Hans is now on the Aurora Kinase Inhibitor, a Phase II trial. I'll post a little more about it when I can put something competent together - it has been a long day, but dare I say, a good day.
Hans' bone Marrows and CT scans came back CLEAR! Alleluia! I was very happy about this - I had been bracing myself for worse news. We got the news this morning, and then found out the ALK study was temporarily closed today. We were hot to trot to get Hans on a med. We are not fans of leaving NB unchecked for long. We went with Dr. Maris' recommendation of this Aurora Kinase Trial. It's an oral chemo, he'll take it 7 days on, 14 days off much like the ABT. But, it'll be a little different, it's more of a counts suppressant than the ABT. He'll lose his hair and be at risk for blood transfusions:( Hans and I were both in tears over this today! It's just such lovely hair. But, Dr. Maris was cute, he explained that it'll grow back, but that his own hair wasn't coming back;) Hans should also be able to go to a lot of school, he just may have to miss a little more for treatment or stay home for home-bound work with low counts.
From Day 1 it looks like Hans might have some fun side effects on this drug, but I'm going to hold off writing about them 'til I see them in action for a couple of days. Mood-wise, I think it's going to beat ABT.
We were lucky enough to be at the RMH for it's annual Share a Night Christmas party and lighting ceremony. It was beautiful. They light one light for every donation they get throughout the year and the result is impressive. I got a few pics, but have no idea how they'll turn out. Hans has befriended a cool little boy named Chase, also 6, also facing relapsed NB. It was fun to see the kindred spirits playing together tonight.
In more good news, we get to go home TOMORROW! I'm ready for our little family to be reunited! I miss my girl, and Hans misses his dog. We both miss Kev. Luckily, my mom is still there too, helping get Elle to and from her one million adventures and commitments. I swear, she seems as busy as you'd think an 11th grader might be! She has had a ton of homework and projects due. At this rate, what will 11th grade be like - she's only in 5th???
I'd like to thank everyone for their thoughts and prayers. Thanks for the encouraging calls, texts and emails. And thanks to my girlfriends Aimee and Tracy for care packages sent to RMH. Hans was SO excited to receive packages here!
- 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.