I've been putting some miles on our VW this week. Gosh - so far this year I have been to LA to drop off my mom and then pick up Elle the next day. I did get to have a little fun on a night out with Aimee. We've been up and back to San Francisco, with a stop over in Santa Cruz. It's about 350 miles b/w LA and SF and Bakersfield is on the south end. We'll keep it up over the next couple of days with scans in LA on Thurs, Fri and Mon!
My mom is back home and back to work. Kevin completed his century through some strong winds and 7,000 ft of altitude climb! Elle has returned from her lovely Mexico cruise slightly tanner and more cultured;) Thanks, Kayla and fam!!!
UCSF is the closest MIBG therapy center to us. They reviewed Hans' chart and feel he is a good candidate for the therapy at this point. My favorite part of the meeting was when the doc said Hans "doesn't have that much disease". Our least favorite part of the meeting was the blow by blow of the foley catheter Hans will have to have placed for up to one week. Hans is seriously traumatized by this prospect. I can't say I can blame him. I guess my angle on it will be to keep an eye on him and decide if/when it becomes time to ask the team to medicate him for this anxiety. That is not the route we usually have to go, but I can't see traumatizing him, or deciding against this therapy just because of the catheter. I am also slightly traumatized by the set up of the room. MIBG therapy seems to be a universally uncomfortable unpleasant experience. IF Hans makes counts, and IF there is still disease on the MIBG or in the marrow, and IF we decide it is indeed the best way to proceed, we will do the therapy as early as next week.
Hans, Elle and I stayed the night in Santa Cruz with our pals last night. I wish Hans had been a little spunkier. But, the reality is that his trauma around the idea of this catheter had really shaken us all up. He had a tough time transitioning from treatment mode to vacation mode. We hit the road and are now home for almost 18 hours before we get back to LA. What a week! This has been pretty rough. On top of all the travel Hans is still WIPED out from the third round of ICE. He has very low plts of 4, HGB of 8.2 even after transfusion. Fine shape to be traipsing around the state. Thanks Megan, Phil and Desmond for hosting us! And, thanks Roxie for taking me to breakfast:)
We should get CT/MIBG results on Friday. Bone Marrows will be Monday. Thanks for checking up on us. Happy New Year. I hope yours is off to an easier start than ours so far. We're not afraid of logging miles, though. We think it could be an important therapy for Hans right now... Thanks for keeping us in your thoughts and prayers on our crazy ride!
- 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.