Aria's noggin

June 10, 2008
Subject: Aria’s noggin’

By Sunday afternoon, I couldn't take it anymore. The shedding was starting to get in Aria's nose and mouth. She and I played a wonderful game where she yanked out handfuls of her hair and made a wish, "I wish for poop!" and then sprinkled her hair on my head. It was so much fun! I told her though, "Aria, your hair is getting everywhere, let's go downstairs and cut it all off!" So, she and I proceeded to the kitchen where I fetched the clippers and I shaved her head. I won't lie to you. It was both heart-wrenching and adorable. I'm trying to find the happy middle ground, but I'm not sure there is one. She now epitomizes the face of cancer, which forces me to face it very consciously. There is no denying the reality, not that there ever was but having a full head of hair sort of masked it a little. Now that that is gone, her cancer is completely exposed for everyone and anyone to see. I'm very much aware of the ensuing stares and comments and I feel completely at peace. In fact, yesterday we went to the grocery store and I noticed a woman who nearly snapped her neck craning to continue her gawking assessment of Aria. It was so very innocent and I am certain full of wonder, curiosity, compassion and fear. Of the dozens of children we saw in the store, Aria was the only bald one so she is quite a spectacle. It is my job to be as open as possible. It is my job to invite people into our world whenever possible. It is my job to help people understand and lessen their fears a little. It is my job to empower Aria particularly now that she is so visibly different. We are equal to this task.

Aria is feeling really well. I'm actually stunned at how well she's feeling. Our Thursday clinic visit last week was exceptional. Her counts bumped back up to 464, which is wonderful and certainly way better than 60! Dr. Trobaugh told me that she'd probably feel crummy for a few days and then start to rebound. I'm seeing that now. She is gaining more strength and energy. Her spirits are soaring. She's full of laughter and joy. We are having a lot of fun right now. Dr. Trobaugh mentioned, "Julia, at this stage of this phase of treatment (delayed intensification) I have to say that Aria is doing exceptionally well. Most people say that the second half of this treatment is comparable to the first. So, if that's any indication, Aria ought to do well." You can imagine my relief. We have this entire week off and go back to clinic on Tuesday June 17th where we're actually scheduled for a hospital sleep-over. She will receive 3 new chemo medications and will have to be highly monitored. It is normally around a 36 hour stay. She'll also have a spinal tap that day. I'll mention that she's been taking a power antibiotic these last 10 days to stave off the horrible mouth sores that were threatening. So far, nothing has happened and we are so thrilled. She'll continue with that drug until Friday, but she doesn't have to take any chemo this week. It is so lovely for her!

I'm keeping her pretty secluded because her counts can fluctuate so dramatically. The weather has been so strange and that, too, is quite threatening. This morning (Tuesday June 10, 2008) it snowed! You read it right! It was 34 degrees and snowing! It could be 80 degrees tomorrow for all I know. That's how crazy the weather can be here this time of year. So, I'm keeping her warm and dry and away from people as much as I possibly can. This is our last week of school and I don't need to tell you how thrilled we all are! I'm looking forward to some quiet lazy kids enjoying the kids and the wonders of this farm! I'll add that in the second picture, you can see her port nice and clear. She's very proud of it and her scar!
My love to you! ~j