We just got back from our appointment with Dr. Maris. The read on Hans' MIBG was 'stable disease'. (I actually don't think I've ever had this news to post before, this means that the disease load is just about the same as it was six weeks ago at the last set of scans - no larger, no smaller.) "Stable is Good" is a mantra I've long heard NB families repeat, espcially since bony disease has a way of getting out of control. At least we are not dealing with progression. At least we are controlling it, at least for the time being. Dr. Maris actually told us that he has to assume that this drug is working for Hans b/c it would most likely have spread if it wasn't being controlled. The plan from here is to go home, do two more rounds, and then come back up for a more comprehensive set of scans... Bone Marrows, MIBG as well as a head and chest/abdominal CT. It's not that he assumes the NB is lurking anywhere else, he just wants to be sure it isn't since he doesn't trust this disease. At that point we'll decide which way to go. He said that even though the Millennium trial is written in a way that you could stay on it for two years, he's not sure that you'd really want to. He said it was different from being on the ABT-751 in that way. We shall see.
I'm not exactly overjoyed with the news. I can't help but want shrinkage and ultimatley clean scans. But, I guess we can put the spin on it that at least the disease is stable, especially considering that we were delayed one week with both Rounds 4 and 5.
I guess we'll keep our nose to the grindstone and do everything in our power to prevent additional delays.
I guess we'll try to maximize joy in each day as well all should be doing.
I guess I will pray very hard that this disease will continue to go away.
I'm not one to look at scans usually. I actually just like to visualize them as clear. Today I asked Dr. Maris to show them to me. I want to know where to pray. I know we've said that there was one spot on the skull, but we actually learned that there are two. The second spot has been there since December, it was just unreadable until it showed up consistently on scans since then. There is one small spot on the top of his skull, and the second spot is on the left side of his head, above his ear. They are both faint, but there.
All in all - I think we have to put today in the good news column. Hans is doing great, looking great. His biggest problem right now is an ANC of 312! Great number to be boarding a plane with, huh???
Thanks for checking up on us and thanks for your thoughts and prayers, good vibes, and meditations! We take all kinds:-)
- 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.