Hans in clinic today with fellow NB dude Tyler. Thanks to Tyler, Conner and Karen for the mega haul of toys for Hans at clinic today. What on earth are the chances you'd pick out two Bionicles and two Lego sets we don't have??? Thanks!Today we got some pretty bad news. The scans were difficult to even comprehend. We learned that Hans' dental pain is due to a lesion in the cheek bone area. I had just spotted a bump on the top of his head and we learned that was a new lesion as well. There is a paraspinal tumor, one near the heart, and app ten nodules in the lungs. There are multiple bony mets.
We are absorbing this difficult information. We are also battling the most concerning immediately. Hans is going into yet another round of Emergent Radiation starting Friday. He is also beginning a new therapy tonight. We are starting him up on the oral chemo/biological agent Vorinostat. This is one of the clinical trials we had hoped to hop on but we are going in through the back door. We are doing the Vorinostat on an off-label/compassionate use basis. It seems like it will be pretty simple. We will be giving him just two pills a day four days on/four days off/four days on and the cycle repeats every 28 days. It is also a radio-sensitizer so the effect of the two therapies will amplify each other. The plus- side of using a clinical trial drug off-label is that we don't have to follow all the rules. We can custom fit the drug to Hans' needs and to his urgent timeline. The only down side is that its effects on Hans won't go down officially in the research to help other kids. Please pray with us that this new promising drug, Vorinostat, is just what Hans needs. Thank you.
18 comments:
Words fail me in the face of this difficult news. Lara and Kevin, Elle and Hans, you are in my thoughts and heart daily. Love to all.
I just am so overwhelmed with this news. I hope this drug is just what is needed for Hans right now. Love and prayers to all of you.
Sunny
So sorry to hear this news, but thankful you have a treatment plan to meet Hans' needs. Praying that Vorinostat can knock this stuff out of there!
I'm at a loss as to what to say. I honestly don't know what I would want to hear if I were you. I will say that this isn't fair (to anyone) and I wish more than anything you guys (or anyone) didn't have to go through this. My thoughts and prayers are with you. Keep us updated as much as you are able.
Praying hard for more miracles! Thinking about you guys everyday and sending Hans all the positive energy possible.
I don't even know what to say. I can not fathom what you all are going through. What I can say is that I love you all so very much and that we are praying hard. All things are possible through Him...
Love always Auntie Anna
Thinking of you and crossing my fingers and toes for Hans !
Weberlings: Darn. Rocky news indeed. Here is hoping that the radiation and the new chemo will knock this stuff back again. We are praying and hoping hard -- for a wonderful boy and his terrific family! It is great that they have options and are jumping on them so fast for you!
Gosh, just so very sorry to hear the news. Praying the new treatment is just what Hans needs. Much love & strength for you all.
praying for you guys...........
Indeed, this is rough news and difficult to absorb.
May our valiant warrior respond positively to the new protocol!
The miracle of Hans continues to present hope, love, and joy!
Sending BIG love, hope, and prayers from afar,
Aunt Susy
Weberlings--my love and prayers are with you always. Hans is a wonderful example of miracles, and will continue to be so. I certainly have a new respect for Chuck e Cheese's. You all needed/deserved that. If there is anything I can do, please just ask. Aunt Weez
Thinking of you all and sending our love. The Hutchisons
I am so sorry that Hans is going through all this pain. I hope and pray the new drug treatment fixes him up!! I know good news is just around the corner. Love you guys!
Kerry, Madison & Sean
I don't know what to say except I am so, so sorry to hear this news. I hope the Vorinostat is just the right drug. Go Hans!
M.
Portland, OR
There are no words that I can think of to make all of this horrible news any better. Please just know that we are thinking of you & keeping you in our heart. Big Love & So Many Hugs. Sending Tons of Positive Healing Energy.
Always,
Cousin Jenny & Jill
So glad there is a treatment plan.you folks are so brave.Keep up the good fight
Praying hard here for Hans, your family, and the medical team. Many hugs to you all.
The Kozaks
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