Hi, we are all reunited back at home. We landed and got home and I ran back down to get Elle. And, we're already right back in the fast lane! We got home, started to unpack and do laundry, and then I got on this clean the fridge kick. It felt good and we went shopping and filled up the clean fridge:) Two meet the teachers tonight. Soccer tournament all weekend! School starts on Monday! And, we still need to get school supplies and new cleats. I would sign right up for a couple more weeks of summer if I could.
Dose Reduction - we discussed this with Dr. Maris. He just felt that since Hans' MIBG is still positive and not negative, and the Rounds where Hans' side effects are really terrible are less frequent, that he wouldn't reduce the dose. That was okay with us - we just wanted to talk it out. The interesting thing is that Hans is really on the cusp with this dose. The dosage is prescribed by Hans' height/weight ratio. They said that he had lost a tiny bit of weight since the last office visit. And, actually, if he had weighed in at even 0.1 kilograms lighter, he'd be on the 50mg dose! So, essentially, as he packs on a couple pounds, the dose may not hit him as hard...
Scanning Less often or, 'Spacing out Evaluations - Dr. Maris mentioned the possibility of this a couple scans ago - but I think he actually forgot! He wants to stick with the scan schedule as written in the study (every 6 weeks, rather than every 12 as we have been used to during other times in treatment). I guess that's fair enough. However, this is Hans' favorite issue. He did ask Dr. Maris if he could start coming up to Philly every 80 or 90 nights, rather than every 40 nights. Poor kid. I think this business traveller thing at 7 IS starting to get old.
I'll talk more about school next time. This is one issue that proves to be difficult for us! argh...
Thanks for checking up on us.
What's cool on the Hans radar now? A new dollar sign necklace (thanks cousin Brandi), berries - raspberries and blackberries, chicken, chips and salsa, lemonade Kool Aid. Still Big Time Rush, Uno Spin, and Lego Harry Potter. And of course Nickelodeon. Whenever we stay with someone, or get a hotel, it's all about --do they have Nick??? A lot of times the hotels don't.
- 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.