BDE Kayla Rus A"H bas Bunim Tuvia

obsesseddancer

Wed, Apr 09 2014, 4:57 pm

Most of you know that Kayla Rus has been part of a clinical trial at NIH and are waiting for results. Ok, so here it is: Results not what we had hoped. The good news is, she has what is called "stable disease," meaning no new tumors in the last 4 weeks and only minimal growth on the existing tumors. But this trial did not have results worth repeating the procedure. There are new trials coming up, and other treatments that they can try in conjunction with her regular oncologist, to be decided upon after Pesach. The typical reactions from us (because I know you will ask), are that Kayla Rus remains cheerful and positive, and I am sick to the point of paralysis. I would appreciate not having to talk about this or answer any questions. Thank you for your continued tefillos. Please continue.

the world's best mom

Wed, Apr 09 2014, 6:32 pm

greenfire

Wed, Apr 09 2014, 6:35 pm

{{{{{{{{{{{{{{{ Hug

}}}}}}}}}}}}}}}

PinkFridge

Wed, Apr 09 2014, 7:44 pm

CR, thank you for sharing so much. Even this isn't necessary. Refuah shleima! May Hashem give you all the koach you need, and may you feel His loving hand every step of the way on the journey getting there.

Mama Bear

Wed, Apr 09 2014, 8:37 pm

((HUGS))

Pineapple

Wed, Apr 09 2014, 8:40 pm

boysrus

Wed, Apr 09 2014, 9:53 pm

thanks so much for the update.
we will keep on davening
stay strong
wishing you a happy healthy Pesach
May this month of Nissan, the chodesh hageulah still bring good news for you all
hugs xxx

hila

Thu, Apr 10 2014, 1:28 am

Mishie

Thu, Apr 10 2014, 1:54 am

((((HUGS))))

Will daven for her!!

November

Thu, Apr 10 2014, 8:36 am

May Hashem bring about a complete refuah for her soon and for all of the cholim in Am Yisrael. You are both stronger than you realize.

Culturedpearls

Mon, May 12 2014, 7:02 am

Davening for Kayla Rus every week I take challah.
And for you too obsessedancer...

greenfire

Mon, May 12 2014, 11:07 am

ditto ...

even in these hard times of not being able to talk or post ~ just so you know we're still standing with you in prayer & strength & love ~

anonymrs

Mon, May 12 2014, 8:44 pm

Same here....I daven for her every single day. Hope you are doing well.

pelle

Mon, May 12 2014, 10:26 pm

I also daven for Kayla Rus. she has been on my mind. sending love and strength your way. May you only see H-shems revealed kindness.

boysrus

Mon, May 12 2014, 11:19 pm

anonymrs wrote:

Same here....I daven for her every single day. Hope you are doing well.

same here, my kids and I daven for her every day. May she have a refuah sheleimah,

boysrus

Tue, Jul 08 2014, 10:54 pm

Hi obsessed dancer/chaya Rochel, it has been almost two months since we have heard from you and I am wondering and worrying about your precious daughter. Would you like to update us when you get a chance.? We are still davening for her....
lots of hugs and wishing you lots of strength.

out-of-towner

Tue, Jul 08 2014, 10:56 pm

I was just thinking the same thing.

She is in my Tefillos, as always. Hope you all are okay!

Hug

exhausted

Tue, Jul 08 2014, 11:24 pm

Same here. I daven for her every Friday when I bentsh licht, every time I make Challa and my husband makes a Mi Shebeirach in our Shul every Shabbos. Whenever my kids and I say Tehillim for various reasons, her name always comes up! I have a daughter the same age so it feels so close to my heart and I wish her a complete and speedy Refuah Shleima and may she grow to be a beautiful young lady and continue to give you and your family lots of Nachas, in good health for all of you!!

anonymrs

Tue, Jul 08 2014, 11:54 pm

I daven for Kayla Rus every day. Hope she and you are doing well.

obsesseddancer

Tue, Aug 12 2014, 10:32 am

I have not been on here in a long time. I received an email today notifying me of a private message requesting an update, so here it is. There is nothing much to update. Her disease is considered "stable" in the sense that it has not spread or increased dramatically, but the small tumors she does have are still active and slowly growing. We are stalling by keeping her with her current load of chemo to prevent (we hope) a change in this relative stability until a promising clinical trial comes along. We had been hoping for a PD1 trial (this is a promising vaccine that has had success in melanoma and lung cancer), and they were supposed to be conducting a sarcoma trial at the NIH this summer, then pushed off till fall, now it is officially off the radar. Please pray that whatever is holding up the works either at the scientific or red-tape FDA end will be resolved soon.

She recently celebrated her 17th birthday, on 2 Av (English was Aug 5, Tisha B'Av). Uneventful given that they were during the 9 days, and she has been doted on since by some close friends, but other than that, with the world situation what it is, no one is really in the mood to celebrate anything. I was actually going to post this update announcing her birthday, and just couldn't bring myself to do it.

Financially things are worse than ever, and since I have been "quiet," people's generous donations have all but stopped and we have gone through most of what was coming in, but I have not wanted to ask again. I keep praying that Hashem will send us our sustenance in a more "honorable" way.

Just taking things one day at a time, waiting for Moshiach.