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.

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'!


Will's Dad said...

My holiday wish this year is that both you and Hans get what you want.

suzanne said...

hope things work out as planned!
Christmas according to Hans would be nice.


Kate said...

Hope this next treatment step is the MAGIC bullet and so thankful that the ICE rid the lymph nodes of NB- that is amazing!!! Praying for Hans and hoping you all have a wonderful Christmas at home and together.

Anonymous said...

We are praying for wisdom for the doctor and for all of Hans' wishes to come true! Love you guys! You are always in my thoughts! Cindy

Anonymous said...

Prayers for the perfect treatment plan...and a wonderful Christmas holiday at home!

Love and hugs,
Aunt Holly and Uncle Michael

Anonymous said...

NB is, indeed, a puzzle!

May the miracles of love, modern medicine, and will continue to prevail, making the most effective treatment clear to find Hans at home for Christmas!

Sending BIG love and hugs,
Aunt Susy

Belen Carrasco said...

please don't rule out the amazing trials of dr. sholler in michigan!!! we attribute her trials to giving ylaria another whole year beyond what docs expected! she has dfmo, nifurtimox (amazing results) and the personalized medicine trial where she tests out a variety of therapies on nb cells taken from bone marrow extracts to formulate a personalized plan. she is VERY familiar with mixed response results. she is extremely compassionate and caring and kind and wonderful. i highly recommend you send a copy of hans' records to her to see if she'll take him. praying for you guys and thinking of you everyday. hans WILL beat this!!!! we will NEVER give up hope!!! love you!