Hi all-
Well...Tuesday Hans had his CT Scan and Bone Scan and they essentially confirmed what the X-Ray had hinted at over the weekend. There is most likely a lesion (neuroblastoma) on his upper right arm just below the shoulder. This was revealed on the Bone Scan. His CT Scan was great and there were no tumors present in the abdomen or chest where the original tumor was located. We kind of knew what the outcome would be because as of late last week he has been unable to use his right arm. Everything below the elbow works fine, but he holds his shoulder/upper arm close to his body like it's in a sling. He's very carefull not to push off of it and won't hold anything heavy with his right hand. That said, if you saw him, you would think he looks great! He feels good, his appetite is good, and he generally feels like doing everything normally. He tells us that he has a 'boo-boo' in his arm and needs to go to the 'clinic' so the doctors can 'get it out of there'. Don't worry...Hans is Hans and his spirits are good! He is one of the most bad-ass little kids you will ever meet. All of these little kids are.
As for Lara, Ellie, and I...kinda rough? When someone is first diagnosed with neuroblastoma there is a standard protocal for treatment (Chemo, surgery, radiation, bone-marrow transplant, etc.). This has all been proven through various clinical trials to be the best shot at beating neuroblastoma and achieving cure status. It's one of the roughest cancer treatments out there, but it works just enough (~40 percent) that it's worth it. That's what's so frustrating, though....Hans is on the other side of the odds now. Basically Dr. Russell told us that now we are in a whole different arena. There really is no "cure" per se. Now it's more like managing a chronic illness. You hope to stablize the progess of the disease or get it back into remission. We know many people in this situation. Some go from relapsing to clean scans to relapse, etc. Others go from relapse to stable and no further growth. There are currently over 90 clinical trials for neuroblastoma patients. Many of these trials Hans will not qualify for because of his adrenal glands being removed, others because of the condition of his disease, etc. Many he will qualify for, though and Dr. Russell is going to make a sort of "top-ten list" of suitable trials/treatment options for Hans over the next 2 days. Then we will be able to look at the "menu" and see which one we want to do. The hope is that we keep making it long enough that one of these trials becomes another smoking-gun, standard treatment towards a cure.
Just know that our goals are:
1) We want Hans to be as happy and positive as ever
2) We want Hans to be our/your son, brother, granchild, friend for a long time to come
Love
Kevin, Lara, Ellie and Hans
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.
24 comments:
Hans has the best parents and big sister in the world! Hans is a true fighter and has made us all so proud ever since October 22nd 2006 and I know he will keep on fighting!
I have hope and faith that God will guide you in your tough decisions now and your family and friends will always be here to help and love you all.
Stephanie
Kevin, Lara, Elle, and HANSIE,
I am holding ALL of you in my heart with love and hope!
Hans was a rare, insightful child from the start...I remember our "night walks" bundled in a blanket at Grandma Kathy's and Grandpa Dale's...it was clear by his response to the horses and, in turn, their's to him that he possessed a special wisdom!
One day at a time...all of you have a mighty love to share.
Love, hugs, and smooches;
Aunt Susy
$%$&#$#%$#!
I'm so sorry you are probably back in the game (I say probably, because bone scans show anything that's going on, even a bruise, not just NB). That said, you know that relapse doesn't have to slow you down. Just look at Erin, who has big plans for brownie baking after school.
Call me if you need to talk.
979.820.1755 cell
979.822.6552 home
VB
erinbuenger.blogspot.com
Kevin and Lara,
My heart aches that you got this news yesterday. Know we are continually thinking about you. We know these kids are fighters and have seen kids that have gone back into remission and long term stability! We continue to have that trust and hope for Hans.
Charon Edgington
HI
I just checked in on yall I am sorry that you got the new that you got. Keep your heads up and your faith higher. This is what I ahve to tell my self everyday: everyday is a new day and everyday could be the day that they find the cure that we need to kick NB in the butt. We are thinking of you guys. We need you at the bake sale on Friday jsut think that all the money that we raise maybe that $1 that cures our kids and all the kids that follow. Please call me :) We are praying for your family
Tracy
Dearest Lara and family
I have been waiting to hear about the result of his scan and I am so sorry! Its nice to know Hans is so strong and brave and ready to tackle the next step.
Madi and I will pray that all goes well each and everyday!
We love all of you and miss you all greatly!
Kerry Madison and Sean
Sending huge prayers, positive thoughts and well wishes your way from WA. That Hansie...what a super amazing person. Kevin, Lara and Elle you guys are just remarkable. Love always, Chris and Kyle
We are praying, we are here for anything, we love you, and we trust and hope in God for Hans complete healing!
Kerri
carepage:buddhabelly
We are lifting you guys up in prayer and believing that the clinical trial that you chose puts Hans back in remission. I'm also praying that his "boo-boo" quits hurting.
I'm with Vickie. I'm waiting on the MIBG to show that it is not NB. Hopefully, it is something less frightening. We are keeping Hans and your entire family in our thoughts and prayers. If you must start on a new treatment, I pray that Hans will have a miraculous response. NED...or even STABLE!!! We love you guys. Please feel free to call. We want to help in any way we can.
Love & Prayers,
Theresa Williams
You guys are constantly in our thoughts and prayers. Please know how loved you all are and how amazing I think your family is. You are so strong and Hans is such a little fighter!
