Well, bummer news. The fourth culture grew bacteria. AND they found out that the third culture was a different type of bacteria. It's called bacteroides. They thought that was pretty bizarre, but the fourth culture was back to the bacillus. It was disappointing because it didn't grow until later this time, so we were discussing with the oncologist how it is all cleared up when they got the call there was growth :( So we have to pull her central line. They are doing the surgery tomorrow morning. They have already put in an IV and this is all reminding me of the week she was diagnosed, with surgery and IV's and medicine. She has been having a hard time, but still manages to be pretty silly sometimes. When they were putting in the IV I kept saying how tough she was being. Afterwards, through all they tears she said "I'm tough mommy." Yes Brinley, you are so tough.

So what will happen in the next couple days is they will take out the central line tomorrow. They want to just use an IV for a couple days to make sure the bacteria is completely gone, then they will put in a PICC line. She will have that for a couple weeks and we are going to discuss whether to put in a new line or a port. I don't ever want to have this happen again, so we am leaning towards the port because they are less likely to get infected. We'll discuss pros and cons with them. So that's where we are right now...

Brinley's third culture today also grew bacteria. That was bad news, it grew very quickly again, in 12 hours, and the ped said that indicates it is still a bad infection. However that was drawn before the new antibiotic was given. We were told normally they will do a three strikes rule of thumb, if her culture grows bacteria 3 times they pull her central line, because that would be the problem. They explained to me any time something foreign is in your body it can really be a breeding place for bacteria. They decided to give it one more try though just to see if this antibiotic can do the job and we can save her central line. If this last one (taken at 6pm friday) grows they will do the surgery to remove her central line. Then they will insert a PICC line in her arm for a month or so to clear the infection completely and we will decide on doing surgery for another central line, switching to a port, or doing all her chemo strictly through IV. We've moved to Monday for the earliest possible release. It's beginning to get hard on the other kiddos.

The good news: I actually feel confident that this last antibiotic is working. She has not had a fever at all since they administered it and she has been feeling a TON better. She was happy most of the day, and that is a big improvement compared to yesterday. She has been so cute and goofy, we got some video of her today just being her cute self. So I am really thinking the culture will not grow this time.

Something funny: For a two year old, Brinley is sometimes beyond her years funny. David said tonight the new nurse came in to introduce herself to Brinley and told Brinley to call her if she needed anything. About 5 minutes later, she came back to tell David something. Brinley looked at her totally straight faced and quietly said "I didn't call you." David said they both about died laughing. Funny girl.

They know more today than yesterday.  The bacteria she has in her blood is called bacillus.  There are two different types, and they are still waiting to find out which type.  In the meantime, she got a fever last night of 103 and her second culture also came back positive for bacteria.  So the first round of antibiotics did not work.  We are waiting for the results of the third culture to see if the three antibiotics she was on yesterday worked on the infection.  They are giving her the mother antibiotic that is supposed to be really strong.  She had some minor reactions to it, her whole head and face turned red and itchy, but they continued it with benadryl because they really felt she needed this particular antibiotic.  the benadryl did the trick and we will just have to give it to her before every dose.  I worry that she is resistant to the antibiotics because she has had so many.  She is not dangerously sick right now, so they think she is out of the danger zone, but they are concerned that she still had a fever and the culture is still growing bacteria.  They said it is under control, they just have to find the right antibiotic, and if it turns very stubborn we may need to discuss options for a line replacement, bacteria like the central lines and it can be problematic to clear them sometimes.  She goes from being silly to sick, it's been pretty up and down.  She wants to go home, but they are so good to us here.  The doctors have been wonderful and informative and have kept us very updated.  Going home on Saturday is out of the question, but maybe Sunday if she passed the no fever, higher ANC or clear cultures test.   

Here is a message from Brinley, she wants to type too! mmmmmm,.mmmm,,,,,,,,,,,,,,,,,,.....

Interpreted that means thank you for all your prayers and support and she loves you all!

I will give a detailed update, if you are not so much into the details you can skip over most of this, we have families out of state who want to hear the long version....

Brinley's culture grew bacteria, which means she has some kind of bacterial infection, the kind we don't want with an ANC at 100 (it dropped).  She is very sick.  There are two kinds of bacteria they look for, gram positive and gram negative.  They are pretty sure Brinley's is gram positive.  I have had a confusing day, this is all new to me and sometimes I just need someone to explain things to me in human terms, so a friend who has been there, done that, with her son took on the task of informing me.  Here's what I got, hopefully I've gotten it straight.  Gram positive is the "bad bacteria," it grows very rapidly, which is probably why it grew so quickly in her culture.  That could mean a line infection in her central line.  I also think it may mean a staph infection, with her toe having an open wound.  That is just me adding my own stuff...but one of the oncs did say that although her toe is not infected it may have been used as a door for bacteria to enter her body.  Hopefully tomorrow we will know exactly what we are dealing with.  The resident doctor said if she continues to be this sick tonight (I am home now, so I don't know if he's been back yet to look at her) they will get out the momma antibiotic (the name escapes me, so I named it myself :)).  Why DO they have such difficult names....but this one is really only for more serious infections that will not go away with the other antibiotics (which I originally thought WERE the strongest out there...who knew they were hiding the momma antibiotic from me...).  They don't like to give it because it can cause some side effects that are not so pleasant, like diarrhea and a few others.  Hopefully she will start improving tonight.  They currently have her on 3 different antibiotics to try to attack from every angle, since they don't know what they are dealing with yet.  The resident said "best case" scenario we will be there until Saturday morning, but she must be fever free for 24 hours (she is still running a fever) or her ANC gone up out of the danger zone.  And the culture has to come out clean.  Without the white blood cells to attack this bacteria, Brinley is in a war with no defenses.  She has no way to fight it.  Up to this point we have managed to avoid bacterial infections, this is the reason they drill it into our heads to get her to the ER if she has a fever.  They can be life-threatening.  

