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January 1, 2019

Reed and I had a conference call today with the top doctor for pediatric chordoma. He's located at Mass General in Boston. It was a short and direct phone call. This is the number one doctor ~in the world~ for this cancer... he has treated a whopping 8 children under 3. Wow. This is how rare of a cancer we're fighting. We did not ask the current living status of those 8 patients. He has treated 160 children under the age of 16 for this particular cancer.

I hadn't given him Julia's records, but I gave as much info as I could; he asked a few questions, and was quickly able to determine the sub-type of chordoma she has (apparently because it was misdiagnosed as ATRT first). .

He gave us some information we didn't like, and some that is so-so. First, her particular chordoma is the most aggressive type (of course), and "tends to metastasize" (of course). So, no breaks for Julia there. He confirmed radiation will be required, and that we are next to the best proton(photon? his German accent was heavy) radiation center east of the Mississippi - at UPenn. And he works closely with the pediatric radiologist there.

He said he would review the chemo plan, and said, "The hope is Julia will respond to chemo, the tumor will shrink, will eventually disappear completely, and there will be no metastases". We are READING INTO THAT and hoping that means there has been success in his treatments before, and that she is not medically a lost cause. Part of me itched to ask him directly, but I just couldn't. I was too afraid of what he would say, and I'm already struggling to keep hope strong every day. But, again, having just gone through this with dad, I know what doctors sound like when it's terminal. I'm not getting that vibe yet. He said we will know in "the next few months" how things are looking.

He said he'd like that halo off ASAP so they can get the clearest image possible. Apparently with it on she is limited to a certain MRI magnet / CT scan position. Along side that statement, our own medical team said they would likely remove the halo tomorrow, do another CT scan, and then with that better image, confirm if the halo can stay off or decide to put it back on. But both sides seem to agree the halo needs to be off to get a clear image.

So this doctor is not currently working with our team, but he seemed eager to be involved in her case, and specifically said he'd like to consult with everyone (oncologist, radiologist, neurosurgeon, ENT team). We will be giving every doctor on our side his information and request they work closely with him. But he said there is currently no reason to advise we take Julia up there to Boston. Assuming they agree on a chemo plan, she will get equal care at CHOP.

I just hate how rare this is. I hate how the person with the most experience in the whole wide world, can count on his hands the number of attempts he's had at beating this.

Just really heavy stuff today.

Oh, and the CT scan tomorrow will also determine if they are going to do the internal shunt or not. It's apparently slightly different than I first described it. It is completely internal, and is some sort of tube that runs from the brain, all the way down under the skin (somehow), and just ends in her abdominal cavity. This keeps the pressure moderated in the brain, and the fluid just gets absorbed in her body like normal. I don't have details on what that procedure looks like. I can't imagine it's easy to snake a tube all the way down the inside of someone's body?? But I guess I don't know. I don't know if that means several incisions or what. I hope not. And they hope not. They want her to be done with the surgeries and just save her strength to fight the cancer. We'll hopefully have word on that tomorrow.

As far as Julia - she's had no vomiting today, and no snot-gags! Her breathing has sounded really great, so it seems she's finally getting those lungs cleared. Once the halo is off (whether this week or whenever), they will fully wake her up and really start on the PT to get her strength up. As soon as they're happy with her breathing, the trach will come out. I really really hope that happens - she's going to be miserable enough going through chemo. I want all the... tubes, bolts, and wires out of her body.

Julia continues to do a GREAT job with her family roll call, and she'll do the numbers 1-5 on her right hand when Reed asks for them. She refuses to show the nurses. She just glares at them if Reed asks while they're there. My little attitude baby =)

And she's really trying to open her right eye. It's just barely a squint... but she's trying. And PT was like, 5 minutes long today. She slept the whole time. She's just exhausted.

Sorry the update jumped around. Usually I spend more time organizing my thoughts, but it's 1:30am and I wanted to get it up. We expect more news tomorrow.

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