Sunday, January 31, 2010

Aria Came Home!!!

Those Lazy Days of Summer!!!

August 1, 2009
Subject: Aria came home!

For the first time ever, Aria went to the ER with a fever and didn't have to be admitted! They accessed her port and drew some labs, which revealed a spike in her white blood cell count, which is nothing more than a healthy indication that her body is fighting an infection. This also meant a decent ANC so no need for an admit, YET. That's the key word folks. In the ER they gave her a broad spectrum IV antibiotic and talked to Dr. Trobaugh, who was on call last night. It is Dr. Trobaugh's belief that in a matter of days, her counts may tank. So, she stopped her chemo for the time being in preparation. She firmly believes that this is a result of the swimmer's ear bacterial infection that Aria is currently trying to fight off. If she continues with the chemo, Aria will definitely become more immuno-suppressed with tanking counts. By stopping the chemo for a few days we may be able to avoid that altogether, but it is a wait and see game. When Aria came home (nearly 4 hours later), her fever was gone and she slept through the night staying nice and cool. Naturally we were checking her constantly. If she should spike a fever again, then we'll take her back to the ER and she'll more than likely be admitted.

I think we're in a new phase. I've heard of people going to the ER for fevers and not having to be admitted and I've always wondered what that would be like. Now I’ve had a taste of it and I have to admit it is nice! That may strike you as being a little odd. Of course, it is wonderful having Aria at home versus in the hospital, but let me tell you, there's a great sense of comfort at the hospital. Those nurses and doctors know how to take care of my Aria and they do it in a way that is so gentle, efficient and caring. It is also very nice.

Being at home, we're on a bed of pins and needles. "Is she going to spike a fever? When? Does she look warm? Aria, are you feeling ok? We better not go anywhere or do anything just in case." It is a halting kind of existence. When we're in the hospital, at least we know we aren't going anywhere. At least we know what we're dealing with. At home, there is tremendous comfort but there is also a sea of unknown surrounding us. Do I let her go outside and play? Do I let her go swimming? Should I take her out in public? Should I just sit with her on the couch all day and watch her waiting for something to happen? Do I treat her as if nothing has happened since she doesn't have a fever right now and everything seems ok, knowing full well that there may be something brewing again? This is an emotional tug of war that I don't enjoy at all.

This morning Aria was whimpering at the top of the stairs complaining that her tummy hurt and that she felt 'throw-uppy'. You can imagine the tale-spin this created. So naturally, I put her on our bed and she felt warm. I prepared to take her temperature, which is normal and I gave her the morning medicines. It is a matter of monitoring her. It is a matter of not being able to let my guard down. It is a matter of spending a very hot day in a weird sort of red alert.

It is worth mentioning here that this fever came as a complete shock yesterday. I told you already that she had a great day and there was never an indication that something was brewing and that a fever was about to happen followed by another ER visit. I'm so thankful my Goddesses were and still are here to bear witness to the fact that things really can and do change in a matter of minutes and this, my friends, is what is so absolutely unsettling. I'll never get used to it. I try. I tell myself that we know this routine. I try to convince myself that everything is fine. I try to find a light place that rings with a sort of sing-songy "here we go again!" But the truth of the matter is that it is always an emergency. It is always frighteningly dreadful. I'm always left with this horrid feeling as if I've been standing still and suddenly shoved from behind with the wind knocked out me while I try to pick myself up off the ground.

My dear Goddesses stood back watching us spring into action, preparing over-night bags, talking to the kids, getting Aria dressed, calling the clinic with a sort of stunned fascination. There was nothing they could do but watch and process their own reactions to the situation. It was almost impossible for them to understand that literally one minute Aria was swimming playfully in the pool and then the next lying on the couch with a temperature. There was no indication of anything happening in between those moments. This is a glaring reminder of the illusion of control. There is no preparation for this kind of thing sometimes and that is a leathery lesson to learn.

Back in the moment, this moment and this now, Aria is feeling better. She is enjoying her morning cartoons and is cheerful. We shall see what the day brings. Indeed there is a great deal of strength from hearing Ewan McGregor’s "come what may" crooning in my ear once again. It will be what it is and I will be equal to it. This is the way of the warrior. This is the way of Aria and it is my privilege and honor to be by her side. ~j

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