Tuesday, May 26, 2009

Aria the Warrior!

I wrote this email to give friends and family an update of Aria’s second spinal tap procedure since leaving the hospital and becoming out-patients. Aria was just beginning to show significant signs of the steroids and we were beginning to understand the routine and life of the out-patient world. Every aspect of what we experienced felt so intense that lighter moments were equally intense in their healing restorative power. For a long time I remember feeling like I was swinging from one side of intensity to the other all the while wanting to find some middle ground. That would escape me for some time.

Fri, 1 Feb 2008
Quick Aria Update

Fridays are outpatient clinic days. I was relieved that we were going to clinic today. I was worried about how Aria had been feeling. The diarrhea was especially worrisome to me and I was mentally prepared to hear that she would need to be admitted. I simply didn’t know what to expect so I tried to imagine the worst and prepare for that. This produces a lot of unnecessary anxiety I’m afraid, but it is something I do anyway.

Doc said something to me the other day that was really helpful. He reminded me that I have no experience taking care of really sick patients; people who are in the hospital, truly fighting for their lives. This, he reminded me, is not Aria. Yes, she is dealing with some significant side effects but right now, at least, they are manageable. This realization was such a relief.

Aria woke up this morning miserable. Her tummy was churning and she was hungry. What's worse is that she was reminded that she wouldn't be able to eat. Obviously, this made her even hungrier. We continually told her that her (pathetic) choices included water, apple juice and jell-o. "Yuck, yuck yuck!" was her response. Doc and I felt great compassion for her all day. It was hard. Poor thing. She was pale, hungry, grumpy, probably a little scared and fed up. So, off we went to the outpatient clinic!

We arrived promptly at 11am and had her vitals taken; weight, height, pulse, blood pressure and so forth. All was good. Her blood pressure was a little low but her heart rate was just fine. She stayed in Doc's arms the entire time. "Oh, my tummy says it is soooooooo hungry!" was the whimpered cry she repeated over and over again. Her port was accessed so labs could be drawn and then we waited. The waiting area/playroom was packed with parents, patients and siblings. There was a music therapy professional there so drums were played, a guitar and so forth. It was festive and fun. Aria was in no mood for any of it. Doc was sitting in a glider rocking chair, while Aria was sitting on his lap facing him. Her knees were bent on his lap as well as her head, which she basically buried in his chest. There she remained and even managed to nap a little until her procedure around 130 pm. Our oncologist spent some time with us going over the lab results, which showed that all of her counts continue to decrease but there’s nothing alarming at this point. Still no need for a blood transfusion yet and she spent time trying to figure out why Aria was having issues with diarrhea and stomach upset that wasn't like nausea.

We had a great conversation and I felt completely reassured. In her eyes, Aria was doing well. She is responding very well to treatment; her first bone marrow biopsy revealed 94% leukemia cells and after a week's worth of treatment her second bone marrow biopsy showed a drop in leukemia cells to 18%. Clearly, the diarrhea is not good and could be a little infection she's dealing with or the antibiotics but overall, she seemed pleased with how things were going. Aria went to the procedure room with Doc while Reo, Rianna and I went to the waiting/play area again.

About an hour or so later, Doc came in letting us know that Aria did great but she was FAMISHED! It was almost 3pm and she hadn't eaten anything since dinner time the day before! So she chowed on all the food we brought. She was perky and so happy to finally be able to eat. It was so nice to see her cheerful. Her stomach was still churning and upset but things were good. She also made a special request for an ice cream cone at McDonald's.

We had an x-ray of her abdomen done and we were on our way. We arrived home around 5pm. Aria had a nice dinner and was ok this evening. Her tummy was upset but she didn't have any diarrhea. We may be in for a long night so keep your fingers crossed that she sleeps well. She had good spirits for the most part. It really is up and down. One minute she's telling stories and laughing a little, the next minute she has her hands to her mouth pouting and about to cry.

I did have a moment to ask her something though. While we were in the hospital, the kids have posters made that are placed on their doors so people walking by can glance at them and learn a little something about them. I had made a very glittery one for Aria and on it I wrote in the "Special Information about Me section"
"I have the soul of a fairy but the spirit of a Warrior!"

So tonight I asked her if she knew what 'to be a warrior' meant. She shook her head "no."
I told her, "A warrior is someone who is smart and brave and willing to fight..."
She cut me off and exclaimed, "I'm not afraid of Dragons! I'm not afraid of dragons OR monsters! (pause...inside I'm cracking up!) I'm not afraid of ANYTHING!"
"Aria that is why you are a warrior!" I told her.
This is our warrior! ~j

This photograph was taken in September 2007 in Liberty Kansas while visiting family.

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