We've talked with Doctor Russell a few times since the last post. She told us that she has conferred with the docs at MSKCC in New York, and that we should hold off on that option until "Hans' disease is back under control."
So, we're working on that. Feels a little like taking a shot in the dark. But - it's all we can do. Things are in the works to get Hans into the MIBG treatment at UCSF. It looks like it'll take a couple of weeks to make this happen. Meanwhile,
we are going to get some chemotherapy in him starting Monday. We are going to go with (IV) Irinotecan/(oral?) Temozolamide. Hans has clinic appointments set up for 12:20 each day next week. As long as he is feeling well, he should be able to go to Kindergarten in the morning and head down to clinic afterwards. He will also be given his third dose of Zometa. From what I understand - the hydration requirements aren't as strict as with Topo/Cytox, and the blood count drops aren't quite as low. He should be feeling well the whole time, and he should only have to go into clinic for counts once in each of the following two weeks... There are some side effects, but he's starting a new Antibiotic in hopes of countering those.
It's pretty scary. There are no guarantees that any of these treatments will have the desired effect in Hans. I wish there were some quick lab tests where you could predict how Hans would respond to each therapy. All we can do is keep going, keep fighting, and keep praying. We are trying to make the best decisions we can for our boy. I am happy that Dr. Russell is working with us to help coordinate the treatment at UCSF.
Meanwhile - 'normal' life moves along. Elle has started soccer (go Wolves!) with her first game Saturday. My proud mama moment was when she was the only kid on the team who called out begging to take a penalty kick and aced the final goal:) They didn't win their first game, but they seem like nice kids, and the coach isn't gonna let them goof around. That's good. We also met with Girl Scouts to plan out the year and I am pleased to report that Girl Scout Troop 11251 will help with making lanyards for Neuroblastoma Research, and they will do a cookie drive for either Ronald McDonald House, or for TCH. Sweet.
We'll keep you posted as we roll into another hectic week of balancing school/work/treatment/soccer and another Bake Sale!
Lara
PS - anyone can click on the "Neuroblastoma Parent Handbook" Picture icon, above on the right, and read more about the MIBG or 3F8 Treatments.
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.
4 comments:
Dear Kevin and Lara,
You ARE making the very best decisions for Hans! This is the toughest of toughest stuff, but don't for a moment doubt yourselves. Very little in life is within our control, and you are making the best choices based on love, moment-to-moment intuition, and professional knowledge.
Kindergarten is Hans' new world to explore! His first day photo speaks volumes!
Yeah for Elle and soccer and Girl Scouts...let me know when the cookie sales begin and I will forward $ for treats for the children's floor!
Love and hugs,
Aunt Susy
Thanks so much for the beautiful lanyard! I just got it on Friday, and am super excited to start wearing it at work tomorrow.
Love and prayers,
Shelley
Way to go Elle! She's such a great "student-athlete"!
I'm not giving up on Hans' ability to fight and heal. I know that you aren't either. I will keep the prayers coming.
Sending all of my love,
Roxie
Hi! I know you are making the right decisions for Hans, no one could do a better job of caring for him! I'm praying everyday for all of you. Glad to hear Elle is doing well in soccer, She is a great kid. Love, Cindy
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