June 23, 2019

Lots of sleeping.  Reed's going to ask the nurse about the excessive tiredness.  It's normal for during and directly after chemo, but not generally this far out.  Her levels are back to normal, and typically she'd be starting her new round tomorrow (I believe they're holding off a few days while they decide next course of action).  But I would expect her to be pretty awake.  Just LOTS of sleeping these last few days.  It could be because Reed's back down there and she's too interested in staying up with him.  She is pretty much up/down all night - no real long stretch of sleep.  So that could be all it is... but anything unusual just stands out.

She did another 6 hour HME breathing sprint which is fantastic!  She slept through most of it, which is really good - that means she can breathe on her own while sleeping/tired.  While awake, she did fiddle enough with her HME attachment that she disconnect it and chucked it across the room.  That was funny.  So the next one got clamped on nice and good.  Oh, and since she's not "accessed" right now (that's the port in her chest - when she's on active chemo / recovery, she has a line in there for medicines; they "de-access" her, or remove the line, to prevent infection when it won't be needed for a stretch of time).  Anyway, since she's not accessed, and is doing SO WELL on her HME, the plan is to get her into the bath tub this week!  She is likely going to HATE it, but what a huge step!!  She used to looove her baths, but she grumps about pretty much everything now, so we expect it to go poorly.  But either way, it's going to be so nice to work her back up to a nice soothing, relaxing, therapeutic warm bath rather than these bed baths where she's upset and chilly =( 

So mostly just sleeping.  But during her awake times, she's been one happy kissy baby!

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Given Julia's "no change" MRI, many people asked how they determine if the cancer is (or is not) still growing, if the tumor remains present. Two options are a PET scan and a biopsy:

PET scan: Uses special dye containing radioactive tracers which are absorbed by certain organs and tissues. These tracers collect in areas of higher chemical/metabolic activity and show metabolic changes occurring at the cellular level. Cancer cells have a higher metabolic rate than noncancerous cells, so they show up bright when detected by the PET scanner. (CT scans and MRIs can't reveal problems at the cellular level.) This is a decent option, but solid tumors (what Julia has) can sometimes not show up on a PET scan, so it's not 100%. Risks with this test are exposure to radiation, but the amount is minimal.

Biopsy: This is how doctors officially make a diagnosis about cancer. It involves using a needle-like-thing to remove a small amount of tissue to examine under a microscope. A pathologist does all kinds of fancy tests and looks at things like: size and shape of cells and their nucleus, arrangement of cells, type of cancer, grade of cancer, etc. A biopsy is the best way to determine what is going on, but the risk is infection. And given her history of brain infection/stroke, I can't imagine they would want to do this until they had a compelling reason (and likely once her immune system builds back up).

She would be in partial remission if the tumor showed no growth one month after treatment had stopped. Partial remission means the cancer is still there, but it is currently stable, and active treatment isn't needed. Tests would continue to be done forever to confirm the cancer hasn't started to grow again. Sometimes partial remission lasts a few months or years, or it can last forever. (Complete remission means all tests show all signs that the cancer is completely gone - or "No evidence of disease (NED)". I don't believe they consider cancer 'cured' at any point anymore? My understanding is NED is the best you can get these days. Someone please correct me if that's wrong.)

No one has used the word 'remission' in any context yet.

My assumption is they will advise another 3 rounds of the same chemo, and then do another MRI to see what's going on. If at that time it has remained the same, they might start looking into whether or not this is now considered a stable cancer, suggesting she could stop treatment for a time (but again - totally getting ahead of myself here!) On the other hand, if the cancer continues to shrink, they will likely push forward with additional treatment to try to knock it out completely. We should know more next week after the teams all have their meeting.

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Today was supposed to be my cleaning/laundry day, but instead we took little guy to the Celtic Fling at the Renaissance Faire so he could show off his kilt and general Irishness.  He made lots of friends and hammed it up.  Despite a re-skinned knee and a trip to the medic tent (where you would have thought they were amputating his leg), we had to take turns corralling him as he booked it all around the faire grounds.  This kid has too much energy.  The actual Renaissance Faire is Aug-Oct, and so far, Julia has made it to 3 - one in my belly, then at 11 months, and then at almost 2.  In fact, I think it was the last trip we took before we went to the hospital.  I wonder if she'll be home and healthy enough to make it this year (I'll add a pic from last year <3)   Current video of her being a goofball in the comments <3 

YouTube: https://youtu.be/Pvsjn4hb1jM . .

. ******** ~~ 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

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