13 Comments So Far

  1. keep writing Jackie, I know it sounds weird, but I enjoy reading your posts, you have such a way with words, you express yourself so amazingly in a way that makes us feel we are right there along side you, feeling your pain, frustrations, fears and anxieties. I think your inspirational and extemely talented. When all this is over and Hospital rooms are a distant memory, you should write a book for parents of children who are going through cancer treatment, you can share your stories and experience in the way that only you can. Keep on writing Jackie 🙂

  2. You are eloquent, and you know I am 100% praying for Ana, you and your family. The responses here say it so well, keep on writing, Jackie! Onward, wishing you a fabulous event tomorrow. All love from Bon, Storey’s Maki (grandma)

  3. I have tears in my eyes reading your post. As a mom I can not imagine what you are going through. Say what you want and feel. Can’t believe people would judge you in your circumstance. We do everything we can to protect our children and when we can’t we are powerless.
    That being said sometimes there is a higher reason why things happen. Maybe Ana is meant to be at Columbia. My dad had a transplant 12.5 years ago (I was pregnant with my youngest) at mt Sinai. He was high risk due to other health conditions and he is still here- yes lots of pills but all is well with the transplant.
    I will continue praying for your daughter.

  4. Sorry I wrote such a long comment, Jackie. (And how does one make paragraph breaks?!) I had saved up some words, through a number of posts. Next time, shorter, sweeter. I do keep thinking of the importance of sharing your experience, and I know you know it, given your work: Sometime in the deep part of the night a terrified mom or dad or grandma or friend will do a search and up will come a post of yours that will help them through that night.

  5. You make our community, and world, brighter and richer for being in it, with all of your love and wildness. Every post, I’m like, Bring it! xoxoxo

  6. Preach. That’s right. This is life and you are giving an amazing gift by sharing your feelings and Ana’s journey. Ugly things happen all. the. time. This isn’t a TV series easily figured out in an hour including commercials.And you’re right – your words are your power. Keep true to yourself and what you share. There are many of us who value your journey – the good, the bad, and the ugly.

  7. You have every right to rant. And in the end, when you all have pulled through and Ana is well and strong again, you will use your ranting and writing power to push the American people one step further in the direction of a health care system where the nightmare of having a severely sick child is not compounded by the nightmare of astronomic bills and having to deal with unsupportive insurance people. In the meantime, some of the people who read your blog may be inspired to do the same – and if it only is to give a little lecture to the next person who tells them that healthcare is accessible to anyone in the US and that any change in the system is an act of socialism.
    I don’t think you need to edit yourself – everyone who cares should know how frustrating this is.

  8. I have tears in my eyes after reading your post, and that is a good thing. It is when we can’t cry that we have to worry. This is really such a reflective post, and darn amazing in the middle of what you and Ana. Jim and Emily, and all of you are going through. Reading it, and especially about Ana crying every single time she has to take a shower, I know there are times and moments that are more painful than you can even capture in words here. But you try and you express very, very well, because you are a writer…and that is a gift.

    Be kind to yourself in the midst of this nightmare. I had to smile when you advised folks to not read the “ranting, anxiety-ridden” posts. I’ve been thinking, as I’ve been working this week or riding between places or whatever, how hideous that our health care situation puts you and Jim and your family in the situation of having to deal with this insurance mess as you do when your needs are to be with your daughter and focusing on her care. And that is numero uno! You want to be focused on what matters, which is Ana’s health and healing, not 18 phone calls through a hideous bureaucracy. We are a very poor country that we do this. It makes me feel so angry. Still, you are giving Ana exquisite care and support, and that is what she is going to get all the way through to her complete healing.

    It is very understandable that your feelings became this way — it’s beyond anxiety — because of course you must feel that every decision is life or death. At least that is how I would feel. I’m hoping and praying for a comfort level that comes from meeting Dr. Kato and the team at Columbia. I wish — for the first time — that I still had the West 47th Street apartment so that I could give it to you and Jim to use for as long as you would need while I stay up here.

    I also hope very much that you and Jim — and Ana as the patient — can feel some comfort and trust as time goes on and Ana begins this next, important phase. I know at times in my life when I have been afraid, I reminded myself that someone else is doing a certain job and that I cannot do everything. It’s like being able to trust a pilot to fly a jet when we are landing in horrible fog. I say the flying thing, because these surgeons — while this is very, very delicate, life-on-the-line surgery — have become excellent and careful at doing this due to their high level of skill and their immense experience. It has to be supremely hard to trust, emotionally and spiritually, this process, when it is your own child.

    It’s wonderful that tomorrow is the concert. I hope that you and Ana, Jim and Emily, Grandma Janne, Grandma Judy, Grandpa Aaron (and I feel that I am a Grandma Emeritus), and everyone can have an awesome time. It is so GREAT that Ana will be there, and I’m sure it will be wonderful to see her with her friends. This is something that some of us may have had difficulty picturing just a few weeks ago. Enjoy it to the max! Can’t wait. I still recall when we saw Ana sing “Set Fire to the Rain,” at the High Meadow variety show and when the last note ended, you and I were in that row, taking video/photos, and we just looked at each other with our jaws on the floor. I will never, ever forget that moment and that song performance!

    I am praying for a lot of strength to carry and help you all through this difficult, harrowing time. Sometimes life calls us to believe in the midst of our worst, gut-wrenching fear. There is more power inside of us than we know.

    .

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