I really can't believe Jaylie has made it all the way to the very end of treatment without a fever. She went through 5 rounds of chemo that knocked her counts and immune system down to nothing and didn't get fever. Now on her 6th and final round she got one. I hate that she has one but I am so thankful this has been her only one. A lot of kids I know get fevers almost every round. It's very normal and I was actually expecting Jaylie to have them more. Before all her treatments started her oncologist said to prepare to be in the hospital with fevers about half the time. Some kids are in here more, some kids are in here less. I was prepared for the worst, thankfully I didn't need to be.
Anyways, I took Jaylies temp today and was pretty surprised she had one because she hadn't had one before. We have to come up to the hospital if it's 100.5 or more, so we are here at the hospital now. It's our first time staying on 4 north and not getting chemo. It was also the first time she got her port accessed outside the cancer clinic. She didn't do too well with that. I forgot to put the emla cream on that makes it numb for when the needle goes in. They had to put it on her here in the hospital and they use a sticky window to go over the top of it, at home I use ceran wrap bc it stays on but doesn't hurt to pull it off. She hates this sticky stuff! It's been her worst thing through all she's been through. She was not happy when they used that and then had to take it off 30 minutes later to poke her. Then they use a much larger sticky window to go on top of her accessed port to keep it germ free and protected. Karen, her nurse at the clinic, knows how much Jaylie hates getting the window off so she uses a small one over her port. Jaylie has never had the large one so she was not happy once again when they used that. She asked for the little one but they wouldn't do it. Hopefully it won't be too bad to get off, I know she will be scared to death about it though. She is doing really well though and is feeling good. They gave her Tylenol and her temp has gone down. They are testing her blood and it could take up to 3 days to get the blood cultures back. Hopefully it's not an infection, we are guessing not because she has no other symptoms. They put her on broad spectrum antibiotics and we will have to stay here until she is fever free for 24 hours. Who knows how long that will be. They haven't come back with the results of her labs yet so I'm not sure
what her exact counts are but I know her ANC is low so she doesn't have
an immune system. Hopefully she won't have fever in the morning and we can go home soon, but we could be here a while. She is sleeping peacefully now and it will be nice to not have to wake up every 2 hours to have her pee like we do for chemo.
Looking back at the day, I am not surprised Jaylie had a fever. She was horrible today, so fussy and grouchy. She was mean and just wanted to be alone. I tried having a lot of patience with her because I knew she wasn't feeling good bc her counts are low but it was hard. She usually just lays around and rests and wants to be close to me or on my lap, but today she was just mean. She was mean to Breklyn too and she usually loves her. She was just not herself today. She even told me and Breklyn that she wanted Breklyn to go away and not come back. It was sad. She had lots of alone time per her request. I know she doesn't feel good so I don't blame her. She was much nicer to me tonight though. She is usually such an angel. I love her so much. I am so thankful I am her mom, she's the best little girl anyone could ever ask for.
I will keep you posted on how Jaylie is doing.
Thank you for your prayers!
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