Happy New Year!

I wanted to wish you Happy New Year and give a little update.
Hans' counts REALLY tanked in this round. His HGB was 8.3, ANC 0 and plts 2.
Since we are headed into a long weekend and plan to be traveling next week, we decided to go ahead and transfuse him with red blood cells and hold off on platelets. No wonder he has seemed wiped out. He got the blood today in Bakersfield. He said getting blood makes him feel stronger and walk faster:)

My mom is feeling better this week than last.

Elle loves Mexico! She said Puerto Vallarta was like a Mexican Hawaii and she told us she has to go back.

Kevin is doing a cool bike ride tomorrow. He'll be riding 100 miles in Ride for Life out of Santa Clarita tomorrow. Proceeds benefit CHLA and the race will be led by former US Postal Service cyclist George Hincapie. He hasn't done a ride this big in about ten years so we are all happy he gets to do it!

Surprise

Elle got the surprise of a lifetime on Monday. We knew that one of her girlfriend's families back in TX was leaving for a cruise out of LA on Monday. They'd asked if Elle could tag along. We said sure, thanks. But their cruise ship was full and they've been calling every day to see if there was room for a plus one. But, they'd been hearing NO since the day after thanksgiving. We hadn't mentioned it to Elle or her friend. But, on Monday morning, we got a call at 10:30. They were gonna check one last time at the terminal. We told Elle to throw a bag together just in case. At 11:00 we got the call to "come on down". She managed to pack between the screams. We had to hit Target for some new Aviator Sunglasses for her and her friend:) We made it to the terminal by 3pm for her 4pm departure to the "Mexican Riviera" via Disney Cruise. What fun! They are at sea today and will hit Puerto Vallarta and Cabo San Lucas before returning to Long Beach, CA on Monday. We'd of course like to THANK this sweet little family! What a crazy wonderful blessing. I am still tripping out that it worked out. It sure wouldn't have worked if we were still in TX. We just happened to be on standby, and it worked out so well! Bon Voyage Elle.

I know she felt bad ditching her grandma. But we are all happy for her, and my mom and I are keeping the pace really easy for her and Hans around here. My mom is doing a little better after the fall now, but I want to take it a little bit easy on her and give her a chance to rest. Kev has wound up back at the office more than at home with a well that is keeping him busy.

We are in the process of making plans with UCSF. We could possibly go up there next week for a consult and work up, and possibly do the MIBG therapy Jan 12th or Jan 26th...

Thanks or checking up on us!

Merry Chirstmas

Merry Christmas, everyone!
While we can't be with all our friends and family because we're all spread out...
we are happy to be here at home. And we hope, again, that all of you feel that same sense of joy and peace to be right where you are this Christmas.

Thanks for following Hans' story and keeping our family in your thoughts and prayers on our Journey.

For Parents New to NB Relapse

I have had this list in mind for a few weeks, for some reason. Top Ten List of Tips for families facing relapse. Here ya go. It's just my thoughts, so take it with a grain of salt.

1. Statistics. Relapse statistics aren't good. Don't put too much weight in them though. Stats are based on yesterday's research. Doctors and researchers are working all over the world on this disease. They could roll out the silver bullet tomorrow. It's our job to try to keep our kid on the face of the planet until they figure it out. Who knows, some one might just win a Nobel Prize for medicine for cracking the code. Don't let the numbers get you down. No one has a crystal ball.

2. Reach out to other Docs. No matter where you are diagnosed, it is likely that relapsed NB will require some collaboration between treatment centers. The truth is no one center has all treatment options. You can shoot an email to an NB expert in a matter of minutes. Most of the time they get right back to you. Many families feel better after they reach out to Dr. Maris and team at CHOP, Dr. Kusher and Team at MSKCC and/or Dr. Sholler and team at Grand Rapids Michigan. These centers see a lot of kids facing relapse. They are rich in experience and options.

3. Let your family and friends support you. Say yes to delivered meals, child care, etc. To friends and family members: Try to never say "let me know if you need anything". Rather, try to offer one example of how you are personally motivated to help that grounds your offer in reality. For example, let me know if I can get Sophie to dance lessons. Let me know if I can send dinner to the hospital once a week while you are inpatient. Let me know if I can organize an airlines miles drive, or a meal delivery.

4. Research organizational support. A lot of families want to do it all alone. The reality is that relapse can be a long haul. Sometimes incomes are limited as it can be difficult for both parents to work in this setting. Relapse treatment can hit 20K each year in out of pocket expenses, especially with travel for treatement! Special organizations were set up to support families in this rough situation and keep them afloat. Talk to your social worker, look into CAN Coroporate Angel Network, National Children's Cancer Society, Ronald McDonald House, Sparrow Clubs, Alex's Lemonade Stand, etc. These organizations can be sustaining.

5. Re-evaluate your relationship with your Oncologist. This is a touchy subject, and one we usually avoid with a ten foot pole. But, you might find that there are subtle philosophical differences between you and your oncologist when you are facing relapse as opposed to front line therapy. All we can say is listen to your gut level instinct. Is your doctor on the same page? Is every cell in your body telling you to get a second opinion? Are you compelled to stay the course? It is important that your actions align with your instincts here.

6. This is our child. We sometimes feel that people may question a move we make or a treatment decision here or there. But, at the end of the day, this is our boy. We believe that God gave this baby to us specifically to do OUR best job with him. To us, that means we have to use every resource, every intuition, and even throw the occasionall fit, to see that he gets what he needs in his extreme circumstances. The way we see it, as his parents, it takes every gift and resource we have to get him through this. We feel obliged, honored, and responsible to do just that.

7. Don't fall asleep at the switch. Relapse can be a long, tiring process, lots of time last minute decisions are made and plans are worked out on the fly. No one will understand the current plan for your child better than you. You will have to advocate, advocate and advocate some more to keep hospitals on schedule and on the same page. Don't be shy. Mistakes and delays can be tragic.

8. Pace yourself, this is a marathon not a sprint.

9. Get informed. You can get valuable information by joining the ACOR N'Blast List Serve, and through the Children's Neuroblastoma Cancer Foundation. We recommend attending the Parent and Caregivers annual conference in Chicago at least one time, especially after frontline therapy prior to any relapse. It is an amazing resource.

10. Have a Top Five list. Have at least a cursory knowledge of treatment options available. Have about 5 therapies in mind you can talk to your doctor about. Things can change on a moment's notice. We find it empowering to have a short list of alternatives. Even if we found out we had to change up therapies tomorrow, we wouldn't feel like we were falling off a cliff.

Hoooooome!

Hans made it home. We are happily chilling out! Kevin swapped out with me last night. Our kids are still in school ALL WEEK then not back til the 9th!

Hans and Kevin made it home this afternoon. Hans looks a little beat, so he is just relaxing and watching some shows, eating his favorite foods...

No plans to go back to LA anytime soon. I guess the next step...we hope to hear from one of the MIBG centers to hear about scheduling scans and getting Hans on the books.

We have to thank The Protectors Foundation! We were the recipients of a wonderful Chrismtas Gift upon on our return home. This Foundation was set up in the memory of two family members lost to cancer in recent years. Each year they do a golf tournament. This year, our family was selected as one of two families facing cancer as beneficiaries. How wonderful. I would like to THANK them for their generosity, APPLAUD them for using their time in the service of others, and COMMEND them for honoring the "two Bills", Bill Kowalski Jr., and Bill Kowalski Sr. in this way. It's a beautiful thing.

Just Thinking about

all the NB angles and their mamas, daddies, sisters and brothers during this holiday week. I found a sweet song by the band Alabama that I want to share in the form of this You Tube Video Link: http://www.youtube.com/watch?v=1ss1UN9aN1o called Angels Among Us.

Thinking of you Lily, Carlie, Chloe, Erin, Patrick, Ryan, Sam, Erik, Haliegh, Blaine, Malachi, Serenity, Nick, and all the little angles.

Hans is doing fine. He was pretty pukey yesterday, but perked up to eat not one or two, but three different orders of chicken from two different restaurants. Thanks, A!

snapped by Aimee yesterday

My mom was cleared to fly. She flies into LAX Christmas Day, that will be a divine Christmas gift for us all:)

Round Three of ICE started

Hans got admitted yesterday for ICE. So far, so good. I'm very pleased that this chemo is just three days. We hope to beat Thursday night traffic out of here. I checked everything off my Christmas list, so it is actually okay that I'm locked up for a couple of days and don't go overboard.
My mom had an awful fall off a ladder while painting a room in her house. She broke a shoulder and has some stitches in her face:( She will find out today if she is cleared to fly down here for her Christmas trip.

That's about it for now. Hans has my laptop so I am typing this post on my phone. He just found "Conqueror of All Worlds", an online video game on Cartoon Network.com. It seems to be a fun distraction for this stay.

