids are very discriminating candy eaters. I'll be able to pilfer quite a bit, and we can always bring the remainder to clinic.

Our friend Kelly lost her long hard battle with Breast Cancer this morning. I was able to visit with her and pray the rosary with her earlier in the week. I so admired her strength and determination. I have known her for at least four years, and she had been fighting her cancer longer than that. She didn't let treatment or diagnosis get in the way of her agenda. She has Homeschooled her boys Taylor, 10 and Blaze, 6 throughout her cancer experience. I'm praying for those boys right now as they transition into the next phase of their lives. Praying for Kelly, and her family, may she rest in peace.

Lara

Inconclusive

Wow - this is an interesting turn on this roller coaster. We have been harboring some secret hopes of a differential diagnosis - something along the lines of a bone infection - stories of which a handful of NB families have shared with us. But, since I have been getting such DIRE information from clinic - I didn't even put those hopes out on this blog, but we've held them close and we've been watching Hans' slight IMPROVEMENT in the use of his arm and his DECREASE in his need for pain meds, and we've been scratching our heads that this doesn't exactly reek of Recurrent NB, Part 2.

Yet, up until today, we've been told all signs point to NB. We were told on Tuesday that the pathologist was 100% sure it was a cancer/90% sure it was Neuroblastoma.

Today - we sat through an office visit with an incomplete pathology report. We debated open clinical trials, excited at the news that the Aurora A Kinase Inhibitor Phase II trial opened TODAY. We also debated a couple of other trials, and the benefit of starting therapy with a known effective therapy - such as Irinotecan/Temodor. Kevin and I had been asking about this Bone Infection theory - but we kept getting "NO" as the response.

And then, on the way home, the phone rang. The Pathologist had given up looking for cancers! No stains matched. Not Neuroblastoma, not Osteosarcoma, not Lymphoma. The samples did not indicate leukemia. A second opinion was sought by a Children's Oncology Group Pathologist. This pathologist noted that the cells in the sample were not dividing nearly fast enough to be an aggressive cancer such as Neuroblastoma! So - they are retracting their statement that this is 100% a cancer. The plan is to do an open biopsy and go from there. One possibility is that they are NB cells, but that they somehow got damaged in the process of obtaining the biopsy??? Anything could happen with this biopsy from: diagnosis Neuroblastoma, to some rare bone infection to: no known cause???? Wild. But, we'll take it!

Today Hans had a CT Scan and a Bone Scan. The CT was NORMAL. The Bone Scan appeared normal to the docs but hadn't been signed off by Radiology. That is - normal with the exception of the large right arm bone that lights up indicating the trouble we knew about it.

Well...that's where we sit. Don't know when we'd get in to do an Open Biopsy...don't know if we'll get the green light on starting back up with the next Round of ABT751... don't know what we'll find in a biopsy... don't know and for the moment don't care to know. I'll take the uncertainty and the hope that goes along with it.

Thanks for the prayers, and the love, the emails, texts, calls and everything. Thanks for the NB families that shared their crazy bone anomaly stories that have given us this hope.

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

Lara

Hanging...

Just got an email from Dr. Russell that the Pathologist won't finalize anything until tomorrow.

We did get a Bone Scan, and a CT scheduled for tomorrowas well as counts and an office visit. We think we're in line for an early Bone Marrow Biopsy on Monday.

I imagine I'll be able to post tomorrow evening with some news.

Lara

Unconfirmed

Hi,

So - we had a pretty rough appt with Dr. Russell today. At the time we saw her, she had contacted the Pathologist at the lab. At that point he had suspected NB at about a 90% confidence. He just hadn't confirmed it with a stain. We were to wait until 5pm for confirmation. I got off the phone with Dr. Russell a little while ago. She had received an email from the pathologist, saying that he was unable to confirm NB with a certain stain, but that he still suspected it, and would try again in the morning. The thing is - they are pretty sure that it is a cancer. The crazy thing it might be possible that Hans is suffering from something like Osteo Sarcoma or AML. If that is the case, Dr. Russell assured us we would treat with the intent to cure. Oh my goodness. What a rollercoaster. Don't even know what to pray for. That's it's all wrong - that somehow the "infiltrant" detected in Hans' Bone Marrow cannot, must not be a cancer.

