July 9, 2012

We got to the pediatric day floor around 10:30 to do chemo today. Because it is such a busy week, we didn't have a room; instead we grabbed the only available couch in front of the nurses station. With three other families around us, we got Clayton going with some hydration, pre-meded him with some nausea meds and then waited on the chemo. We were right between the "everything" rooms for the day hospital and the much smaller wing of rooms for antibody treatment. Doctors, nurses, parents and kids were all criss-crossing the hall in front of us going from one wing to the next or from the day clinic to the day hospital and back again. There was so much going on; so many different stories playing out as we sat there with Clayton's IV pump pushing "poison" in his veins once again. The whole scene was surreal. We've been there many times, but that was the first time we have been treated on that side of the day hospital; we usually stay on the clinic side. It's the difference between kids who appear to generally feel fine verses kids who are nauseas, trying to sleep and like Clayton all seem to want to hide under a blanket.
In the midst of it all, Clayton is just as happy as he can be. Standing on the couch laughing and pointing at things. When a nurse would come to mess with him he would fuss for a minute then find refuge under the covers for a bit before coming back out to check on things. Even when he started the chemo, it didn't phase him. He was so happy it almost made us forget where we were. Things seemed normal...well maybe not normal, but they seemed to be running smoothly.
Then the alarms from a nearby room started going off. They only lasted maybe 20 seconds. But for the next ten minutes, doctors and nurses were coming from every direction. It happened very quick. The alarm went off, a nurse hollered she needed help, at first no one ran, instead they seemed confused, then they started to get respiratory supplies, shortly after someone went whizzing by with a respiratory cart of some sort; from there people just started flooding in the room. Nurses, parents and even doctors were left in the hall in front of us, all wondering what had happened. We could hear nurses asking if the rapid response team had been paged. Nurse practitioners, respiratory therapists, surgeons, doctors we've never seen, all made up a steady stream of people going by us. After twenty minutes or so people slowly went back to what they were doing and the patient was taken somewhere else. I still have no idea what happened, but it was obviously serious and unexpected.
My first thought when I realized something was going on -apart from "what's happening"- was, "just when you start to feel safe...". We can't just have a good day or a nice break at home. Alarms will sound or I'll learn about a little girl that lost her battle or something will happen to snap us back to reality. Clayton was just so happy and then that and my mind is off with a million thoughts swirling through my head. It's a cruel reminder for all the parents that witnessed it that when going through this process something could happen anywhere along the way.
Just the other day, I read about a boy who beat neuroblastoma just to develop secondary leukemia from the chemo. He had to then undergo a bone bone marrow transplant with marrow from a donor and while his cells were engrafting, he silently passed away in the night. Sadly, his organs failed his little body. His father woke to find his son surrounded by doctors and within minutes the doctors called the time of death. Everyone was shocked, he was doing so good, no one saw it coming. Can you imagine being that father? You tell your child "I love you" and "goodnight" and you wake to find doctors trying to resuscitate him. All this time y'all have been fighting this horrible disease and that is how it ends; when everything seemed fine! Maybe it's better that way; peaceful. Wait. No. There is no "better way" to lose a child. It is frightening that as quickly as this nightmare can begin it can end and a parent can then be forced to live another nightmare; life without the thing most dear to them. You never get use to that and every time you get relief from it, some awful reminder is just lurking around the corner. Learning to expect the unexpected is part of living in this world. Yet, you are somehow never quite prepared. It was particularly eerie that when we were checking in with the neuroblastoma nurse practitioner today, I saw that little boy's bracelet sitting on top of the desk; right on top of Clayton's papers. You know, the rubber bracelets kind of like Clayton's gold one.
As we sat there today, I even found myself content to ignore the fact that we were right beside the wing designated for antibody treatment. I didn't think too much about it. After the craziness though, I found myself straining my ears to hear whatever I could. It's like I feel as though the more I know about everything the better I can prepare or control the outcome; that of course is an illusion. I have no control; if I did, we wouldn't be here.
It is just so insane to think that at 3, 26 and 30 our family is going through this. And tomorrow begins radiation...

Oh, and throughout all of this, George was out of his mind on cold medicine...I mean LOOPY...