MRI Good

Wanted to share some more good news. MRI looked good. There are maybe some spots that look like treated disease, but nothing of any concern at all! Hallelujah!

ALso, the doc had a chance to sit with the Radiologist and review past and present MIBG scans and has a new read on the MIBG. "His questionable lesions are not at all impressive on review and wondering if they are true." On that note, our rough plan is to shoot for MIBG therapy in January (if an MIBG center believes he would be a good candidate). ICE is back on the table as the bridge to get us to MIBG. So is another chemo combo of Doxo and one other agent. Our plan is to have a good busy regular weekend here, and check in Monday AM to see what they shall do with us. If we do ICE we could be home Thursday morning. The other chemo combo would put us home Christmas Eve... We may even add a round of Zometa... ZICE? ICEZ?

We are totally encouraged and excited that this is prime time to do a second MIBG treatment! Hans' bony disease responded immediately and completely to this therapy back in 2008, and we are optimistic about the opportunity to do it again. Not to mention, thankful that we have stem cells to use as a rescue from the MIBG therapy if needed!

Also, I have to share once again that I am truly so pleased with Dr. Marachelian, she is an angel to me! She called us from her home and spoke with us for an hour about our options at 7 o'clock last night.

Thanks for checking up on us:)

Mixed Response

Yesterday's scans revealed what they called a "Mixed Response". This is both good and not so good. The good news first: The big bulky NB present in both of the lymph nodes at the neck is completely gone! The CT is normal. This is amazing. Those growths came on very aggressively, growing from lentil to golf ball size within a 7 day period. The fact that they are completely gone is wonderful and significant and certainly something to be celebrated! However, the bony disease didn't respond to the ICE:( There are actually a few NEW (questionable) spots on the skull. The new spots are tiny and are under review, but they are enough to get us concerned. So, due to the fact that ICE has done it's job, and is no longer effective on the disease that remains, we will be changing course, once again.

The Doc said this was both puzzling and unusal to have a mixed response in this way. We've certainly never had this sort of response. But, then, we haven't usually had these two different kinds of disease to contend with. Hans was facing both bony lesions that showed up on the MIBG scan, and soft tissue disease at the lymph nodes, showing up on the CT scan. The Lymph nodes were not what you call MIBG avid. They didn't "light up" with the MIBG tracer. It's a little bit of a puzzle that ICE only affected the non-MIBG avid disease.

Hans didn't make counts with Platelets of 56, so luckily that buys us a few days time to figure out our next course. Our goal is to start "something" the week before Christmas. Everyone is on board to get Hans home no later than Dec 24th. Hans made it clear that he didn't want a Thanksgiving Day replay (no early Christmas morning discharge). He is like a broker in these office visits now - he comes in with his list of demands: I want twelve days in Bakersfield. I want to be home on Christmas Eve. No shots, etc. etc. He's good! We are at home now. We'll go in for labs locally today and they are trying to get an MRI of the brain scheduled for Hans perhaps tomorrow.

We have a few ideas for what to do, but all of us are still thinking. I am just going to give bullets of our top 5:
- MIBG therapy
- Vorinostat
- Immunotherapy
- Fenretinide
-ALK Inhibitor
It is actually possible for Hans to eventually cycle through ALL of these therapies. It is impossible for us to get in and out of MIBG next week, so if we go that course next, we may be looking at MIBG in January with a bridge therapy for next week to get us there.

That's what we're thinking. We should have enough time to pick up our Christmas Cards at Costco, get some of them addressed and in the mail, and hit the road back down to LA. With any luck, that is. We need to get an MRI slot!

I am focusing my thoughts, prayers and mental energy on our doctor having just a little bit of divine inspiration in making this next treatment recommendation. Thanks for your thoughts, prayers, meditations and 'good vibes'!

Here is a shot I had to share, Holly snapped this pic of all of us and Hans and his amazing ever-growing, kept year-long Christmas wish list. Hans checks off items he gets and keeps taping and adding new wishes. This is actually his same wish list from last year. He takes it with him to see Santa. It's really cute to me. We went to see the Santa across town this week, and just continued to enjoy more good mellow family time this weekend. Hans got all tanked up on blood right here on Friday. Elle is recovering from strep and is back at school today. Scans are tomorrow and Wednesday, so long as we can make it over the Grapevine (6"-7" of snow are in the forecast, and I'm just not sure how they manage that snow here...what their road crews are like...

Blood and Strep

We are doing okay despite the fact that we now have TWO little patients in the house. Elle's throat started getting sore last night, and this morning her rapid strep test came back positive instantly. It blew me away that at our 9:20 am appointment she was the 7th kid with a positive strep test this morning! Elle is sequestered and is in recovery. I am pretty proficient in fetching comfort foods for sick kids, so she is well kept in mashed potatoes, sweet potatoes, pudding and decaf frappucinos. Hopefully the Amoxicillan will kick in soon.
Hans' labs came back in: HGB 8.0, Plts 9, and ANC 13K! They want to give blood and hold off on platelets. I believe, if we can get Hans on board, we will be getting the blood right here in town tomorrow. I wouldn't mind shaving off about 5 hours from our total transfusion time, so we shall see what plan he endorses.

Scans pushed back a week

We found out today that scans are pushed back another week. I'm not really sure why... but I'm totally fine with it. I know that Dr. Marachelian had originally wanted them next week...

Hans has dangerously low platelets <5, ANC is Great and HGB is almost 10. We are holding off on a transfusion right now due to the reactions he has had with the last two transfusions. He is looking pretty good. Good enough that we thought we could get away with stepping out to Kevin's company Christmas party. It was actually totally fun and we are loving this company! It worked out really well, the party was at a hotel here in town and we just set Hans and Elle up in the room and checked on them a couple times as needed. It was fun! And now we get to enjoy more 8 more days at home (fingers crossed).

We'll check labs on Thursday and again Monday. THEN we go in for scans on 12/13 and 12/14. He has had a few random pains...one headache and one little back pain.

cheese

I had to grab a pic of Elle as she was about to hit the door for a birthday party.

And, I have been asked by a bunch of you, what's on Hans' Christmas wish list...
Here is his Amazon.com wish list. Thanks for asking. He really doesn't need a thing! His room looks like a toys r us wrecking ball. I wish I had the "organizes toys well" gene. Not in my set of strengths...

Decking the Halls

I have been slow to post because we're just busy having fun! We are decking the halls and doing more shopping. Once again I have a real sense of urgency to get 'r done while we can. We don't know what will come up after scans, so I wanna get on it now. Hans is truly a Holiday boy. He is a little ring leader in all of the holiday festivities. It's cute! Elle is right there with him. She kicked off the holiday baking by making us some delicious pumpkin cupcakes.

I got a chance to get out and meet another NB mama, Belen, last night here in town. It's good to make that connection. Belen lost her little Ylaria nearly a year ago. I had fun meeting up with her and her pal Jennifer for Mexican food and a Marachi band:). I heard that the TX NB mama's and friends n family did very well at the TCH Bake Sale. They raked in $2660 today! :)

Hans had some pretty Low counts yesterday. They came back at: HGB 10.7, Plts 6, and ANC 100. He is still okay though!

Labs are fine

Labs are fine! HGB 13 plts 54 and ANC 6K. Hans is fever free. He had two little strange problems this morning - eye pain and then he threw up once!?!?
Other than that we are just busy here doing regular stuff.
We are shopping, decorating, cooking, eating, trying not to eat too much good holiday food, except Hans who eats as much as he can, hanging out, getting a few more things done around our place, cleaning... relaxing, reading, snuggling, taking walks. This has been like a little 5 day vacation in our own home. Lovely. We are hoping to push the envelope and get to stay here, fever free, all the way through Monday. We can actually feel our "batteries" recharging.
That's all the news I have for today. Thanks for checking up on us!

Reprieve

Oh, what a nice feeling it is to have this reprieve. Last night my mind was reeling.
Just a week ago we were on our last day of that very long Stem Cell Harvest. SINCE then, we've spent four nights inpatient getting another round of the very powerful Chemo ICE. So much to absorb! We have just over a week before scans. I don't even need to say how much we have to be thankful for.

Among the many things, we are thankful that our new home on the West Coast makes us more accessbile to our family. Thanks, Aunt Holly and Michael for coming out for your visit. They spent hours helping us sort test and string Christmas lights yesterday, as per Hans' specs. I hope our new home owner's association appreciates our artistic expression;)

Hans has Labs locally on Monday and Thursday. I'll plan to post when we get those results, unless there is other news to share. Hans has a dental appointment a week from Monday (dread - all this treatment is not easy on his teeth), and scans Tuesday the 6th and Wednesday the 7th.

Thanks for checking up on us.

