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February 5, 2019

Julia's counts have all continued to rise really well.  Vitals are stable: heart rate 120s, Oxygen saturation high 90s, ET low 60s, BP 108/71.  Nothing about her medications or assistance has changed (still on the small doses of Morphine/sedation while weening, and still on same amount of ventilator assistance).  Her left eye continues to respond as expected, and she's still biting down on Reed when he gives her medicine.

The very unexpected news is she's getting an MRI TOMORROW(!) I've been sick to my stomach since I heard the news honestly.  I have no idea WHY she's getting one so soon, and of course Reed is there by himself and never asks any questions.  Did the doctors see something concerning?  He says if they did, he doesn't know of anything.  Just, the last time they ordered an unexpected MRI it was because they were concerned about her no longer using her right hand (which means they saw it, talked about it, scheduled it, and got the results, all before we heard anything about it!) So I can't help but be nervous that they feel there's a problem.  But maybe she already reached her "magic number" for blood counts and it's time?  Just two days ago they said they still expect 2-3 weeks of recovery, so that doesn't seem right.  Reed was told by her nurse because I guess the MRI schedule popped up in her chart, and the doctor hasn't stopped back in to ask.   

I'm just super nervous.  A follow-up MRI isn't usually done for 3 MONTHS.  They were making an exception and saying 3-4 weeks given her advanced stage... but now it's tomorrow.  She's only been done chemo for like, a week!  There's no way it's had enough time to do anything useful.  I don't want to be told the cancer is still growing and to lose all hope in this treatment.  Ugh.  It's just too early.  

So she's on the schedule for 2:00 tomorrow, but that can change.  I'm sure I'll hear from Reed the second he knows anything, but I'm going to be a wreck ALL DAY tomorrow waiting.  This anxiety over scans is awful.   I guess that's all medically.  I'm so nervous for it I can't really think of what else to say.  

I received a lot of encouragement over her hair loss after my post last night.  And I really appreciate the new perspectives: she's still HERE to be trying chemo, and it's a sign that the chemo is successfully attacking quickly-dividing cells, such as hair (and her cancer is CERTAINLY quickly dividing!) It's sad to see your little girl lose her pretty hair, but I'm trying to be less negative about it.  I have enough to stress over.  (And SO many people have messaged me offering to donate their hair for a wig - from young girls to grandmothers!  We're not going to go that route just yet [I'm sure losing her hair won't bother her nearly as much as it bothers me!] but I REALLY appreciate all those thoughtful offers.) 

I also wanted to say THANK YOU to everyone who has ordered t-shirts.  I honestly had no idea t-shirts were even a thing for something like this, but so many people requested them, and the response has been really wonderful.  All six designs have sold, with the "Be Your Own Hero" Rainbow Hands being the clear favorite. We can even see that many of the designs have been customized to something else (a different style shirt, coffee mug, pillow, etc.).  I can't see exactly what they are... but I'm so curious to know what some of you have purchased.   I wanted to let you know that since we put the t-shirts up on Sunday, you guys have already bought enough to pay for 4.5 WEEKS worth of Julia's alternative treatments!  That is a HUGE financial burden lifted.  THANK YOU!  

If you haven't bought something and you're interested, the designs are laid out nicely on Julia's website:, Or you can go right to the Zazzle store (some people were having issues with links, but I think it's resolved):  There is no rush on ordering - we won't be taking down the designs.  Thank you to everyone who kept suggesting t-shirts, especially Eileen.  It turned out to be a really wonderful idea.

And since I'm mentioning things, I believe the Beef and Beer event that my friends have put together is a little more than half way sold out.  If you're local and interested, I think they've come across some pretty cool raffle items =) Details here:

That's all I've got for today.  I really really really hope I have good news to share tomorrow.  

. . . ********************************* *********** Official Links ********** (These are here because of scammers) *********************************

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraisers:  Beef & Beer (Feb 23) - T-shirts -

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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Good morning. I still check on you and your family everyday and pray for you. Thank you for sharing. You are gifted in communication and though this time is so painful God has given you strength everyday. We can never plan ahead for times like this in our lives but He doesn’t leave us. Praying for you today as you wait, Amy. Praying for Reed as he is with Julia and that he can ask questions and share clearly with you. And praying for your precious, Julia. Love and hope, Mary (old philly friend of Reed’s cousins)💕

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