14 Comments So Far

  1. Dear Jackie,
    No need to add to your plate any concern about causing worry to those of us who read your posts. You get a total pass for voicing whatever you need to vent or share or request. I was in Bodacious Bagels this morning and heard an Adele song on the radio, thought of Ana and her beautiful voice, and was so emotional I practically had to leave the store. We are all pulling for Ana and for your whole family every step of the way. I saw you across the room at hms orientation last night and wanted to reach out; there is so much i wanted to say but I felt awkward in how to say it. Thank you for creating this site and allowing us all to be with you (virtually) and to connect with you and each other as Ana makes her journey to recovery.
    Lots of love to you all!
    Shawn Fischer

  2. Jackie,
    Tom (my husband) works at Georgetown. Recently, we got their newsletter featuring a mother who had come up with a special smoothie recipe book for her child with cancer. Of course, I can’t think what her name was. I will try and track down her name and search around on Amazon. It sounded delicious. You have probably already tried smoothies, but just in case…..
    Catherine (Noelle’s mom)

  3. Who can help but worry at such a time? Although there is plenty of advice about “letting it go” and “turning it over to God” and such, it seems to me to be more like a long, pitched battle to me sometimes. The moment the worry is “handed over” it’s back in ten seconds. It is just this gnawing worry of waiting I was praying about last night for all of you. I’ll keep at it.

    It’s very good to hear this positive news about Ana’s care – good for us, of course, but perhaps good for you to articulate and reinforce, too. It’s a positive thing to throw against the day’s many worries.

    For what it’s worth, I do try (try being the key word) to let go of the worst of worry at the end of the day. I hear God’s going to be up all night anyway. But when it can’t be let go, someone once said something like “some people pray; I worry – same difference.” The thoughts and cares can be directed to the same place – like I said, God’s staying up tonight. Again.

  4. it was so good to see you at community night jackie. i am so glad the x-rays were clear. we will keep praying for more things to be clear, and for a clear and swift path to healing.

  5. Thank goodness the scans were okay!! I’m reading each post and still thinking if you every day. Will send to your PayPal soon – have not forgotten. Big hugs and fingers crossed for good news on Monday. X

  6. OK, now that THAT’s out of the way, please feel free to vent and worry and spill and spew all you want. You’re allowed. It really sucks that during times like these you have the weight of the world on your shoulders and just let thoughts and anxieties out to release them just to be like, “Oh-no, now everyone is worried about me being worried about my worries and worried about things I didn’t know others would worry about so now I have to worry about worrying people!!” Things like this are a two-fold burden – You are scared to death and navigating uncharted waters AND you have to be strong when you want to just collapse. The irony of these life battles is people will look to you and Jim as a source of strength. Odd, huh? Like soldiers look to their General for confidence before facing and fighting an unknown enemy. ‘Tis not easy. Vent away… The way will be made clear.

  7. Jackie,
    Has the hospital sent records to Boston Children’s yet so they can give you more information/ other informed opinions? I felt optimistic that they had seen a few children with similar symptoms.
    Mary Ann

    • It’s not looking like it’s EHE anymore, so they’re holding off until all the biopsy results are back. They are completely willing to send things out to wherever we want once they get those results. Right now the slides are with a pathologist at Sloan Kettering who is the leading specialist (in the world) on liver pathology.

  8. We spent a large part of the day in the x-ray and bone scan rooms. I think they were trying to keep us busy. 👿

    The good news is that the x-rays were good. 🙂

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