This is how our morning began after spending a few days feeling very anxious about Aria. Looking back, I think part of our anxiety was simply our inexperience and as strange as this may sound, that was a good thing. You see, Aria has not had to be admitted to the hospital very often compared to a lot of other kids. Compared to kids without cancer, multiple hospitalizations are absolutely unheard of, but in the world of cancer, hospital stays are simply a part of life. This was Aria’s 4th hospital stay since she was diagnosed, which is minimal and to some laughable. Many families feel like they are in some kind of revolving door the first year of treatment, so upon reflection, I realize how lucky we’ve been. Regardless, the uneasiness you may sense from reading what follows reflects not only our limited exposure to the inpatient oncology world but how one never really gets used to it no matter how often it happens. That’s yet another bitter bite to swallow at the table of cancer.
October 4, 2008
Subject: Off to the ER and an Admission.
101.8 is Aria’s temperature. We're off. If her counts are above 500 we won't have to stay. If they are below we will. We're packed and ready to go. Aria is in tears. "I'm scared." She understands that this is big. Poor thing. Please keep her close! Will let you know more soon. I sense each and every one of you! ~j
Everything went very smoothly today. By the time we reached the ER her temperature was normal, which is great. Her port was accessed and what seemed like liters and liters of blood was drawn. I was amazed at the number of vials I saw. I didn't count them but there were a lot! We met with the ER doctor, who was wonderful. He asked specifically about her cough and we told him that it was productive and certainly upper respiratory; typical cold type stuff. He mentioned that she had a little fluid in her right ear. It wasn't inflamed but could be the beginning of an ear infection, which would be her first. He took a listen to her chest and wanted to order a chest x-ray just to make sure. This is when my mind started racing and I mean really racing. "What's up with the chest x-ray? That can't be good." Naturally, I turned to Doc who reassured me that it was pretty typical 'better-safe-than-sorry' kind of stuff. We all went to the x-ray area together, which was actually pretty cool. I had never seen anything like that before. Images of "Mike TV" from the original Willy Wonka movie started swirling through my head. Aria was standing on a small stool in front of a square shaped bull's eye type thing. They took one x-ray and the image immediately appeared on a computer screen that was beside me. What I saw was that her right lung looked like what I had seen in pictures. What struck me was that it was all the same color. The left lung looked different. It had the right shape, but there was this edge along the bottom, like a wispy cloud that was much lighter. I noticed that I immediately began to panic a little. The second image was taken and this was a side view. I couldn't make heads or tails of that one at all. As we were readying to leave, I shot Doc this pleading look as if to say, “Did you see that? ! What the heck does it mean?" He was not reading the look at all but he was trying to be reassuring. I finally asked him, "Doc did you see that first image? Did you notice how her lung look different and kind of had that lighter look?" Doc said that he had seen it for only a split second and didn't think he saw anything. I mentioned that it looked weird to me and before I allowed myself to go into full panic mode I caught myself and said out loud, "Ok, so now I'm a Radiologist and I can read x-rays?" Oh my God, is there no end to my absurdity? Doc smiled and gently agreed with me. That is, we both gently encouraged me to shut up! We went back to our room and waited.
Just a short while later our nurse let us know that we were being admitted. She didn't know the numbers exactly but apparently the ER doctor and the oncology doctor on call decided to go ahead and admit us. She also mentioned that the ER doctor was going to come in and talk to us. Uh-oh. He came in a few minutes later and had a completely different look about him. I was so sick to my stomach by this point. He started with, "Well, there are some unusual numbers here." I immediately went to, "Oh my God! Her leukemia is back!" I can feel the tears start to build. He shows us her white blood cell count, which tanked and mentioned that she has an ANC of only 35! That's it? I was starting to relax. He also mentioned that there's something on the x-ray, could be fluid, could be typical virus stuff, not quite sure yet. They aren't willing to call it pneumonia but....."I'm sorry did someone say, pneumonia?" "wwwrrrriiiiinnnnggg!" Oh man, there goes my stomach beach towel again! I hadn't had that sensation for a really long time. They started her on a big gun full spectrum antibiotic and he was very reassuring. He mentioned that the approach they're taking with the antibiotic is the right one. Doc was so gracious to say, "You know, Julia saw something on the x-ray! She did. She said she saw something funny." How do you like that? I'm a Radiologist afterall!!!
We went up to the familiar oncology ward and were greeted by several old friends. It was so nice to hear, "Wow, we haven't seen you guys in forever!" We spent a good while on just admit type information and settling in. We were able to get some food and watch a movie. Aria was very comfortable and very much at ease. As I was getting ready to leave I asked Doc about Aria possibly having pneumonia. This is very hard to consider. He told me that pneumonia was not the reason for her admit, but it is still yetto be determined. He then said something like, "Whatever it is, it is serious, otherwise we wouldn't be here." That was one of those wonderful and dreadful things to hear. His parting words were, "We're in the right place." And so we are.
I'm tired. It has been a stressful few days. I'm desperately trying not to second guess myself.
“ Should I have had her labs drawn on Thursday? Should I have blown off grocery shopping on Thursday and not exposed her to whatever was there? Should I have taken her to the ER on Friday when things were so 'if-y'? I suppose the really hard thing about this is that she had a stupid little cold. A stupid little cold that Reo, Rianna and I all had and still sort of have. I know that for her it is more serious. I know it but I have to admit that I'm still realizing just how serious it is. A stupid little cold for Aria is not a stupid little cold. A sniffle for her is something bigger and something much worse. This is really hard. I'm reminded once again that I'm not allowed to let my guard down. I can't look at her the same way I look at the other kids. She's very different. If this turns into a full- blown pneumonia, I can guarantee you that my heart will be broken and I will struggle with feeling like I failed somehow. Perhaps that doesn't sound very rational to you but when I look back at these past few days I realize that maybe I should have acted with more commitment. I don't know, maybe I'm just searching for what I could have done differently to avoid this. Maybe there's nothing but maybe there's something. I tell you this has taught me to kick my vigilance up just another notch. It is all so breathless and hard to digest.
Doc said, "In the big picture this is just a little blip along the way but in this moment it feels huge." It does. It feels big. I feel vulnerable and I feel so, so helpless for Aria. I feel so sad for her, just - so sad for her. How she is spending this part of her childhood is so cruel. I'm reminded that although I've pieced together my broken heart, it is more than a little fragile. I realize once again that the world I knew has been shattered and I am learning to walk among the shards. ~j
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