They are keeping us here because they are not comfortable sending Brinley home with the "aspiration" on her lungs, still not sure what that means, can't seem to get a straight answer. Anyhow, her heartrate was low last night, so she slept by the oxygen mask (not so low she had to wear it) and they just feel like they are not quite ready to send us off. So we agree with whatever they say. One more day, maybe? Not sure..
Update for today - Brinley is close to being released, it still looks like today. They want to get her Ara-C chemo first, and they can't do it until 4 because Brinley had it late last night. Our home health nurse can't come do it until 7:30 tonight, and they didn't want it that late, so we just have to wait at the hospital to get it. I'm a little concerned because her heartrate is still really high, and has been the entire stay. It's normally around 110, and it's been between 140-160 the whole time she's been there. They had to turn off the monitor the first day we got there, because it kept beeping the alarm for a high heartrate. The doctors said today that it indicated her body is still working hard to fight something, whatever it is, maybe the lung thing. It makes me nervous, but she really is acting okay, and is so much better than when we first brought her in, so I know she's fine to come home. I just can't believe how quickly that came on. It made me realize how grateful I am to be so close to the hospital. I will always be nervous to travel with her until this treatment is done.
Taylor is doing good in St. George, she has Huenu to take good care of her, however I am feeling so bad to not be there. The part that was the most sad to me is how she reacted to the news. We had plans that night to go to the open house at the new temple here. So it was a double whammy when I told her I couldn't go to that with her AND neither of us could go to her tournament this weekend. But instead of crying, or complaining, she just say "okay, that's fine". I wanted to scream "NO IT ISN'T OKAY! DON'T YOU SAY THAT! THIS IS NOT OKAY! YOU SHOULD BE SAD AND DISAPPOINTED AND CRY AND COMPLAIN! YOU DESERVE TO HAVE A PARENT AT YOUR SOCCER TOURNAMENT! YOU DESERVE TO GO WITH ME TO THE TEMPLE!!" But she says okay mom. I cry when I think of that. Is she that used to being disappointed that is doesn't phase her any more? When I think about the make a wish trip we will get later, I keep thinking how much ALL of my kids deserve that. I understand why they pay for the whole family, because the whole family suffers. I can't wait for that trip!
Brinley hasn't had a fever since midnight last night, but they are keeping her to watch her tonight again. She is feeling so-so, one minute she's happy, the next minute she looks yucky. They said there was pnemonia on the x-ray, so they are treating her for that. She will continue day 2 of one of the new chemos, ara-C, today, which could possibly be a cause of the fever, so we'll see what happens in a few hours. She is getting it right now. In the meantime, we have had to find a way to get Taylor to her soccer tournament in St. George, thank goodness for people willing to help. She'll stay with aunt Huenu, who will be her soccer momma for the weekend. Thanks Huenu!
This all just makes me so sad. Jade cried last night when I told her I would have to go stay with Brinley at the hospital again. Taylor has to go to a tournament without us. I know this month will be hard, yesterday at clinic I was talking with the oncologist about our last inpatient stay last week, and he said "it won't be the last hospital stay this month." We didn't know how right he was! So she is starting the second part of DI (delayed intensification) and they said it is hard on the kids. I just want to huddle my family together and say "we can do this! One month! We will have our normal back, it might be a couple years to feel totally normal, but that day will come!!" My poor kids. How can I possibly give them all what they need?? Ugh.
Long story short: we went to get Brinley's chemo today and during the LP she must have inhaled some mucous or something, because she woke up hacking again and sounded really awful. We went back upstairs, got her chemo and after a 5 hour clinic visit finally went home. Only to get home and realize she had a 102 fever. I rushed back to clinic, within an hour it was at 104. It was very scary, she looked very bad. They did a CBC and her ANC had gone from 1000 to 9000 in one day. The onc didn't like that, so they decided to admit her. She was breathing double time, and he didn't like that either, he wanted her fever down so he could see if she was just breathing that way because of the fever. She is getting a chest x-ray and we will see later tonight what that looks like. It has been a bad day for everyone. Lots of juggling and figuring things out and breaking more plans. By the time I left to come home to grab some stuff for tonight she looked a lot better and her fever was down to 101.5 with Tylenol. Pray that it goes away and she can come home tomorrow. Everyone is struggling and we are torn in 10 different directions. I'll update tomorrow.
Brinley got a CBC today and she made counts to start the second half of DI tomorrow. She will be getting all new chemo drugs and a LP (chemo in her spine), so I think it will be a long day at clinic. But I am glad to get going on this part so we can get it over with. It's been a nice week off of the drugs. I am nervous about the new meds and am not looking forward to more chemo. I am tired of it, surely if I am, Brinley is too.
Jade update: When I took her to the doctor Friday, I was concerned about her health/emotional well-being, so he took some labs from her nose and we did a blood draw to see if everything looked okay. The blood came back fine (huge sigh of relief for me) but the nose lab grew bacteria. That would explain her low fevers and just not feeling great. So we'll get her going on an antibiotic. So there you go, surely there is a lot going on emotionally, but at least there is some answer to the fevers. We'll just have to wait out the emotional part, you can't exactly sweep cancer under the rug.
While we were at the hospital again, I was downstairs eating at the cafeteria and remembering that first week we found out about Brinley's leukemia. I looked over at the corner of the cafeteria where I sat and cried and cried because I was finally alone (well, not counting the many people eating at the cafeteria....). I remembered looking at the people around me and they were smiling and laughing, all while my world was falling apart. I wanted to scream "WHY ARE YOU SMILING! MY DAUGHTER HAS CANCER! CANCER! HOW CAN ANY OF YOU BE SMILING!" That sounds crazy, but I couldn't believe that while everything in my life was unraveling, everyone else was going on like normal. That feeling lasted for weeks, everywhere I went all I thought about was Brinley and cancer. And everyone around me went on with life. It's funny how when you think the world should stop for you, it just keeps on going. School is still in session, David has to go to work, there's piano and soccer and life. It doesn't stop. I remember thinking that everything should stop until Brinley was better, until she was normal and cured. It wasn't fair that we had to keep going with life. One thing I've learned is that there is no stopping time. Life goes on. I wonder when I laugh if there is someone looking at me, going through something awful, wondering how I could be laughing when (fill in the blank) is happening to them. I guess those times will happen to us all.
I am glad that time passes no matter what, because we are already 6 months into this! It feels like forever actually, but I'll take 6 months, especially remembering how awful the beginning was. We have adjusted (for the most part) to our new life, and now we are getting ready for our next adjsutment - a new baby next month. Honestly I try not to think about it, it is too overwhelming to imagine, but I know that we will survive (with a little, no, a lot of help from above) and our new baby will be a blessing.
On my hard days I look like this.....
But sometimes I look like this..... (by now all this stubble has fallen out, she is bald as a cue ball, her head is soooo soft. )
Recent hospital stay, she was a pretty happy girl.
Every once in a while Brinley is a mommy's girl...
But most of the time she's a Daddy's girl...
Here's some Dinosaur Museum pics from Saturday
Brinley's Cancer Fighting Friends
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