Thank you for your thoughts and prayers now. We are waiting. I don't know if we will be informed of anything tomorrow. It's not usually much of a communication day in clinic. We are trying to get Hans scheduled for a CT and a bone scan and a Bone Marrow Biopsy. The thinking is, if this is indeed disease (which they think it is now), and it is no longer MIBG avid, we don't know how many areas are involved.

Monday

We have been home all weekend.

Hans has been staying here, taking it easy at home, with Daddy.

Elle and I have made it out and about a bit more. She had a good game on Saturday. She had a quick turn in goalie with one beautiful belly dive save. They didn't quite win, just lost by one, but that's not what it's all about, right?

We also made it out to Octoberfest at SSJ yesterday. Elle won third place in the costume contest for her age group. It doesn't hurt her odds that the total number of entrants in the 11-14 y.o. age group drops off a bit from the younger age groups. Here she is as A 50's Sock Hop Girl.

We have an office visit with Dr. Russell tomorrow mid-morning. Hopefully we'll have some results. Praying that this thing is somehow treatable!

Lara

Bone Biopsy

Hans went in for the Bone Biopsy at about 10am and was done by 11am. He had two hours of recovery and he is now back up in his room eating and playing. We are going to go home, pretty soon I think! Results due on Tuesday. Now we wait!

More thanks... thanks to Matilda for offering mass by Father Vincent in Hans' honor.
Thanks to the Naughton's and the Ford's for squiring Elle to and from soccer. That girl hasn't had to miss a beat. I went home and was happy to hang with her last night! Two more: Thanks to Carmen for taking care of Elle today, and to Nurse Natalie who dropped of some cool Transformer Walkie Talkies!

Lara

MIBG Negative

But, don't get too excited yet! We understand that about 20% of kids are not MIBG avid. Hans has always been MIBG avid, but it could just be that he is not MIBG avid all of a sudden??? So, the next step is a Bone Biopsy. We have never been through this and we don't know how hard it will be on Hans - they'll try to get him on the schedule for tomorrow.

We had great luck this morning with going for an early test. Not sure if I"m burning all our luck up yet - we'll see.

The Biopsy will take several days for a read - they have to decalcify the bone, and then get some cells on a slide. Possible outcomes include: Neuroblastoma, Infection, Secondary Malignancy, or...nothing (meaning they miss the problem in the biopsy). We were told it was rare, but if nothing comes back on the slide - they'd have to go in and do a more invasive surgical procedure. Wow-what a mess. So, here we sit... if we get in tomorrow, we wait til Monday or Tuesday for results. If we don't, we wait til Monday for the biopsy.

I believe we have a good shot of being sent home tomorrow, so long as Hans tolerates the procedure with no surprises (if we have it)! His arm has declined rapidly this week. He keeps it very stabilized (The MRI did detect a small fracture), and uses it very minimally. However, he has refused pain meds all day, and has only had two oral doses of the stuff since 9pm. Hans is a trip.

Thanks for the prayers. I know a lot of you are very concerned about Hans right now. I'm not sure if this falls into the category of good news, bad news, or odd news. He is being carefully considered. We are wrapping this boy up in all of our love.

Thanks to my girlfriends who sent Michelle down with a special care package today. It was sweet - Hans worked on the Lego Indiana Jones set all day! We have enough quarters for 40 nights in the hospital!!! My gosh, hope we are outta here tomorrow night anyway! Thanks to Mayada and Sarah for popping in on us and for a hug and flowers. It's so endearing to me - Hans has been around here a while now, (3 years to the day since he first hit the 9th floor!) and when the nurses and staff catch wind that he is on the floor, our old friends make their way around to say hi. Our nurse yesterday told me that a newer nurse said, "I'm just gonna have to come and meet this Hans everyone's talking about!"

