Wednesday, January 13, 2010

March 3, 2009 Aria, it's all good

March 3, 2009
Subject: Aria: It’s all good

Aria had a lab check today. We simply wanted to know what her counts were in order to determine whether we dial up or down her medication or keep things as they are. I have a suspicion that this will be our course for the remaining year or so of her treatment. I've probably eluded to this and to you it is more than likely already obvious but it's funny, I'm just now accepting it. It's as if I'm finally able to wrap my head around this being our reality. However, trust me when I say going into clinic once a month for a lab check and once a month for chemo is FINE with me!

Clinic was actually fun today. This is a real first. There were 3 families I was delighted to see, all of who have children with ALL. 2 of the 3 families are well into maintenance treatment like Aria. One little girl will be done with her treatment sometime around October. Life for them seems very normal now. That is, she is going to school full time. If you were to look at her you would never know what she has been through and continues to go through. There is nothing about her that even whispers, "cancer". I haven't seen her in a long time. It has been so long that her mom had another baby just a few weeks ago and he was sleeping peacefully in the playroom. I looked at them as epitomizing life restored and full of hope and promise. The mother and I spoke at length about those early months and how grueling and emotionally difficult they are. We spoke of a few children we both knew who had died this past year. We exchanged sobering glances and both acknowledged how blessed and lucky we feel.

Another one of the little girls, who just turned 3 and is finally in maintenance, is beginning to emerge from the level of treatment that made her appear so ill. I know that appearance very well and it is a bitter reminder that I learned to swallow every day while trying to find some inherent sweetness. This little girl looks and feels marvelous. Her mother told me with absolute radiance that they are doing well. Her smile was enormous and although our exchange was brief, I could feel her relief and her joy. It was wonderful.

The third family we encountered is a family I have written about a few times. Their daughter is also nearly 3 and they are still rather new to the process. In fact, they are in the middle of the hardest part. Her mother told me that her daughter's ANC had tanked and that they were planning on being admitted. How I remember those days like it was yesterday. Life is completely on hold virtually every single moment of every single day is suspended. It is almost impossible to imagine that there's an end-- that there's some real goodness waiting-- that there's true healing out there. What makes it even more peculiar is that her daughter looked fabulous! She was playful and sunny. There was no outward hint whatsoever that she would need to be admitted. This kind of disconnect is something I wrestled with constantly. I don't think I've got it nailed down yet. This mother is someone I like immensely. I brought her extra copies of MaryJanesFarm magazine, for which she was so grateful. I just wanted to give her a beautiful and gentle reminder that there is a lighter aspect to this process. They aren't there yet, but they will be. I reminded her that come Autumn, we'll be talking yarn and cider. She gave a hearty sigh and I'm certain didn't fully believe me but enjoyed the dose of hope nevertheless. I also gave her a very frilly lacey hankie and told her, "Sometimes you just gotta cry into something pretty!" She burst out laughing and we exchanged knowing.

Aria's ANC was 2170 today. Her hematocrit was 33.5! She's just doing GREAT. Her ANC is too high but I was reassured that it wasn't anything to worry about. We aren't going to up her medication yet. We'll give her another 2 weeks and if her ANC is the same, we'll dial her up and if it comes down then we'll leave it. This is the game. This is where we're at and I have to tell you, it is good, good, good!

The snow is melting. The sun is shining. The first flowers, snowdrops, have bloomed. Spring is Life's representative that rebirth is not only possible but visible and tangible. I see the hope that partners itself so intimately with Spring's design. I can almost taste it and I can certainly smell it and hear it. As we turn closer to the sun with lengthening days and rays uninhibited by cloudy formations, I feel so much lighter riding on the promise of this gift that was only a few months ago completely entombed and beyond reach. I face once again the light and beauty of hope and the promise of yet another day. ~j

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