Sorry I took so long to update, I have not had time or energy, it has been a long few days.  We came home to a very sick Jade and went to the doctor the day after we got home.  She was tested for strep because her throat was red with white spots, we are still waiting for the results, but the rapid test was negative.  So it may be a virus.  I would rather it be strep, because Brinley is pretty well covered with antibiotics right now, so I can't see it breaking through that!  There is no defense from a virus though, and her ANC is still low, 300, so she would be right back inpatient if she caught it.  We are crossing our fingers....

We are literally giving her IV meds all day.  I finally counted today and realized we are putting something in her PICC line 11 times a day.  It is crazy.  Some take over an hour, so she has to carry around her little medicine ball while she plays.  She is getting tired of it, but has been a good sport so far.  We have had to do two dressing changes on her PICC line since we got home, and it has been really hard for her.  You have to rub alcohol right onto her fresh wounds and it really burns.  She screams and we can barely hold her down.  She calls it her "yuckies" because it still has blood on it.  So whenever we take her dressing off she tells me "see my yuckies mommy!"  or "don't touch my yuckies!"  We also changed the dressing on her chest today from her line.  It was really gross, just a big hole in her chest.  I still can't believe I am able to actually change her dressing and clean her wounds off, I am such a wimp for stuff like that.  I told David tonight that I just can't do it any more.  I can't hold her down and make her hurt.  But guess what?  There is no one else to do it.  Not that I would pass the buck if there was, I know it is better for me to do it than anyone else.  I just wish it didn't have to be done at all.  I want it all to be over.   
Brinley has had diarrhea for 3 days now, so I have to take a sample in to make sure she doesn't have c-diff.  It is an infection that antibiotics can cause.  I finally got a good sample tonight so I'll take it in tomorrow.  Yep, I had to bottle up a sample of her diarrhea.  Grossed out yet??  Guess what we would do to clear it up?  Another antibiotic.  So I am hoping that she will not have it, I don't want to give her another antibiotic.  The antibiotics can cause diarrhea anyways, so it may just be that.  But she is starting to get a rash and I am trying like mad to keep up with it, but with a low ANC they just come so fast.  If it gets much worse she will really be miserable and I don't want her to have to deal with anything else on top of what she's already dealing with.  Her hematocrit is low too, so they may give her a  transfusion depending on what her counts are on Monday when we check again.  Sorry about all the negative news, but hey, it is what it is.  
On the brighter side, we have had a visitor the last couple days that has brightened all of our days!  Aunt Nancy, you have been my lifeline this week! Thanks for all your help!  Here are some pictures from the last week.  

Being silly, boredom will do that to you....

A sick little girl.
After her surgery to remove her line. 
She finally got her big pretzel, that was all she had asked for all day. 
She loved the painting they brought to her.  It got all over!
Coming home.  Dani and Dennis stayed with the girls on Sunday and they made some welcome home cookies for Brinley. Notice the cancer ribbon....that was Taylor's creation.  Cute.
Taylor's sign...
Aunt Nancy and the girls getting into Daddy's shaving cream.
I just love this picture, eating popsicles in the grass.
This is her medicine ball, she is getting used to carrying it around everywhere.  
Okay, so this is the preparation for ONE NIGHT of her meds.  Yes, just one night, from 12:00 to 6:00.  Craziness.  And I thought the chemo hold would give us a break from the meds...ha. 

Good news first, WE ARE HOME!  We got home around 9:00 tonight.  Taylor and Jade were so happy.  Taylor said she had been so lonely this whole time, she missed coming home to someone after school.  She made a welcome home sign and they had "presents" for her.  (Wrapped up toys that already belonged to her, lol).  That's about the only good thing about today.  I am exhausted so this will be the short version.  

