Well, shoot. We did not get the news here in Philly we've come to expect so consistently. The unfortunate news is that Hans has a new spot of NB. There is a new small bright spot on the MIBG on Hans' right hip. The spot on the skull is stable, but the new spot puts us into the category "Progressing". What does this mean? Progression means that the Millennium has stopped to control Hans' NB. I guess you could say Hans' tumor has built a resistance to the Millennium, so it's time to move on. It is never fun to jump ship and hop on a new trial before you have to, but honestly, we would have had to change up his therapy in December anyway (there is a 2 yr limit on this trial). This just forces our hand to make the change about 5 months earlier...
So here we are. Hans and I will be detained in Philly all next week.
Kev and Elle will stay long enough to celebrate Hans' birthday tomorrow and they will catch separate flights on Saturday. Elle has a Sea Kayaking Girl Scout Camp to get to in Washington State with her first ever BFF, Greta! Kev has to go back to the grind of the flooring installation in our new house and his job...
Hans will turn 8 in his adopted 'hood of Philadelphia. I can't help but relfect on my little All American Boy! He has visited many different parts of the country. He thoroughly enjoyed our trip to Hawaii and frequently talks about how he wants to go back. He has the frequent flyer miles of many business travelers. He has received treatment in 5 states, and been consulted on by docs in several other states. He has swam in two oceans, visited one rain forest, admired both vlocanoes and the Great Lakes, and road tripped up and down the entire West Coast. He knows his country pretty well! We are all so proud of how he finds joys in the everyday pleasures of childhood and is never down about his challenges. He is developing his little sense of humor and cracks us up all the time.
We are staying next week to do a full workup of scans (BoneMarrows, CT). We will meet with the docs on Wednesday and hopefully enroll on a new trial by Thursday. We've still got our eye on the ALK Inhibitor trial. This is the trial we were considering back in 12/09 when we got on the Millennium trial. There are a couple other options, so I'll keep you posted. Our goal remains the same: to rid his body of his disease burden and maintain his quality of life while at the same time minimizing toxicities to protect organ and other important functions.
In the meantime, it's amazing that we have the friends we've got to scoop us up when we need them. Before we had even confirmed the new spot. I had a text from our friend Dawn assuring me that she's got Hans' b'day covered tomorrow.
Thanks for any thoughts, prayers, or good vibes you can offer us at this time of transition. We are still only hoping for the best of outcomes for our boy.
- 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.