Hans in clinic today with fellow NB dude Tyler. Thanks to Tyler, Conner and Karen for the mega haul of toys for Hans at clinic today. What on earth are the chances you'd pick out two Bionicles and two Lego sets we don't have??? Thanks!
Today we got some pretty bad news. The scans were difficult to even comprehend. We learned that Hans' dental pain is due to a lesion in the cheek bone area. I had just spotted a bump on the top of his head and we learned that was a new lesion as well. There is a paraspinal tumor, one near the heart, and app ten nodules in the lungs. There are multiple bony mets.
We are absorbing this difficult information. We are also battling the most concerning immediately. Hans is going into yet another round of Emergent Radiation starting Friday.
He is also beginning a new therapy tonight. We are starting him up on the oral chemo/biological agent Vorinostat. This is one of the clinical trials we had hoped to hop on but we are going in through the back door. We are doing the Vorinostat on an off-label/compassionate use basis. It seems like it will be pretty simple. We will be giving him just two pills a day four days on/four days off/four days on and the cycle repeats every 28 days. It is also a radio-sensitizer so the effect of the two therapies will amplify each other. The plus- side of using a clinical trial drug off-label is that we don't have to follow all the rules. We can custom fit the drug to Hans' needs and to his urgent timeline. The only down side is that its effects on Hans won't go down officially in the research to help other kids.
Please pray with us that this new promising drug, Vorinostat, is just what Hans needs. Thank you.
- 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.