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November 27, 2018


I feel like every time I talk to a doctor and get more information, another part of my brain permanently shuts off. I've been telling a few friends that I've been doing so much research on AT/RT and how advanced it is in some kids when it's first found, and what it might mean for Julia's survival chances since hers was localized, hadn't metastasized, was operable, etc. I was really trying to be encouraged comparing our situation to others...

But none of that matters, because it's not AT/RT.

CHOP only sees 5 cases of AT/RT a year because it's so rare... but the aggressive cancer Julia *actually* has, has only been seen FOUR TIMES in our oncologist's several-decades long career.

What the fuck.

Really. What the hell else am I supposed to say to that news?

I wrote the name down somewhere, and I don't even want to remind myself what it's called. I couldn't bring myself to ask our doctor how many of those 4 children are still alive, because I was too afraid the answer would be 0. I don't think I want to do any research on it at this point. I had found a great support group for AT/RT... but this cancer is so rare... I'd probably be the founder of a support group and I'm not in the position to support anyone!

What it means as far as treatment. There still IS treatment. Our oncologist said survival is "along the lines" of AT/RT. Which is not good, but we already knew that. At least the doctor didn't tell us we were headed straight to hospice or anything like that. We are going to treat it very aggressively. The chemo protocol did change from AT/RT. AT/RT is a very intense chemo treatment using 5 drugs. This treatment is not quite as intense, and uses only 2. These are the two best drugs they know to use (in their *very* limited experience) as they've seen that it responds like some other more common brain cancers. They expect to start chemo in roughly 2 weeks, as soon as neurology confirms she's healed "enough" from her surgeries. Unfortunately intense radiation therapy is definitely part of this treatment. We had been hoping to get out of that with AT/RT. The oncologist said there's no hope of that with this one. The plan is to start her on the most effective chemo drug, and see how the left over cancer responds. If it's responding, they will keep her on it longer to do as much as work as possible. They will then likely double up and go at it with both chemo drugs for another round and compare results. At around the 3 month mark, 6 at the absolute latest, she will start a very intense radiation treatment. SIX WEEKS, 5 days a week. Holy shit that's a lot of radiation. And it's near her brain stem, which is the scary part. She said it's NOT whole brain radiation, which is generally worst-case scenario; it will be a combination of proton/photon depending on how well she responds to chemo. Julia will be put under anesthesia every day to tolerate it. During that time, they will back off the chemo to either none or a low dose. After the 6 week radiation, she will go back onto chemo for the remainder of the year.

The oncologist stressed there IS still hope for her. So I guess we're going to cling to that and move forward.

Why did they change her diagnosis? The doctor explained this is very rare, and... well... I'll be honest, there were a whole lot of microbiology / molecular / something-something words that just didn't stay in my brain. There was some sort of mutation that is *already* rare, but that strongly points to AT/RT, and AT/RT is many times MORE common than what she actually has, so they were leaning toward that. And even the physical tumor has been bizarre. Apparently what looked like hemorrhaging on the MRI surprised the neurosurgeon because it turned out to be tissue. So nothing about this is common. But now that I'm remembering back, even at our initial meeting she said they were still testing tissue / sending it out to other hospitals to be 100% sure. She said they are now 100% sure this is what it is.

So that's that. I'm not sure what to do with all that information right now... sort of in a daze. I guess in the end, her survival statistics are not much different... it's just different treatment.

She said with the drugs she'll be on, 50% of the children lose their hair, many deal with nausea. The biggest hurdle will be nutrition. These drugs are known, more than the other chemo drugs, to totally wipe out a kids appetite. And since she's a toddler and we can't just reason with her to "eat this because it's good for you", calorie intake will most likely be a problem. This doctor is BIG on nutrition (which is great). She is 100% on board with us trying to get all the healthy stuff in her like turmeric and green tea. She said smoothies are generally a hit. But in general, "all calories are good calories" during a chemo plan like this. We'll be working very closely with a nutritionist, and high-calorie drinks will definitely be on the menu. Anything to keep her intake up. I can say from recent personal experience with dad... once the calories stops, your body just falls apart. Cannabis is also something we will talk about. It is in several clinical trials for pediatric brain tumors. It is known to definitely help with appetite and nausea, so we'll discuss the pros/cons when we start chemo.

OK... I think that's most of the news we got.

We did visit with her. Reed and I wore masks and gloves. The room was kept mostly dark. They had an instrumental Moana soundtrack playing, and her bed was lined with all the stuffed animals she's gotten. Her BFF Tiger was under the blanket snuggled right up with her, and she was tucked in with a bear. The nurse said they had just done some sort of "airway treatment" (or something) with her, which tests her ability to breathe on her own. She hated it. So when we got there, they had just upped her sedation/anti-anxiety and she was resting comfortably.

...Until daddy said her name. Heart rate shot up to like, 199 and her eyes flew open. I was on FaceTime with my sister-in-law and she watched me run out of the room in a panic. The nurses came in and all helped calm her down. They believe she was just so excited to see Reed. They said her being awake (even with the breathing tube) was actually a good thing because it was really making her lungs practice. Her self-breaths skyrocketed when she was awake with Reed. He held her hand and soothed her; she's so weak (and drugged up) she could barely move, but she was grabbing his hand which was really great. She started to cry when he put her hand down =( That was heartbreaking. But she quickly went to sleep and the nurse assured us she won't remember a thing... she's already forgotten we were even there.

They say she's doing really good with her breathing, and she will be woken up fully either tomorrow or Thursday. Our hope is that her pain levels are under control and she does... OK... with anxiety and her new outfit.

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