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March 1, 2020

I can't believe it's March already.  (She's the same - I'll add that in before I ramble a bit, because I know everyone skims for it.)

Two years ago in March, I sat down with my dad to review all his billable time.  He and I owned and IT business - he did the IT work, I did everything else.  I knew he had worked just as much as he always had, ~50 hours a week.  But he had a whopping 4.5 hours recorded.  I had been hounding him the previous six months for forgetting to record his time - because that's how we billed our clients.  Having missing notes made things really difficult, then we had to spend hours reconstructing his days from weeks ago.  

When I saw 4.5 hours recorded I just looked at him like... what the hell, dad? 

And he looked so confused.  He knew he worked, but he couldn't figure out why he recorded only half a day total out of entire month.  

Since my dad had been diagnosed with melanoma three years before, my relationship with him changed.  I never got mad at him anymore, because in the moment, I always told myself "one day he won't be here".  And the hours I used to hate sitting next to him in the office putting billing together, became time I really liked, because one day it would end.

So I didn't get frustrated with him.  I just chalked it up to him getting older, and we ordered food, and did our best to recreate his time.

A month later, literally two weeks after getting the "all clear - still no cancer" blood screening... we were told he had a tumor in his brain.  Where it was pressing was affecting his memory, and all of a sudden all his forgetfulness made a lot more sense.

So we found out he was not, in fact, cancer-free, but instead the melanoma had metastasized... and that's bad news.  The statistic is six months.  He died in six months.  

And of course, anyone who has been following for a while knows Julia was diagnosed with her cancer literally the day after my dad died.  So I'm coming up on the two year mark of constant stress and grief and anxiety.  It's been two years since my biggest concern was having to drag two babies into my office to get work done.  


I felt a migraine coming on last night (if you get migraines, you're familiar with the aura that sometimes provides a warning).  It's usually due to weather, but I've been so preoccupied with Julia that I don't even know if our weather has been weird.  Charlene says it has been.  So I came home and took medicine.  It helped a little.  And today I've just been exhausted.  Julia's doing the same, so I stayed home to attempt to do laundry, but it's been a very slow process.  

I'm just so tired.  With life.  And in my situation, I can't even "look forward' to having things calm down.  And not having to drive long round trips to the hospital, and no longer living without my husband and other child, and being able to just be bored at home and just complaining about having nothing to watch or eat... because it will mean Julia's dead.  So it's the last thing I want.  I want this stressful life to go on forever, because that is the only option I have right now.  But I'm just so tired.


Julia's had a super sleepy day.  No one is surprised, since pretty much nothing is working on her body.  We're all pretty shocked she still wakes up at all.  But vitals are all the same, heart rate 170s, blood pressure 70s/40s.  No fevers.  Her drain is letting out very little, but whatever is drawn out, is replaced through IV to keep her hydrated. 

With her right chest tube out, cuddling is a lot easier.  It was difficult with a tube of some sort coming out of every quadrant (in addition to all her wires).  So Reed has been able to lay in bed with her much of the day.  She wakes up a bit when she's moved or bothered, they watch cartoons for a minute or two, then she's back asleep. 

So not a whole lot of alert time, but no new concerning symptoms, and she looks very comfortable.  Sleepy Julia.


Charlene's mom, "Granny", came up from Texas to stay with their family with the news of Julia.  And Gabriel has claimed her.  His cousins don't get to cuddle with their granny.  All Gabriel's.  So he's content as can be <3 


No video tonight.




*********** ~~ Julia Adams ~~ ***********   

************* Official Links *************


Julia's official pages: 


Facebook: Julia's Fight Against Rare Cancer - Fund


Julia's official fundraisers: 

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Car Magnet:

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 2018. You can find them all on my Facebook page or Julia's website.  A current summary can be found here:

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Mooda Larson
Mooda Larson
Mar 02, 2020

You are all amazing, nice Granny came in. You are all in my thoughts and you all inspire me to be a little more grateful and little more energetic even when i am not. Bless you all! Keep up the good work Julia, such an angel. Gabriel is beautiful too.


So sorry for your migraine, Amy. That you are tired clear to the bone is not at all surprising to those of us who follow Julia's story. The current dichotomy, needing rest and a normal life, yet terrified over the one thing that would return life to a new norm, is so cruel. None of us want to be you, Amy, and all of us are so impressed with you! And Reed, staying there 24 hours a day for more than a year - unbelievable.

How you will manage if and when Julia passes is unthinkable. However, I still am praying for a miracle. God can still heal her, if it is His will. I pray for this, and fo…


Jen H
Jen H
Mar 02, 2020

I don't always comment but I am always praying. Praying that you rest tonight and wake refreshed in the morning.

May the love of God surround you with a peace that feels supernatural.

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