Discussion Board Forums Surgery, Resection & Transplant Treatment Options Miraculous call from Dr. Kato for ex-vivo resection transplant

Viewing 15 posts - 16 through 30 (of 33 total)
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  • #68684
    gavin
    Moderator

    Hi Darla,

    This is excellent news all round and I am seriously happy for you!! I will be keeping everything crossed for you and tons of positive thoughts are coming your way from me.

    Best wishes,

    Gavin

    #68683
    willow
    Participant

    Darla, this is FABULOUS news! So happy for you! I also would suggest checking out Livestrong foundation (btw they no longer have Lance in their organization). I heard a long interview with someone from the foundation on NPR last weekend .
    Best wishes while you prepare for surgery!
    Willow

    #68682
    pamela
    Participant

    Dear Darla,

    I am so happy to hear that a surgery date has been set and I am sure everything else will fall into place for you. Sending positive vibes, strength, love, and hugs your way.

    -Pam

    #68681
    marions
    Moderator

    Darla…wonderful, wonderful news. Shedding tears of joy right along with you.
    Fingers and everything else is crossed on this end for an extraordinary result heading your way
    Hugs,
    Marion

    #68680
    sdcarlson89
    Member

    To all my cc friends and family,

    I finally got the phone call from Dr. Kato, and my surgery consultation and pre-operative testing will all be done on March 1st. They have blocked off Monday March 4th and Tuesday March 5th for the surgergy date.

    When I got the phone call I was on the way to get my chemo in traverse City. I cried tears of joy because now it is completely real. I couldn’t stop crying, I think I cried all the way from Manistee to Traverse City which
    is an hour. I just feel as if God has blessed us with a miracle.

    More good news…. I also got good results on the cat scan. The largest tumor which started out at 9 cm. has shrunken down to 5 cm.

    Thank you so much for all your wonderful words of encouragement and for the words of advice and web sites. We are still trying to plan the trip and put things in place yet. ACS is trying to set us up with Flights of Mercy Medical. We just have to figure out our lodging and transportation in the city.

    Thank you so much again!!
    God Bless you all!!!!

    Love,

    Darla

    #68679
    kris00j
    Participant

    Darla:
    ACS is a wonderful resource.
    I’m not sure where it’s located on 32nd st, but there is a place called Hope Lodge that gives cheap lodging to cancer patients and caregivers. I never checked into it. You can find out about it from ACS. Also, Sloan Kettering allowed a “family member” to stay in the room with me.
    I am sure you are overwhelmed, but I suggest you get the paperwork started to protect yourself. You can use it when needed. I worked with someone who used it even when he came back to work as he was unable to work full weeks… It protected him.
    You can also get disability, which is usually granted on the first try for cancer patients. I used a lawyer and it ended up being free because I was approved before I was eligible. The only down side of that is you can’t make more than $999/month. But it is an option if you do lose your job.
    Ask NYP if they offer a bus/car transport. And they offer cheaper hotels, too. You should ask them about them.
    Also, ACS offers travel help. You need forms and your dr needs to sign them but ACS will reimburse up to a few hundred $$.
    Good luck with everything! I am thrilled for you that you are getting such a giant slice of hope!

    #68678
    tiff1496
    Member

    I’m so glad your getting a surgery!!
    My best advice to you for help is to call the american cancer society!
    They offer 1 free flight a year for a cancer patient and their caregiver. They can also help you find a hotel for cheap.
    They will also give you the names of any local help that you might can get.
    I hope this helps! Please feel free to send me a message if you need any more help!

    #68677
    lisacraine
    Participant

    Darla,
    Congrats! This is wonderful news. I know Tiffany uses Angel Flights and Kris goes to NYC for her appointments, they are both lovely ladies and I am sure they can help. Keep us posted
    Hugs,
    Lisa

    #68676
    jathy1125
    Participant

    Congrats Darla-How overwhelmed you must feel right now! I would contact our Tiffany, she seems very versed in aid for out of state treatments, I think she will have lots of good advice and sites to use! I also agree about applying for SSDI, it is so easy. You start on line and then they do a phone interview and that is all. When I applied it was the first part of December and on December 28th I had my yes. My first check was in Febuary, because that woud been have 5 months from my diagnose date. I would think yours would start right away because you have been diagnosed longer than 5 months!! Get your app in before surgery so you can rest mentally and physically!!
    Lots of prayers-Cathy

    #68675
    dmj4ctj
    Member

    Darla,
    I used FMLA immediately after my husband’s diagnosis for about 4 weeks for Dr. appointments, chemo, crying etc. then I had 8 weeks left for intermittent leave for the same as above. I think your signature indicates only that you understand what your employers obligation is under federal law. They can let you go after 12 weeks but they don’t have to. It’s nice they haven’t counted your time off so far in the 12 weeks, but now you’ll be off for an extended period (hopefully just 8weeks or so) and I guess they have to start counting it. They’re just complying with the law I guess. Don’t stress about it. You’re one of the lucky ones!
    Dianne

    #68674
    pamela
    Participant

    Hi Darla,

    There is a website you should check out:

    http://www.cancercardxchange.org

    The lady that runs this is named Emily Thomas. You write to her and tell her your story and she will send you gift cards for gas, restaurants, or stores. Tell her what you are looking for in particular and she will help you. It is a wonderful program. I hope this helps.

    Love,
    -Pam

    #68673
    sdcarlson89
    Member

    Dear Friends,

    Thank you so much for all the great advice and websites!!! I am still awaiting the call for the date of the consultation. Hopefully after they see my cat scan results from Friday Jan. 25 I will get the call.

    I have been working since I do cover part of my family insurance and also pay for our heating bill through my work. I found out today that we have ( via a letter from my Dr. to approve me) short term disabliity for 6 weeks which will pay up to 60% of my gross income. It will at least keep paying for my insurance and for my heating bill while I am recovering. They want me to sign the FMLA act and that will insure my job for at least 12 weeks.

    I have used up all of my sick/personal/ and vacation time for this year already from being sick from the chemo thus far. I have wanted to keep working even though I have missed alot of time which has been covered by my PTO which like I said I have completely used.

    I am a little nervous to sign the FMLA act till I leave for my consultation and surgery. I am hoping to schedule my consultation and my surgery within the next week of, so that we can save some money on the trip to NY and instead of going twice – go only once for consultation and surgery.

    Does anyone know of where we might be able to obtain some fianancial help to help us pay for our expenses and the trip. Our church said that they may be able to do a fund raiser or take a love offering. I am worried about being able to come up with the funds to make the trip.

    Thank you and God Bless you for all your help and advice!!!

    Love,
    Darla

    #68672
    dmj4ctj
    Member

    Darla,
    Congratulations on your fantastic news! As far as disability goes, apply for it online on the Social Security website. You’ll get approved and pretty quickly too. The payments start 6 months after diagnosis. Not sure if you actually had to stop working at that point or not. Also, how about LTD at work? That too starts at 6 months. God bless you and may He guide Dr. Kato’s hands to heal you.
    Dianne

    #68671
    pamela
    Participant

    Hi Darla,

    I am so happy for you! I think you are the third person this week that has posted that Dr. Kato is going to help them. I pray for a successful surgery and many happy years ahead. I know that our Kris travels to NYC quite a bit, so maybe she has some pointers for you. I also know our Tiffany uses a flight service to get to MDA. I’m not sure if it is Angel Flight or not. I did pick up a brochure about Angel Flight once when we were visiting U of M. It sounds like a wonderful organization. So, hopefully she can help. I wish you all the best and please keep us updated!!

    Love and hugs,
    -Pam

    #68670
    lainy
    Participant

    YIPPEE, Darla! Bestest news ever. Just want to reiterate what Nancy said. A lot of Hospitals have some guest rooms or rooms nearby. May even have a shuttle, I would call the Hospital and inquire. Another hint is do your dining in the hospital. Sometimes the food is actually pretty good and will be much less than the NY restaurants. I am so excited for you and can’t wait to hear the date! All pur prayers and good wishes go out to you!

Viewing 15 posts - 16 through 30 (of 33 total)
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