Bernie
www.caringbridge.org/visit/lukehaberman
Hi Hans,
I know you don’t know me, but my name is John Raschke. I am also known as Grandpa John, or just Gj by all of my Little Buddies. Who are my little buddies? Well, my little buddies are all of the children suffering from neuroblastoma, and their families too. So if you don’t mind, I'd be honored if I could call you my Little Buddy too. – Thanks…Wait a minute! After looking at your picture again, I see that you’re a big, strong, handsome guy, maybe I had just better call you Bud, or Hans and leave it at that...
After reading your journal/blog I just have to tell you how courageous and strong I think you and your family are. I wish I had the magic bullet that would just “Kick Neuroblastoma’s Butt” and that the doctors would find a cure. Well I am sad to say that I don’t have that type of magic and it just hurts my heart really bad to see you or any of my little buddies Bud’s suffer so. It hurts so much that I just had to do something. And that something is that I decided to raise funds for neuroblastoma research and donate it to the Band of Parents who is partnering with the Memorial Sloan-Kettering Cancer Center, where the wonderful doctors are working very hard to find a cure. And while raising donations, I also decided that I would also run ultra marathons and other types of running races to honor my all of my little buddies. Bud’s. You can read about it here:
http://www.runningforthecure@blogspot.com/
So, this is my promise to you and your family: I will continue to run and raise donations for the cause until my legs get too old or tired to run, then I’ll just have to let my heavenly Father carry me onward in my racing till the cure is found…Yep! That’s my promise to you and I’ll keep it, cause like you Texans I’m a man of my word!
God Bless You and Your Family
Grandpa John.
Hans,
It's me again I forgot to give you my email address. Here it is (can you tell I am computer challenged)
jraschke@twmi.rr.com
L,K,E and H - We are thinking about all of you and saying prayers fast and furious - yep, that's P.L. saying that!
I tried calling you earlier - I'll try later.
We love you - pl and everybody in Seattle. xxxx oooo
So sorry to hear the news but I know Hans will continue to fight this nasty thing. He has so much strength and you are all so strong too. We will continue to pray for you and we will never lose hope of a complete and quick recovery for Hans. Love, Cindy
Kevin, Lara, Ellie & Hans,
We know EXACTLY where you are and how you feel. Please know that Hans (& the rest of you as well) will be in our prayers. Chloe's bone marrow aspiration came back negative for tumor cells, so we're doing the MIBG scan AGAIN tomorrow, because to see Chloe, there is NOTHING WRONG with her.
Just KNOW that God loves you and your little man, and will hold you all in the palm of His hand as you walk through this.
If you ever need anything, please do not hesitate to let me know; even if it is to just talk to someone who understands because we are walking the same road.
Blessings,
Michele Parker
Chloe's Mom
Carepage (Chloesjourney)
Hans is a trooper and sounds ready to fight this, too! Your goals are right on and we're here to support you however is needed. Lots of love, prayers and good thoughts to all of you. Will make sure Hans is still on the prayer lists, too!
Love, Aunt Holly and Uncle Michael
Well, crap. Certainly not the news we wanted to hear but I echo everyone else's thoughts and prayers and would add that Dr Russell and her crew have been amazing thus far and I expect no less from them now. It is a team effort, and you have a huge team behind you - including the new puppy, and animals provide amazing healing, too!
Mucho love
Erin
I agree with your Grandma Stephanie! Han's has the best Mommy.Daddy and Big Sister in the world. I just got off the phone with Grandma Stephanie and I told her that I was writing to your Blog! I have followed your bog since October of 2006 and have many times tried to write but every
time I do it deletes it self.
I know this one will work this time.
Shinichi and I wish only the best for you all. You are thought of every day, and I check the blog always. Your blog is part of my daily computer routine.
I'm very excited about your new puppy, and I'm so glad he/she was sent to you!
Love,
Pat Koike
Hi Ellie,
You are growing up so fast.
I hope this summer if you vist your Grandma that you can come to the design center. We can go to lunch and I can give you some fabric's for your projects.
Love,
Pat
Hans - you get that boo-boo taken care of, okay? We're praying for you up here in Minnesota!
The Tierney Kids (Emma, Patrick, Gracie, and Johnny)
So sorry to hear of this stinky news. We'll be praying hard that those doctors will fix this booboo! May God grace your family with faith, hope, and joy as you begin a new part of this journey.
We are continuing to pray for you all!
Kevin, Lara, Elle, and Hans,
We love you all very much. Staying positive is what we will do for Hans. We've seen his spirit in his eyes and heard it in his voice. Kevin and Lara, you really are just wonderful parents and Elle is the best big sister. Great big prayers are happening in Mattawa for all of you.
Grandpa Dean & Grandma Diana
Kevin,Lara,Elle & Hans,
So sorry to hear of your newest battle. We have been following Hans journey since we found out. We already new what wonderful people you are but you truly are inspirational.We love you all and are praying constantly for Hans complete healing and that you all will be comforted during this time. Hans is lucky to have such wonderful parents and a great sister. We know you are lucky too to have such a special little boy and such a figther! Keep up the battle Hans we are with you!
Sending all our love and prayers from Tucson-
Tony,Jen, Ashley and Ryan Brown
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