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October 27, 2019

Another extremely mixed post. Julia and Gabriel saw each other in person for the first time in more than 100 days. Given her intense chemo and the start of school germs, we decided to just keep them apart for her safety. They had a great time (got in a few brother-sister tiffs) and I got tons of sweet pictures and videos. But... Julia's right eye just isn't OK, and I'm having a really hard time thinking this is anything other than the worst possible news. I was under the impression the weirdness was a one-time thing during the week, and they chalked it up to being unusually tired or maybe getting medicine in it. But apparently it's stayed weird. It's not horribly strange, but it's definitely not correct. She seems to be unable to look down with it, and it is not always in sync with the left. Sometimes it is, but it just kind of drifts off every few minutes. I find this extremely concerning. Her right eye has pretty much been our visual queue as to what the tumor is doing. Shortly before her surgery, her right eye went cross-eyed. It got better after the initial tumor removal. In January, as the tumor rapidly grew, her right eye quickly stopped responding - first the eyeball stopped being in sync with the left, then it stopped moving all together, then the pupil stopped reacting to light. The left eye did the same for a short period of time during her coma. As the tumor shrunk, her left eye quickly regained all normal behavior. It took several months of the spring for her right eye to start reacting, but eventually it did. The pupil never responded correctly and the eyelid doesn't close correctly... but the eyeball itself has been able to move around as expected for many months - confirmed by ophthalmology. On top of her eye being weird and lagged these last few days, she's been excessively tired. Both unusual. Both previous signs of tumor growth. And we know from experience that this tumor grows extremely fast. Her vitals are great. Reed and the nurse both say she's been acting normally, but I don't agree. She still smiles and claps and laughs, and maybe she's normal 90% of the time, but not all the time. She keeps like, zoning out into zombie mode and has to snap back to reality. Other than that, neurologically there are no concerns (she responds as expected / has the same level of physical ability). There also seemed to be some confusion among the team. They said her eye has "always done this when she gets tired", but that's definitely not the case. Or if it has, it was only when neither Reed nor I were present... which seems unlikely. I agree her pupil has always not responded, and her eyelid has always been slow... but her eyes absolutely have been in sync for months. (You guys would have heard about it if I had ANY concerns about her eye!) Apparently Reed asked about it yesterday and was told they would just watch it and see because a "CT scan would not change the course of action". (This essentially means... there is nothing else to be done should the tumor be active again, so "what does it matter"). Obviously I'm not OK with that. We would very much change what we're doing should the cancer be growing. Maybe not from an oncology perspective, but we wouldn't be waking her up at 8am. We wouldn't be limiting her iPad time. We wouldn't be forcing 3 sessions of PT in the hopes of acute rehab. We would look into other alternative options. So I said I need to know what's going on in her head. I guess they made some calls to oncology, and are going to bring it up at rounds tomorrow morning. They may also stop her feeds at midnight tonight in preparation for possible imaging tomorrow morning. . So... unfortunately this amazing visit was really tainted. I'm hoping this turns out to be nothing and I can look back on these pictures and videos and appreciate them for how sweet and precious they are. But seriously all I want to do right now is puke. Why is her eye weird, and why is she all of a sudden 'unusually fatigued'? Both concerning symptoms at a concerning time - a few weeks after she would have gotten more chemo. Chemo is done, so the cancer is no longer being poisoned. If they didn't get it all, then now's the time something might happen... The timing coincidence is too real. And the reality is, kids go through much harder treatments than Julia has, for much longer than Julia has, and still die to cancer. Some beat it, then relapse, then beat it, then relapse, then die. Some beat their primary cancer just to die a few years later to a secondary cancer. Some beat cancer and then die to a simple virus the week they're supposed to be discharged. It's not like Julia's paid some ultimate price and she's guaranteed to beat this. The first post-treatment MRI being bad is a very real possibility. It happens. The desperate families getting this news reach out to me weekly hoping for Julia's 'miracle cure'. It's been suggested that maybe she's really tired. And... yeah, possibly. But for 4 days now? And I know she's been doing more physically, but she's been getting intense chemo for 10 months. She's been sedated dozens of times. She's been hit with triple-doses of sleepy-meds.... this girl has been tired before. It's also been suggested that maybe the weather pressure change is affecting her shunt. Another 'maybe' possibility, but the weather has changed before. And they've been extra careful with her scopolamine patch - no medicine has touched her eye. So, all these other possibilities just seem far less likely than 'cancer is growing again now that chemo is done'. ~~~~ Besides that, medically she's been fine. Her vitals are great. She did a 2-hour cuff down trial this morning and did perfectly. They started her on her 2nd trial of the day as I was leaving. Major progress there. She also surprised the night nurse by sitting up in bed when she came in - very unexpected! And while sitting with Gabriel, she would right herself is she started to tip over. Right now she's still being supervised 24/7, but as soon as that is lifted, they might need to look into a crib again for safety. ~~~~ I guess that's it. I seriously just want to throw up. My anxiety is through the roof and there's no way I can calm down until I get results back, so hopefully they get her down for scans tomorrow morning and give us some news as soon as they find out. Sweet video of Gabriel's visit in comments. If this all turns out to be nothing, I have a ton more to share.

********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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