I'm so sorry to have kept you waiting. We just got both results and reworked our plan.
The PET/CT was consistent with previous scans, showing no new lesions and actually significant improvement to the head.
Both bone marrow aspirations and biopsies were negative for disease!! And Dr. Shimada was reading them this time, so my confidence is pretty good in these results.
This is truly amazing news compared to the possibility of a dangerous new progression. Ugh. I was a real mess for a couple days there..
The cause of pain is currently a mystery. Hans is still on IV morphine to control it.
We are starting round three of Irino/Temodor tonight. These docs and our NP are so compassionate that they have compressed the five day dose into four days and we are optimistic for a Sunday discharge (on an oral pain plan). Sunday is our bright and beautiful Elle's 13th Birthday. Ahhhh.
We are going to add the bone building drug Zometa into the mix this next round.
We'll likely scan the week after next (MIBG, MRI) and we aim to go onto a new trial breifly and dream of then catching a spot on the ch14.18 immunotherapy antibody trial ... But I dont't want to future trip too much...that obviously doesn't work out too well for me.
Thanks for hanging in there with us. We need all the support we can get on this wild ride.
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.
16 comments:
So happy to read this today on our way to TCH for our little guy's heart surgery. Love good news!
Amidst the ride wide, the positive news is most welcome! May this new round of treatment be uneventful and find all of at home by Sunday!
THIRTEEN!!! WOW! May the celebration of ELLE begin!
So much to celebrate about this little lady!
Prayers for Hansie and Blair's family.
Love and hugs,
Aunt Susy
So grateful for this positive news, Lara. I've been holding my breath along with all of us who love you, and will continue to envision a healthy outcome to all of this. Happy birthday to Elle.
Great News...Great News..
Watch the Mail for Elle usual Card! Happy Birthday-WoW 13!
Kerry and Family
So glad!!! Great news! Have been keeping my fingers crossed all week and will continue to cross them for an easy round of chemo with an early dismissal so you can celebrate Elle's birthday in style! Happy Birthday to her--13!! So fun.
Fantastic news!!!!
Yeah!!!! Watch the mailbox......love, pl
That is great news, I feel like taking a deep breath for all of you. I love you all more then words can say, I sorry for not saying it more often. Let my Elle Bell know that her Auntie Anna will be thinking of her this weekend.
Love to you all,
Anna
Great, great news for all the fans in Hans land (who have never even met him, but root and pray anyway). We were all on pins and needles after the last post too.
We will continue to hope and pray that it all works out for you to get out for Elle's birthday -- and that "the plan" continues to work.
Yay! We are so happy to hear this! Love and hugs to you all and happy 13th birthday to Elle!
Sunny and family
Hey there--just looking thru comments and see that my name didn't make it on--it's me at 11:09 :)
love,
Sarah
Wonderful, wonderful!
A HAPPY 13th b-day to
Elle!!!
and
A HAPPY homecoming to Hans & Lara!!!
0X0X
Gma Stephanie
Happy 13th Birthday Elle!
Hoping that good news is hear to stay!
xoxo
Roxie
Happy Birthday to Elle! Happy to read no new progression. I hope you are getting to go home today!!
Hugs, Charon
A happy day to all of you! Happy birthday Elle. You are amazing!!
Love G Kathy & G Dale. Xoxo
I'm thinking of you and your family!!!
Happy Birthday to a sweet girl!
Kevin & Lara you guys a wonderful parents.
Hans please give Honey my swiming buddy a pat on the head!
Take care,
Pat K.
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