BDE Kayla Rus A"H bas Bunim Tuvia

↑ obsesseddancer ↓

Tue, Nov 26 2013, 10:03 am

Thanks, actually the Shulamis is easy too! Think of Shalom (I need some peace of mind) and refuah SHLEIMAH!

↑ obsesseddancer ↓

Tue, Nov 26 2013, 10:14 am

ChutzPAh wrote:

I daven for Kaiyla rus everyday as well. Is there a BikurCholim that can arrange pick ups and drop offs at the hospital? This will save you stress and $. Sorry if you already looked into that.

Thank you, no need to apologize for the suggestion... but this is difficult because we live in Staten Island and most volunteers for organizations like Chai Lifeline are in Brooklyn. As a matter of fact, we are desperate for a ride this afternoon (for a 2pm appt) to Columbia Presbyterian, which is in Manhattan near the GW Bridge... but in order to get a ride, we have to first drive into Brooklyn. Driving home from there later will be horrible, because of the rush hour traffic on the SI Expressway. If anyone out there can actually come to Staten Island to get us, it would be a miracle. And in general, getting rides is difficult because we never know how long we will be at the hospital, and it is sometimes more freeing to have our own car for the independence of coming and going when we need to. Yes, it would save gas $, but not time, as we would have to wait for the pickups, and it is always more comfortable for her to have the privacy of my own car. I just need better sleep because I get so sleepy while driving! Sad

↑ mema613

Tue, Nov 26 2013, 8:02 pm

I IYH will be davening for you for health, strenth and parnassa. I also am davening for your daughter.

↑ greenfire ↓

Tue, Nov 26 2013, 8:13 pm

obsesseddancer wrote:

Thanks, actually the Shulamis is easy too! Think of Shalom (I need some peace of mind) and refuah SHLEIMAH!

you have creative hints Hug

↑ amother ↓

Wed, Dec 18 2013, 1:38 pm

obsesseddancer;
Sent $100 via the chai lifeline link.
Hope you are well.

↑ obsesseddancer ↓

Mon, Dec 23 2013, 11:37 am

So, this new chemo is doing a real number on her immune system. She was admitted last night for fever, she was taken to the hospital in the middle of a wedding. Please daven that the doctor changes her chemo to something that works without making her so sick, I never had a really good feeling about this particular concoction... This is actually the 2nd time she was admitted in 2 months, which was more than the previous 2 years. I am going to be spending a lot on gas this week (more than the usual fortune), so please remember us. You can get a tax deduction for 2013 if you use the Chai Lifeline link before the end of the year! Wink

Thanks so much.

↑ boysrus ↓

Mon, Dec 23 2013, 2:16 pm

Hi OP
I am still davening for your daughter, I will IYH intensify my tefillos for her this week
look forward to hearing your good news very soon
many hugs xxx

↑ greenfire ↓

Mon, Dec 23 2013, 6:18 pm

I'm sorry ... I say her name & your name in my davening ... please stay strong

↑ amother ↓

Mon, Dec 23 2013, 7:25 pm

Hugs to you all. I was at the kosel today and I davened specifically for Kayla Rus and your family.

↑ obsesseddancer ↓

Tue, Dec 24 2013, 4:29 pm

Thank you all. Baruch Hashem we are home now, she will be on antibiotics for the next couple of weeks and the doctor is rethinking the chemo and hopefully coming up with a new/better plan. Please daven that she (the doctor) should be Divinely guided.

↑ greenfire ↓

Tue, Dec 24 2013, 5:38 pm

obsesseddancer wrote:

Please daven that she (the doctor) should be Divinely guided.

amen !!!

↑ boysrus ↓

Mon, Jan 20 2014, 10:09 am

HI obsessed dancer, last night my twelve year old son asked me how kayla rus is doing (my kids all daven for her every day in refoeinu). So, I told him I would try to find out!
What's news, how is she doing? and how are you doing'? we would love an update...
with contiued wishes for a refuah sheleimah

↑ Culturedpearls ↓

Tue, Jan 21 2014, 7:45 am

Yes, please update us. I have Kayla Rus in mind every week when I take challah.

