Hey - we got word yesterday that the MIBG scan showed slight improvement in the small spot on the liver, and that the left arm - humerus (we had previously thought it was leg, but it was arm) is unchanged!!! Let me just rejoice for a minute here!!! This is great since it is not spreading, not progression! JOY! Kevin and I were a little concerned when Hans said his back hurt a little bit last weekend. But I really didn't want to put my fears out there on the blog... Spine was clear!
This leaves us waiting on decisions before we get the next step. We need to get the scans to Dr. Maris at CHOP and he needs to evaluate them so he can decide if Hans is eligible for MIBG therapy. My logic speculates that if Maris sees improvement on scans he thought already looked good, that he wouldn't consider MIBG an option for Hans at this time. We can always keep up the Irino/Temodor for a while. The good thing about this therapy is that it is fairly do-able! We only have 5 short clinic days and then 2 full weeks off, Hans' counts don't drop too low, and the overall quality of life is pretty great. I do notice that he is losing a tiny bit of weight and his moodiness is a little bit more unpredictable. But, he doesn't have any physical complaints.
Kevin and I feel like we're in a pretty good place to take a breath and consider our options. Waiting for Maris, waiting for the Bone Marrow to come back (Weds, Thurs...?)
That's all we know right now. The pressure is sort of on though. If we are doing more Irino/Temodor, the schedule dictates we should start TODAY. That's not going to happen, since the scans can't get to Maris until tomorrow, and I have no idea when his schedule will allow him to review them and make a rcommendation. Kevin and I get extremely nervous when start dates get pushed back. I guess we look at it like - that's the only thing we have control of - keeping on track...
Thanks for checking up on us - I'm going to go play Wii with Hansie...
Lara
About Me
- 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.
5 comments:
Great news!! I'm so glad for you all. It sounds like you're breathing again! I'm sure it's great to feel like you've got some good options that will still keep you with a basically "normal" rountine of everyday life. Give that brave boy a squeeze for us. Talk to you soon.
Sarah
Glad so hear it...I'm hopeful that you'll have answers in place regarding next steps very soon.
Wonderful news!!!!!!!!! we are so excited for you guys it is amazing how wonderful the word stable is :) I know that you had a great weekend see yall soon.
Tracy
Great news Lara! Go play Wii with that boy!!
Charon
WHOO HOO! Your news is fabulous!
Love and prayers continue to flow in your direction, as you await the next step...hopefully, it will be "light!"
Love and BEAR hugs,
Aunt Susy
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