I just got the scoop on radiation. Dr. Wong, our Radiation Oncologist, decided Hans' spine could tolerate 12 days of therapy (not wanting to over-do it from earlier treatments to the original 'tumor bed') and that his skull could tolerate a full 20 days.
Today is Day 3 for spine and Day 1 for skull. Looks like we'll be doing our xrt/carbo/etoposide routine until July the 3rd!!! Holy cow. Hopefully it'll be just the right amount!
The pain team is switching us to oral, longer lasting Oxycontin, in the hopes of coming home FRIDAY!
We've been spoiled. Elle has been spoiled! She's been on a Laguna Beach getaway with Sally! Thanks a bunch! Aunt Debbie and then Grandma Kathy got in last night and at this moment, they went to fetch Elle and have a girls day out. They came bearing gifts and I was glad to see Hans building last night and this morning. Last night he actually seemed to be doing a little bit better than he has in a while, even though his pain is at a pretty constant 4 - 6 (on a 0 to 10 scale) despite the amount of pain meds he is getting...
That's what I know now. Perhaps my next post will be from Bakersfield.
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.
8 comments:
Thanks for the continuous updates, Lara! We're checking in daily, so it is a relief to read the latest news! Our prayers are always with you!
xo Shelley
It's a relief to know conditions have improved!
Hooray for Hans feeling well enough to construct with Mom at his side...AND consider HOME!
Hooray for Sally, Grandma Kathy, AND Aunt Debbie, too! Delighted they have all had the company of Miss Elle..FUN!
Wishing you well throughout your days dear Hans!
Love and hugs,
Aunty Susy
<3 Checking in & sending Love & many hugs! Wanted to see if maybe I could come over Friday after work before heading out to the desert? Please text or email me if that is ok & PLEASE let me know what I can bring...ie... something to build or maybe dinner?
<3
cousin Jenny & Jill
A plan....ahhhhh! Glad things are at least stabilizing. Way to go, Hansie Weberling. Soldier fighting hard against the dreaded NB, not one now, but two. You rock, little man~ Hugs, prayers, love & grace surround you all! Wendi in the windy city! :)
Hey Guys....
So glad to hear that treatment has begun to get this beast under control. Dr. Wong is great. He was Tyler's XRT doctor. We found him to be very kind and compassionate.
I just wanted to mention a couple of things. I know Hans is in pain so this might not be possible but I thought I'd throw it out there. Our Child Life Specialist brought us the "Art" monthly calendar. In it, for inpatients only, they have Art and Music classes everyday. I think most of the 4th Floor Oncology kids aren't told b/c they are neutropenic and that may be the case soon for Hans but I thought I'd let you know. The class with Carlos on the 5th Floor Art Room is incredible.
Also, make sure you met Stacy the "School" teacher. She always has great things for the kids to do, more books and fun things to work on. Also, she is involved when the celebrities come to visit. She was great getting the media to Tyler's room when the Dodgers came.
Did you know about the book library on the 6th Floor? Hans gets a free book for everyday he is there and he gets to keep it. It's a nice little walk and if Hans can't go, you can go and pick one out for him. Also, they have magazines for parents and if the sibling is there, they allow the sibling to pick one as well.
Ok, you are most likely aware of all of this already but I thought I'd let you know so you can keep as busy as possible!!! We were going for years before we knew about a few of these things!
Tylers scans are June 26th at 9:30pm. Yes I said PM!! We'd love to visit Hans before the scan around 7 or so? We would love to bring him a gift. I'll try to get in touch with you to get your cell # so I can check in that day and see if he feels well enough.
Please take care and know that we are thinking of you always,
karen borges
cb: tylerborges
I'm so sorry to hear you all had such a short respite.
Your situation has given me an idea. My oldest, Ian, is suddenly willing to part with some of his many Lego sets complete w/original instructions.
If you message me via FB with an address, we'd love to pass something along for Hans to build and enjoy. The rest will go to Children's Hospital in Seattle.
Keeping your family in our thoughts and prayers...
~April
Does Hans still have an Amazon wish list? Maybe I'm just missing it on the site.
I don't actually know your family, so if you'd rather not share the list publicly, I understand. I just got my very first job after college and tomorrow is my first payday. I'd love to use part of that first paycheck to brighten at least one of those 22 days of radiation!
Go Hans!
Oh my gosh, that is so sweet!
http://www.amazon.com/gp/registry/wishlist/ref=wish_list
I guess I could make a link on the site.
Hans enjoys updating his wishlist regularly:)
Congrats on the job and thank you for sharing the wealth by brightening one of Hans days!
April - thank you so much, too. I'll FB msg you.
Karen - Thanks for the tips! I think they are discharging us today, though. We will do our remaining 17 days (or 3 and a half weeks) by commuting from Bakersfield! It's gonna be like a job.
Thanks everyone, love, Lara
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