Wednesday Night

It is very surreal to be sitting in the dark updating the blog in one of these rooms again.  I keep getting flashes of all that happened back in March and April with her surgery and diagnosis.  Back then everything was so new and there were so many unknowns.  Now this feels like our home away from home...

Not much has happened today.  She is still in contact isolation.  We are separated from the world by two heavy doors and a sanitizing station and everyone who comes in is suited up.  If only we could maintain that barrier all the time and avoid new germs.  Unfortunately its not a portable arrangement. 

This round of fevers is just a reminder of what lie ahead.  Tis the season for cold, fevers, flus, and bugs.  Unfortunately with a port, everyone of those lands you a stay at Camp Brenner.  We have been so blessed up until this point that she has stayed so healthy.  Most chemo patients have had dozens of hospital stays by this point.  We are very thankful for her good health and resilience and are preparing ourselves for the next year with this port.  It is such a blessing to have for her countless tests and tretaments, we want to do everything in our power to keep it healthy and working.

She has laid still all day today watching TV.  She tried to eat a few things, but never got past the first bite.  She's had several cups of ice and half a popsicle, so hopefully that helps.  She is still running a fever.  They've been giving her tylenol, but the lowest its been is 101.5.  Unfortunately we run high fevers in our family and motrin works best for Julia and me.  Unfortunately with only one kidney, Julia is not allowed to have motrin, so we wait.  She is feeling pretty achy all over.  She cries whenever we have to move her.  The nurses have all been wonderful and are doing everything they can for us.  We haven't talked to the oncologist since this morning, so we will hear their plans at rounds tomorrow.

She is handling everything well.  She did talk once today, when she was watching TV.  Kai-Lan asked if anyone wanted to go to the beach with her and Julia said, "yes, I do."  Me too, sweetie, me too!

You can see she still keeps the pacis in her toes, like before.  She has now designated a specific color for each appendage, too funny.  But it has helped her to cope and comforted her tremendously.

She asked for her Bible stories around 9pm and has been slepping peacefully since.  We pray for a good night's sleep and no fever spikes tonight.