Good night! Lara

MIBG this week

We got into the MIBG scan this week. Injection will be today and scan tomorrow. Some poor kid out there got his/her scanned bumped for us. I'm sorry for the drama that must have brought to their family; may that child enjoy beautiful clear scans next week!
The MIBG may confirm what we already suspect. Then we can have at it! We are keeping Dr. Maris' team at CHOP in the loop, so we want to make sure they are on board every step of the way.

Hans' pain is now pretty consistent. The docs are looking to find an effective oral pain med so that we can take care of him at home. It was useful to be here up until now, however, I believe it expedited us getting into the MRI and the MIBG in such a timely manner. I just don't like it when we use up all of our luck on Hospital Efficiency! I'd prefer we saved some luck for Good Results.

Hangin' in there...
Lara

MRI Read...

Hans and Kevin not posing for me tonight!

Hans tonight watching his movie...

Discoloration and swelling at the sight of pain in upper right arm. While there are still a couple of possibilities, one possibility is a second recurrence of NB. Next, we will do an MIBG scan. if we have any luck, they will squeeze us in tomorrow. If not, we will wait have to wait until next week. Staying put at the hospital for now to control pain. Hans' pain seems like it is beginning to limit his range of motion - he's eating and drinking primarily with his left hand now.

If MIBG is positive, it means NB is back and we will treat as quickly and intelligently as possible, in consultation with CHOP. If MIBG is negative, then we will do a biopsy of the bone and go from there.

That's the scoop. We are watching the new Transformers movie, conveniently, it came out today on DVD.

Lara

MRI Complete - Awaiting results

We had a scheduling miracle this morning. Hans was first slotted for a 4:30 pm MRI with the possibility of being bumped into an earlier time. He was told to go without food or drink (NPO) all day in the event that he got moved up. I requested an earlier time - I just hate him having to go all day with out food with his history of Hypoglycemic episodes...But everyone just looked at me like I was crazy. In my mind, he should have a Gold Card in his pocket that says, "I can't go NPO long," but I'm sure all mommies feel that way! But, then, we got the news at 6am that they were going to take him first case. Yeah! If only our results will be so amazingly good.

He is already back, and eating and relaxing in the room. He turns into a bit of a grouchy bear after anesthesia (he had to be sedated with Propofal for the MRI) so I am getting him what he needs and giving him some space! Now we wait. I have no idea when a radiologist will review the study and when our docs will inform us of results. I just hope whatever it is it's very treatable.

He was pretty funny last night. Elle had a well child visit yesterday. Hans talked to her and got all the gory detailed of the three shots she needed for immunizations. He wanted to know how bad it hurt and where she got each shot! At least he's not the only one in our family getting all poked up.

Lara

Oh, My Baby

We are not getting off this rollercoaster yet. As soon as I post of good news/no problems, then things take a turn. Sunday we had a great day. Hans was low energy, but he helped me around the house and yard and we did some shopping while Kevin and Elle were cheering in Orange! (GO Dynamo.) Then, he was good all night until about 9:30 pm when he started to complain about arm pain. He is usually so stoic/tough/not a complainer, that we clearly knew something was wrong for Hans to have pain that made him actually cry. And, he is the one who finally made the decision to go in to the hospital. This is pretty unusual for him.

We got Elle to Michelle, and then hit the ER at midnight. They accessed Hans, gave him IV morphine, and the second dose actually got the pain finally under control. We did a second xray which looked unchanged from Thursday xray. We are now waiting in a relatively cushy/comfy 9th floor room for an MRI. I don't know if it'll be today or tomorrow, we haven't even seen the docs round on us yet. But, Hans' pain is under control and he is sitting up playing video games with his daddy.

Dodie, our Sparrow Clubs Rep, asked me to spread some news to you... If you are local and want to do something to help, you can go out and support the Sparrow Clubs Dinner for Hans tomorrow night Oct 20th from 4-11pm at Chili's. Branch Crossing 9th Grade Campus has adopted Hans as their sparrow child. The funds help to pay for Hans' treatments and our quarterly travels to CHOP. They are a lifesaver. So, if you are hungry tomorrow, and need to eat - go to CHILI"S in Sterling Ridge (Woodlands Pkwy and Kuykendahl) 10% of your order (dine in or take out) goes to Sparrows for Hans. Just ask for a flyer at the front. I tried to attach here - but it didn't work.

