Wednesday, September 7, 2011


What a lovely warm word.   We are home now from the hospital, and plan on staying here for a long time!  

So, several things happened after we were discharged from the hospital the first time.  We had come home with Calli still having a fever, which we well knew was a kidney/bladder infection...but they had cultured it and pinpointed the right antibiotic, so they felt confident that Calli could fight this at home...away from more germs.  

But, after we arrived home, things went down hill, she could not eat, could not move her head, neck or even sit up, she was sleeping 24/7 and light was hurting her eyes, on top of that, her fever was getting higher and higher!  After 2 days of the right antibiotic at home, I began to think my child had something else going on!  So, back we went!

Driving on the highway at night, is not bad at all, I have learned,  We got to Chop's ER in 35 minutes flat.  They whisked her away from all other people in the waiting room, isolated us in a private room, and began the pokes, prods and tests.  I thought she had meningitis, they were not sure, so they admitted her.  3 pokes later and an IV finally worked in her arm.  She had a total of 9 pokes in the last two weeks for IV's.  

After a few days, we all figured out that a few things were going on at the same time with Calli. Besides the kidney infection, she is having major radiation side effects.  Radiation stays in your system and builds-up, increasing and increasing.  Due to this, her tumor is breaking down (good!), causing major swelling, blood product essence meningitis in her brain & cord (inflammation due to side effects not a virus or a bacteria).  That explained the neck, head, vomiting.  Now...couple that with the other side effects of radiation that are having their hay day right now...major nausea, vomiting, and extreme fatigue. 

On top of that....because she was on steroids for so long (to decrease said swelling), her body decided to take a break on making the stress hormone cortisol, which helps you get better when you are sick.  You see, the steroids helped decrease the swelling in her cord and brain, but to stay on long term...makes you unable to fight simple we weaned her off of them the last month.  BUT NOW, we are seeing those side effects- ugh, the remedy? put her on more steroids....

Her body would not assimilate the antibiotics,no matter if they were right or not.  It was just trying and trying so hard to get better, but could not.  Her blood pressure was so very low, and her heart was beating so very fast, and her fever would go and come and go, she could not eat, I had to force her to get up and go to the bathroom.  So besides IV fluids & antibiotics, she got IV cortisol, and after two days of that, we saw a huge turn around for her..She was sitting up and doing physical therapy, and her beads of courage, the day we were leaving I took her down to THE VOICE
We LOVE Kristen, she was our very first PT!

a bead for everything.......

Therapy, going back and remembering all that she went through and overcame!

The VOICE- she was quiet...ha ha
I even got her to let me put on my fairy wings and prance around!  I will do anything to make my Calli smile!

It was on the evening of Aidan's birthday, that we were allowed to come home :)  Mike surprised Aidan by taking off of work, something he NEVER does.  Aidan was so surprised and elated when they took a long drive and ended up at Cabelas!  After spending all day at Cabelas with his dad, we surprised him, and he was so happy that we did not miss his special day (well night).
Happy 12th Aidan Michael!

So now, Calli is mending, but the major effects of radiation are increasing.  She sleeps about 18 hours each day.  She woke yesterday, did some math, took a LONG nap, and rang bells for the first time.  I was not sure at all how she would do standing for so long (2 1/2 hours)...but it is one of the only things she looks forward to, and she is ringing in a wedding next Saturday with some very talented ringers.  She made it through the whole practice, and then got in the car...gagging the whole way home.  As soon as we walked up onto the front porch she threw up all over the bushes.  She cannot stand the smell of food, and someone had a hoagie or smelled like a hoagie- and she was holding it in that whole time, determined to succeed in a normal thing.  I asked her when she got home, if it all came back to her.  She replied, "Mom it never left me."

I had a LONG nap, and am Ready to ring!

So, we are slowly starting school.  We were given a 6 week break from all doctors and just could not stay away:)  Oh well right?  We did do some pretty neat things in just a few weeks, so I will post some pics of before she got sick.

On another note, her MRI is this saturday.  It is 4 hours long :)  Monday we go back to CHOP and meet with her team of Neuro-Oncologists, to discuss the new baseline the MRI will give us, and what they think they desire for us to do.  We are still praying for wisdom and illumination from the Lord on our next step.  

Days here are simple,and slower and it is nice.  Less is more <3

This next song always makes me want to get up and dance, It is a good one :)

1 comment:

  1. Calli, you are so adorable- especially in that little red cap... :) Thanks for making me feel special through in all this poop! lol.
    I love you. xxoo
    Keep the faith, keep the faith, I got it and am not giving it up, giving up on you! Remember the covered bridge. I am on your side, not just me though -
    Everyone is!
    Much love to you and your ma and pa and that 12 year old brother of yours ;)
    aunt alison


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