Friday, January 23, 2015
The people were amazing, the resort was nothing short of heaven, the food was delicious and the
I could go on and on about how much we loved everything but this blog post would turn into a novel! Instead I will just tell you Emma's favorites. Emma loved meeting up with her Mouse friends Mickey and Minnie. One of the days we found Stitch! She made space goo with him. She loved that the pancakes and waffles were Mickey faces, now I have to find a Mouse waffle iron! Funny enough she hated the sand. This little princess does not like to get "dirty" and apparently sand counts as dirt...who knew?! She was okay with us carrying her to the water and she loved sitting on this floating board they had in the water with her Daddy.
Here are some highlights!
Friday, January 9, 2015
Emma's main doctor who does her "road map" (a plan of medications with a timeline and dosage) is out of the country for another two weeks. He is only reachable by email. The doctor we saw yesterday told me that in these cases they typically pretreat, meaning, they continue to give her the chemo but give her the meds for an allergic reaction first...does this sound crazy to anyone else? I know I did not go to medical school but giving a child a medication that we KNOW causes a severe
|Once she was stable, it was much worse!|
For today and perhaps the next day or two we will be watching her for another allergic reaction because she got about 1/3 of her chemo before we stopped. It is still in her system. They sent me home with medication in case she gets a flair up. Needless to say I will not be doing much relaxing or sleeping until I know she is safe for good.
Long day. Just breathe.
Wednesday, January 7, 2015
|An Emma fly! Wings from The Dainty Warrior.|
Last bit of housekeeping, we seem to be getting more public lately. I see this as both good and bad, but mostly good. We really focus on paying it forward so the more people who follow our story the more likely we are to inspire people to advocate for childhood cancer research, donate jammies or toys to a children's hospital, and help us give away inspirational calendars. The flip side is lately I am
A huge thank you to everyone who prayed for us in the hospital and a heartfelt we love you to Grandma and Grandpa, Leia, Katie, Andrea, and Sarah for going above and beyond in the hospital and arriving home. With out your help things would have been unbearable.
Sunday, January 4, 2015
|Before the hospital|
A couple hours later we were being admitted which started three days and two nights at CHOC. They ran all sorts of tests and checked vitals every two hours. The tests all came back negative and her ANC (blood count that represents immune response) kept declining. For me it was also concerning to see very labored breathing and low blood pressure. All we really knew was she was fighting something viral and had no immune system to fight it off.
|Not happy :(|
This was not a good start to 2015. I had so much hope starting a new year off right and on New Years Day we land in the inpatient wing...oh the irony. I'm disheartened, grumpy, and ready to throw an adult tantrum about missing my family vacation. Not cool.
|Sleeping in the cot|
The name of the game now is house arrest. We will be staying home with Emma until Hawaii. Hopefully this allows her numbers to go up and prevents her from catching anything new before our trip. If we do leave the house it will be in masks or for doctor visits. I said on the facebook page the other day that we could use meals this week. If anyone is willing to help with meals that would be amazing. We will be limiting visitors as well so please be understanding if you stop by and only I come out on the porch to chat. This will be hard for me this week because I tend to get cabin fever easily so please keep chatting online with us!
|Cora in the Disney wing of CHOC, as close as we got to Disney|
|Leaving the hospital!|