Happy Thanksgiving

We made it home! Elle and I came home last night to start getting the house ready for the day. Hans and Kevin were discharged at 6:30 am!! They were home by 9:00. We are cooking, chillin', smiling...

I am hoping that all of our friends and family are as happy to be where they are at today as we are.

Happy Thanksgiving. Drive safely out there!

19 hrs and counting

I was just adding up the hours and Hans filled in the blanks for me, "19 hours and we can go home." Oh, I'm pushing for you baby. I can tap into my dad's flair for the dramatics every once in a while (he got a MA in Drama) - I am laying it on pretty thick up here. Discharges can be very inefficient and slow as molasses. I've been presenting my case with anyone who'll listen that we need to expedite this one discharge. They must be sooo ready to get us off the floor. Hans has had one little new issue pop up that we are keeping an eye on. His BP has been creeping up the last few weeks. No one quite knows why but we are watching it and the docs are starting to scratch their heads. He had to take a liquid blood pressure medication last night. That didn't go over so well. Liquid meds are probably only second to shots on the list of things Hans can't tolerate. Oh boy.

I am thinking a lot about all the angel mamas celebrating the holiday with out their bebe. I'm wishing them Peace, Love and Joy tomorrow!

Also - I forgot to mention the next TCH bake sale is coming up Friday Dec. 2nd. I am so pleased that Charon and Jennifer are carrying it on, and so grateful to all the bakers and workers!!! I know they'll put their own special stamp on it and make it even better each time. Nothing like a Texas Sized bake sale to raise money for a cure to kick start the Christmas spirit!

Smooth Sailing

We are sailing smoothly through this chemo so far. They got it going at noon yesterday, today is Day 2. I guess the latest estimate is an 8 am Thursday departure which is MUCH better than noon. We have scans set for two weeks from now. After that, we don't know. We may change this up, or keep it up for a few more rounds. The second option will be more attractive if scans look better and if Hans tolerates this reduced dose much better than he did his first full strength round of ICE.

Aimee was here last night and she keeps Hans up to date on cool apps, like this one - cat paint, and in his new food preferences. Hans' tastebuds really seem to turn over with each new chemotherapy. ICE has turned Hans into something of a health nut. He has gone from Popeye's fried chicken, to Baja Fresh grilled chicken, and from Mt. Dew to CranRaspberry juice. He gets by on those and Parmesan Goldfish during his inpatient stays. He eats much better at home, but at least he is still eating here.

This stay we are working on Crayola Color Wonder and Color Explosions. I also found an Extreme Dot to Dot book. They are really cool, up to 500 dots to connect on a regular notebook page. Those are keeping Hans busy this stay. Hans has his MO, for some reason he doesn't do the playroom. He just buckles down and does his time and gets through it.

The plan is for Kevin and Elle to come join us tonight! Yay. We are also looking forward to a visit from Kevin's Aunt Holly and Uncle Michael from Scottsdale, AZ on Friday:)

We're Back

We arrived back at CHLA 4West yesterday.
We are just about to get started on our three day round of ICE. We are waiting to hear from the docs when we can get out of here. We are actually pretty desperate to be home for Thanksgiving. We really don't want to be inpatient two Holidays in a row. Obviously, who would???

We had hoped to start chemo last night. Hans just barely made counts with platelets, but his 12 hr urine tested of his Creatinine levels just missed the mark (kidney function assessment). We started a second collection with hydration and his numbers doubled, so he"s good to go. BUT we lost 12 hours which makes this inpatient stint just feel very pressured! We need to get the chemo in and get out of here. It's like a race against the clock for Turkey Day. But, of coure, Hans' health and safety come first. Right now I'm hearing estimates of a noon Thursday discharge, but we're working on that! UGH.

4

Bear with me and my variables for one more post. x is = to almost one and y came in at 1.35, so z is just about 4! We'll take it. I remember 4 was the goal for our first collection back in TX. Back then we doubled it, but this time we just made it.

As for the value of a, that's a little unclear. It depends on what therapy we may try. 4 is enough for basically one or two rescues. One if it is a particularly harsh trial, two if it is something like, lower dose MIBG... If that makes any sense. It puts one or two big treatment options back on the table. Hans did it! It was tough, but he did it. I've been emotional about this - because it is such a big draining ordeal. I think Hans did better than I did! But I'm also emotional about the larger mystery of it all. Here we landed in the lap of this new oncologist with progressing disease. She has rolled up her sleeves and gone to work as if she's been caring for him from day 1. She said that this stem cell harvest might not work, but that she had a good feeling about it. She wanted to try. It is an incredible feeling to have someone stick their neck out there for your boy. I'm wiped out, but am feeling so very good and grateful about it all.

The rest of our weekend by the numbers:
Hans and his dad are sure to select at least 4 Lego kits as a reward for the "4" banked cells.
2 - 3 the number of 'playoff' soccer games Elle has over the next 2 days.
40 - the number of hours we get to enjoy at home before returning to LA for a
3- day 2/3rds dose of ICE. We expect to get discharged Wednesday!

Hans is looking forward to helping Kev cook the turkey. He reminded me the other day, as we are in the middle of stem cell harvest all hooked up in the Day Hospital, "Mom, we need to get the turkey by Saturday. It has to thaw for five days." He actually remembered that from previous years and was planning it out in his head. I told him I would have had to Google that. He and Kev are going to go pick it out today.

x+.14+1.3+y=z

We started with a portion of cells in the bank, x. Wednesday we harvested .14 (I think this is 140,000 stem cells??), yesterday we harvested 1.3. Today we will do another harvest, y. It will all add up to z. I am hoping Z is greater than or equal to 2a - two eventual stem cell rescues that we never even need to use! How much is a resuce? I have heard two widely divergent quotes, a=1 and a=2. That's what I know for now. Today I will ask about x, and try to confirm the value of a. Tomorrow we will find out about y and z. Five years ago when we did this back in November of 2006 I just re-checked the blog and Hans got 7.9 over a day and half. But now, five years of this sometimes barbaric treatement later, he seems to be taking twice as long to produce half as much of these precious cells. It's not too often that my hopes and dreams are best described by the most basic algebra - but I am hoping that at the end of the day - z will be equal to at least one, and possibly even 2 of a.

Hans is pretty stoked to get out of here. He is counting down the hours until this pheresis can be removed at the bedside. He is getting his usual compliments. His harvest nurse Brian said two amazing things yesterday. Hans' line is the best line he has ever worked with! And, Hans is his best patient he has ever had... so tough and stoic and professional about what he's got to do up here. We hear that all the time, execpt from the poor nurses that have to give him shots. We always say Child Life needs to hire Hans for a series of procedural videos.

I'm doing my best to get through these days and not dwell on the moments we are missing out on back at home. Elle had a playoff socer game last night, and she's going to see Breaking Dawn this afternoon with our neighbors, sans her mama:( I remember thinking back when she was in Pre K starting up in soccer, "Wild horses wouldn't keep me from one of these little soccer games." Gosh, what we sure didn't see coming, wild horses, wild card, aka stage 4 high risk, multi relapsed Neuroblastoma! But, none of us would have me and Hans anywhere else in the world than to be here, banking these little bags of gold 'in case of emergency'.

Thanks for checking up on us. I keep clicking back on this video today. Ben Harper's Blessed to be a Witness.
http://www.youtube.com/watch?v=2vJEfU4qCmM

Harvest Day 2

We are sitting here waiting to get hooked up for Day 2 of the Harvest. We had a good night's sleep in LA at Aimee's B&B, woke up and drove in early, actually arrived before the clinic opened its doors. Ha! That was a first for me. I'm usually 'fashionably' late.

I have no idea how many cells they collected yesterday. Our nurse through the process yesterday, Brian, has been doing this for a good chunk of his career. He's never done a child's second harvest. He was actually surprised. He didn't think they did harvests after radiation. I told him we've had three separate courses of radiation. Our onc is keeping our expectations in check. She has explained that even though the little bags are filling up, it really doesn't mean anything until they count it. I think they are hoping to just round out the half bag we have on hand for one full rescue. But, of course, I'm hoping we do better than that!

My friend Vicki asked me how long stem cell harvest takes. The short answer... we are planning for three twelve hour days, starting yesterday. BUT, the long answer...
First, you've got to have a disease burden that warrants a pretty high dose round of chemotherapy. We got that round inpatient for 5 days starting Oct. 18th, had a week off at home, had a week inpatient for the neutropenic fevers that tend to follow high dose chemotherapy. At that point, we started to try to harvest, then we came back over two consecutive weeks until his counts were just right. Hans has put up with daily injections of GCSF since the end of October. It would be a long haul even if we didn't have a 100 mile one-way commute to our hospital!!!

