More and less worried

March 24, 2010 at 8:25 pm (Kids)

Thank you all for your supportive comments an emails. It really meant a lot and I feel bad for leaving you hanging!
After reading all 270 abstracts (and all available articles–maybe 20) on pubmed, I started to understand more about IM. Honestly? I don’t think we have too much to worry about. The bottom line is that there were like 3 cases total that included children who presented with multiple tumors over the age of 2. So of 300 documented cases, there were about 2. IM is hard to diagnose, and therefore underreported, but I like those odds. And even in these late onset multiple cases, they were “easy” to treat with no visceral involvement. This is all very good news.

I shared my lit review and commentary with dr superstar. She loved it and asked me to send the electronic file so she can have her research asst get reprints for us. She’s also going to send them to the oncologist so that we all feel well informed going forward.

The toe is fabulously well now so the plan is to see superstar in about 3 months. In the meantime, we’ll see an oncologist on April 8th to discuss whether or not we need to go on a tiny tumor hunt (maybe ct scans of abdomen and/or head).

Until then, we’re just operating like everything is completely fine. And why the hell not.


  1. EmmaNadine said,

    Learning to live your life with as little worry as possible when you have a diagnosis like this is an art. I’ll keep all of your family in my prayers, and I’m so glad to hear that the signs are encouraging.

  2. What Now? said,

    That news does sound reassuring; what a relief for you, I’m sure! Did they wind up having to remove much of the big toe, and so will there be some issues of relearning balance once the boot is off?

  3. Janice said,

    That is a very good case in the literature and congratulations on your awesome research-fu that impressed even the doctors, it seems!

  4. sheepish said,

    I think you exhaustive lit review is awesome. It’s good to have skills.

    I hope things keep getting better.

  5. Rev Dr Mom said,

    Hoping and praying that things continue to look up.

  6. jo(e) said,

    That sounds reassuring.

  7. liz said,

    Sending hugs and many many good wishes.

  8. liz said,

    Thinking of you all and hoping everything is okay.

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