OCTOBER 24 — A Year & A Half

Caitlin in Boston at our favorite spot           (Sorellina).

So, an update. Today marks 18 months on the waiting list. A year and a half. It’s a longer-than-normal wait, no question.

Caitlin had her biannual transplant appointments this past week. There is a new surgeon here (there are 3 on the team), whom we met and really liked. Everyone on the transplant team seemed to be conscious of assuring her that she wasn’t being forgotten. They are obviously accustomed to dealing with a lot of frustration once the wait gets long. This is how it goes, though, and petite women like Caitlin are the hardest to transplant, because the chest size is small.

However, she’s very stable, and in good shape for surgery!  We do hope it will happen during a stable time like now. Every day waiting is another day closer… right?

We are fortunate to know a few other CF people, Caitlin’s age, who’ve been through all this and are on the other side, doing really well. It keeps us going.

The unexpected trip home was incredible. Surreal and wonderful.  We stayed for two weeks. I cannot convey how thrilled I was to see the star-filled night sky again. Caitlin saw friends and enjoyed favorite Boston sushi she’d never thought to eat again (no sushi once immuno-suppressed.)

For me, two best moments: One night, Nick and I were outside cooking on the grill, and my favorite, autumn Indian flute music was playing. The wind through the branches was perfect, soft. I was really home!!  I just closed my eyes and held onto it a moment.

The second was the night that Caitlin and I sat on the back step and watched the entirety of the  beautiful red lunar eclipse.

We caught the early foliage at home.

Andrew drove back with us and stayed for a good stretch. He and Caitlin discovered the beautiful, large Frick Park here, with accessible hiking trails, and visited it a few times.

Someone told me that fall lasts two weeks here, and it seems true. The skating rink in PPG Plaza is nearly installed, and the holiday lights are up. Holiday festivities officially start here on November 20, which is only a few weeks away, I guess.  We didn’t expect to see another holiday season here, but  we’ll enjoy it. Live trees aren’t allowed in our condominium building, so Caitlin’s getting her wish–a silvery-white, retro fake tree.


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7 thoughts on “OCTOBER 24 — A Year & A Half

  1. So glad you had such a wonderful, memorable couple of weeks at home. Although, not mentioned, Abbey Mia wants to be sure that Henry had a great time, too.
    Prayers continue for the transplant to take place soon. That is highest in my wish for you for Christmas this year.

  2. Maryanne thanks for the update and for your beautifully expressed thoughts. Glad to hear that you and Caitlin had a good visit back home. Keeping my fingers crossed and sending lots of prayers and good wishes your way that things move along quickly. Take care.

  3. So glad ye got home for a bit. Glad cailtin is doing well. In our prayers always. X xx love to u all

  4. I always love reading your updates Maryanne, so positive and uplifting even though your living through a difficult situation. Inspirational..

    I’m so pleased you had such a wonderful two weeks at home and it sounds like you have lots of happy memories to keep you going while you wait for the call to come, which I’m sure will come soon.

    Lots of love to you, Caitlinn, Nick and let’s not forget Henry!

    Eileen & Padraig

    • Thanks for the update Maryanne, CAITLIN is always in our prayers and never far from our thoughts. Love you all and God Bless. Dan/Marian

  5. Getting back home during fall is like visiting an art gallery. Heavenly. Love hearing how stable Caitlin is and praying her day is near. Please post a photo of that retro tree. How fun is that?! Stephanie has one, too. A cool vintage one my dad would sneak in every once in awhile. He liked modern. Color wheel and all. 🙂

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