Wednesday, January 13, 2010

1.13.09

Brian is with Evy getting more chemo today at the Clinic. He ran into our Oncologist's boss, the cancer bigwig at Children's National Hospital. (We are treated by Children's but get our "stuff" done at Inova Fairfax simply for convenience of location. The Children's Oncology group travels there.) He is a big name in pediatric neurology and although we have not met him, he has been very involved in reviewing Evy's MRIs and protocol and helping our doctor, who is also quite esteemed, make decisions. It looks like our NED has been stripped from us. He told Brian that the dye for the last MRI had been absorbed into something around the rim of where Evy's tumor was and he does not know what it is. It may be regrowth. We will find out more when she gets her MRI in preparation for proton beam radiation in Boston. To say that I am livid that a brief and chance encounter with this doctor brought us this news is an understatement; to say that my heart is not hurting would be a lie.
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5 comments:

  1. Ok. Breathe and hang in there. I've got that card, too - we were told NED once and next day the radiologist found a spot that the oncologist had missed. Not a fun feeling at all. As you know, in our case the spot ended up being "radiation-related changes". And maybe Evy's "area" is related to the tumor resection? And if not, well, it's very good that you are already on the path to radiation; I am a strong believer that radiation and ATRT are bitter enemies.

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  2. Mette always knows what to say. xoxoxoxoxo

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  3. {{{hug}}} Well, at least you got that info, as frustrating as it is that you weren't *already* given it!!! Hang in there, mama!

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  4. HHMMGGRRrrr. Maybe the oncologist hadn't shared this because they were trying to figure out what it was first. That is jolting to get news from an inadvertant meeting. But it is a sucky and brutal reminder of why the docs are fighting this thing so hard. Love Mette saying radiation and ATRT are bitter enemies. Come on protons!

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  5. Gaaah for crappy bedside manner. Hang in there, Jill. I'm with Genevieve- Bring on the protons!

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