October 1, 2019
Hello October. My.... I hesitate to say... favorite month of the year. Hopefully nobody in my immediate family enters hospice or the hospital for a year-long stay this time. We got results back on her MRI, thankfully there has been absolutely no change as far as the tumor. That means it's still present (no miraculous vanishing), but it hasn't budged in 6 months. This might suggest it's dead. There are other tests that will be considered now she's had her "final" chemo MRI. But this was what people were expecting, and everyone seems very happy. It's been asked many times in the comments: If this tumor is currently inactive (I say currently, because it could start up again pretty much whenever), I do not believe they would attempt to remove it. It is still inside her spinal column, and surgery there is just way too dangerous. If it stayed dead forever, she would likely have no real issues from it and could live a long normal life. The problem would be if it wakes up again. We haven't really talked about her long-term plan, but she will definitely get regular MRIs... forever. Other than that, they noted some scarring on the MRI. I'm not sure exactly where. I assume either around the tumor location or the stroke area. We took the call on the phone because we were out at a transitional care home tour. (I'll talk more about that tomorrow - already have enough for tonight's update). And they noted that there is "thinning of the bone on her thoracic spine". I don't have details yet, other than that can either be due to treatment or from just inactivity / laying in bed. They believe it will get better with time. But absolutely no growth with the tumor. No concerning spots anywhere else. That's exactly what we were hoping to see at this point! ~~~~ Medically, she's had a great day. Her counts are all almost recovered again. Despite the weird one day serious-but-not-serious blood infection, she has continued to recover remarkably well after every round of chemo. So she's not completely helpless again, immune system wise. And if things go well... no drop of toxic chemo will ever touch this little body again <3 <3 There was a schedule opening to get her g-tube replaced, so she got that done today. It's a 10 minute procedure and doesn't require anesthesia. They do some local numbing, and Child Life was down there with her holding her iPad... so Julia had everything she needed (Peppa). And again, we weren't there for it, but I hear she had a GREAT therapy session with OT and speech. They REALLY pushed her. This is all in an effort to show what she's capable of, to hopefully be eligible for acute rehab in a few weeks. Reed said there is a new chair in her room - not the super fancy Kid Kart we're waiting on, but something definitely more supportive than a stroller, and fits much better than her high chair. So I guess she was in that for a good bit of time, with her iPad to play with, and I hear she did really well. The plan is to get her into that every day. WHICH IS AMAZING. I have been patiently (not so much) waiting for her to get out of bed EVERY DAY. But I do understand the limitations from chemo. But CHEMO IS DONE. So out of bed it is! I guess that session really pooped her out, so she slept the entire afternoon into evening. She woke up briefly for her string change and bath, and then went right back out during some cuddles <3 ~~~~ I want to thank everyone who started following Jackson's story that I shared yesterday. This is the little boy whose mom I got in contact with after a Julia follower sent me her story. Their son was put on hospice with no hope. We talked to her, encouraged her to get a feeding tube to keep his body healthy while the alternatives have a chance to work, and he has done a complete 180 in just 3 weeks. No MRIs or anything, but she says he's a completely different little boy <3 The collage she recently shared is AMAZING. But I linked her story last night and so many of you started following. THANK YOU. It means so much to me, as Julia's mom, to have so many people caring about Julia. You're all sad when she has a bad day, and anxious when we're wait for results, and happy when she hits a new milestone. Julia isn't fighting this alone, as so many kids do. This means so much. So you giving this love and support to another family is really great. The number of people following her son's progress quintupled after last night, and she felt all that love! (And omgosh, scrolling through comments and see everyone saying they were there from "Julia's army" was SO amazing <3 <3) Anyway, seriously, you just being part of a child's story... whether you comment often, or donate, or have suggestions, or just check in once in a while... provides so much emotional support to our families. <3 Jackson's updates: www.facebook.com/groups/2042868732675079 ~~~~ And totally random request. If you're local to me (West Chester / Downingtown PA area), I am looking for an antique / castle-y looking mirror for a cool photo I want to do for Julia before Halloween. I do fantasy photo retouching, and Alicia and I have a GREAT idea! But I need a fancy mirror. Larger than a hand mirror, but not so large it needs to hang on the wall. Gold/bronze/wood trim rather than silver. If anyone has something like this that I could borrow for a really cool picture at CHOP, please let me know <3 ~~~~ Video in comments of refusing-to-sleep-Julia.
YouTube: https://youtu.be/6b0fyIFaYBk .
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********** ~~ Julia Adams ~~ *********** ************* Official Links ************* *************************************
Julia's official pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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