The amazing thing?? This boy! I was bracing myself for his trauma surrounding the shots to spill over to the rest of this process. But nope. He is handling it like a pro. It almost breaks my heart that he's such a good patient. Hans woke up from surgery yesterday to not one but two bandages. Dr. Stein tried to put the pheresis line in his right leg but it was a no-go. So, he got patched up on the right, and the line went in the left. The line is at the top of his left thigh. It limits mobility and causes Hans to walk slowly. He hasn't complained about it once. He only repeatedly asked how long he has to have it in. He did so well yesterday. He was pretty much trapped in the bed and he didn't shed one tear. I actually finally had to ask him, "How do you do it, Hans? How do you handle all this?" He just said "I don't know." He just keeps asking what he is to expect over the next couple of days, and most importantly, when we get to go home!

Thank you Tanja, for hooking Hans up with Lego:) Sounds like he is "sponsored", at least for November anyway!!! I love it.

It's a GO

Hans is in surgery right now as I type this. His CD34 came back at 17. Thank you Mozobil. Hans got a shot of this stuff yesterday in clinic and I guess it did the trick. He had to have two shots yesterday. I don't know what it is about getting shots now, but he hates it. There were four nurses in the room to give him his two shots yesterday and two of them wound up in tears. Yikes.

For a quick recap Hans counts needed to be nice and high for a collection of stem cells. This is a brief window in time after a hard chemotherapy treatment. They are placing an extra pheresis line in his femur/groin area. They will filter his blood through a machine almost like dialysis. They magically separate out the precious stem cells and store them frozen. If this collection is successful, he will have more treatment options open to him in the future. There are some treatments so harsh on the blood counts that they won't even be attempted unless the child has stem cells in the bank.

I haven't even known what to pray for throughout this long stem cell process. Now I'm praying as I always do that no new harm comes to him and that we have a successful collection. We also got news that we are likely to be here through Friday and we are not to leave LA and go back home at night. He took that news pretty well. He can take almost any news other than: time for a shot! Thankfully we have Aimee and Claire! I shall post more tomorrow.
Thanks for checking up on us!

Nice weekend...third shot at stem cell, here we go

They say the third time is the charm. We'll see. Hans got called into clinic this afternoon. He counts looks robust enough to try again. Yesterday Hans tried a new local Bakersfield clinic for labs. CBCC is a local adult cancer center that has agreed to see Hans for labs. I was surprised to see how packed the place was! For a mid sized city of 350,000, I couldn't believe how large their cancer center could be! Anyway, Hans ANC is a nice 6k, HGB about 10, and platelets at 67. This is interesting. With platelets not quite high enough to make counts to proceed with another round of treatment just yet, it's a good time to give a third round of harvest a try. We are in clinic right now for Hans' dose of Mobozil and another boost of GCSF. We have to stick around 'till 6pm and then come back in the morning to check that CD34. If it's even at 7 they may decide to proceed with a line placement and then possible harvest Wednesday, Thursday and Friday.

We are trying to go with the flow. It hasn't really been too easy! Hans creates his coping mechanisms by knowing what's coming and knowing what to expect. It has been frustrating for him not knowing at all what is happening. We are trying to work out a Thanksgiving at home, but we still don't know when we'll start the next round of therapy. We don't even know what we'll be giving him, but I think we are all starting to lean towards a reduced, 3/5ths dose of the ICE.

That's the scoop. More I don't knows than I knows! We had a great weekend. Five straight days at home! :)

Thanks for checking up on us.

Rest

If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again.” - Flavia Weedn

Well, yesterday's counts weren't so hot for the possible stem cell collection, so I think we'll give it a shot next week just in case his counts take off. Yesterday's CD34 was a 3, and it needs to be more like a 10 for a possible collection, a nice 100 would make a better collection. For right now, the Rx is a little R&R and days at home. We've been in a medical marathon since Hans' 8th birthday back on July 15th - spending half of our life in the hospital, and even many many more days in the clinic on top of that. It's time for us to lick our wounds a little bit and breathe.

Hans had a nice HGB of 11.7, ANC of 3000!, but low platelets at 5. He got a platelet transfusion and had another platelet reaction of bad hives. We stopped the transfusion about 2/3 into it. We'll go back in for labs Monday, locally. I think I'll sign off for a few days and recuperate! Unless something comes up... I just handed Hans an oxycodone for a little bit of back pain, so who knows!!!

Thanks so much for your donations to Hans' CNCF park. Five years ago, Hans spent 17 days in the hospital as he was diagnosed with Neuroblastoma. I have been talking about his Five Year Campaign now for seventeen days. Way to go, we've raised $8,050 for the CNCF in his park to date. I'm so pleased - my 'secret' goal was $5,000 for five years! I feel indebted to the CNCF. We were able to go to the Parent's and Caregiver's Conference in July of 2007, and we created sort of a mental flow chart in the event that Hans ever relapsed. When Hans did relapse later in May of '08, I was the crazy lady in the ER saying, we'll go to New York, we'll go to Philly! We'll go to Vermont! We'll do anything for this boy! Thankfully, he has a tumor that actually seems responsive to many therapies, and yet it is persistent. We were blessed with a healthy dose of endurance, some emotional reserve, resources, a support network, and an endless supply of love both for and from this kid. We'll do anything we can for him. I believe that God gave Hans to us for a reason. And he gave us to Hans for a reason. We have to do our best by him, that's our job. It's what we're here for. Thank you for showing your support by donating in his honor! Thanks Roxie, for your contributions through Scarf it Up! as well. Today is the final day that 15% of your online order will go to the CNCF.

I plan to post some labs on Monday, unless something comes up.

Home, if only for 36 hours

We got discharged yesterday! Hans is OKAY. He has an ANC (450), he had no platelets (less than 5), and his HGB came up on its own to 11.8. We are just waiting on platelets to come up. We have to leave EARLY tomorrow morning to see if we make counts for the Stem Cell Harvest. This process could go Weds, Thurs, possibly Friday. OR, we may try it once again on Monday/Tuesday. It all depends on how his counts look, and then what his cells actually do in the collection.

Sorry I didn't update sooner, but you might be able to imagine the whirlwind of 36 hours at home after an "unplanned" 8 days away... laundry, pick up scrips, Halloween decos down, a few Thanksgiving decos up, quick food shopping, food prep for HOME food! Hans got another Homebound session in - he's maybe had a half dozen this year. And, gosh, we're still not fully unpacked because the floors are still going in. It's insane!

It may be exhausting to go back and forth for Stem Cell, but that's the plan, so long as we are not readmitted. Hans just hasn't had quite enough of HOME, so we'll do what we gotta do. We gotta keep our little dude happy and comfortable. His major compalint is these GCSF shots he is getting daily. I'd say he HATES them. I hold him, and Kevin gives the shot. I think Kevin hates hurting him more than Hans hates getting the shot. I've got the best deal going there - holding Hans. We just have to get the daily shots 'til stem cell. It's not fun, and his poor arm is all bruised up now that he has virtually no platelets.

All the while, our eyes are on the prize. We need to get cells if possible, get one more round of something in him, and then, we'll fully rescan, and maybe we can jump back into a more pleasant version of our life... stable or disappearing disease, mellow from-home therapy or trial... more home days than hospital days, more walking the dog, more home food than not. That's what we're working towards.

Thanks to Mayada for the card, and to my old coworker Tanja for hooking Hans up with the Lego Donations Center! Wow, I guess Aunt Susy sent a letter too. Two boxes have arrived... I'm not sure from who... maybe Lego or maybe another Lego Fairy??? So sweet!

May be turning a corner here??

Cool banner that came with our TX care package...

Hallelujah, we might be turning a corner here. We don't quite have an ANC but we have a WBC that has come up from .13, to .21 yesterday to .71 just this morning! (We've heard you can start looking for an ANC once you hit .8). Wow. The fever hasn't come back in 24 plus hours! Can you believe it??? Perhaps it was the Fluconazole that did the trick. Not all the counts are following suit yet - Platelets are under 5 :( and he got a blood transfusion yesterday. But, we'll rejoice in the good news! They DID start him on the TPN (IV nutrition) just last night.


There is a little talk of HOME, but at the time, we are going to see what his labs look like and we may still pursue stem cells this week if the counts are just-so. Our plan was to do another round of ICE if the first round seemed to be working. But I told our onc that sounds terrifying. We'll see. Perhaps with a drastic dose reduction???

I had a wonderful, magical 24 hours at home with my girl! After a quick gonzo-cleaning, laundry effort, we made dinner, got our nails done, visited with the neighbors. We watched two movies together, put together two of the dining chairs from our new set that has been sitting in its box for several weeks now, went shopping for just a bit of the much-needed home decor for our place, and went to a soccer game! Elle was on D and she had two of the most beautiful outrun the forward and the rest of the pack with a gorgeous slide tackle saves I've ever seen! She's actually pretty fast which just trips me out because I never was fast at all. Elle was whisked off to more fun in LA by Aimee last night while Kevin and I shared Hans time.

All of us were completely spoiled by a 4-box care package from our old neighborhood plus a couple great pals! It was an embarrassment of riches or an early Christmas! Hans may now have just enough Legos to get him through this hospital stay. He works on them with much concentration and diligence. It's pretty fun to watch him go to work. Thanks, so much, to the Shallow Pond/Sandpebble cru! We feel the love!!! (Thanks to our darling friend Michelle for organizing! thx Carm and Charon too:)

Check out: CNCF Park! http://www.cncfparks.org/help-a-child/park/21/
And also Scarf it Up! for a cure 15% of Internet sales go to the CNCF in honor of Hans.

Bouncing along the bottom

Hans' counts are not doing anything. He has no ANC, a WBC of .13, Plts down to 11 and HGB of 8.6. His fever has been persistent for now nearly, but not quite, one week. It's a funny fever - it goes away with Tylenol. It sometimes doesn't crop back up for 20 hours, but then it sure does. It was just 103.1 this morning. The other funny thing is that Hans looks pretty good. He is sitting up and doing more Lego! Thanks, this time from pals in TX. I haven't seen the card and notes, but Kev brought down all the loot last night. HOW SWEET! Perfect timing for this hospital visit.

They don't know what is causing the fevers. He has no pain. Nothing has come back in the blood and urine cultures. And, actually, the urine has been free of the ketones, proteins and blood we were worried about! They are giving him one IV antibiotic and they are also going to start IV Fluconazole, an antifungal, for a little bit of Thrush. They are also going to start looking for other fungal infections. They have done some blood work which will take days. In a day or two they may order more, and they may also order a CT to check look for any signs of fungal infection in his sinuses or lungs. Kinda crazy! Esp considering he is really looking pretty well. However, he is not really eating much here. Poor kid is "just sick of being here". He misses his dog and taking her on a walk:( He doesn't tend to eat well inthe hospital. Despite the fact that we spare no expense on his requests and keep Aimee running to stay on top of his demands. He is picking at bites of chicken, nibbling chips and salsa and taking in an ounce or two of smoothie.

Kevin has been here since last night, I'm swithcing out and going to be with Elle tongiht, get her to her last soccer game tomorrow, and then we'll both come down. Thanks to Claire and her fam for taking in our girl on a moment's notice.

Stem cell harvest remains a possibility. But, we are actually also discussing the possiblity of giving Hans his last tiny bag of stem cells back to him if his counts don't recover. Our doctor thinks they will, though, next week. ICE is tough stuff. The only solace is that we can visibily see that it is doing something to the tumor in the Lymph Nodes.

Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's gone up over $8,000!
And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to the CNCF in honor of Hans' "Five Year Campaign". (I'm only going to hit you with this stuff for one more week:)

Still here

Hans and Kevin trying on their costumes back in August!
Hans and Honey trying on Halloween Costumes, with Uncle Dean

So, I figured I'd at least post pics of the try-on sessions. I didn't get to even see Elle try hers on - that'll have to change!

Hans is still inpatient. He's still got fever:( It was getting better, but he JUST NOW spiked another 103.2... Yuck. His ANC is taking quite a while to recover...in fact his white blood count is so low that he doesn't even have one yet. He is not eating, and he's
having low Potassium issues. It's like a trifecta of bad factors. His mouth sores are bothering him, which plays into the not eating. He has some new issues too. His urine is showing a few things it shouldn't be... blood, ketones and protein. I guess they are keeping a close eye on him. They've upped his fluid intake. He was sitting up yesterday doing another HUGE Lego Set. (Thank you Santa-Daddy.) Kevin's becoming such a spoiler I think I'm just gonna start calling him Santa;) He was awake all day playing and doing a little set, but as soon as he finished, the fever spiked and he is now resting/crashing. I don't even think I mentioned that he needed a blood transfusion as well as the platelets the other day...

I really just don't know what to say about the stem cell harvest. Might not happen this time around. We are not making counts and he needs to get better anyway. We shall see.

In some really remarkable, fabulous news, Hans got a clean bill of vision from the Opthamologist this morning. I actually heard them chuckling and practically high-fiving out in the hall after they examined Hans. His vision is 20/20. The physical eye exam was as if nothing ever happened. For a recap, early this summer Hans had fast-growing, terrifying, large bumpy NB tumors growing up and out of his skull, as well as tumors pressing into his brain. These tumors caused pressure on the optic nerve which resulted in double vision for about two months. We treated Hans with 20 days of radiation and some three rounds of Irinotecan Temodor and the tumors melted away. It was truly remarkable. "As if nothing ever happened."

I'm going to thank and repost. That's what I'm all about for the next week or so. Thank you kind donors, friends, family, and friends and family of friends and family! You have posted more than $7,000 of support for Hans' Journey to the CNCF. Thank you. Check out his park here. NB families can open a park of their own, if that's your cup of tea. Thanks for visiting Roxie's Scarf It Up! and ordering those scarves. 15% of internet sales thru Nov 10th will go to Hans' Park. She is really pleased with the number of orders coming in. Thanks all around. At times like these, when we have spent 54 of the past 108 nights in the hospital, it just feels good to feel your support!

Halloween

Whether we like it or not, We are where we need to be today. Hans has had quite a couple of days. That ICE really caught up with him. Hans has been admitted and he not only received platelets and blood (thanks again, donors!) he had a Nasty reaction to the platelets. He broke out in hives all over. It was a mess. He had been bleeding out the nose all day from low platelets, then the hives, then a number of bruises all over his little body with such low platelets. He has big bruises just from where he scratched his hives. A couple of days where we really feel like we are back in the trenches. Gosh. Just stinks when we've been literally counting down the days to Halloween since at least August. We had ordered Kevin a costume to match Hans unknown phantom, we'd picked Honey up a bat man costume, and Elle was all set as a flapper. Oh well. We are where we need to be, like it or not. Hans has continued to have fevers as high as 103.3 just now.. There is good news, there is a silver lining. The lymph nodes feel noticeably, significant smaller on both sides. It is incredible. How strange it is to have this visible, palpable disease. We could watch it grow before our eyes from the size of a lentil to the size of a golfball. Now we are watching it melt away. It's more like a gum ball now. Wonderful! With any luck and hope we won't have to do many more rounds of this ICE and we'll have him back on a much more reasonable, manageable, less harsh therapy!
Tonight we are ignoring Halloween...and cozying in for a night of burgers and fries with Aimee and kev and Elle. Sooo sweet that they are all here to pretend it isnt Halloween along with me and Hans. There is plenty of candy though, of course.

Back in'jail'

We were probably counting our blessings to be home for seven nights. But a lowgrade fever and a bloody nose bought us a night at chla. We r in the ER now. Platelets are 5. ANC is 180:( I hope to do some fast talking and break us outta here tomorrow for some trick or treatin! We shall see. Hans is getting anti bs now and is about to get platelets. He needs them, that's for sure! Thank you to those who donate blood and platelets. That's a special lifesaving gift. Thank you. You can imagine how we feel to be here, the night before Halloween. Hans calls it jail or prison. I just hope that the chemo is doing the same number on the tumor that it's doing to the counts. Until Nov 10th I'm pasting this message up, again and again. Other NB kiddos can open their own parks up as well. It's a new program...just now up and running:).
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of it!

Stem Cell Harvest Breakdown

Hans is still at home, hanging in there. Yay! His HGB was 12.8, ANC 640 and plts 35 when we were at clinic Wednesday. He is getting "hot hands" which is sometimes I think the first sign of a fever, but sometimes not! We are crossing our fingers and hoping and praying we get away with a full Halloween Weekend at home! He is trying to eat, eat, eat and pack on some of the five plus pounds he lost during his last inpatient stint. It's a little tricky with one big mouth sore from the chemo:(

So the onc went over the next two weeks with me. We are going to "try" to collect stem cells next week. This is a big deal. We harvested stem cells back in November of 2006, but haven't attempted them since. (Stem cell harvest works best after some pretty hard chemotherapy agents.) We have one small bag of stem cells left, but it's not really enough for a full rescue. When kids get a hard core therapy such as MIBG or really high dose chemo, they sometimes need their own cells back as a rescue. If kids don't have stem cells in the bank they aren't eligible for certain treatments. Stem cells are liquid gold. They give these kids options. So, we want to collect the cells for possible future use! We are going to start injections of Neupogen shots all weekend and then we'll start going to CHLA on Tuesday. This is how it works. You go in EARLY each morning, like 6 or 7am, under the presumption that you could be going into surgery each day. The first thing they do is check his labs. He has to have an indicator that his stem cells are mobilizing - the CD34 number we are looking for is at least 7 to 10. Our Doc isn't at all certain Hans' cells are going to get there - due to the total amount of treatment he has seen over the past 5 years. If the number is too low on Tuesday, we'll go up to clinic and get a special injection of a medication called Mozobil. I think this is a new cell growth stimulant. We keep coming back each day until we hit the magic number of 7 to 10.
If/when we hit it, we go into surgery and have a pherisis placed in his groin/thigh. This is a special (big) line for the stem cell harvest. Then - it's up to the day hospital where his blood is filtered through a special machine and stem cells are magically filtered out, and the rest of his blood goes back to him. Kids also usually get a blood transfusion, they get Calcium and are at risk for Potassium dips. If we get enough cells on day one, we are done and the line comes out, if not, we are back the next day for more, and maybe the day after that... This is a rough, rough process. I talked to a mom back in Texas who had the opportunity to donate stem cells to her daughter (a different diagnosis) and she described it from her perspective. She said, it's awful. You just cry. You don't know why you are crying but you just cry. It is just that draining and exhausting.
That's what we're hoping for, it can go wrong at every step of the way... even if we go in and try to collect, we may not get enough cells for even one rescue. BUT, our wonderful doc says she has a good feeling about it. We will try. And I love her even more for trying! She did say that if it doesn't work this time, there won't really be a reason to try it again later.
Then, the following Wednesday we'll get a quick CT of the neck and have a meeting after. If the lymph nodes are stable or smaller (and if Hans makes counts), we'll do another round of ICE, if not, it's back to the drawing board. That's as far as we've got mapped out.
Thanks for your donations to Hans' CNCF Park! http://www.cncfparks.org/help-a-child/park/21/ check it out today, it's AMAZING. And, don't forget you can also Scarf it Up! for a cure 15% of Internet sales go to Hans' Five Year Campaign through November 10th. Thank you, everyone for your kindness and generosity. I read each tribute to Hans and he is really getting a kick out of that growing number!!!

Hi,
Wow - I have to say we're touched by Hans' Five Year Campaign Kick Off. I love it! Each little tribute makes me tear up a little bit! THANK YOU, if you haven't visited his site yet, please check it out here: http://www.cncfparks.org/help-a-child/park/21/ It's amazing to me. I have a 'secret' goal, and it looks like we'll get there!



For the next two weeks there's another way to donate to the CNCF in Hans' honor - by checking off a few items on your Christmas list! Hans' Godmama Roxie operates 'Scarf it up Santa Cruz' and she's decided to donate 15% of her jewelry and necklace scarf sales to the CNCF in Hans' honor from this weekend's crafts fair, and from her Internet sales for the next two weeks. www.scarfitupsantacruz.com
You can find her craft fair this weekend at:
From Pumpkins to Presents Gift Fair Saturday, October 29, 10am-3pm Cypress Community Church: 681 Monterey-Salinas Hwy., Salinas CA

Hans had an Office Visit today and didn't need blood! There's more to report from the OV, but I'll save it - I've gone on and on.

Thanks for checking up on us and thanks for contributing to Hans' 'Five Year Campaign!'

I also must thank aunt Susy for her Halloween artsy care package that kept us busy in the hosp, and Tracy for her special HEB care package. Leave it to Hans to miss the HEB (Texas grocery store) line of chicken noodle soups and kids shampoo and body wash, and leave it to Tracy to fill his order!

Five Year Campaign

Dear Friends and Family,

I am writing this note to mark Hans’ 5 year anniversary of his diagnosis: Stage IV High-Risk Neuroblastoma, 10/25/2011. In these 1,825 days Hans has had HUGE obstacles to surmount. Hans has not had one single day “off treatment”. It is quite remarkable that he has survived his disease and his treatments to this point. When Hans first relapsed in May of 2008, we were loosely told to expect about 8 more months with our boy. “Take a lot of pictures and go to Disneyworld.”

Hans didn’t give up and neither will we. We have kept him afloat by seeking out innovative doctors and novel therapies. Hans has endured 58 rounds of chemotherapy, 2 major resection surgeries, a stem cell transplant, three separate courses of directed radiation, experimental radiation therapy, he has participated in two clinical trials, and hopes to be eligible for another soon. Hans has suffered debilitating side effects including the loss of both adrenal glands and delayed bone growth. He has not been able to play on a soccer team or spend a solid month in a classroom since his diagnosis. As I type this, he has been in the midst of a rough progression of disease since summer. It is now moving through his lymph nodes and we are throwing big guns chemo at it in hopes of beating it down once again.

And yet, these past five years have brought love and joy into our hearts many times over. I’m sure we’ve been showered with 10,000 hugs and kisses from our boy in these years. We’ve found joy in loving each other, our family, friends and our pets in the best way we can, every day. We live in the hope that Hans will get to see the day he can be cured from his NB. As you know, that cure is yet to be discovered, research alone will unlock that mystery.

Since our son’s fateful diagnosis we’ve seen our friends, family and community come together with two incredible tasks. As a family, we were supported by the Run for Hans, Sparrows for Hans, and a near 1 million-mile airline miles drive. We’ve always paid it forward and have tried to outmatch the support we have received in contributions for research and education. While in Houston, we worked hard with a group of NB parents and our good friends to establish bake sales, lanyard sales and yard sales which have brought in more than $100,000 for the Children’s Neuroblastoma Cancer Foundation to date. In this economy research funding is dwindling from the federal government and corporate donors. Increasingly, it is parent-led efforts that fund life-saving research. We are tasked with asking you and motivating you to donate.

I feel we are on the cusp of great change in the treatment of NB. I believe an exciting zeitgeist is building as researchers around the country and the world attack the problem of this devastating disease from every conceivable angle. Doctors in New York are developing nanotechnology to target NB therapies, doctors in Michigan are making personalized medicine headlines by targeting therapies specific to the genetic makeup of each child’s NB tumor. A child with NB was the first human child to receive an Oncolytic virus in hopes of obliterating this disease. Doctors in Boston are rolling out a legitimate attempt at a vaccine to prevent Neuroblastoma relapse. We are making new ground as immunotherapy has become the standard of care not only in frontline therapy, but a brand new trial is opening in Philly this month for children navigating the landscape of relapse as well. Our oncologist in LA is working on opening more immunotherapy trials for relapsed kiddos soon. With all these improvements coming from different sources, I can feel that a cure could be at our fingertips.

Please honor Hans and his valiant fight against Neuroblastoma by making a donation to the CNCF today, copy/paste this link to Hans' CNCF Gifts of Hope Fundraising Site. http://www.cncfparks.org/help-a-child/park/21/ Any contribution is wonderful, even $5. It just feels good to see the names of his supporters go up on his site. It’s evidence that his story has moved you and that so many people still care. Thank you for making our dream (having a boy that simply gets to grow up) a reality. Your donation is tax deductible. Feel free to share this letter with others who have been moved by Hans’ journey.

With great Love and Hope,
Lara, Kevin, Elle and Hans Weberling

Hello From Home

Hi -
Just a quick note to say that we are home! We are feeding and feeding Hans and making him drink and drink and drink -hoping to protect his bladder - flooding him with iced water, Cranberry Raspberry juice and even Mt. Dew! Hans is a little fragile looking. He hasn't been weighed lately, but he looks to be down about 5 lbs from that last round. Kevin is working on getting the floors done in his favorite hang out room - that's something to look forward to. Hans got to take Honey on a quick bike ride/walk last night. So great! He actually even had a quick school lesson today from his new teacher, Mrs. James. This has actually been his third session in as many weeks, I've just failed to mention that he got started with all the other excitement.

Grandma Stephanie and Uncle Dean hit the road to LAX to get back up to Seattle today.

Hans goes back in for labs and an Office Visit Wednesday. He is also slotted for a possible blood transfusion. We shall see. I'm excited and even a little freaked out to say that he is slotted for a stem cell harvest on 11/01 and 11/02! Wow. Anyone who has been through it knows what a trying experience it is. It just WIPES YOU OUT, but at the end of two days, you could have these little bags of gold that could rescue you from the most risky treatments!

Tomorrow will mark Hans' 5 year anniversary of this awful diagnosis. So, tomorrow, I'm going to give you an opportunity to make a donation to the CNCF in Hans' honor. I'll share a letter with you tomorrow, and a link to Hans' new CNCF Parks fundraising page. I'm excited about just a little bit of good being generated from our rough situation.

Our dear friend Roxie is going to do a neat fundraiser as well. She's going to contribute a special percentage of sales from her "Scarf it up Santa Cruz" Sales to mark Hans' anniversary. More on that in a couple of days. You could get a jump start on your Christmas list and help fund a cure.

I'd like to say thanks to our special Lego Fairy from the north! Megan, Republic Frigate is amazing!!!! xoxox

One more Disneyland Pic

Hi,

I had to post this pic of my uncle dean and I on that same roller coaster. Fun!

We are about to get discharged. Now the goal will be to stay home as much as possible. We'll see how that goes. ICE has a way of knocking kids counts down and making way for fever, rehospitalization, transfusions. UGH. We'll see what happens. Hans is soooo ready to go home and to eat his home food (spaghetti tacos ala iCarly, Costco rotisserie chicken, cheese dip, etc)! I think I got it mixed up the other day, the right side that they biopsied is much improved, and the left side doesn't seem to be much smaller. The chemo can keep working after it infuses though, so here's hoping and praying.

Thanks for checking up on us.

Day 5

We had a big fun day at Disneyland. Hans was doing well and hanging out with his daddy...with special drop ins from Roxie and Aimee, so I felt okay about heading out to Disneyland for the day. It was so fun to see Elle and Claire and Dean enjoying the park! Elle has just started riding the big rides, but as you can tell from her classic pic, above, that she finds them terrifying!

Hans did great yesterday and last night but this morning he has had a headache:( There are 600 reasons for headache, so I am not freaking out about it at this point. He did have to take a little dose of IV Morphine when the Oxy wasn't cutting it! I'm hoping that this just goes and doesn't come back. Last night of the ICE chemo tonight. We honestly don't know how many rounds we are doing of this chemo. We will see how he does and we will see if we can collect some stems cells. Our wonderful doc is setting us up with some home health to come for labs! When Hans heard that he started laughing out loud! Like he was getting away with something! I think he also actually shed a tiny tear. This is a kid that has spent too many days in the hosptial... by my count he's spent at least 45 out of the last 90 days inpatient:( He has had a bit of a rough time with that. He has been saying "I'm just tired of being here. I miss taking Honey on a walk."

We hope to get discharged tomorrow. BUT, we're well aware that pain, fever or some other negative effects could detain him. We are hoping that is NOT the case.

Day 3

"Listen to the Mustn'ts,child,
Listen to the Don'ts
Listen to the Shouldn'ts
The Impossibles, the Won'ts
Listen to the Never Haves,
Then listen close to me --
Anything can happen, child,
Anything can be.."
- Shel Silverstein

I'm thankful to my parents not only for teaching me how to love unconditionally, but for keeping me in Shel Silverstein poems throughout my childhood. I'm sure these poems are partially responsible for parts of my personality and my outlook on life. This is a poem I am thinking of often and fondly as I try not to gaze too frequently at Hans' bulging lymph nodes. It appears the left side is improving, the right side, not so much. We will give it time.

Happy to say that last night Hans did even better than the night before. We were prepared for the number of potty wake-ups, and that was the big deal. Dr. Marachelian is giving Hans a whopping dose of decadron that not only covers his adrenal insufficiency but protects him against nausea. Hans says that it's smart to run it over night so he doesn't get sick during the day.

Our cup runneth over with visitors and love. Grandma Kathy flew home this week - thanks for coming! And Roxie has been here. I'm going to have to get her a cute driving cap and gloves for all her chauffeuring. She has been taking on the Popeye's and Taco Bell runs that are usually Aimee's domain, and she's fetching the grandmas to and from the airports of LA. Tonight we'll have my mom and Uncle Dean join us, and Kevin, Elle and Claire will come down from Bakersfield. It's hopping. We're planning for a field trip to Disneyland tomorrow, just not sure how many are going. Hans is okay with missing out on the outing. He's holding out for the Nick Hotel in Orlando. Do I have the only kid who could pass on Disney??

Day 2

Hans did fine through the first night of his chemo. The ICE combo includes: Ifosfomide, Carboplatin, and Etoposide. One of these chemos can be harmful to the bladder, so we are making sure that Hans gets lots of fluids and that his urine isn't very concentrated. He is also getting a drug called Mesna around the clock to protect his bladder. There is a lot of action and excitement in here, the chemos each run one hour, they are followed by a flush and they have to check his vitals frequently, like five times in an hour during the Etoposide, all over the middle of the night. That kind of excitement. He didn't get sick, he actually said, "This magic water isn't so bad!" We'll take it one day at a time and be thankful that today is a good day. He had one problem - - wasting glucose in the urine, which bought him finger sticks all day long. The worst of it was all the interruptions and having to pee all the time throughout the night. His glucose has been fine ever since. He is also at risk for a little more hearing loss:( In optimistic news, our onc has suggested we try a second stem cell harvest after this round.

As for me, I am keenly aware that I have a glorious job in loving this boy. Ever since Hans was a new born baby, each time I hold him, I think 'this is what my arms are for.' I am glad I have these two arms. I am glad I have this boy to love. Kevin has the job of providing for him and spoiling him rotten which he does expertly. Elle has the job of treating like a completely normal brother... a sibling mix of teases, competition, play and love. We've got it pretty good.

ICE

The news is not what we had hoped for. It seems Hans' little lymph nodes are just filled with Neuroblastoma. The right side seems to have stopped growing but the left side is getting bigger with disease.

Our oncologist got the official pathology today and worked up our options for us.
We have opted for a big guns chemo combo called ICE. ICE is a combo of three chemos that should hit Hans' system pretty hard and we hope the NB as well. He will start this chemo tonight.

It is a pretty somber night for me as I lay to rest my hopes of some treatable infection. We will switch gears and try to get a handle on this runaway train.
Oh, my baby. Please lift this little boy up in your prayers and lavish him with loving thoughts of successfully beating back the beast within him once again.

1254 pieces of fun

We are whiling away the hours with a 1254 piece Millennium Falcon lego set. UNfortunately it only helped him while away 24 hrs - he's too fast! We all say he needs a sponsor to support his Lego habit. You can see a little bit of his nice soft hair here, and the rim of the bald spot left from his summer radiaition treatment. They said it should grow back in but that it will take months:(

Hans seems to have recovered from the biopsy just fine. He is NOT complaining of pain anywhere, anymore. (I had wondered if the procedure itself would relieve pressure.) We are stepping down the Oxycodone hoping to wean. We have to wait until Monday for biopsy results.

Hans is just now starting to get an appetite. He hasn't really eaten much since Wednesday night. Five of us (Me, Kev, Elle, G'ma Kathy and Aimee) have been here this weekend keeping him company. Grandma dec'd out his room for Halloween. Us girls stayed at the Ronald last night:)

Thanks for checking up on Hans. I will post tomorrow night or Tuesday morning. We hope to have both biopsy results and a treatment plan!

Lara

biopsy today

I'm sorry to have kept you waiting...I just know how everyone worries
about these kids between posts. I know because I worry about all the
other kids between posts at these scary junctures! Hans has been on
iv antibiotics now almost 72 hours. He does seem to be getting a little
Better! He can move his head better and he is using the pain meds
and hot pad less frequently. Two of five viral tests have come back
negative. We are waiting on the rest. Hans will go into biopsy today.
The surgeon feels better about going in now that he has been on anti-
biotics for a few days. We hope to be able to identify whether it is
infection, nb or something else?? If it is nb we will have a sample
shipped to CHOP for Alk testing. The only new bad news is that Hans
did have one of his awful headaches this morning.,Gosh...poor kid:(
He also has to go NPO all day, as he is just an add on with no official
OR time slot of his own. I know there are 600 reasons for headaches so
I am doing my best to keep my fears at bay and remain my optimistic
Pollyana self about all this. Still hoping for the most treatable/resolvable
option to show up on that slide. All treatment decisions are pending
the biopsy findings and actually the treatments of those findings.
There is a big flow chart. Believe me. This kid will get some treatment
for the NB. And all sites are set for Monday. I'll post prior to Monday
if we get any conclusive results.
Meanwhile our little CA support system has sprung back into action.
Aimee is on food delivery and visiting, Claire and fam next door take in
Elle, and now G'ma Kathy has arrived for Elle duty. Kev and Elle and G'ma will
Join us here at CHLA soon, unless we can convince our team to try a weekend
discharge!. Roxie and my Mom and Uncle Dean come down next week... :)

Admitted once again

The surgeon surprised us. We thought we'd be hearing yes/no to a possible biopsy and perhaps yes/no to a possible additional removal of affected lymph. BUT no, when Dr. Stein examined Hans he thought it was more suspicious for an infectious process than a tumor! I guess he thought it has just changed too quickly and is too painful and sensitive to be tumor. He mentioned a few tests he'd request. He and Dr. Marachelian consulted and he recommended we get admitted right away for IV antibiotics. Hans has rec'd the first dose of his thrice daily antibiotics. Infectious disease team has been summoned, but we've not seen them yet. How could this happen? Well, the PET and the CT showed something...the MIBG did not. Perhaps the something was an infection misinterpreted as tumor? Or, perhaps there is some necrotic tumor that has become infected???
I guess the plan is to see what happens with a day or two of antibiotics on board. He's not had fever and has had normal blood counts (still waiting on todays labs)... Dr. Marachelian said "I'm not ruling anything out!"
We shall see. I'm hoping it's the most treatable of the options. Elle freaks me out watching Myserty Diagnosis and I know there are some infections you wouldn't be wishing for.
Meanwhile, I'm glad I packed for days for a surgery consult!

