So - we are one week into our latest therapy. Hans has begun the Vorinostat. He started last Wednesday night. So far, the only side effects are positive. Labs looked okay today! We are happy.
Hans' pain has truly subsided somewhat! He has now completed day 4 of 11 days of radiation to the skull, cheek and spine/chest!
My mom is in town this week. Elle is home!!!! I am just trying to do as much as I can/that has been neglected/while I can with back up here. Mundane routine things, vet visits, ortho/dental apts for us, the last vehicle registered in CA finally, etc etc. Hans is being a good sport about all of his treatment, of course! As always! He has a new favorite spot to eat in LA...Ono Hawaiian BBQ. He gets vats of the BBQ chicken to take home. He has actually put 4 pounds back on! We are tweaking his oral pain meds and steroids; trying to find the perfect balance is hitting a moving target, for sure.
Thanks for all the love support, texts, emails, FB msgs, calls cards, rides for Elle to Ortho (Larisa), chicken noodle soup and Pizza Tonight from TEXAS via airmail! AGAIN! Thanks to Michelle, Matilda, and Kendall for making that happen, again! Thanks to Carmen and the soup drive girls for the chicken noodle soup for the soul from TX. Thanks to Hans' teacher Jackie who stopped by with a special ceramics project for Hans and to have her two kids meet him. Super sweet! Thanks, everyone. I am waay behind in getting back to emails and voicemails and texts - but I've certainly read and listened to them all, thank you, dears.
We met with Dr. Araz today - she seemed happy with Hans' response to Vorinostat so far. Hans' liver panel was great so the drug isn't irritating him. Like I always say, I'll take all the good news I can get.
Thanks for checking up on us.
About Me
- 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.
6 comments:
Certainly sounds like a lot of good things happening at one time. Very glad to hear it! With love and hope!
Ashton
Magnificent news! May Hans continue to enjoy pain-free days, great food, and happy days at home! Special boy, special people, and special happenings!
Thinking of you throughout my days with BIG love and hugs,
Aunt Susy
"ono" means "good" and I'm so glad Hans thinks so - great to hear he's putting some weight back on, less pain and handling the new routine just like he always does :). I don't know how Uncle Michael could have missed a Hawaiian restaurant on his trips to LA! We have a good one close to us - Uncle Michael likes the bbq beef, I like the bbq chicken. Hugs to all of you!
Love, hugs and prayers
Aunt Holly and Uncle Michael
Yes! Yay for good news. So happy that pain is abating and the voronostat seems to be working (and that Hans is eating and gaining weight).
I'm so glad to hear that Hans is having less pain and is putting on weight like a champ.
I love Hawaiian BBQ too. My favorite is SPAM musubi. :)
It may be too far away for you guys, but there's a really good Hawaiian BBQ restaurant in the area called B-Man's. They have a location in South Pasadena (or maybe Alhambra) and one in Azusa.
M.
This makes our hearts smile to here that things are going good. And that Hans is gaining weight, Yay!
Love to you all,
Uncle Matt, Auntie Anna, and kidos
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