About Me

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Bakersfield, CA, United States
Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.

Friday, December 30, 2011

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!

Wednesday, December 28, 2011


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!

Saturday, December 24, 2011

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.

Friday, December 23, 2011

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.

Thursday, December 22, 2011


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.

Wednesday, December 21, 2011

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:)

Tuesday, December 20, 2011

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.

Saturday, December 17, 2011

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:)

Thursday, December 15, 2011

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'!

Monday, December 12, 2011

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...

Thursday, December 08, 2011

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.

Monday, December 05, 2011

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.

Saturday, December 03, 2011


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...

Friday, December 02, 2011

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!