Saturday, May 12, 2012

Days Negative 6 and 5: A Very Unrestful Shabbat

Lighting our new electric shabbos candles did not bring any rest to room 935. Ezra is feeling the effects of the chemo pretty hard with steady vomiting and diarrhea. He also tested positive for a bacteria in his stool, which we are treating with antibiotics. We are up every hour and a half or so at night with him changing diapers and clothing. He is still in pain from the central line. He now has a PCA where we can push the button to give him extra pain medication. The surgeon stopped by to discuss swapping this new type of line for the old kind if he continues to be in so much discomfort. That will require another round of anesthesia and another recovery period and the chance that he might be in the same amount of discomfort, so we are sitting tight for another day or so in hopes that the pain starts to alleviate.

He also had a bad reaction to a nausea medication today that caused him to rage, so they had to give him a sedating drug to calm him down. He's been sleeping ever since. Hoping he doesn't wake up at 2:00 AM looking to hang.

Ezra also has stopped eating for the most part, which is to be expected. But when he was eating, Ezra had a chef, Chef Pnina, catering to his every need. Chef Pnina runs the Sloan-Kettering pediatric food service and is incredible. She met with us when we first arrived and has been determined to make Ezra everything he likes, just the way he likes it. She took Bubbe's recipe for salmon croquettes, added veggie puree and all, and made it just like Bubbe. She went out and bought his favorite piccolini wagon wheel pasta and sent up an entire pint of Hagaan-Daaz vanilla ice cream. None of that half-fat ice cream they give out for Dr. Ezra. It's a comfort to know that when he is ready to eat again, Chef Pnina will be here cooking up his favorites.

But what brightens us up the most is the steady stream of emails, texts, cards, and presents, letting us know we're not alone.And after shabbos ended, we got news that a group of Evan's bike commuting friends have gotten together to help pay the fees for our room at the Ronald McDonald House.  Can't find the words to adequately express our gratitude. Thank you to all.



20 comments:

  1. You're in our hearts, prayers and thoughts 24/7

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  2. Sorry to hear Ezra still in discomfort. Our thoughts are with you all every day and sending best wishes that Ezra starts to feel better soon.

    Barby & Shayne

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  3. Sorry to hear that the yuckies have hit Dr Ezra already. Hoping he feels better soon. The first couple of weeks are the hardest but it WILL get better. Love the personal chef. What a lucky kid.

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  4. thinking of you all and sending love your way

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  5. I don't know you but my heart and prayers go out to you. Hope Ezra starts feeling better soon!

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  6. Hoping tomorrow is a better day. Love, Adam, Beckie & Spencer

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  7. I also don't know you but have been thinking about Ezra and following your blog posts. He's in our thoughts and prayers!

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  8. I don't know you either but only wish you the best. My daughter was treated at Memorial Sloan Kettering and thank G-d we go back for checkups! They are amazing there as is Chai Lifeline. I hope you have connected with them. I will add your soon to my tehillim lists. Wishing you only the best.

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  9. Oy vey, so sorry. Ugh. Chemo sucks, there's no two ways about it. My good friend just went through it, and it's tough. But even harder for such a little guy. Our thoughts are with you constantly. Hang in.

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  10. I don't know you but have been following your story. My thoughts are with you and Ezra, trusting that everything will turn out perfect. All the best!

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  11. I am Ruth Miller's cousin. I have been following Ezra's progress with Ruth for a while now. I even ran a drive here in Baltimore in hopes of finding him a match. On this Mothers day, I wish you all strength. I know the love is there already in abundance.
    Refuah Shelma and quickly!
    Julie August

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  12. Robin, Evan and Ezra, I know no matter we say it can't make it go away. We pray each day and just want all that pain to go away for little Ezra.
    Life as we know it will get better.
    Love to all,
    Vicki and Andy

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  13. My daughter was in Ezra's music class last year, and we're friends with Lisa and Brian C. We are thinking about you every day and praying for a r'fuah shleima. --Wendy Grinberg

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  14. Ezra you are in our prayers. We all follow your blog and await your return to Ahavat Achim.
    Lang Family.

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  15. Thinking of you. Knowing exactly how you are feeling. All will be ok. :)
    Sending you are warmest wishes... Hoping Ezra feels better quickly
    And that you both stay strong.
    Susie Welling

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  16. Sending love and prayers.

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  17. We are thinking of Ezra every moment and praying for an ease to his pain. Rosie can't wait to hear Ezra play the guitar again. Sending love to all of you! - Jodi, Dan, Rosie & Livi

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  18. Hahshem should give Ezra a refuah sheleimah and all of you koach and chizzuk. G-d willing we should hear good news from you.
    Edie Goldberg (I know Karen from spinning class)

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  19. Thinking of you all and praying daily for Ezra. Everyone at GOL is sending well wishes for a refuah schlema. - Jay

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  20. Robin, Evan and Ezra,

    I am thinking of you guys and hope that god gives you lots of strength to gets through these very tough days. I can't imagine how exhausted you must be. I pray that the next week is easier on I'll Ezra. Thinking of you and sending love. Jennifer Simicich

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