Thank you! I'll Keep you posted on what's happening here. I think we are looking at a couple of possibilities here: Recurrence? Bone Infection? Neuropathy? Some thing else? It's hard not to cringe when we see him hold that arm in the exact spot he relapsed the first time around.

Thanks for the love. Thanks for the thoughts and prayers. Thanks to Michelle for being on Elle duty this week. Thanks to Alana for helping out with Honey. Don't know how much longer we'll be here, but hopefully not tooo much longer!

Lara

In Action

Hi Guys,
Just a quick post to say that Elle rocked the talent show. It was so fun. I had some butterflies, but I don't think she did. She was one of twenty of the 600 kids at Wilkerson who "found a nerve", as the teacher MC said. She was one of two kids to rap, one of two kids to go without musical accompaniment. She had some moves. She got rousing applause. We had fun! I was also proud of my troop too! Our girls (ten total at the school) were totally overrepresented in the talent show - with 4 entries. It was cool! So I'm a proud mom and a proud former troop leader.

I hear E did well in her game with a good turn in goal as well as in the field. I hear she let no balls by on her watch and did 4 blocks, one being truly impressive! Thanks to the team manager, Shawn, who forwarded me this photo. I've been having tech. difficulties with my camera lately and haven't had much to post. Gotta get on that. Sorry.

I had a good day at the conference. All these Docs were nice enough to spend their Saturday with the parents. Athena and all the volunteers did a fabulous job! Pat with the CNCF is the best. Vickie is taking the lanyard thing through the roof! Check out this link if you want to see the President of the United States of America, Barack Obama, talk about both my friend Erin B, and lanyards! Forward to min 26:30
http://c-span.com/Watch/Media/2009/10/16/HP/R/2436/Pres+Obama+Pres+George+HW+Bush+Honor+Volunteers.aspx

In Hans news... no new complaints of pain. He seems to be bearing weight on that arm and everything. This is good.

Lara

Pain

This is exactly the kind of post I hate to write; the kind of news that every NB family hates to face. But, UGH, here we are just three weeks out from scans and Hans is starting to have some arm pain (right upper arm=original site of relapse). We actually first heard him complain Wednesday night in his sleep. Then, we managed to get him in to see Dr. Russell yesterday. She did a quick xray and the radiology report was not exactly normal. It isn't necessarily awful news, just a question mark... That area suffered significant damage at initial relapse. It was actually so eaten through with tumor that it was broken off of the growth plate. Hans made a remarkable recovery and response to therapy. There are a number of possible explanations for a bone that doesn't look normal at this point in therapy:
-bone problems from radiation
-bone problems from initial tumor activity
-even bone density issues from stress dose steroids usage
-I'm sure she even listed a few more things that I am now forgetting!
-or, even, possibly new NB activity.
Dr. Russell didn't think it was that, really. So we are going to wait a few days, if he continues to have pain, we'll get him in for an MRI. We only have old xrays to compare this current xray against. So, it's not "apples to apples".

CHOP will also be notified. And, right now, I am reminding myself of something Dr. Mosse said to us. Back in June 2009 when we received news from her that his scans were once again clear, I thanked her through tears of sincere gratitude that automatically well up when I hear those merciful words. I so appreciated what she said to me next, "Even if they hadn't been clean, there are things we can do." I needed to hear that. There is always hope. Kevin and I live by the philosophy that everyday we keep Hans afloat, researchers are learning more and more about this ugly disease. Thank God, there is great hope in the future. I believe this; I must believe this.

Anyway - we've had one drama or another for the last month or so and are quite ready for a long stretch of normal days. We shall see about that.

