So far the ABT goes down relatively easy. There are a few side effects that pop up... Hans can be a restless sleeper and he also says that his legs feel tired or sleepy. Both Neuropathy and Insomnia are possible side effects of the ABT. We are also starting to see that there is an emotional component to it for Hans too. It's just hard to tease apart, what are normal 5 year old behavior issues, and then what are drug related, possibly stress dose steroid related, or other issues! Hans used to have tantrums... but these days, when he has an episode, it can turn into almost total withdrawal and it's a little scary b/c we don't know if he's having an adrenal crisis! Or, is he just playing us??? I guess we'll never know, but it all keeps us on our toes, but so far, we see no reason to stop using this drug. I just wanted to put all of that out there for other families considering using it, or who are already on it.
We are now less than 2 weeks away from scans. I've been flipping back through the blog and I'm awed by where we were one year ago (at original relapse), and even more so, awed by what we were going through 6 months ago (the MIBG therapy in Philly which was really rougher than we'd bargained for). But really, the biggest surprise is where we are right now. Things are relatively calm and normal. I have learned that the only need us in clinic once every three weeks. The oncologist effectively told us we can go get a life! It's a funny transition - coming off regular clinic visits. It's good, but yet it is an adjustment. I think, on some level, I associate going to clinic with keeping Hans afloat - so coming off of regular visits is good and weird at the same time. But, in the mean time - we are keeping busy!
One bit of good news is that Hans' Potassium has stabilized and he has been off his supplement for some time. This is a huge relief, we weren't sure if the kidneys weren't a damaged to the point that he'd always need to supplement his Potassium...
Elle loves going to this Rice Soccer Camp with her pals Kae and Kelly. It's such a pretty campus that I almost think it is worth the 40 mile drive (it's right by the med center and TCH). But it is soooo hot here 94 degree highs with high humidity, that I feel a little crazy for sending the girls out in this heat. I think it's very cute that the campus busses read, "Have a Rice Day!" Hans and I have been making the most of being down in the Museum District area. We've been back to the zoo, and to Rice Village... and once we are back in The Woodlands, we swim, and Hans jumps off the diving board and slides!!! As for Elle she is doing well learning Baton Twirling on Wednesday nights, and she has her last Volleyball game of this season tonight. I am providing Pink Cupcakes for the little party. I think I was somehow inspired by Chloe Castillo who would have turned 10 years old tomorrow.
That's the update for today. Thanks for checking up on us!
- 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.