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November 3, 2019

A pretty good morning, but a SUPER grumpy afternoon with a refusing-to-nap Julia. But we're now back to smiles and laughs. Since people keep "getting the news", I'll keep reminding for a few more days: Julia's cancer has started to grow again, quickly, and we have limited options. It is very noticeable in her right eye, compared to just a week ago. Now it is regularly not in line with the left (unless she's looking far to the right). They've also re-started their "neuro checks" every 4 hours, where they shine a flashlight in her eyes to see if there is anything concerning. They're mostly looking for lack of reaction to suggest pressure build-up. Luckily she has that interior shunt, so pressure should be handled. In fact, with her shunt, trach, and g-tube, she has all the attachments she needs to give treatment the most time possible to turn this cancer around (without them, pressure on her brain stem could cause serious issues a lot sooner). Also, for funsies, she's started to regularly draw on things with what she finds in her diaper... so that's super awesome. I don't know if it's her nutrition, or super-sealed hospital diapers, but it just doesn't smell (at least until the diaper is opened). Without just checking constantly, we often have no idea. Needless to say, she's been getting several baths a day. She's still doing her seizure study. Being her typical contrary self, she has not had a single 'zone-out' session since they put this stuff on her head. The nurse noted a 30 second period of limited responsiveness just 30 minutes before the study started yesterday, and then nothing since! She's had it on for more than 24 hours, and will keep it on at least until tomorrow when neurology makes a determination. She will be very relieved when it comes off... she hates it... and her arm needs to stay in this velcro cast to prevent her from pulling it off her head. In fact, she's wiggled out of the velcro cast several times, chucked it across the room, and stared yanking leads off. (...that's my girl =) ) Vitals are decent. Heart rate 140s/150s. BP 126/58. ET is off... I'm sure she ripped it out. The mucus production has picked way up. Snot fountain is back. Oh, and I ordered some new "good chemo" chapstick to try to get these chapped lips under control. . We're going to talk to her team tomorrow about moving forward with adding some more stuff to her treatment plan. I'm quickly growing less comfortable with "trying this out" for a few weeks before adjusting (just due to her eye). I mean, I agree with trying and adjusting, but I just want it to be a shorter time-table. She hasn't had a horrible reaction to this new oral chemo, as expected, so let's add to it. Our experimental options are an additional oral chemo and/or the new-blood-vessel-stopper. Until we hear officially how CHOP feels about our alternative medicine, I am going keep talk of that on the DL in these updates. Members of the CHOP staff read these (hi!), so I just need to find out where we stand before detailing specifics of what we'd like to do. But other than getting no-nap-grumpy, she has been nice and happy, giving out lots of cuddles and kisses. She even pointed across the room to her communication board (for the first time), and then let us know she wants to color by pointing to the crayons =) So she colored us a very pretty green picture before throwing the marker. ~~~~ Yesterday in my long FAQ I posted that all 4 kids have birthdays coming up within 3 weeks of each other (my two turn 2 and 3, Aunt Charlene's two turn 9 and 13). Several people asked what they might like (thank you!). I asked Charlene what I could recommend for Kinley and Joshua, and Charlene was pretty bummed to say they said they don't want anything =( They feel too guilty or selfish even thinking about celebrating their birthdays with everything going on with Julia. This was their same response last year. All they ever ask for is for Julia to get better. Their family moved out my way just over two years ago. From the day they got here, these two kids just adored their little cousin Julia. Before chemo was even mentioned, Kinley insisted on shaving her head too "so Julia wouldn't be embarrassed" (thankfully we talked her out of that!) They've been involved with every fundraiser and event, telling everyone they know to pray for their cousin. They were completely devastated when Julia was put on hospice last January. I remember watching Kinley brush Julia's hair and paint her nails, while hiding her own tears... like a loving mother. And even though Julia was barely responsive, Joshua kept trying to make her smile and laugh Up until last week, while we still thought things were going well, we expected to plan something special for these kids since last year was a total bust. Like, as moms, Charlene and I are maxed out on sadness with Julia's condition. On top of it, all our other kids are sad. I mean, we as adults don't understand why a 2 year old is allowed to get terminal cancer. How the hell is a 13 year old supposed to process this? And what can we say to make her feel better? This isn't like her first breakup where we can tell her everything will be OK. Anyway. Gabriel turns 2 on November 15th (less than 2 weeks!) Luckily he's too young to know what the heck is going on. Somehow he's completely obsessed with Paw Patrol even though he never watches it... we have no idea how that happened. He also seems to really like planes, buses, and tractors. Kinley turns 13 on November 22, and as a typical teenage girl, she's recently starting to enjoy clothes and makeup (this is also her first year back to public school, so of course fashion is SUPER important!) Joshua turns 9 on December 9th, and he likes... I guess typical 9 year old boy stuff. Nerf guns. His trampoline (that I understand some bigger kids broke). Minecraft, Roblox, video games. He wants to grow up to be a YouTube video game streamer (he's going places!) So if anyone has some ideas of what we could do, let me know... Charlene and I just kind of stared at each other blankly trying to figure something out. Our brains are fried. And they grew up in warmer places (Georgia, Texas, Vegas) so parties usually included outside stuff. Not so much in PA in November / December. So, we're open for suggestions for a 13 year old girl and 9 year old boy!. I know we're all here for Julia, so thank you for thinking of her cousins too. They are very sweet kids. <3 ~~~~ Pic tonight: Super happy Julia getting her feet tickled! And happy Julia video in comments =)

. . . ********** ~~ 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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1 коментар

Christina Claudio
Christina Claudio
04 лист. 2019 р.

For your nephew's birthday, some cities have indoor trampoline places that welcome children. Prayers for Julia❤️

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