In other news... looking forward to the weekend, tonight is the Talent Show! Go Elle! Saturday I'm going to be at the NB Regional Conference, while everyone else will have a day of soccer and b'day parties. Then, on Sunday, Kevin and Elle should join other members of the soccer team to see the Houston Dynamo vs. the LA Galaxy and yes, Beckham! I'm a little jealous;)

Lara

Home Again

We made it home! Still no real clue as to what caused the initial fever, or the dip in Blood Pressure. We did find out once again that it wasn't A B flu, nor H1N1. But - I've already got Dr. Russell and the CHOP team "on it". Hans should be well-considered.

Hans and I hung out at the 'hossable' last night while Kev went home to be with Elle and get ready for work. Hans was funny when he found out yesterday that we had to stay another night. He said, "Those Doctors must really love me if they want me to keep staying here!" I think they do love him! They think he is the cutest little curly blonde mystery!

Elle spent the weekend with Michelle and Mark until Mark brought her down to Kevin this afternoon and they all picked us up for home.

Hans was also funny making plans over my cell with his dad while he was enroute, I kept hearing him tell Kevin, "Dude, you're breaking up!"

Thanks to Athena and fam for bringing us treats on 7!!!

Thanks to Michelle and fam for taking such great care of Elle this weekend. It is actually pretty hard for me to be without my girl when we have to be inpatient - but I know she was in good hands.

Thanks to everyone else for your texts, call and emails, offers of help and playdates.

We just hope we're out of the woods. Kevin is suggesting that we keep Hansie home from the school germs til he's back to 100%. I'll try to get some of Hans' classwork for the week. I don't know what it is like in other parts of the country this Fall, but here in Houston - it's a MAJOR flu epidemic. We've NEVER seen the hospital on such strict regulation. We feel they were conservative in making decisions for Hans based on the severity of things they have seen in the general population. So - be careful out there - wash your hands!

Lara

From the 7th Floor!?!

Good morning,
I am posting today from the Seventh Floor. We don't know if there is something significant going on with Hans that we are not catching, or if he just has had a rough October, but we woke up yesterday and Hans felt warm. He was actually 101.9 - so a trip to the TCH ER ensued. For a moment there, after a chest xray, they thought Hans had a touch of pneumonia, but the radiologist disagreed. The big concerns yesterday were fever and a lower-than-normal BP. I actually wasn't too worried about Hans' BP - seems like normal for him is something like 85/50. It was lower yesterday and the ER docs wanted him on monitors. The stinky thing about that meant that when were admitted we couldn't be placed on our home-away-from-home 9th floor, and had to be placed on 7. 7 is the Progressive Care Unit, a step-down unit from the ICU. It didn't really make that much sense to us b/c Hans hasn't really seemed that sick... But, 24 hours later, Hans has had 6 doses IV antibiotics for a possible bacterial infection, started Tamiflu for a possible Flu (we are waiting on labs), he has had non-stop IV fluids running and he actually hasn't had fever since we got admitted.

I'm not sure how long we'll be here - we are just along for the ride. We sort of surrender to the fever and all of these happenings. Kevin and I are hanging out with Hans here, and our lovely friend and neighbor Michelle, graciously opened her doors to Elle at 6am yesterday so that she could be taken in for a normal weekend. It's hard in our situation to be so far away from our loving extended family, but it is nice to have friends that will open their doors to us in a moment's notice.

We'll keep you posted. I wouldn't be surprised if they discharged us today, but at the same time, I wouldn't be surprised if they kept us another night. Hans seems to doing fine though! No fever, he is sitting up in bed, playing, talking and eating. I have a theory that when he is sick and has fever, his Adrenal Insufficiency complicates things, he gets a little dehydrated and his chemistries get out of whack, and the best thing we can do for him is sit on him and give him fluids. I just hope that whenever we do go home he stays well! They haven't found an underlying cause, and they don't have any idea if yesterday's fever was linked to or separate from last Wednesday night's fever.

Thanks for checking up on us...Lara

K lookin' good!

