We have been back and forth all week this week with Brinley's fevers. Thankfully she has not been admitted, but she is borderline...her ANC went down to 500, anything lower than that combined with a fever is a direct admission, so we are hoping for no fever this weekend! The virus should be about done (they are quite certain it is a virus).


So I was having a pity party with all of the back and forth, finding babysitters, hauling Mylee to the hospital, blah, blah, blah. Fevers trump everything, all plans for everyone else get the back burner. It can be very "inconvenient". So as I was having this pity party, I had a realization. This is our price. This inconvenience in our lives is the price we are paying for Brinley's life. A price we will all GLADLY pay. Suddenly it seemed like NOTHING to me. OF COURSE I will rush to the hospital for fevers, chemo, etc. OF COURSE I will give IV antibiotics all night long (okay so David did most of the night meds, but you get the point.) OF COURSE I will do my part without complaint so that she can live. Of course. It is nothing at all, a small price to pay to have her here with us. So this is me telling myself off:
Shame on you for being annoyed at the "inconvenience" of hospital trips. Shame on you for whining about medicine, and masks, and such. Shame on you, Kristin! There, it had to be done, I'd rather it come from myself than from someone else!!

It is a different story when she is in pain, that is about her, not about me. Inconvenience for me and pain for her are two different things, and she is paying a much higher price for her life. I want that part to be over for her. But I will do my part as a member of the team of people that is saving Brinley's life. And I will do it without whining!

GRRRRRR! This fever that Brinley has is being very stubborn. It is very high and not going away. They are letting us give her Tylenol since they think it is viral, but we are traveling up to clinic a lot this week. We were supposed to go in Friday to see if she needs a transfusion, but since her fever is getting up to 103.4 without the tylenol, they want her to come in today instead. They have cancelled her chemo this week because they don't want to start her on steroids while she is sick. I am getting concerned because these are not the same symptoms Jade had. Jade's high fever only lasted a day and a half, and she had a cough, runny nose and sore throat. Brinley has none of that, just a very high fever. Very unnerving. But I know her cultures have come back with no growth, so it's not anything in her blood. We'll check her counts again today and make sure her ANC is still good or we will be inpatient. Fingers crossed for good counts!! I will update later.

The Good


...It really was a great weekend.  While we were in the hospital, we got tickets to go to a "Dream Night" at the zoo, so we took the family to that on Friday night.  I can't describe how awesome it was.  Everyone there had some kind of health issue, there were many handicapped children, children with down syndrome, etc.  It was an amazing feeling to be there, we were so happy for the moment of fun in our stressful lives.  As I looked around, I realized EVERYONE there was just as blissfully happy as we were.  I knew that they also had to endure suffering, many of them much worse than ours.  I knew that they were just as grateful for that moment away from it all as we were.  They provided a dinner from Chick fil A, and I just sat at the table and watched my family be happy.  I could have cried right there if it weren't for the confusion it would cause in my kids...mom crying while eating her Chick-Fil-A sandwich...

...Brinley got counts yesterday and her ANC is 1000!  Rebound!!  So she is back on the chemo, thank goodness, and off ONE of the antibiotics.  The other one will continue through Friday, but it eases up a bit on all the IV meds...

...Taylor is away at her very first girls camp!!!  She was so excited and hopefully is having a great time.  Apron strings.....no not yet....she's still quite the momma's girl.  But she also moved downstairs and is finally in her own room.  She was a little nervous to move down there, but after the first night, she came upstairs with a HUGE smile on her face and said "I LOVE it down there!"  Poor thing had no idea what privacy was and finally got a taste of it.  And it tasted goooooood.....

...We had my mom here for the weekend for my nephew's baptism and it was fun to spend some time with family, even though David, Jade and Brinley missed out :(  My mom stayed home with Brinley and Jade on Sunday and the rest of us got to go to church together.  David and I actually got to teach our Sunday School class together again, it was quite nice.  We were spiritually fed :)  Always a good thing....

The Bad
... We had planned to go to St. George for the weekend and had to cancel it because of Brinley's low counts and all the meds.  That was very disappointing.  It was our first trip out of town.  We really missed seeing David's family and hated missing my neice's baptism (that was the occasion)...

...we realized Jade is still quite sick, it seems to go up and down, and it looks like Brinley has managed to catch it.  Sigh.  So last night was an ER trip with a fever, but because of her lovely counts (YAY) , we were sent home after a culture.  They tested her for swine flu, just to be safe, and she was negative.   Whew.  No growth so far in the culture.  She got another fever today, about 101, so it was back to the hospital.  It was during regular hours, so we got to go to to clinic and it was much quicker.    It went up to 103, so they gave her some tylenol to get it down.  They did another culture, gave her rosepha (sp?), another antibiotic that covers very generally, and sent us on our way.  I barely made it to Mylee's 2 month appt for shots.  It was a busy day.  So Brinley is covered for 24 hours and if she gets another fever tomorrow, yep, back to clinic for another culture and dose.  Let's hope it won't come back tomorrow....

...Mylee had to get 5 shots instead of 3 because she can't have any live vaccines while Brinley is on treatment.  Sooo, the 5-in-1 vaccine had to be split to remove two of the live vaccines.  That was a lot of shots.  She was so sweet though, she didn't cry at all with the first 3, she just sucked on her binky, and then finally cried with the 2 that burn going in.  Her crying lasted about 20 seconds, then she was fine...little sweetie...

...we had to do a dressing change tonight on her PICC line and it was awful.  It has been much worse on her arm than it was on her chest, if that is even possible!  We can barely hold her still, she is so strong, and her hair is soaked from her tears afterwards.  It is still so sensitive, and she moves so much it tugs on her stitches and causes more pain.  We almost need another person to hold her still.  We don't ever want to do it again, but we have to do it twice a week, it is heartbreaking...

...the weather has been rainy, which WE love, however, with Taylor at camp, I know they are getting dumped on.  I hope they are still able to enjoy it...

The Ugly
...the upstairs of my house is a disaster area....very ugly...

...I had to miss pet day at pre-school today and Jade said she wished I was there because she was funny and all the other mom's and dad's laughed at her, but her mom wasn't there...ugly...

...we are very tired and getting very little sleep, Brinley included...

...The last 2 weeks have just been ugly, with a few great moments...TREASURE THOSE GREAT MOMENTS!!!