We've been throwing out so much information over the past 4 - 5 weeks, that I thought I'd do a little recap for you, for where we stand now.
A month ago Hans had such bad pain in his arm, the upper right humerus, and site of original relapse of 5/08, that we were admitted to the hospital for pain control for a week. Many tests were run. Some were negative for NB, some were suspicious but Inconclusive:
The Xray, the MRI and the Bone Scan each showed some abnormalities to the bone. The official MRI report did read "concerning for recurrence", However, the fact is that Hans sustained trauma to that arm at relapse. It was then radiated, and there are no post-treatment images of the area to compare against. We then got news from the CHOP team that the MRI looked like "treated tumor, not active tumor.
The MIBG, CT Scans, Needle Biopsy, and Urine Catecholamines were all negative for evidence of NB. Furthermore, clinically, Hans' arm pain improved.
We thought the option of an open bone biopsy was too risky for Hans, so for now we've held off on that diagnostic bit of evidence. Instead, we opted to do a wait-and-watch approach. We put Hans back on the ABT751, the oral chemo he has been on since February of 2009, after he once again became NED. The idea here is that a follow up MRI will be diagnostic for relapse. IF the MRI is unchanged or improved, we will assume this is not relapse. IF the MRI is worse or shows progressive concern, we will assume it is relapsed NB. The idea is that if Hans has relapsed on ABT 751 that he has become resistant to it, thus, being the aggressive and nasty cancer that it is, it would progress after another round of that same drug and six weeks time.
The thing is, if it is not NB, we are no closer to determining what it is or was! We may wish to reconsider the open biopsy at that point, or hear CHOP out for other options.
I hope this helps! It has been a roller coaster. Hans was going along fine and woke up screaming and crying in pain at midnight a month ago. Now appears to be fine. He dances around the house using crazy flailing windmill moves with both arms. We have never had to withstand such a long diagnostic process. I hardly know what to do with myself. I feel like I have ADD - I can't focus on anything. But, to tell you the truth, I have a good calm feeling about what the scans will reveal. My only concern is that they say they cannot compare the two scans because they are from two different machines/institutions. YET, each institution assures us it'll be just fine.
I'll keep you posted! We have plane tickets! This always feels like a major accomplishment - - I always feel such pressure in picking just the right flights and dates and times, trying to predict just the right amount of time to be on the ground in Philly. I don't know why it's intense for me, probably b/c it's costly and a big pain to try to change tickets after the fact...
Everyday is an Adventure, Everyday is a gift!
- 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.