↑ PinkFridge ↓

Tue, Jan 21 2014, 5:46 pm

Please update us only if you want to. If not through you, do you have any friends on imamother who can speak for you when you don't have the koach?

↑ obsesseddancer ↓

Sun, Jan 26 2014, 6:02 pm

Hi, everyone, sorry I have not been on the forum lately. I do finally have some news, but must keep it a little vague, as I found out that someone from my neighborhood who has given me trouble (there are always THOSE nudniky people) may be on this forum and following my topic. If you want further details about the specifics of our plans, you can pm me. It is a shame there is no way to "block" people on here like on facebook because the majority of you have been so wonderful and such a great source of comfort and support, that I feel badly that I cannot speak with total candor.

Basically, we will be going to the NIH in DC for a clinical trial in NK cell therapy. You can google it for a better explanation than I could possibly attempt here. It will involve being down there for a whole month, without my husband or the rest of my kids, and I will be missing both Purim and my baby's 8th birthday while Kayla Rus & I are away, and I am extremely apprehensive about the logistics of this trip, as well as the outcome of this very experimental procedure. If it works, it will stimulate her own immunity to fight the cancer. If it doesn't, we are back to the drawing board finding other treatments, and she will have lost her hair all over again for nothing. We will be going in a few weeks. If you are down there and can offer specific help, please pm me.

The other thing is that our first trip there will not be paid for by the NIH, and we don't know if we should fly, take a train, or what... my car is too old and decrepit to risk driving there. After the first trip, more expenses will be covered, but we also have kosher food needs which will be taken care of while she is inpatient, but in the several weeks she is outpatient afterwards, we will be more on our own. So there is a lot to think about, and I am not a well-traveled person. (This is easy for some people). Anyway, so this is where we stand right now. Any and all help, prayers, advice are welcome. Thank you all again.

Tova ↓

Sun, Jan 26 2014, 6:46 pm

I live in Baltimore, about an hour north (my father works for the NIH, which is a HUGE multi-location campus but it's possible that he can help in getting things to/from Baltimore if needed). Please PM me and we can exchange e-mail addresses or phone numbers and tell me what I can do to help. Please... and wishing you much continued hatzlacha. Have you been in touch with Bikkur Cholim of Baltimore and Gevuras Yarden here?

↑ MaBelleVie ↓

Sun, Jan 26 2014, 8:25 pm

Once again, I wish you lots of strength- and may these doctors be the shlichim you need for a full refuah bekarov. Hugs, hugs and more hugs to you both.

↑ obsesseddancer ↓

Sun, Jan 26 2014, 9:38 pm

Tova, I have not been in touch with anyone yet down there, we have only just been given the dates. That is why I am so nervous. I am sure there must be a Chai Lifeline presence there too... I will appreciate any & all help & will pm you, thanks so much.

↑ amother ↓

Sun, Jan 26 2014, 10:01 pm

Bikur Cholim in Washington gives great support to families at NIH-- please contact them!

http://www.bikurcholimgw.org/

You can also sign up for the Silver Spring Jewish Listserve (http://www.jewishsilverspring.org/) we are a very friendly, helpful community and often get requests from families receiving treatment at NIH. Sometimes people post about rides to/from NY and often about bringing packages to/from NY.

There are so many options for getting to DC. The cheapest/easiest from NY is the bus. I prefer Bolt or Megabus. They both take you very near the metro, so very easy to get to NIH. Amtrak is also very reliable and a bit more comfortable...tickets often go on sale.

↑ the world's best mom ↓

Sun, Jan 26 2014, 10:10 pm

NIH is an amazing hospital. They save many lives. You need to know that you are trying every option, regardless of the chances of them working.

I am assuming that there are organizations that will help pay for transportation and accommodations. You can ask Chai Lifeline of NY about their branches there. They will direct you to the right people.