I'm just going to hit the high points of the past few days here:
Hans is lookin' good. He has gone back to school Weds and Thursday this week (making for a grand total of 7 out of the last possible 19 days of school - with our trip, his bout of separation anxiety, and then this recent fever!) We found out that Hans came back negative for H1N1, and everything else - we don't even know what got him, but he is looking good now! Hans had a great Potassium of 3.8 today. We'll go get him checked back out next week. He is on Day 6 of this (11th) round of ABT-751. I think it's going pretty well. It seems like the drug is shortening his fuse a little bit. He kind of shouts out at me a little when I'm prodding to get him to do something. But, it doesn't seem to be a terrible Round. I was thrilled that Hans was 'present' for picture day yesterday - can't wait to see and share those pictures. I bought the USB device package so I'll be able to share with you right away!

Elle is busy as a bee. Yesterday she got to go to the Houston Zoo on a school field trip. As I update today she is staying after school to participate in Part One of the school talent show. She is singing/rapping the theme song to The Fresh Prince of Bel Aire. It should be fun!

For those of you who have had a chance to meet my friend Kelly, please keep her and her boys in your thoughts and prayers over the next weeks. She is grappling with some difficult decisions regarding her ongoing breast cancer treatment.

Thanks for checking in on us.

Lara

More Excitement

But... not so much... Hans was looking great, and then a little puny at times over the weekend. I swear, as Pedi-cancer parents, all we have to work with are our instincts. As Kevin and I were hanging out with Hans over the weekend, he just seemed a little off... but not necessarily off enough to initiate a call to the Hemonc on call and thus a trip to the ER. So, we decided we'd hold him out of school, and call clinic at 8am to request a counts recheck - we did, and the result wasn't sooo hot. Hans' Potassium came back low again today at 2.8. Yikes! Poor little dude. So, we gave him an immediate supplement, and we have a plan: Keep him stress dosed on steroids for now for whatever it is he is fighting off, and dose him with Potassium supplements two times a day, keep him out from school again
tomorrow:( and recheck his Potassium again on Thursday. I think we can handle that. The theory is that in a few days, we'll be able to cut back on the steroids and the Potassium will level off (there is an interrelationship there). So we'll see how that goes. Meanwhile, I take it as a very good sign that Hans is asking about his pals Owen and Federico at Kindergarten. We hope Hans gets to check in with them on Wednesday. I hate that he has had to miss so much!

In other news, we had an okay soccer game. Would you believe Elle is now the tallest girl on her team? I can't believe that - I'm the 5'2" lady that always held the class sign on picture day. So, I think it's her height (about 5'0") and her courage that land her in goal. She played goalie for the first half of the game. I was beaming with Mama Pride as she deflected at least 20 shots and only let 2 through. We lost 3-0.

And then, I had a wonderful night on Saturday... Charon (Carlie's Mom) and her friend Lisa hosted a beautiful Lanyard Workshop. Vickie B. (Erin's Mom) joined us from Bryan and we provided enough beads and starts for 45 plus ladies to come and bead for a cause. It was awesome. Charon and Lisa put up a to-die-for spread, and the ladies beaded some beautiful stuff. Thanks to my pals Dana and Vickie and Laurie who were able to come out. The funny thing was that I left with not a single lanyard. Everyone bought them up for themselves, a friend or a teacher gift. I have to get busy now and stock back up. Thanks too to Debbie and KK and Paige - all of your lanyards are GONE. KK - your fun/funky fish lanyard brought quite a pretty penny in CNCF donations. Thanks everyone.

Everday is an Adventure. Everyday is a Gift!

Lara

2nd post today

Hans spent the day in triage again today. He received a second bag of IV antibiotics. This was mostly preventative, as he has been gratefully fever-free since yesterday afternoon. His Potassium came back into normal range at 3.9! He received fluids today as well, which always help him out when he's a little out of whack. And, we are still waiting for our H1N1 results and we will also push back the start date of this next round (Round 11 of a possible 52) one day until tomorrow.

Yesterday when they did his weigh in Hans was bigger than ever at 103 cm tall and 15.4 kilos! Go Hans, way to grow! He's still very little for his age. But he has at least one little buddy at school who is just his size. We love you Federico! He is looking fairly normal now and playing Wii with his daddy. We will just let him chill out and recover this weekend - no soccer cheering for Hans.