I look at her sick face and wonder what is going on inside that little body that is under attack.  The onc told me this morning that these type of infections can come on so fast and be critical within an hour.  That is scary.  The good news:  we have weapons to put into her body.  Thank you antibiotics!!  They saved Mylee's life when she was born, now hopefully they will work their magic and save Brinley's too.  Thank you, thank you, thank you medical world!!!

Prayer requests:  

That the antibiotics will do their job and kill the bacteria that Brinley's body can't. 

That David and I will have the understanding of the medical aspect of all this to make good decisions for Brinley.

That the doctors will have the wisdom to do what will get Brinley healthy again.  

I am out of time to update...here's the short of it.  They admitted her for the fever because she has nothing to fight an infection.  Her ANC is 200, that is very low.  We will have to wait to see if anything grows for an infection, but they gave her Tylenol to make her fever go down, and David said she has been happy, that is good.  

It is 2:30AM and Brinley just woke up and vomited.  She had 104.6 fever.  David rushed her to the ER and I am left here sick to my stomach.  I have been pacing, tried cleaning, checking my e-mail, what can I do?  I'll blog. This is the highest fever she has ever had on treatment and came on the fastest.  She was fine when we put her to bed.  These are the kind of moments when I am reminded of what Brinley has.  A disease that can easily take her life.  Just like that.  Things can be going on just fine, and BAM, you get a kick in the gut to remind you of how fragile she is.  

I am scared.  This is the most fear I have had since she was diagnosed and we had to come to the reality of our baby having cancer.  Where did this come from?  She cut her toe really bad today on our door.  A flap of skin was hanging off, and I cleaned it up and bandaged it.  Did she get an infection?  How many hours has she had a fever??  I don't even know her counts.  A million thoughts swimming around in my head....please let my baby be okay.  I have already been on my knees begging the Lord that she will not die.  And that is the kind of fear cancer parents live with.  Every fever, PLEASE DON'T DIE!  Every complaint of knee pain, PLEASE DON'T BE A RELAPSE!  PLEASE LET HER BE ONE OF THE 90%!  DON'T LET HER BE ONE WHO DOESN'T SURVIVE!  Cancer is like the elephant in the room.  It's always there, we try to get around it and ignore it, but we just can't.  We try to push it outside, we don't WANT it in here, but it won't budge.  We don't have what it takes to push it out.  Oh, how quickly she could be swept away from us.  I am sick.  Ugh, I can't stand to just sit here!  Why, why did she get this?  Why did she get cancer?  No thanks, we don't want it any more.  We want to give her some tylenol and call the doctor's office in the morning, not wonder if she'll be here in the morning.  

Hopefully tomorrow morning will have a post saying all is well and she is home.  

Just wanted to share a post written on the list for parents of kids with ALL that touched me.  It was written by Alicia Hall, mama to Avalon, who also has leukemia.  I couldn't possible say it better than she did.  

"This post is for our Angel-moms.  Its also for any of you who have prayed
for/hoped for/wished for/and cried for one of our beloved chemo warriors.  I
fully understand that Memorial Day is intended to honor the incredibly brave
and selfless men and women who have served our country to protect the
freedoms we hold dear.  I celebrate each of them, and grieve with the
families for those that have been lost in that fight.

But today, I also celebrate some of the bravest, most courageous warriors I
know...cancer kids.  Our children did not choose to go to war, but they
embrace their duty with dignity and a strength of character that often
humbles those of us blessed enough to know them.  I celebrate the lives of
those that have won their wars, and those whose battles ended early.  I
celebrate the generals of the war, those amazing doctors and research
scientists who arm our children with the weapons they need to fight, and the
battle plans to do so.  I am grateful and I thank them.

Yet no matter how much I value those generals, in the trenches, its the
determination and pure heart of our cancer warriors that endlessly amazes
me.  Cancer kids have wisdom beyond their years, and an appreciation of life
that we cannot hope to grasp.  They face each battle with resolve...to win,
and to continue to *live* - no matter what the actual battlefield score is.
I've know warriors who faced monumental odds...yet they fought on, and
somehow enjoyed life in spite of it.  Cancer soldiers don't know what it is
to quit - they only know to move forward, and attack each new day with
eagerness and fortitude.  In the best definition of the word, our children
are warriors, seeking to win a collasal war against a bitter, heartless
enemy.  I celebrate their strength and courage.

On this day of memorials, I also choose to remember those soldiers whose
battles ended early.  Each of them has left an indelible footprint on my
heart.  I may never have met them, but I hold them and their grieving
families tight in my thoughts and prayers.  Their lives, their struggles,
are not lost to the cosmos... they changed our world and have left their
mark on it.  Each of the warriors the enemy has claimed has caused a ripple
in the ocean.  Each has wrought change, and brought hope to the world.  I
know it doesn't help aching hearts or longing arms...but I want our Angel
moms to know...I celebrate the Beauty and Strength that are your children.
They mattered.  They are not forgotten.  They are a part of each of us who
storm the Heavens asking for answers.  They will forever be with me as I
fight to tell people about this secret war.  They are conquerors, and we
will always REMEMBER them.

May your hearts find hope and peace today."

Taylor's soccer team took the State Cup championship this weekend!!  Go Avalanche!