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January 21, 2019

One last quiet day for Julia before the war begins. That's what it feels like. Tomorrow she starts an extremely aggressive chemo - her last shot at reversing this cancer. Five days of IV chemo, followed by a day of 'recovery booster', and then we wait. This drug combination has worked for her type of cancer in the past, but I don't know that it's ever been used at this advanced stage. We're continuing all alternative therapies along with this treatment.

Vitals today: Heart rate has been higher than normal, 140s-160s. Still no one believes she's in pain, because she can still make it clear on her face when she's unhappy. But when her heart rate stays high for an unknown reason, an extra dose of pain meds does bring it down. That could suggest discomfort or irritation. ET in the mid 80s today. Fewer episodes of sporadic breathing today. BP continues to hover high at 178/128. Her meds are being adjusted a bit in preparation for chemo. Her BP medication is being switched to something more chemo-friendly, and I believe she's coming off the Morphine. I'm not sure what they're switching to, but I'm positive pain management remains at the top of their list.

No real alertness out of her today. She did crack her eye open for just a few seconds, and we took that as a request for cartoons. So she at least got to rest listening to her favorite nursery rhymes. She had visitors today. Her cousin braided her hair, and her brother pulled on her wires.

So that's really it. Tomorrow they start blasting her with chemo. I'm thankful she's asleep and no one believes she's very aware. They'll give all the typical meds to help soften the unpleasant side effects. I expect her to lose her pretty hair. Though so much of her head has been shaved for surgeries that we're pretty much halfway there already.

We hope she holds out a few days and gives this a shot - it's the best the medical community has to fight chordoma. We're hoping she doesn't get an infection. We're hoping the shunt continues to manage the swelling in her brain. We're hoping she responds.


I also want to say thank you (again) for the constant stream of love. Prayers, cards, artwork, research, suggestions, gifts... it hasn't stopped since her diagnosis, and it's really unbelievable how many people care and want to show their support for this little girl. My mind is in a constant state of extreme stress, and I'm almost in a daze when I go through my mail (still legal stuff regarding my dad and the business we ran; medical bills for Julia [with all the procedures "her plan doesn't cover"]; health insurance forms to handle the medical bills, etc.)

In the midst of all of that, we've received so many thoughtful things from people... and I don't even know who to thank. I have this beautiful locket with Julia's picture that I haven't taken off since it showed up, we've received colored pictures and artwork from kids, I've been filling up my car with gas completely off of Wawa gift cards, we've been eating home-cooked meals, snacks have shown up at the hospital, stuffed animals, blankets, home-made hats in Julia's favorite colors. Recently we've even received products from you that you really believe in. I know these cost money, and they've been sent for free... in hopes of doing everything possible to help this two year old fight cancer.

... and no one is getting properly thanked because I can't put 2 and 2 together in my head right now. So thank you. Your over-generosity is going unrecognized because I'm so frazzled. I WANT to tag all of you, and share with everyone what thoughtful things you've done for Julia. But I stare at this big pile of envelopes... cards, mail, forms, gifts, bills... and I can't remember who sent what.

So thank you for everything you're doing. Thank you for following her story even though it's extremely depressing. Thank you for the constant messages even though now there are too many for me to respond to. Most importantly, thank you for the prayers. She needs a miracle, and we're trying everything we can to give her one.

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