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November 7, 2018

Updated: Dec 23, 2018

I had to look at the calendar for the day of the week... everything is running together. We just got news today that we will NOT be getting conclusive results this Friday. Her tissue sample has been sent to the neighboring hospitals and so many experts are looking at it trying to figure out what it is. We are still being told they don't know. I find it hard to believe that they aren't at least leaning toward something at this point, even if it's not 100%.


She is going in for another MRI tomorrow morning to see if anything has changed, and if so, how much. So I pretty much want to vomit right now thinking we'll be getting those results. In my mind I see the MRI as a grey image with a big splotch of red skull and cross bones taking up half of her brain. This will be the second image, and it's been a whole week since the first. So I HOPE it's good news. It's too optimistic to think whatever it is has shrunk, but I at least hope it hasn't gotten bigger. We're also hoping to see that the brain has stopped bleeding. It was just a small bleed, and they said it looked like old blood. So we're hoping to at least see stability on that front. I hope they will at least tell us THOSE results tomorrow afternoon.

The social worker arranged a meeting with her and the medical team (and us) this Friday at noon. It's more of a courtesy because we've gone over a week with no answers. They're going to tell us the few things they've ruled out so far, what it might be, what that means, and what we could do as far as starting treatment. Because regardless of what it is - something needs to be done about it, it's pushing on her brain stem. I've talked to many other brain tumor patients/parents (both benign and malignant), and in many cases it appears the mass is immediately removed. Because she didn't go right into surgery, it makes me wonder if the location presents extra dangers. Like my dads first tumor they explained it was easily accessible and it was a rather simple surgery to just quickly pull it out. I understand Julia's appears to be "wrapped" (or possible "in") her c1 vertebra, pressing very close to spine/brain stem, so I can only assume that's not an easy removal. Perhaps they are really hoping to be able to treat it non-surgically, such as with antibiotics or chemo.

At this point I've accepted that this is cancer, and I just hope it's a treatable cancer and not one of the ones with like, a 20% survival rate. (Trust me I've obsessively googled everything because that's what I do). I am trying to have faith, mostly in God, that she is going to be OK. We proved that with all the medicine and science alone, we can't just always power through cancer - dad did everything available and he didn't beat it. I'm endlessly praying that this isn't a repeat.

I didn't get to see her today. We got word from hospice that my dad is near the end (hours, maybe a day), so we were with him. He's comfortable and in no pain. I expect to get final word on him within 24 hours.



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Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!