I wrote this last week while we were in the hospital but I couldn't get it to post from my cell phone.
It seems like every day my showers get longer and longer. I use to be in and out in under 10 minutes but now it seems like I can't get under 30. This has turned into my crying time. There are some days I don't even get in the shower for fear of letting that first tear fall and not being able to stop. I cry so many different types of tears. I cry angry and sad tears because we can't seem to catch a break. I cry self pity tears because why does this have to happen to me? I cry happy tears because of all the generosity of people. I cry humbled tears because, as much as I yell at God, I know Heavenly Father has not abandoned me or my family. I see his hands and grace in my life everyday. As I'm crying I try desperately to regain my bravery to face the world again before the water runs cold. I hate crying in front of people because then I get the never ending questions. When people ask how we're doing I don't know how to answer. Do I bare my soul to them and break down? Or do I lie and say we're great? Do they really want to long, horrible answer? Or are they just trying to show they're thinking of us?
This week has been awful! Brylee started having a really high fever of almost a 103. I took her to the local ER. The nurses and doctors had no idea what a DIPG was so I bawled in the ER explaining it to them so she could get the best possible care. At one point I even had to go home and get a port needle so they could access her because they didn't have one at the hospital.
Monday her fever got even higher at 103.4. This time we took her to the oncology clinic at Primary Children's. They gave her IV antibiotics and sent us home. We hung out at my mom's house for fear of having to go back to Primary's. We postponed our Florida trip too. There's no point in taking Bree if she's going to be miserable and not feeling well.
Tuesday we took her back into Primary's with the same fever. They admitted us because they had no idea what was causing the fevers.
Wednesday they ran a million labs looking for some kind of infection and found nothing so they discharged us and sent us home. Once again we went to my mom's for fear of having to come back. That night her fever spiked to 105! She continued to spike at 105 all day Thursday, only coming down to about 101 with Tylenol and Advil.
Thursday night she went to bed at 7:30pm and slept till 2pm Friday afternoon. I called clinic in a panic. They told me to bring her in and they admitted her. We are currently still here. They still have not found anything. But her blood counts were low so they have her a unit if blood. They are blaming her sleepiness on the low blood counts. Her fever has come down to about 100.8 which is good. But I'm so frustrated with no answers!
I'm so sad that we missed Florida! The kids were so excited to go. Maybe in a few weeks we can go.