I'm so sorry to have kept you waiting. We just got both results and reworked our plan.
The PET/CT was consistent with previous scans, showing no new lesions and actually significant improvement to the head.
Both bone marrow aspirations and biopsies were negative for disease!! And Dr. Shimada was reading them this time, so my confidence is pretty good in these results.
This is truly amazing news compared to the possibility of a dangerous new progression. Ugh. I was a real mess for a couple days there..
The cause of pain is currently a mystery. Hans is still on IV morphine to control it.
We are starting round three of Irino/Temodor tonight. These docs and our NP are so compassionate that they have compressed the five day dose into four days and we are optimistic for a Sunday discharge (on an oral pain plan). Sunday is our bright and beautiful Elle's 13th Birthday. Ahhhh.
We are going to add the bone building drug Zometa into the mix this next round.
We'll likely scan the week after next (MIBG, MRI) and we aim to go onto a new trial breifly and dream of then catching a spot on the ch14.18 immunotherapy antibody trial ... But I dont't want to future trip too much...that obviously doesn't work out too well for me.
Thanks for hanging in there with us. We need all the support we can get on this wild 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.