Drastic Changes in 2 Days - July 15

Update from Brianna's mom Jennifer:

I have a sixth sense that only a mother has...mother's intuition. Through this entire journey, whenever something bad happens or we take a turn for the worse, I suffer insomnia the night before as if I know something is going to happen. I should have known last night's insomnia was a sign to tell Bob NOT to go on his business trip. He is currently trying to get a flight home from Denver tonight. He didn't really want to go, but I told him it would be o.k.
Brianna has been sleeping since 2 PM yesterday afternoon with only occassional periods where she is awake. Awake is a relative term, as we barely understand what she is saying and she is not asking for food anymore. Trying to give her medication in pill form is a challenge as she fights you tooth and nail and she even bit my finger today. She either spits it out or chews the medicine and doesn't drink from the straw anymore. Instead she bites down on it and tries to pull it out of the cup. Nurse Jane is starting an IV since we may need to use it very soon.
Her breathing has changed in the past few days. She will takes 3 breaths then nothing, then 3 breaths. You can drive yourself crazy just watching and waiting to see her take the next three breaths. She is very upset and confused. Last night she said she doesn't want to die. I had to have a long discussion with her to tell her it's o.k. and I talked about Max. I said he might need her one day to help build a million lego sets! I told her there would be a lot of other kids and she can help Jesus take care of all the sick kids, because all she wants is for no one else to suffer. She wants the tumor gone!!
Patience is a virtue, and we are definitely being tested by Brianna “Waaaiit!” “Not Yet!” “5 more minutes!” “Hold On!” No matter what we are asking her to do we get these responses numerous times and she really tries our patience…especially when we try to give her medicine. What should take 1 minute can take up to 10 minutes or more! Based on this information our day today was "Good" (Remember Good is our baseline, there are no bad days.)
Just Monday Grandma & Grandpa Sharp visited and Aunt Julie and Uncle Josh are still here. Brianna was very sleepy and wasn’t making much sense, but we learned that Uncle Josh does NOT have cooties! Whew! I felt bad that Brianna was sleeping the entire visit, but just when they were going to leave she woke up to say hello and give some hugs…but she made us all laugh incredibly hard because she made several shocking statements that we thought were out of her character, but then that’s typical with her confusion lately. Imagine a group of adults hearing certain statements and thinking, “wow,” and standing around somewhat sober faced only for Brianna, at just the right moment say, “I’m kidding” and then smile. Then we would give a sigh of relief and break into laughter. She did it over and over again. I need to preface the next statement because we certainly do not mean any disrespect for disabled/handicapped individuals and Brianna would be the most sensitive to this group. She hugged Grandpa Sharp and told him she loved him and he was special. She then started pointing to each of us saying, “You’re special, you’re special, you’re special.” However she got to Aunt Julie said “You’re special ed.” I can’t even remember all of the other jokes, but it was a great way to end the visit with the family.
Karyn came to give Brianna a haircut (trim). Karyn is one of my closest friends and Brianna and Kaitlyn were flower girls in her wedding. Brianna told Karyn she wants highlights in her hair. Karyn asked her what color and she said one, then two, then kept listing different colors. Karyn said you may not want all of those colors because you’ll look like a bag of skittles. Brianna gave one of her belly laughs and it was an AWESOME DAY. Brianna’s hair is three different lengths. From the radiation at St. Jude the bald spots have over an inch of growth and it’s coming in curly just like when she was little. It took almost 2 years for her to get hair, but once it came in she had beautiful blonde curls, and we loved when it was humid out! Now, she hates her hair and wants it straight. Brianna spends most of her waking hours, which are becoming fewer, running her fingers through her hair…over & over & over & over….she ends up pulling out some of her hair when she does this, but it seems to be a comfort to her. It’s a futile effort to try to do anything with her hair because a minute later she is pulling it out.
Now within a couple of days I am barely able to get her to open her eyes and there are fewer hugs. I can't even describe to you how horrilble it feels to have to feed and diaper your 13 year old. She is aware that she is having accidents and is terribly upset. There are no words to describe what it is like to watch your teen regress back to infancy as you slowly lose them to a horrible cancer.
Brianna keeps saying she wants to go home. For a long time I was telling her we are home, assuming she is talking about our house. Though she just said yesterday she doesn't want to die, I am hoping those words have new meaning so she can go home with Jesus, be comforted by Mary our Blessed Mother, and behold the face of God.
Thank you for all of your prayers and unending support. Thank you to our "Naperville Friends" who delivered the awesome basket of gifts and cards. I will be reading those cards to Brianna so she knows how much she is loved. I am at a loss for words when I see how much love there is for our Brianna. Please pray for God's will to be done and for Brianna to find peace and comfort in the days ahead.