Thanks for checking up on us. I'm hoping to be putting another entry into Hans' miracle chart.

Made it through the weekend at home

Hans' neck has sure been bothering him. The lymph nodes are enlarged, and they do light up with NB on the PET and I think the CT. It is scary how things have changed just since Wednesday. He is now in pain, using a hot pack or ice pack and Oxycodone around the clock. He has somewhat limited mobility. He can hardly turn his head or lift his arm on the right side. By Friday night we were thinking we wouldn't last the weekend at home, but we did. We have a surgery consult tomorrow first thing in the morning. We are simply anxious that he get on the new plan, and we're hoping that we and the docs are led to the next perfect move for him. Our options remain - - nothing has been finalized.

If ever there was a time for prayer of the next perfect plan for him, this is it. To me, it seems like it's crucial to get this next choice right. Hans has always bounced back and responded before, but I find my self asking "How many miracles are we afforded?" Roxie says, "You can't count them, miracles are limitless!"

The rest of us are hanging in there. Elle is enjoying her soccer team, she's playing "recreational" this season so we actually get a bit of a break from the schedule, travel and the pressure of competitive soccer - it's more all about fun and exercise - which is good. She even got a hat trick (+1) last weekend - scoring FOUR goals! It was exciting:) She's getting adjusted to life at the new school just fine.
Kevin LOVES his job and his worklife here - it is truly living the good life to be a California Geologist! I wake up each day and I figure my first job is to do whatever it takes that day to beat the NB. The rest of life has to come second right now. The weather here is gorgeous so we've been enjoying our walks, bike rides and park time! I was obsessed this weekend with a few things, getting b'day cards, presents ordered and in the mail, getting Elle a winter coat, getting her Halloween costume ordered. I feel like, I'm home now. I can do this now... let's get it done. Even going into something like a surgery consult in the morning, you just don't know what will come up and whether you'll get "detained" and when you'll make it home. I could be home tomorrow night, or 17 nights for all I know! I'm packing for a few days;) We are so lucky to have the neighbors on constant call for our girl!

Thanks for checking up on us and thanks for your thoughts and prayers for our gorgeous boy. I'll keep you posted once we nail down a plan.

Lara
PS - Hans' 5 year anniversary of diagnosis is coming up. I plan to do a CNCF fundraising email/blogger/facebook campaign. I could use a boost, and seeing all the names that are rallied around Hans, while bringing in crucial research and education dollars, will surely help!

MIBG, MRI done, CT tomorrow

We've been down in LA for two days. (Thanks for the hospitality Aimee!)
Hans has had an MRI, labs and an MIBG scan. We'll go back tomorrow for a CT scan too.

We've got some pretty good news. Stable bony disease in about three spots, spine, pelvis and head with great improvement to the head from the midsummer scans. We are concerned about some very bulgy lymph nodes at the neck that are suspicious for disease.

We'll be moving off Irinotecan/Temodor, not because Hans progressed on it, but because it wasn't doing enough.

We are debating our options. We are looking at some of the NANT trials and are strongly considering an antibody/immunotherapy.

We have about a week and a half to make our decision. Hans will possibly have a BIOPSY of the lymph nodes on Monday. We are considering some other options like radiating the spine. Unfortunately, you can't often use radiation while on a trial.
We're working on all of that.

Ultimately we are thankful that we didn't get bad news today. We are thankful that Hans still has "a lot" of options.

Hans is looking forward to some good family time. Grandma Kathy is coming down next week:)

Dark of the Moon

This is fun... our main objective is picking up Transformers 3 Dark of the Moon out today on DVD. Hans got to see it with my dad (Grandpa Oscar) this summer, but it'll be a first for the rest of our gang. Hans LOVES this series and the toys that go along with it - so this counts as big fun in our household.

He has been holding his own over the week at home. He has had maybe two small complaints of pain, but they are not in the same spot. As instructed, though, we have been dosing him around the clock with a low dose of Oxycodone until we get to scans next Tuesday and Wednesday. The 1:30am and 5:30am doses aren't too fun... but beat the heck out of living in the hospital.

We are getting closer to having a teacher come to our home for second grade instruction... we hope to get him started next week.

That's the scoop for now. Nice to have these whole weeks at home... incredible.
Thanks for checking up on us.

Home again, for birthday night!

Hans and Elle at home...Hans STILL won't smile for the camera...argh!


thirteenth birthday shot with her dad

We are home! Hans' pain is being controlled on oral Oxycodone. It's really a low dose, around the clock. They weaned him slowly off the continuous morphine drip, and then off of the pump. We aren't really sure the cause of the pain... the way I understand it now - when they put the PET CT, MRI and MIBG together - there are spots of disease on a couple vertebrae, the sacrum, the pelvis and a bit on the head. It is all bony spots, no soft tissue disease. There is no disease in the area he is complaining about, and there is no new change in the disease??? So, who knows! Maybe it'll just get better and go away - kind of like his arm about two years ago??? Who knows! We'll take a mystery over a disaster any day. For about a day and a half there we had misunderstood the attending on the floor, and we actually thought he HAD progressed per the PET... but we hung tight and went with our onc and the radiologist's impression - no new disease.

Kevin and Elle drove down to LA Friday night and we switched out. Elle and I ran around town Saturday and spent a girls day... soccer game, shopping, dinner and a movie (Abduction). Fun mommy daughter date! I was incredibly happy just to be at the soccer game... outside...even if it was a 2:30 game at 102 degrees! I was hoping we'd get Hans home soon and we did.

Sunday we drove back down to LA and before we picked up the guys, met Aimee for a b'day shopping splurge for Elle, our now Teenage Daughter, and a nice lunch! It was a good way to make the best of a less than perfect birthday with a brother inpatient. Kevin and Hans were discharged as soon as we finished lunch. We picked them up and went HOME!

Hans continues to show nothing but optimism and faith. Every single time he gets sick or has problems he looks to his doctors to make him better. Repeatedly, in the hospital, Hans sits there and does each procedure like a little pro. Our ER nurse told us "That's the easiest thing I'm going to do all night" after he accessed Hans' port. We heard it all week long, "Why can't my other patients be just like you, Hans?" He is so serious and mature!

We were watching our favorite show together one night last week - King of the Hill (it's the one show Hans and I equally like, I think it's our Texas show). In this one episode, Hank (the dad) was afraid to go to the doctor. Hans laughed and laughed at that! He looked at me, and just couldn't get it, he went on and on "Doctors aren't scary, doctors are nice, doctors only want to help! Doctors are your friends! How could Hank be scared of Doctors?"

Great news for now...

I'm so sorry to have kept you waiting. We just got both results and reworked our plan.

The PET/CT was consistent with previous scans, showing no new lesions and actually significant improvement to the head.

Both bone marrow aspirations and biopsies were negative for disease!! And Dr. Shimada was reading them this time, so my confidence is pretty good in these results.

This is truly amazing news compared to the possibility of a dangerous new progression. Ugh. I was a real mess for a couple days there..

The cause of pain is currently a mystery. Hans is still on IV morphine to control it.

We are starting round three of Irino/Temodor tonight. These docs and our NP are so compassionate that they have compressed the five day dose into four days and we are optimistic for a Sunday discharge (on an oral pain plan). Sunday is our bright and beautiful Elle's 13th Birthday. Ahhhh.

We are going to add the bone building drug Zometa into the mix this next round.

We'll likely scan the week after next (MIBG, MRI) and we aim to go onto a new trial breifly and dream of then catching a spot on the ch14.18 immunotherapy antibody trial ... But I dont't want to future trip too much...that obviously doesn't work out too well for me.

Thanks for hanging in there with us. We need all the support we can get on this wild ride.

180

Well, I have put off this update for 48 hours because it is not a fun one to read or write. All was going well...and then...Hans started to have some back pain on our way down to the Dodgers game. We made it through the game and stayed in LA. The back pain got worse at midnight Friday night and by 5 am Saturday the lower back pain couldn't be controlled by his oral Oxycodone.

Sooo....we've been inpatient since then. Right now they have him on a morphine pain pump that seems to be taking care of the pain. We've had a couple of different action plans since admission, but the present plan seems to be: CT and bone scan today, bone marrow biopsy tomorrow. It seems we'll possibly postpone therapy as we await this new disease evaluation. Hans is also pretty constipated, so we are working on that. It could certainly account for some of the pain...

Oh, I wanted to share that the TCH bake sale brought in 2650 for the CNCF! Yay. Thanks, ladies.