Brinley got her PICC line in today because the blood culture showed no growth for 48 hrs (the culture they took from her vein before removing her central line).  So she had to fast AGAIN for 6 hours to be sedated for that.  She was so grouchy and hungry all day.  When they did the PICC line, they did it bedside, so we got to be there to watch.  It is a tube that runs from the vein in her arm almost all the way to her heart.  Long story short, he messed up the first time, had to redo it, messed up the second time, but didn't realize it until she was awake and the x-ray was read showing it was in too far, and he had already left.  They wouldn't sedate her again because it wasn't anything major to correct it, but we had to hold her down and watch her cry to remove the dressing, undo the stitches and put them through another spot in her skin to keep it in place.  It was so frustrating to put her through that so needlessly.  It brought everything that she has been through right back and I just wanted to break down and cry for her.  She cried a lot the rest of the night just asking to come home.  During the procedure Taylor called me to tell me Jade had a fever of 103.  Great.  Just beautiful.  So Jade is quite sick, I'll be calling the doctor tomorrow, and Brinley has an ANC of 200, so if she gets the fever we are right back in the hospital.  I can't even begin to express how overwhelmed I feel right now.  We have to give Brinley two different antibiotics through her PICC line.  That means administering it at 12AM, 6AM, 12PM, 2PM, 6PM, 10PM and again at 12AM.  Not to mention giving benadryl 30 minutes before the vancomycin each dose.  And nursing Mylee at about 4AM.  And finding the time to get Jade to the doctor in between doses.  And be here for the nurse to come change the dressing on the PICC line.  Ugh.  Why can't I divide in half like those stupid cancer cells that took over her body in the first place. And that was the short version.  

The surgery went great, Brinley did just fine with the anesthesia. Hooray!  So the central line is gone!  She finally got her pretzel at 5:00.  That is so long for a 2 year old to fast!!  It took her a while to perk up, of course, but she is feeling fine now.  She won't heal as fast because of her low blood counts, but hopefully it won't give her too much pain.  Next on the list is a PICC line.  She needs to show two clear blood cultures first, so she will possibly get it on Tuesday.  They will sedate her to put that in too.  

Her ANC is not budging.  It is still at 100, so she is still at a very high risk for infection.  She is well covered, still getting the momma antibiotic (vancomiacin sp?).  They hope to see her ANC rise before we go home.  She is on complete chemo hold until her counts recover.  Because she crashed like this they will probably reduce her chemo to 50% when she starts back up again.  Thanks for checking in, she is doing great!

Honestly there is nothing to update. Brinley has been fasting since midnight last night. We're waiting for the surgery but she keeps getting bumped. They had to replace her IV this morning, and missed the first vein. It has been a frustrating day so far. We'll keep you posted.

When we told Brinley they were going to take out her line she cried. She's gotten attached to it. It's like a part of her body. You'd think we were telling her they were amputating her finger. But by now she's so hungry that we keep telling her that once they pull out her line she can eat. She finally told me, "Mommy! YOU take out my line and give me a big Pretzel!". Poor girl I wish I could.

I am blessed. We are all blessed. What a world we live in, where we get to have attachments to other people, so powerful that we would literally HURT if they were taken from us. That feeling, that emotion, is an amazing thing. I can look at my daughter sleeping next to me in a hospital bed, and I can FEEL that powerful feeling of love that we have been blessed with. What is that feeling we get from the moment our children enter this world that would cause us to walk through fire to save them? I remember well when my oldest Taylor was born, I was OVERWHELMED with a new feeling I had never felt before. I had never imagined I could love someone so much. Now I have this family full of children I feel that way about. Every mother (or father) knows what I mean, I would jump in front of a moving bus without blinking an eye if one of my kids was in danger. That is God given. That is a blessing. That "emotion" that is instilled in parents is there for a reason. The reality is that all of us parents endure a great deal of suffering on behalf of our children. Why don't we just walk away? Wouldn't life be easier? When we begin that wonderful, difficult, emotional journey of parenthood, whether it be through childbirth or adoption, we are blessed with a bond that could not tear us from them. It is a beautiful thing. Have you ever watched a mother look at a child like they are her whole world? Or a father, a MAN, notorious for being tough, melt when his daughter wraps her arms around him and gives him a kiss and calls him Daddy?

Families. They have a purpose. It is part of a plan set up by a Heavenly Father who created us that we might have JOY. Families are essential to that joy. My sweet Jade said to me the first night of this hospital stay, when David was staying with Brinley "I just want my family together in this world." It was a bitter sweet moment for me, when my family is split apart it is a difficult thing. But she GETS it. Our families belong together in this world, and in the next. I have been taught the importance of families my whole life (thanks mom and dad), and now I am reaping the blessings of those teachings. I love having a family in this world. I pray that none of them will be taken from me early (I'd like to go first please!), but I know this life is unpredictable. I know it happens to good, decent people and I have learned that I am not exempt from it. I can't imagine the pain I would feel if it did happen, I imagine it would be just as powerful as the joy I experience with them, however, I would know that things don't end in this life. We get to be reunited with loved ones after this life, how will that feel? We are blessed!!!