Wanted to let you know. Thanks for all your get well vibes.

Lara

Fever and Loss

You never know what you're going to get when you come and visit Hans' page. I never know what to expect, I just try to keep up! Hans had a very successful three big days of school and he seemed pretty wiped out in the afternoons. I just thought -"We'll aren't I smart to put him in school just a half day, it wears him out and it's just right for him." Well, Wednesday night my alarm went off when he said he was chilly, wrapped up in a blankie and fell promptly to sleep at 8:20. I thought - here we go... By 10:00 he was spiking a fever and we had the Hemonc on call telling us to visit our local ER. (Hans still has his Port, and his risk of a line infection is what brings us instantly to the ER after a fever exceeds 101.0.) It was an all-nighter at the ER... we got some fluids, some IV antibiotics, we learned his ears and throat looked good, but his Potassium came back pretty low (at 2.6). Yikes! We were discharged at 7:00am and sent home.

I called our clinic at 8:20 am. By 8:30 they had called me back saying they needed to see Hans. So we packed him up and headed in to clinic. Kevin was able to take the day off to join us, so it was really easy duty for me! The clinic has a triage system that is truly exceptional. If you have to get a fever, it's ideal to get it between 8 and 10 am so that your chance of getting one of the few rooms is best. You get a comfy private room, right on the 14th floor, a dedicated nurse and an actual Hemonc doc. After yesterday I realize it is just health care at its best for Hans. They ran another Potassium and it already came back up to 3.3 (low, but closer to normal) after a supplement and a steroids adjustment. We continued to get negative A/B flu results, but we are still waiting for swine and blood cultures.

We'll go back in today for another dose of IV antibiotics and more labs. Hoping to see that Potassium level off! And, hoping for an ER-free weekend. We'll just have to see how that plays out.

As I arrived at the ER on Wednesday night, I found out from Kevin that his remaining Grandpa, "gramps", Leonard Weberling, had just lost his long standing battle with Prostate Cancer. Gramps was just about the coolest sweetest oldster you could meet. He was the town barber in Snohomish Washington all his life, and then started a small barber shop in his retirement in Desert Aire, WA and worked late into this summer. We are so happy that 3 of us got to see him once again this summer. Gramps gave Hans his first ever haircut back in 2006. He was proud to get to do that special job of taming the unmanageable blond curls of his great grandson! I'm just kind of a hippie about hair and I hated to cut his golden curls. My laptop is down right now, or I'd post some pictures of our fun adventure.

Back into the Swing

Hi Again,
I had to take a minute to post a little more good news. I have mentioned that we've had some trouble with the transition from home to school. When it first popped up (the week Hans was on round 10 of ABT 751), I admit I was confused, because Hans had been doing so well. Hans actually missed several days of school that week, mostly because we didn't have an action plan in place. With Hans' side effect of the Adrenal Insufficiency, nobody, including us, usually lets him get too upset. This has cost us a little in terms of normal parenting - but we are working on that! I guess we have our work cut out for us there. But, the school wasn't wanting Hans to get too upset either. Anyway, after missing those days, and then being out for our trip, I pretty much talked to everyone I saw about Separation Anxiety. We finally realized, that despite Hans' situation, with this issue we pretty much have to treat him like any other little kid. It has taken me a couple of weeks to wrap my mind around this and toughen up about it mentally.

So, Friday, I woke up determined to get my kid back to school. We had to do the old teacher-peel-the-kid-off-the-mom trick. Thankfully, Ms. Loosmore was willing to detach him from me. We had to do the same thing Monday morning, but it wasn't quite as dramatic. The funny thing about it is - I had a call BY THE TIME I GOT BACK TO MY CAR that Hans was okay, and sitting at his table, doing his work! And then today, we made it all the way to the school with out a single tear. Hans had an apple in hand for his class project, and as I was helping him get out of the back seat he said, "Mom, what do you think of me?" I just kind of looked at him and said "What?" because I wasn't sure what he was referring to. He pointed at his eyes and said "Without all those tears!" I told him I really liked it and we marched into the school and he went and did his thing. The funny thing about the separation anxiety is that he does great when he is at school - just gets hung up on the transition. I don't suspect this is the last we'll see of it, but I'm glad it was better today.

