There is so much to update on but emotionally I can not do it right now. The highlights are Connor is traumatized and it was evidenced today at clinic so we are considering waiting another week to do round two, but I am in the process of deciding I do not want to do that. This is because through lots of consultation Between MSK and NYU Connor’s tumor pathology has changed, while parts of it look like a medullo still, it is an embryonal rhabdomyosarcoma of the CNS. If you google this you will see all sorts of positive things, like 80 percent survival, that young children do better than old, etc., none of this applies to a primary presentation in the brain. There is no protocall, statistics seem too poor to look at and I just keep telling myself these kids weren’t treated in NYC, they did not have the best minds on this, I hope I am right. Even though Connor’s medullo was grouped into the worst category and even then was a rare subtype of that category that most hospitals don’t even differentiate, I felt good about the protocall, that it was established and proven to work, I also felt good that with the medullo once we beat it, we beat it, all of that is off the table now. Again I have so many other updates to provide, but right now just need to process this latest curveball thrown at us.

One highlight today is that Connor started eating again, he had waffles and cereal for breakfast, a Godiva Easter bunny (he has good taste) and graham crackers for lunch since we were at the clinic, 3 earths best smoothies for dinner which contained lots of hidden fruits and veggies and about 15 ounces of whole milk. Don’t judge the diet at this point we will just give him whatever he will tolerate, calories are calories!




3 thoughts on “Curveball

  1. I don’t judge ANY food choices of parents of preemies, and certainly not when they’re not feeling well. It would be pouches, milkshakes & cookies for us.
    I am here if you need to talk. What Connor is going through is tramautizing to adults, but he is still a kid which makes him so much more resilient! More than you know. I can only imagine what that appointment could have looked like and imagine feeling that your heart & soul was being crushed watching him go through it. This will likely be the longest year of your life, but will be worth it. I’m here if you need to talk. Keep talking to Casey, your family & best friends to find that balance that feels acceptable to you. Huge hugs mom.
    I have a Ghirardelli connection (Ali from Bucknell) so if Connor is loving chocolate we will get him chocolate!!

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