Saturday, September 12, 2009

Aria is Coming HOME!!!!

Aria as a Warrior (Kansas 2007)

Aria and Reo running through Joyce's field (Kansas 2007)

Aunt Joyce's pond

Fishing with Dad at Aunt Joyce's pond (Kansas 2007)

December 5, 2008
Subject: Aria is Coming HOME!!!

YaHOOO!!! Yesterday Aria's ANC had dropped to 128 and Dr. Trobaugh really preferred that we stay another day but was willing to let us go home with some antibiotics if we really, really, wanted to. We decided to stay another day. Aria's spirits are high. She's feeling super well and she's full of the dickens. She was getting mighty bored and starting to be a real crank-pot so I'm thrilled that she's coming home. I'll be weaning her from the TV and getting her into some other things, namely writing her letter to Santa!

Speaking of letters...Aria received 28 cards yesterday! My Oh My! It was the most wonderful thing and I thank each of you for sending them! If you happened to send her one today, not to worry, they'll save them and we'll get them the next time we come into clinic, which will more than likely be next week. Really and truly, it meant the world to Aria to receive these cards and not only that but it meant the world to me. I'll never be able to fully express the way they energized me. It helps so much to receive little notes like this from time to time. It is the very thing that I draw from to keep me going. Sometimes my own reserves are so depleted that I can lean upon you to pick up the slack a little so that I can restore myself and continue on. This is so long and drawn out in many ways and it's hard to feel like there's anything 'normal' about it. We haven't had long, periods of time without something to do related to cancer so we' haven’t been able to let our guard down. Instead, we've been on a two week course that has been up and down, here and there, this way and that so it is no wonder that it doesn't seem normal. I can't grasp it. I can't wrap my hands around the process and know that this is the way it's going to be for a while. I can't find anything really tangible yet. In some ways it has been a wonderful lesson in the ‘simple living of day to day.’ Dr. Trobaugh assures me that I will someday in the course of the next 16 months, but she also knows and says, "But then again, maybe not." We laugh about this reality because it’s the only thing apart from crying that we can do. I've learned that I reserve my tears for other things.

I am so very thankful that you heard my call to send cards and that you answered in such an overwhelming way! It isn't easy, despite what you might think; to reach out that way, to be vulnerable, to ask for help, to admit burn-out and boredom. I know it is so obvious but emotionally these are things are typically guarded and protected. When they are revealed, it leaves me feeling cold and a little scared. I'm learning, however, to take that deep breathe, to trust in Love, to reach out honestly and to let others carry the load for a while. It is a humbling experience mixed within a vast array of humbling experiences. This one just happens to be extraordinarily personal. I thank you for you love, your friendship, your consideration, your concern, your prayers and thoughts, your time, your listening ears and reading eyes, your strength, your creativity, your presence, and most of all your willingness to be with me.

I have much more to write about, particularly yesterday. I visited the mother whose daughter is dying down the hall from Aria. I saw her. I talked to her. I hugged her. I cried with her. I touched her daughter. I said good-bye. It was an honor to be there at this stage of their journey. It was very hard and I'm convinced it was absolutely the right thing to do. She and her daughter deserve a separate writing, one where I can sit with my thoughts of only them. I'll be formulating that today and then I'll sit and I'll write.

Until then, I'm tidying up for Aria's arrival home, which should be in the next hour or so! I am so thrilled I can hardly contain myself. My spirit is soaring with Life! ~j

December 9, 2008
Subject: Aria’s counts

I just wanted to send a quick word to let you know that Aria is doing so well. She had a finger poke yesterday 12/8/08 and her ANC was 1024. Just the Friday before it was 228. I think this is just extraordinary. Her hematocrit was 32 and everything else was near normal. I mention her hematocrit not because I really understand it as anything other than a gauge that let's me know how much energy I can expect her to have. Normal is somewhere around 35 and Dr. Trobaugh has said that if she ever had a hematocrit that hovered around 28 as Aria's does so often, she'd never get out of bed! With a hematocrit of 32 Aria is perfectly normal in terms of her energy and spirit. She was able to return to school today and had a wonderful day. She is, unfortunately, dealing with the weaning process of less movie time now that we are home. She is allowed only 1 movie on school days. Reo isn't allowed any television during the week and they are allowed movie time on the weekends. It is a dramatic change from the hospital, so it is no surprise she doesn't like it. Today, she lost her movie privilege altogether because she's beginning to show some spoiled sort of ungrateful,l entitled nonsense that I have next to no tolerance for. I understand completely that she is also only 5 years old, but I tell you, the temptation to indulge this child in her every whim because of what she has to go through is so very enticing. It isn't the right thing to do to my mind and so I don't. She is indulged plenty, but a balance has to be struck and some mighty hard lines and clear boundaries have to be made. I tell you what, sometimes I feel like bitch-mom #1 because I have to lay the law so often but it is what it is. Funny thing about kids, as you all well know, if you can only endure the length of their tantrum, they move on rather quickly. Aria and I had a wonderful afternoon writing her letter to Santa. We played. We snacked. We talked. It was wonderful and I don't think she missed her movie much. She assured me later in the day, "Mom I've worked on my attitude!" I’m very proud of her.

Aria is back on her daily chemotherapy at 1/2 dosing and she is scheduled for another count check on Monday December 15, 2008. That check will determine if we dial up or down her chemo once again. She receives her big gun chemo on December 23, 2008. We're going to a Make-A-Wish Christmas party on Friday. The really wonderful thing about it is that oncology patients are scheduled for the first 2 hours and then all the other kids with various medical conditions can go. The oncology patients are separated because they are so immuno-compromised that anyone in attendance is expected to be in pristine health. I'm thrilled about it. I'm keeping Reo out of school that day so we can go and play and have fun. It will be a nice break for me too. I can let the kids go and play and be watched by someone else! HEAVEN!! Now if only there was a wine bar nearby and a designated driver!

I'll mention that we received still more cards at the clinic on Monday. So many thanks to you all!! Really, I feel completely inspired and re-energized. Thank you! Thank you! Thank you!

Last but not least, I'll mention that we just got word that Doc's beloved Aunt Joyce had a massive stroke today and is now in the hospital in Kansas. We don't know the full extent of her prognosis but I'm afraid the news is grave. Please keep her and Doc's entire family in your thoughts and prayers. The photograph of Aria as a warrior was taken at Aunt Joyce's pond in September of 2007. She is very, very dear to us. ~j

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