Oh, by the way, thanks to our Girl Scout Troop 11251. Last night we beaded lanyards as a group! There were some very pretty ones and some wild ones. My friend Laurie is taking them to her work to sell today. Thanks also to Jen and Tony, who are selling a cache of lanyards to teachers and friends in Arizona for the cause.

Lara

Recap

Hi,
So I am finally sitting down to more fully update you on our trip. It was once again, a crazy week in our lives! But, I just read back over September of last year, and thank goodness, it didn't hold a candle to that month! We ended up all getting some version of that bug that Elle got. It's funny, but Hans remains so stoic with his pain experiences, that it wasn't until Kevin and I started getting symptoms of our own that we put two and two together and realized that Hans had just gone through it all on his own. We were up and back in two days. We did something a little different this time, we stayed right in Center City at the Doubletree - it was pretty sweet with a pool and a view of City Hall and the Avenue of the Arts. We had enough time to have a festive night out to the restaurant El Vez (chips and salsa for Hans), and then a quick cruise along the Avenue of the Arts, and a dip in the pool and the hot tub.
The next morning I started getting those stomach symptoms. And the general misery made the waiting for MIBG scan and results all the more excruciating. I just kept thinking - I have to keep it together, because if I just start crying - I'm not going to stop. It's really a crazy situation to have your child scanned for tumors every three months. You have to find out, all over again, "Does my child have cancer?" So, to come out on the light side of that response is pretty incredible and uplifting. We sure do feel that we have done the right thing in coming to CHOP. The team there is so dedicated to beating this disease, and the mysterious combination of the characteristics of Hans' tumor, and the team's expertise have all just fallen into place. Hans has an undeniable connection with Dr. Maris. It might just be a guy thing, but I suspect there is something deeper happening here.

When we arrived at CHOP in the cab, with all of our bags, fresh off the plane, we make this big turn and suddenly the hospital comes into view up on a hill - it says "Children's Hospital of Pennsylvania - Hope Lives Here". It blows me away. Because, for us, for Hans, for his specific tumor, for our situation and our family, it worked. It was the right thing to do. Despite the fact that we have travelled there so frequently (7 times in the past 12 months), and the expense and upset to general family life is great, it worked. We have always had HOPE, but we feel we have put our HOPE into the right hands. We are ever so grateful and humbled and once again we come away with the feeling of Mercy. We are so thankful for this glorious time. There are absolutely no guarantees with this ugly disease. We just have to take one day at a time, just like everyone is supposed to do. But, isn't it just the hardest thing in the world not to plan and dream and hope away for the future! And of course we do, it's just that our future has this horrible black question mark that gets put into check every three months with scans in Philadelphia.

Now - we get to forge ahead with normal life...soccer, beading parties, Kindergarten, (Hans' separation anxiety has been making it the transition from home to school very tricky, tho) home repairs we're catching up on - (I swear we fell three years behind on our place) and regular stuff... and in probably about 6 to 8 weeks we'll start to feel the fear and anxiety sliding back into to our lives as the next scans approach, but, for now, we get a free pass to continue life as usual without any treatment change-ups.

Hans is a one heck of a little Kindergartener - with his Frequent Flyer Card and his NFL wheelie back pack, he can handle any airport like a business traveler! Kevin and I are so proud of him. And, needless to say, we're proud of our pretty girl Elle, who celebrated her 11th birthday Friday! She handled us leaving her, with a big change up in plans at the very last minute, with courage and grace.

One more thing... Thanks again to everyone who has made these trips easy for us... the Sparrow Clubs, and all of you who have donated miles. Most families wouldn't be able to do this all on their own, and we are grateful to everyone who has made traveling for Hans' treatments possible.

Sorry for such a long post!
Lara