Settling In to the Next/Current Phase (Thursday) and fyi to visitors…

by Judith

According to our count, this might be Phase/Stage 6 in this odyssey. (Not sure that’s the right word but WTF).

Now we’re settling into another phase, new routines: home hospice.

And we ARE settling in.

The pain is now running pretty typically at about a 3 on the 1 to 10 scale. (The 15s on the 1 to 10 scale were the worst.) We now have 60 hours without a vomit: the longest vomit-free period since mid-September.

Her kidneys have apparently returned to work after striking. (I say apparently since all we have to go on is urine production: which we have. Hurray.)

She seems comfortable but she is sleeping close to 24 hours a day, although today she had about an hour and a half of relatively awake time.

She actually ate a couple of bites of Cousin M’s decadent chocolate cake tonight while K— was here. K— said she’d have a sliver, too, since it seemed rude not to join her eating the cake.

I, myself, have graduated from magical thinking to full-fledged, possibly, delusional thinking. Kidneys back; young bone marrow: time for the miracle. (Cousin C’s note said, “We (Cousin C and two dear friends, also nurses) three and more are daily praying for a total cure…we all have seen miracles; we all have seen cures.”)

It’s about hope. Things look dark but we are treasuring all the moments. Someone is with her 24/7. We continue to cope: with the kindnesses of family, friends, and even strangers, which mostly makes us cry.

O is coming home tomorrow from Cincinnati. Friends coming from Vermont, Boston, NYC, Cancun, LA and Switzerland. Neighbors have opened their homes to host Kirby’s guests. When she was coming out of her most recent procedure at GW hospital to have her stents redone Kirby said, “This is happening really fast. I didn’t have a chance to say good bye…”, but it looks like she is getting that chance now, and is looking forward to it. She knows you are coming to see her.

Our darling Kirby rouses from where ever she is spending most of her time now and thanks people for coming. She thanks Robert and me regularly. And we thank you all. Cranes, prayers, visits, gin, food, caring, EVERYTHING…

Visitors fyi: you should know she drowses and drifts. Looks great (her eyebrows have come back, v. dark…) but mostly her mouth is open for breathing. All this mouth breathing has dried out her vocal cords, we postulate, so when she speaks it is in a high squeaky voice…she also drifts in and out of lucidity.

Sometimes, the Kirb we all know and love surfaces…

Sometimes she makes hacking phlegm-y noises; sometimes suddenly calls out.

If she knew, she might be embarrassed but we’re not, occupying the embarrassment free zone. Just love her.

Advertisements

19 Comments (+add yours?)

  1. Cristal
    Jan 20, 2012 @ 19:48:54

    There really is “no place like home.” Kirby is surrounded by ANGELS, physical and spiritual. We’re all praying for miracles. Also, sending lots and lots and lots and lots of loving thoughts to you all. Continue to treasure and cherish each and every moment. Happy you enjoyed the music. Looking forward to coming next week. Remember, we’re a phone call away!

    Reply

  2. Jane Angarola
    Jan 20, 2012 @ 19:53:34

    Dear Judith, Robert, Kirby, and Owen,
    You may not remember me from your CHDS days. I’m still working here and I remember all of you well and fondly. I’ve been trying to think of how I might be useful, and your recent post gave me an idea. I live nearby, have a couple of spare bedrooms, and would be happy to host some of your out-of-town guests. Please just let me know if that would be helpful. And know that you are all in my thoughts and prayers.

    Reply

  3. Abby B
    Jan 20, 2012 @ 21:11:04

    Thank you, thank you for the update. We are all thinking about you so much. There is so much love coming your way from so many places.
    Love,
    Abby

    Reply

  4. Kim Franklin
    Jan 20, 2012 @ 21:23:59

    Although not as convenient as Capital Hill, we would also be happy to host any of the visiting friends/family here in Arlington. Izzy is going to NYC on a school trip until Mon. night so we have her room and our sofabed available.

    Kim, John & Izzy

    Reply

  5. Michele McCabe
    Jan 20, 2012 @ 21:25:06

    Dear Kirby, Judith, Robert and Owen,

    You don’t know me and I only know your family by name. I work at Burgundy and have for 13 years. Devin Burke alerted me to Kirby’s illness a few months back and the school sent some cranes and I have followed the blog.

    This whole situation breaks my heart. These things are not supposed to happen to young people. As a mother I can not imagine the pain the family is feeling. I pray, along with everyone else, for that miracle for Kirby. I also pray for her family and friends during this unbelievably difficult time.

    After work tonight I will be having dinner with my 21 year-old son. I always appreciate the time we spend together but after reading these entries I will appreciate it even more. Time is so precious.

    Reply

  6. Sarah B
    Jan 20, 2012 @ 21:40:32

    Dear Kirby,

    I am remembering: lots and lots of Hillel board meetings. You and Nora nerding out about engineering in the K. Your voice on one of the Senior Banquet recordings, rising above the general noise of conversation to say, “DON’T LOOK AT ME, I’M JUMPING!” (I have no idea what this was in reference to, but it makes me giggle when I hear it.) Smith Hillel dressed as Herschel and the Village People, giggling over diner milkshakes and Pictionary Telephone on Purim. Fun times in the Seelye computer lab working on the Smith haggadah. You freezing your mouth on a frozen chocolate-covered strawberry at your Senior Banquet. A trip to IKEA with Yael the summer after I graduated from Smith.

    Most of all I am thinking of you, and sending you my love. If I were there I would sing for you (I’m a cantorial student now!). Since I’m not, here’s this:

    And way back where we come from we don’t make our own haggadahs
    So thank God that we have Kirby in Hillel working hard,
    Though she lives in the land of Quad people
    And is an engineer, we still say, [I love you].

