Just got done with our Office Visit. The big news: CT scan Negative, aka normal. I swear I figured that was the case. Our techs cheered yesterday at the end of the scan. I didn't figure we got all that just for being good patients. The techs really aren't supposed to say anything, and I really try to NEVER ask or NEVER interpret their facial expressions or anything. But it was hard not to read a little something into the cheering!
The MIBG was completed this morning, and it is still very faintly positive right on the top of the skull. Dr. Maris told us today that it is very difficult to detect the spot. He said that if he shows the scan to another doc (a resident) he'll say it's a negative MIBG scan. But he also said that since they've been staring at it so long now (10 months now) they can detect it. We talked about what's next... and he is so strongly pleased with where we're at he's pretty much recommending that we stay the course with this med for up to the full two years or 14 more months/or 21 more rounds or so... He actually seems to think we are going to clear the spot if we keep it up. He is happy with the result thus far!
We are hanging out in the waiting room waiting for our next dose of MLN8237. One of the nice things about being on a clinical trial like this is that the medication is prepared in house, just for your child, and it's handed right to you. (Oh, and it's free, which is nice! But, really - that's the only thing about a clinical trial that is free - the rest of it goes through your insurance just like any other therapy. I think I used to think the whole tab would be picked up by the trial. Not the case, which is probably a good thing - keeping costs of trials down.) Sorry about that tangent, I get asked about that every once in a while so I thought I'd throw it out there.
That's about all for now.
Thanks to Kelly and her family for taking care of Elle in our absence, and thanks to Michelle for taking care of our animals!
Peace, Love & Cure,
- 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.