This is exactly the kind of post I hate to write; the kind of news that every NB family hates to face. But, UGH, here we are just three weeks out from scans and Hans is starting to have some arm pain (right upper arm=original site of relapse). We actually first heard him complain Wednesday night in his sleep. Then, we managed to get him in to see Dr. Russell yesterday. She did a quick xray and the radiology report was not exactly normal. It isn't necessarily awful news, just a question mark... That area suffered significant damage at initial relapse. It was actually so eaten through with tumor that it was broken off of the growth plate. Hans made a remarkable recovery and response to therapy. There are a number of possible explanations for a bone that doesn't look normal at this point in therapy:
-bone problems from radiation
-bone problems from initial tumor activity
-even bone density issues from stress dose steroids usage
-I'm sure she even listed a few more things that I am now forgetting!
-or, even, possibly new NB activity.
Dr. Russell didn't think it was that, really. So we are going to wait a few days, if he continues to have pain, we'll get him in for an MRI. We only have old xrays to compare this current xray against. So, it's not "apples to apples".
CHOP will also be notified. And, right now, I am reminding myself of something Dr. Mosse said to us. Back in June 2009 when we received news from her that his scans were once again clear, I thanked her through tears of sincere gratitude that automatically well up when I hear those merciful words. I so appreciated what she said to me next, "Even if they hadn't been clean, there are things we can do." I needed to hear that. There is always hope. Kevin and I live by the philosophy that everyday we keep Hans afloat, researchers are learning more and more about this ugly disease. Thank God, there is great hope in the future. I believe this; I must believe this.
Anyway - we've had one drama or another for the last month or so and are quite ready for a long stretch of normal days. We shall see about that.
In other news... looking forward to the weekend, tonight is the Talent Show! Go Elle! Saturday I'm going to be at the NB Regional Conference, while everyone else will have a day of soccer and b'day parties. Then, on Sunday, Kevin and Elle should join other members of the soccer team to see the Houston Dynamo vs. the LA Galaxy and yes, Beckham! I'm a little jealous;)
- 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.