It is very good to be home. We are starting to feel a little more normal now. Hans isn't eating well, but he is at least picking at food. He got right back on it with the homebound schooling and is doing very well with Mrs. James! Speech will be at home this week.
I want to follow up about the "NO UPTAKE" and what it might mean. The MIBG isotope binds to Neuroblastoma. At the post MIBG therapy there was no uptake, so the logic follows that possibly there was no NB left for the MIBG to bind to... I had a lovely email exchange with our doctor since getting home. She suggested that maybe Hans was in remission before we even got to SF. She said it wouldn't have been a waste to go through the therapy (mop up microscopic cells). I feel strange to even type these words. I feel like we shouldn't declare it until we get scans in a month or so. Incredible.
Hans will get labs here today and he will go into LA for STEM CELLS on Tuesday. This will be very very good for him - his platelets have been chronically low for a couple of months since beginning ICE therapy in the Fall. What a miracle it is that we were able to collect those cells and that we are now using them with Hans in a potential third remission. We are so thankful and grateful on so many levels.
Thank you for your packages, prayers, thoughts and good vibes! Thank you for all you have done to get us to this point. All of Hans' Legos, Transformers and Bionicles made it out of the MIBG therapy room, somehow! We rec'd more boxes here.... Hillary, Uncle Dougie and Kim - thanks, Pat K we got Kendo Zane! Kerry and fam - a cool bionicle, Aunt Susy, cool Shark Book! Nolens, an Amazon wishcard:) THANKS all. We are so abundantly spoiled. Those packages got Hans through it. Thank you!
The world lost a bright light last night. NB's own darling, Anna lost her 10 year battle with Neuroblastoma. She was the most incredible thing, diagnosed at 17, she was a voice for the children. Anna was nothing but love and light and hope and optimism.
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.
1 comment:
It is wonderful to hear that the rhythms of daily life are resuming!
It is delightful to hear that the possibility of "remission" is present!
Anna's radiance glows in the photograph...it is apparent her presence cast a bright spot on all those with whom she encountered, as well as those she represented! May her family find peace and ongoing joy in her contributions.
READ ON, Hans!!!
Love, hugs, and smooches to everyone!
Aunt Susy
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