My last blog posted about what an awful week that week of October always is. Well apparently I posted it a day too soon. It did not get better. It got worse. Much worse. Saturday Bella was running 99.9 all day. At one point it reached the magic number 100.4, plus some vomiting as well as diarrhea. I called the on call number, BUT busy signal. And busy signal and more busy signals. 3 hours of trying, I decided to give up. Gabbi had been sick and Bella's fever wasn't going any higher so I decided to wait it out. Sunday went well. Fever was all but gone until around 3. Bam 100.5. I called and talked to the on call doc and decided we might as well come in because we didn't want to end up in the ER in the middle of night possibly catching something else. In we went. Luckily Grandma was on her way and was able to stay with Gabbi so that Leo and I could go to the hospital. 2 days of the hospital and a blood transfusion later, we were on our way home. All cultures came back negative and no more fevers. Leo left for Idaho and I packed up.
Now I'm not gonna lie, for some reason I had an awful feeling driving home. Bella was tired and even fell asleep on me before we went home. And was already asleep in the car not even 10 mins into the drive. I pull in the driveway shortly later where Bella is still sleeping. Grandma takes her and says she feels warm. We check her temp. 102.9. I'm already freaking out. We just got home. Just left the hospital. What the heck do you mean she has a fever. I call. They call me back. They tell me to give her one dose of Tylenol and to recheck in an hour. An hour later still at 101. I call back. This time I talk to our nurse. She says what do you mean it's at 101? Last time you called they told me it was only 100.3. Um no more like a 103. Well that of course changes things. She calls the doc. She calls me back. They want us to come back in but they don't have a bed for us yet. The charge nurse is gonna call me when it's time for us to come in. 35 mins later we are on our way back in. Bella is freaking out. She doesn't want to leave grandma and go back to the hospital. We get the same room, they re-access her port and start antibiotics. Of course now the fever is gone.
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| ~Playing in the playroom~ |
Sometimes I forget that everyone doesn't understand our cancer language. Whenever someone with an immune compromised system that has a central line (port) gets a fever it is imperative that they start antibiotics right away. Many things including septic shock can happen in a matter of hours. We knew Bella's ANC was low a very low 10 so going home wasn't really an option. And I really thought for sure we were gonna have another positive blood culture, but we got lucky. They all came back negative and she never got another fever. But since her ANC wasn't rising, we weren't going home. Being in a hospital is so draining. I have no idea how I handled 26 straight days with only 2 small breaks. You are stuck in this little room with little to nothing to do but yet you still don't find time to do anything else. Maybe if Bella was older it may be a little easier. But she is young and scared and if I try to do anything without her, she cries and cries and cries. All my energy is spent on her. Not that I would have it any other way, but it is hard. And at times I feel torn. Poor Gabbi. Just getting over being sick and all she wants me to do is hold her and spend time with her. But I can't. Bella will have none of that. I'm her mommy and she does not share when she is in the hospital. Did I mention sleeping? Oh I didn't? That's because there is NO sleep. Even when there is nothing going on I still couldn't sleep. I told you my life is consumed by cancer. I find myself lying in bed thinking of questions to ask the doctor the next morning. Even if it doesn't pertain to Bella per-say, I still have to know everything about it.
Friday arrives and we get to go home. Woo hoo. Though her ANC is still super low. Well 0 actually. But her other numbers have gone up and he thinks she is now at a much less risk for infection. I'm not gonna lie. I am super nervous going home. 3 days fever free but you know what happened last time. The evening went off without a hitch. No fever, she was eating, all was good. Not until the next day around 5 her temperature started to rise. I was at a Scentsy party for Bella and Leo said her temp was 100.2. When I got home 20 mins later and re-checked it had already risen to 101.2. A quick call to the doctor confirmed what I already knew, we had to come back in. But this time we were going to the ER. This is our first time back since her diagnosis. Surprisingly it went off without a hitch and we got to go home after she got some antibiotics. Next appointment is on Monday for counts check and then hopefully getting her bone marrow aspiration done on tuesday and also beginning her next phase of treatment. When this phase begins, we have a total of 2 years left of treatment. Now all we need is an all clear REMISSION! Hopefully this week we will finally have this long awaited answer.
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| Finally home from the ER |
"Because of the Lord's great love we are not consumed, for his compassionate never fail." ~ Lamentations 3:22
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| ~Bowling to pass the time~ |
On a side note: I know that everyone is concerned and wants to speak with me but I need everyone to be patient. I am not up to talking to people. All of my energy is spent on my children and my husband. If I don't answer your calls or call you back it does not mean that I do not love all of you. It means that I am currently making memories with my children, one of which has a life threatening disease. Please try and remember this! Thanks again to everyone who is here supporting us.
praying for your little girl!!! stay strong mama!
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