July 3, 2019
Fussy part of the chemo cycle has officially arrived. She was happy for about an hour this morning - enough for a picture! - and then... grumps. She hasn't napped all day and has gotten fussier and fussier. She's doing fine vital wise - heart rate is elevated as it usually is right after chemo, and she did throw up all over herself and require a bonus string change and bath. She's pretty much just been throwing and banging her toys around all day. She isn't angry, and they don't believe she's in pain... just grumpy. They've all pretty much been trying to convince her to sleep all day, so they turned off lights, and no TV, limited visitors, no high chair, no therapies... nothing worked. So they're hoping her quick evening wipe down and some snuggles on daddy will do the trick.
Oh, and oncology said, "her weight is trending upward faster than we expected" (she's getting fat), so tubbers is going on a diet. They'll keep the amount of feed the same, but they'll just replace some with water to reduce the calorie content. In the meanwhile, she just gets lots of kisses on those chubby cheeks <3
After seeing the cute pacifier-battle video with Julia and Riley last night, several people have asked if she can have her paci again. She can, she just doesn't want it. Her and her pacifier animals were attached at the hip (... mouth?) before this all happened. Especially Tiger. And as soon as she woke up from Surgery, tiger was right back where he belonged. But somewhere around the stroke / coma she lost interest and she never regained it. Theories are: it hurts to suck due to the surgery location (back of throat) / her mouth always tastes bad due to the mouth cleaning swab / she can't swallow very well so sucking on something and creating more mucus isn't fun / for months everything that has gone to her mouth is bad - medicine, alternative treatment, suction, breathing tub, swab... she just hates things near her mouth. This is why Speech Therapy is so excited over her play tea parties! They want to encourage "things near mouth = good" for when they try foods in the future <3 But yes, in general, taking a pacifier WOULD be awesome for her swallowing but she's just not interested.
[Unrelated PSA: Facebook has been experiencing outages since last night, especially on the East Coast and in Europe, so if you've been having issues posting or loading content, that's probably why.] ~~~
Please keep the family and loved ones of Hoilly Harris in your heart and prayers. She just passed away at age 37 to a rare blood disorder. I understand she leaves behind a husband fighting stage 4 pancreatic cancer, 3 daughters, and a nephew she cared for. I did not know her personally, but I came to recognize her name, thoughtful comments, and #JuliasArmy tags on every one of Julia's posts. I just skimmed through her Facebook page to find accurate information, and my heart breaks seeing how much she supported Julia. Her last profile picture is even of Julia's smiling face. She shared every one of Julia's posts with a long message, constantly reminding people to donate to my GoFundMe. The comments on her page refer to her as a good friend, a best friend, a support system, and an angel on earth... clearly Hoilly had a heart of gold, able to support others while fighting her own battles. I had no idea she was sick... you'd never know by how she brightened the lives of those around her. So I'm returning the favor (that I didn't even know she continued to do for me), and am sharing her family's GFM. It looks like they're looking for a very modest amount to cover funeral expenses. I'm left wondering how her husband is to care for 4 children while fighting cancer himself =( Please keep her loved ones in your thoughts as they grieve the loss of this amazing person. I barely knew her but I'm so sad knowing her presence will no longer be felt on Julia's page. If you can help out this family in their time of great need, here is the link: https://bit.ly/2xt4ypE
Now that I'm all upset I'll try to switch gears to close out the post: Since I didn't have much today to share picture/video wise, I included the last two Julys as well. Video in comments - you can see my dad and hear Julia's babble <3
YouTube: https://youtu.be/lliqYdwvG3A . .
. ******** ~~ Julia Adams ~~ ******** ********** Official Links *********** (These are here because of scammers) ********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
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