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
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'!
- Hans Weberling
- 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.