I'm updating from here in Philly. We had the scan and got the news this morning - scan looks good. When I inquired just how good - stable or better - Dr. Maris explained that all the radiologists in Nuclear Medicine (the department that conducts all the MIBG scans) are at a conference, so there had been no official read. However, he explained that he has seen "a few" of these and that Hans' spot on the skull looked perhaps a little better/fainter. He did ask if Hans had been more active on the table than usual because it was not quite as clear as usual. The scan is a 35 - 40 minute ordeal where hans is literally taped down to a table. Usually he is quite a pro in these scans, but this morning he did doze off, so we reported to Dr. Maris that his head did fall to the side a bit at one point.
It's good news. I hadn't felt too uneasy prior to this scan, actually, none of us had. So, that's good, we can move forward and go ahead and map out the rest of our summer. Yay.
Dr. Maris. alluded to the fact that Hans is in a small group of kids that has made it through this many rounds of Millennium, and that we might soon get to the point where we consider 'spacing out the evaluations'. I'll be excited to hear more about that. Scanning in Philly every 3 or 4 rounds would be preferable, over every two! This hopping the whole family on a plane every six weeks is a little crazy. But, ya do what ya gotta do, right? And, we seem to get by... with a little help from our friends! (Thanks Alana for watching Honey) And, thanks again for those who helped us rack up miles! Three of these four tickets were from donated miles. We just had to buy Elle's and we are so happy to have her with us this time. She's fun, but the two kids are a little on the wild side. They chase each other and harass each other through the hospital. They fight over who gets to push elevator buttons, and I think they are very loud - they come screaming through the halls! Elle is constantly trying to push Hans in the stroller, then she starts to push him crazy and then, Hans demands Kevin or I take back over. It's a bit of a scene! Elle was actually getting Hans to do this insane yoga move yesterday, where he crosses his legs like a little yogi, and then proceeds to walk around the registration area on his hans and still-crossed knees. He is quite a little yogi. I guess they have their own kind of hospital-fun! And, actually, they are both getting older, and more independent, I find I'm getting more down time. I get to read my book while on the plane and here and there while they are in the pool. I actually had to make a stop at the bookshop for more reading material for the flight home. They are working on this cute flip in the water. Hans was bragging a bit about their flip to the team today - he told our NP that they were amazing.
Anyway, we are curious to see what they will say next time. We will do two more rounds as soon as Hans makes counts and then go from there. Scanning again at CHOP in mid august.
For now - this slightly longer than usual stay in Philly is becoming an urban vaca. Scancation? I don't really think it counts, but now that the pool is open at the Sheraton, and the weather is warm here, we are having a nice time. The pool is outdoor on the rooftop so we are actually very pleased to be here over the RMH for this summer visit. We hit Penn's Landing yesterday and plan to kick the soccer ball around at Fairmont Park later, and then back to TX soon!
Thanks for checking up on us. Thanks for your thoughts and prayers for these good scans.
Every day is an adventure. Every day 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.