    Love,
    Sarah

    Reply

  7. CK
    Jan 20, 2012 @ 21:42:24

    Thank you for sending good wishes our way even in these difficult times. My mum has you all in her prayers. We are all hoping for a miracle.

    Reply

  8. Milton, Judy, Katie and Samantha
    Jan 20, 2012 @ 23:38:28

    Dear Robert, Judith, Owen and Kirby,
    Thank you for letting us overstay our time with you on Wednesday night. I was touched that Kirby opened her eyes to greet me with ‘thank you for coming.’ She is gracious even when she is in and out of her sleep. I am keeping you all in my prayers, and hope that there is a miracle. I think the miracle that is happening now is that she is able to rest without throwing up, going through chemo, and having less painful episodes. Thank you for sharing your life with us.
    Sending our love,
    Milton, Judy, Samantha and Katie
    I sense your cat knows whats going on, b/c she sat next to Kirby the whole time we were visiting. She is another guardian angel, purring and protecting.

    Reply

  9. Nanette
    Jan 21, 2012 @ 01:27:33

    ….and you are an AMAZING family. I am much more than simply grateful to be a part. Love n

    Reply

  10. erin*joy
    Jan 21, 2012 @ 01:55:02

    Dear Kirby, Judith, Robert, Owen, Aunt Jean, and the rest of the angels surrounding Kirby:

    I am so glad I had a chance to be there with you today. Judith and Robert, it was good to see you, to be with you for a few moments. And wonderful to see Kirby for those few precious moments. Kirby, you are a true warrioress — one of the kindest I have known. You bring so much light to the world.

    Two days ago another friend from the Smith Sign Language group just let me know that all of this is happening and sent the link to the Blog. (For my own complicated reasons, which I will spare you right now, I fell out of the loop of communication with most people for a while, though I am back now, and, it appears, at as good a time as any.)

    Of course I keep you in my prayers, constantly, constantly. I hope to see you all again very soon. This Sunday-Wednesday my plan is to be in Massachusetts. If there is anything special I can bring from Northampton, feel free to let me know. If there is anything anything at all that I can do to offer support, feel free to let me know. For now, I send flute songs & soft steady drumbeats.

    Oh, and, absolutely, a belief in miracles.

    Love,

    erin*joy

    Reply

  11. saraberney
    Jan 21, 2012 @ 16:28:13

    Dear Kirby, Judith, Owen, and Robert,
    I am sending all of my love, prayers, angels, to your family, especially Kirby. My dad recently shared this blog for Kirby with me when I was back in the states over the holidays. I have such fond memories of spending the holidays with all of you each year.

    You are all in my thoughts!

    Much love,
    Sara Berney

    Reply

  12. Martha and David Adler
    Jan 21, 2012 @ 21:33:50

    Dear Kirby, Owen, Judith, and Robert:
    We are thinking of you and sending you our love. Most of our connection with you, Kirby, has been through the periodic influxes of Graeter’s ice cream; I’ve always wondered whose flavor was which. I’ve always been so happy to think of you all with your individual pints. I don’t know what I can say except that your lives are touching so many people, whose hearts are enlarged as they break with yours. We are sending our love.
    Martha and David Adler

    Reply

  13. Katie Shinberg
    Jan 22, 2012 @ 19:51:58

    Kirby, I wanted you to know that you inspired the name of my new cat. She’s a sweet little black girl, 10 months old, and definitely has a will of her own. So I was thinking about appropriate names and I remembered how you introduced Samantha and I to “Anne of Green Gables” when we were younger, and how much you loved that series and imparted that love to us. So I’m naming her Annie, after that wonderful character, and after you, Kirby, because you’ve always done what you love and inspired those around you to do the same.

    Reply

  14. Ashley castillo
    Jan 23, 2012 @ 01:17:33

    I just got the phone call from grandma roberta this morning before i got to work an i still remember that winter we went up there an i can remember the greatest moment was with kirby an she had photography class an her snappin pics while we laughed an joked while i played in the snow an just wanted to let her know that its moments like those that i will remember an will live on… With love ashley an cruze

    Reply

  15. Ify
    Jan 23, 2012 @ 05:23:27

    Hang in there Kirbs.

    Reply

  16. Laura Cunningham
    Jan 23, 2012 @ 14:59:06

    hi hi,

    I’m a former staff member at the Cove who once belayed Own out of a tree top. I just wanted to let you all know that I’m thinking of you and holding you in my heart.

    Reply

  17. Kim Franklin
    Jan 23, 2012 @ 16:27:22

    Kirby, Robert, Judith, & Owen,

    John and I were so happy to have spent time with you all yesterday. The strings and sheer number of cranes were amazingly beautiful and a powerful representation of the love and prayers of support surrounding you all. I particularly loved your makeshift room at the back of the kitchen, Kirby. The warmth and comfort that a kitchen brings to a home, the heart of a house, make it the perfect spot for you to get the care you are receiving.

    Love and prayers,

    Kim & John

    Reply

  18. Toby Manewith
    Jan 23, 2012 @ 17:04:29

    Kirby, Robert, Judith, and Owen,

    In reading all of the reminiscences, it’s so clear to me that you, Kirby, have led a life so far that has touched so many people. We met on only a handful of occasions, but I can still see your smile, and the twinkle in your eye, and the clear looks of pride and joy on the faces of your parents when they were next to you.

    Today, you have given us all another gift. The reminder to take it slow, to cherish what we have, to see the light of love on dark, gray days. Thank you for unleashing so much light into the world.

    All of you will be on my mind as I kiss my son before he sleeps tonight. I’ll hold you in my heart and thank you for helping me to remember that love is the most important thing.

    Reply

  19. Zirka Pliszak
    Jan 30, 2012 @ 22:27:21

    I’m so sorry.

    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: