Scenic Rt.1A

A good friend of ours described her life, raising a son with Down’s syndrome like driving on scenic highway 1A.  Everyone else was on interstate 95 speeding here and there, and she was wondering on the back roads. This is a good analogy for our lives living with cancer. We are on the scenic and treacherous route 1A.

Sometimes we come around the corner and there is a beautiful scenic overlook – a smile, a good day, and sometime we run off the road and find ourselves in the ditch.

We met with the Dr. today and found out that the recent scan shows the current chemo treatment is not shrinking the tumors. They continue to grow and spread. The Dr. has contacted the National Cancer Institute and we are working on having Kirby accepted into their program. Because her cancer is so rare there is no one doing specific trials but there are people working in related areas.  It’s a big place and it may take a while to get her into the system. Dr. Judith (the amazing mother) has been pushing for this and predicting this but it seems like Dr. Protocol needs the standard therapy to fail before moving on to the next step.

The good news is we are probably done with the cisplaten chemo, which has been very hard on Kirby. The other glimmer of good news is that the pulmonary embolism may be gone.

In the meantime we are trying some new nausea meds.

I think we at around 4,500 cranes, with bags and tubbies filled with groups of 25 still to string. One of Kirby’s Smith college friends arrived last week with 1000, all the same size, small ones, which we are keeping nested in a basket.

The craft fair at Temple Micah, last Sunday was a success. Kirby’s customers showed up and shopped. We thank you and thank you on behalf of Temple Micah.

We thank you all for all of your visits, good thoughts, prayers, jokes, and all of the good energy you send our way.

Advertisements

12 Comments (+add yours?)

  1. Shelley Temchin
    Dec 15, 2011 @ 20:02:51

    To brave Kirby and her family, and the whole wonderful community that is supporting them with prayers, friendship and cranes,
    I can only help that the next bit of road is smooth and beautiful.
    Best wishes in this season of lights,
    Shelley

    Reply

  2. stephaniecavanaugh
    Dec 15, 2011 @ 20:11:33

    Our thoughts and hopes, as always, are with you. Love Stephanie and Greg

    Reply

  3. Olya
    Dec 15, 2011 @ 20:54:22

    I’m hoping and praying for you.
    And sending you lots of love,
    Olya

    Reply

  4. Yael
    Dec 15, 2011 @ 23:46:09

    Love you so much, Kirby (and Capen-Weinstein family). Will be sending good thoughts and prayers your way, as always.

    Also, a joke:

    Why did the farmer sell his talking donkey?
    Because he was tired of his smart ass.

    Reply

  5. cousin Rochelle and family
    Dec 15, 2011 @ 23:49:07

    HAVE YOU EVER CONSULTED THE CITY OF HOPE? THEY ARE OUR RAY OF ‘HOPE’ OUT HERE AND I KNOW THEY TAKE PEOPLE FROM ALL OVER. WORTH A PHONE CALL FOR SURE.
    ROCHELLE

    Reply

  6. Milton, Judy, Katie and Samantha
    Dec 16, 2011 @ 00:00:45

    We continue to keep you in our prayers. How about having a Chinese dinner ( if you are up to it) so we can celebrate our annual ‘Jewish Christmas-Robert’s birthday’ get together? We would take your orders and pick it up and take it up to your house. What do you think? I know each day is unique in its own way and b/c I work at a hospital our credo is ” one day at a time” . I can see that you are also living by that motto and finding out that each day brings something new with it, and hopefully you can find a glimmer of something good in the day. We are all sending our love and positive energy your way. Let us know if and when you would like us to place your order. ( One from column A and one from column B.) Kirby, I know Katie is going to love the necklace you made. It’s a suprise gift and her favorite colors are green and purple. The necklace is gorgeous and thank you for creating such a beautiful piece of jewelry. You are a gem.
    May G-d bless and keep you,
    Milton, Judy, Katie and Samantha

    Reply

  7. Ilona Klein
    Dec 16, 2011 @ 00:11:36

    Oh, cranes that need stringing … time for a return visit. I would love to come any time after January 7 … let me know what might work for you. Of course flexibility is understood.

    Love and gentle hugs,
    Ilona

    Reply

  8. Linda Berman
    Dec 16, 2011 @ 00:20:08

    We are so sorry that it’s been SO hard. We think of you all, all the time, and wish you strength. Hopefully NCI will come through soon. Thoughts and prayers from the midwest, Linda and Henry

    Reply

  9. Becca B
    Dec 16, 2011 @ 01:30:38

    So sorry about the news today, but I hope that NCI gets you in and that soon there will be another beautiful scenic overlook (and you’ll literally have one in a few days too!) 🙂 Am now looking in my schedule for a tea party date when you return from Florida… (will email you and Kate) and you’ll be the all nice and tanned one, and Kate and I will be Pillsbury dough-like (or at least I will ;-))
    Thinking of you always- I hope you know that!
    Love,
    Becca
    P.S. And for no reason whatsoever…a puppy and a baby playing together: http://www.huffingtonpost.com/2011/12/14/puppy-plays-with-baby-cut_n_1148868.html?ref=funny-videos

    Reply

  10. Jan Greenberg
    Dec 16, 2011 @ 14:23:12

    Hang in there, Kirby (and mom, dad, and Owen, too 🙂 ). Have a great time in Florida – soak up the sun, warmth, and rest – and hope to see you when you get back.

    Sending you positive thoughts and energy, and lots of love and hugs …

    Jan

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: