Thursday, May 28, 2009

Aria is stuck in NOODLES!

I received an overwhelming response after emailing this story. I don’t quite know what it was about it that tapped into the psyche of so many. I suppose the thing that comes to mind is that it is a pure example of something that makes you want to laugh and cry at the same time. Truly, we’ve had so many of these moments that are belly aching hilarious and simultaneously heart breaking. I’ve learned to recognize these paradoxes and even celebrate their co-existence. It is one of the many marvels witnessed along the journey through cancer.

Subject: Aria is stuck
Date: February 7, 2008 8:56:47 AM PST

I have had a rough 2 days. It is definitely a combination of variables: fatigue, parenting, steroids, boredom, sorrow, lack of control, and reflection to name just a few. Aria is doing extremely well. Her counts are back up and I think we are going to be able to bypass needing a blood transfusion at this time, which is no small matter. It is a very common procedure for kids with leukemia at this stage of the game, and it is the very rare case that a child wouldn’t need one. They are so sick and battling so hard that their bodies just can’t produce enough red blood cells to keep them up and active. Aria has skimmed by or so it seems and we are thrilled that she has had the reserves to do so. Just last Friday her count that determines a transfusion (hematocrit) was 19.6 (20 is our Doctor’s comfort level for a transfusion). However, Aria was doing so well; eating drinking, peeing, pooping, sleeping and so forth that she wanted to give Aria another few days to see if her body could hold its own. Tuesday we went back and had her labs drawn again and her hematocrit was back up to 23, which considering her situation is great. It is so obvious too in her level of energy and overall participation in life. She has spunky moments. She is talkative, voraciously hungry, and engaged. She is not playful so much and has no interest in doing many activities; things like playing with toys or drawing, painting and what not. She is definitely not herself, but she still has some spirit to her.
We are fast approaching the final week of the steroid and I finally understand what everyone warned me about in terms of its nasty presentation. I heard again and again that the steroid is “hard” and by far “the worst” part of the entire treatment. I heard things like, “I just want to have my kid back!” or “God, that was soooooo HARD!” But what I didn’t hear were the specifics. What exactly is hard? What does hard mean? What happened to the child that made him/her so different? Details, I needed details but didn’t hear about them. Our doctor told us about cravings, which I have mentioned here. Cravings for salty foods, which add to the fluid retention that can make their faces swollen and their bellies distended. I am seeing that now, by the way. But again, I questioned what did the cravings looks like? Sound like? Feel like?
I’ve had a rough 2 days because I have been mired in that very process. I can’t separate the fact that I have a 4 year old and all the behavior baggage that comes with that as well as having a 4 year old with leukemia and all that that dictates. I have always found 4 yrs to be a very tough parenting age; the kids have language, they know all my buttons and push them freely and frequently but they are still very young and thus irrational to some extent. My favorite story is when Reo lost his mind when I told him that he couldn’t put a booger he had just dug out of his nose on the dining room table. You would have thought I had just denied him his favorite all-time toy. He turned toward with madness in his eyes, the likes of which I had never seen and shouted a sustained “NO!!!!” His neck veins were bulging. His face was the color of a beefsteak tomato. He then began a tyrant’s type lecture, “Mama, I WILL put my booger on THAT TABLE!” If a neighbor wasn’t there to witness it, I sincerely doubt no one would have believed me. I was amazed to witness his reaction. Aria isn’t all that different at times, it is similar but add to this, steroid treatment and illness and a general feeling of the yuckies and the waters of life get a little more turbulent.
For the sake of my processing and my need to vent and document, allow me to try to explain the situation. I had mentioned that Aria is like a broken record. Imagine for a moment a skip in your record, or if records are before your time, a cd. Imagine a little blip in your favorite song; how about the popular “Fire and Rain” by James Taylor. “I’ve seen Fire and I’ve seen Ra.....I’ve seen Fire and I’ve seen Ra......I’ve seen Fire and I’ve seen Ra.....” over and over again. I would guess that no one can listen to a skip on their record or cd for more than a minute without going completely beserk! You know the feeling. It’s that weird stressed out feeling. That knee jerk reaction that forces you to skip the song or move the needle on the record player IMMEDIATELY! You have got to get that skip out of your head. Well, Aria is in “skip” mode galore. She is stuck and repeats one of her 2 mantras over and over ALL day long!

She began yesterday morning at 6 30 am with, “Mama, I’m starving for noodles!” I told her we’d have to cook some up right away. “I just love noodles!” she said. I got the pot going “I’m starving for noodles” I heard interrupting my thought. I replied, “I know honey, I’m cooking them for you.” As I was saying, I got the pot of water going and began putt “I love noodles..oooooh, I’m just starving for them!” “Aria, the water needs to boil and we’re cooking them. Hey do you want to color?” Aria sulks in her chair as if I’m denying her and being deliberately mean. So, I was puttering around, cleaning up the dish “I can hear the water bubbling! I’m soooooo hungry for my noodles!” “I know baby girl. They’re cooking as fast as they can.” I’m breathing dee “I just love noodles!” eeeeply. Doc comes into the kitchen to tell me what’s on his agenda for the day so I can have a “oooooh, my tummy is just so starving!” I stir the noodles and wonder why they aren’t cooking any faster! I can hear Aria sniffing the air, “I just love noodles!” So, anyway, Doc is trying to give me a “I need my noodles!” heads up on his day. He begi “I just need my noodles! ooooo my tummy!” ns to tell me about his day. He mentions this meeting and that and when he’l “Hey, the noodles are ready!” I say cutting off Doc but I just can’t help myself. Aria exclaims, “YEAH!! noodles, noodles, noodles!!” Breathlessly she adds, “ I need’em in a bowl not a plate and, and, and I want a small spoon AND I’m not thirsty!” I begin to give Aria the lo-down on what exactly I’m doing to make these noodles. I feel like I’m in a race and my mouthing and tongue are head to head running to the finish line, “I’m straining them now. Ok, all done with that and now I’m adding some butter. Here goes the cheese and the milk! Voila, your noodles!” She is thrilled and begins to devour them. She doesn’t care that they are piping hot. She begins by eating the noodles along the outside and works her way in. Doc and I proceed to finish our noodles, uh.., I mean we begin to finish our conversation! This whole process, by the way, has taken all of 10 minutes and it has felt much, much longer!
In no time I hear Aria say, “I’m a piggy-piggy, I need some more please!” Wow! So I give her another little bowlful of noodles. She is quietly eating and in heaven. Reo enters the picture wanting noodles too so he helps himself but wants some root beer with his noodles. I tell him “no” and he’s devastated. I try to explain to him that it is 7am and we don’t drink roo tbeer first thing in the morning. He digs his feet in and decides he isn’t hungry for his noodles after all. He pouts and growls, “I’mmm verrrry angggrrrry with you Mama!” I tell him to take a minute to himself and let me know when he’s ready to talk about it. Meanwhile, Aria exclaims, “MAMA, JUST look at WHAT you’ve DONE! You GAVE me TOO MUCH noodles!” She’s in tears and feels full and a little sick to her stomach and it is clearly all my fault! I pick her up and carry her to the couch to rest. I notice Rianna has been in the bathroom. A trail of toilet paper is following her along with itty-bitty pieces of shredded toilet paper e.v.e.r.y.w..h.e.r.e. A few are stuck to her feet and as she walks toward me and she wipes out on the hard wood floor and begins to cry. It is 7 15 am. I’m suddenly very, very tired!
I decide I need about 5 minutes to collect myself. I realize that I’m in for a long, long day. I’m feeling really emotional and agitated. On the one hand, I know exactly what is happening with Aria. This is the steroid. This is exactly what we were told would happen. Well, sort of. This is the “hard” part of what everyone was saying. Emotionally, my thoughts are a different matter. I’m struggling with this particular juggle. Aria is absolutely incessant in her demands. I can hardly complete a thought, let alone speak in complete sentences. I’m frustrated and full of sorrow that she has to go through this. I’m also getting ready to have a full blown pity party for myself, which are never ANY fun because I’m also dealing with 2 other children who have their own issues going on simultaneously. I’m sitting at the computer reading a few emails when I hear Aria say, “Hey, Mum, I just love noodles!” I cannot believe my freakin’ ears! I shake my head and consider, “Didn’t she just tearfully scold me not 5 minutes ago and now she’s hungry aga..” “Mama, I need some noodles!” I’m breathing deeply. She is full and starving at the same time. It is the most exhausting thought. I ignore her for a moment trying to muster some strength when she walks into the room pouting. “Mama, I’m just hungry for noodles! I just love noodles!” I can’t believe that I allow myself to be reduced to this but I responded to her by saying, “Aria, noodles, noodles, noodles, noo,noo,noo,noo,noo,noo,noo,dles,dles,dles,dles,dles,noodles,noodles,noodles!” She looks at me horrified and says, “Mama, Stop!” and here is the clincher folks, I respond to my 4 year old by saying, “I’ll stop when you do!” Oh My God, did I actually say that? What am I now, 7 years old? “I know you are but what am I!” is a thought that screams in my head. I begin to laugh because I have clearly lost my cool. I grab Aria and give her a great big hug. I calmly tell her that she can not have any more noodles. She begins to cry. I suggest that she have a banana or some yogurt. She looks at me with tears streaking her cheeks and says with a grin, “Yogurt! I just love yogurt and I want it in a blue bowl with a small spoon. Yeah!! Yogurt!” She proceeds to eat an entire bowl of yogurt! I’m amazed at her appetite. Aria finishes her yogurt a few minutes later and complains that she’s too full. She lays down in a chair and within a few minutes is fast asleep.
Meanwhile, I am trying to get myself and Rianna ready to take Reo to school, which has been delayed 2 hours because of the snow. I mention to Reo that it’s time to get dressed and he throws a complete tantrum. I’m blindsided. This is his process. Everyone asks me how Reo is doing. For the most part, he is doing exceptionally well. I’m sensitive about him and his behavior because it is impossible at this point to separate what is normal 6 year old behavior versus behavior due to new stressors added to his world. They overlap completely. Reo and I discuss the matter but it’s very hard. He digs his feet in and fights me knowing I don’t have the energy for an argument. I choose to ignore him, give him some space and get myself sorted and re-energized.
Finally it is time to go and we pack into the car. Aria starts in with, “hey mom, wanna know what my favorite kinda food is? (pause) junk food!” This becomes the mantra for the rest of the day. I’m not exaggerating. It is so draining. I was constantly telling her no. On Tuesday of this week, I did allow her what she wanted, which was a McDonald’s cheezie burger and fries. She gobbled the entire thing and was as happy as a clam until an hour later when she wanted more. You may be thinking, “what’s the big deal? Give her the darn junk food for this period of time. Surely this craving won’t last! Man, just give her what she wants!” I’ve had those conversations with myself but the truth of the matter is this: McDonald’s, like Wal-Mart, represents everything I find completely and utterly disgusting. There is nothing and I mean nothing healthy about McDonald’s food. Aria is already very sick and she’s craving something that is mass produced and processed, riddled with taste chemicals, pesticides and herbicides and let’s not forget the fecal matter in the beef as well as the potential risk of E.Coli. No, I just don’t think it is such a great idea. This is where I dig my heels in and have to stay true to health and what is really in her best interest. McDonald’s is neither healthy nor in her best interest so despite her pleas, I will not allow her more.
Still, all day long, she craves it and says, “hey, wanna know what my favorite food is?” Over and over again. All day long I hear this. By the second day, I am completely spent and it hits me like a ton of bricks. It isn’t the incessant wanting and demanding that is so wearing. It is that I have neglected myself. I am depleted. I have nothing of me left and therefore, I have nothing more to give. I cannot give my patience because I am depleted. I cannot give my guidance because I am spent. I need some time for myself to rejuvenate and re-group. I know myself well enough to know that I don’t need much time, just some time and some creative time. I decide to go to bed early with the kids and have a nice rest. I’m in bed at 6 45pm! I sleep really, really well and wake up recharged.
Aria begins her morning the exact same way. She is stuck on noodles as well as junk food. Again and again and again. We decide to make her noodles for breakfast and she’s frustrated at having to wait so she asks Doc, “Hey Dad, can I have some pizza while I wait?” That was the ice-breaker for us both. It just made us laugh and laugh and laugh.
I feel refreshed for the most part and ready to face the day with her nibbling away at my psyche. Reo and Rianna are in good spirits. We have a fine day. I am wiped out by 3 pm when Amy our dear neighbor shows up. She just came by to see if I could use a break! I tear up, I’m so thankful! I sneak away immediately and head into the sewing studio where I sew for an hour. I mended and created. You have no idea how I needed that! Later on when Doc came home I was able to treat myself to a hot bath and a glass of wine. This is such a luxury at this time.
It is Thursday February 7th and I have a full head of steam. We are having yet another snow day where school has been cancelled! The winds are howling and the snow is drifting badly. Doc is home also shoveling and plowing. Tomorrow we go to the clinic for her chemo treatment and blood draw. She can eat so it will be great. We have reviewed the end of this phase and realize that because she is a “rapid early responder” she will not need the extra 2 weeks of the steroid treatment that kids who are not early responders get before going on to Phase 2. I am sitting here now feeling so incredibly grateful that we can bypass that altogether. I know without a doubt that we would muster the strength if we had to but I am certainly breathing easier knowing that we don’t. It is a relief!
I roasted a chicken last night for dinner. Don’t worry, I didn’t go out to the barn and kill off one of my hens! I actually bought this one from the store, which is the first time I have purchased chicken in 2 years! Anyway, I roasted that baby up and Aria LOVED it. She gobbled down a bunch so I’m hoping that it will become a new craving. I keep trying to introduce other salty starchy foods like mashed potatoes and the like. We’ll see how she does. She’s already had noodles and pizza this morning for breakfast. She’s mentioned once or twice that junk food is her favorite food so we’re off and ready to greet this day.
I am thankful for patience. I am thankful for fresh clean air to breath. I am thankful for healthy food. I am thankful for snow days. I am thankful for Doc. I am thankful for each of you sharing this experience with me. I am thankful for all the positive energy that has shrouded No Worries Farm. I am thankful for rest. I am thankful for this day because in this moment, we are well and all very much alive!

This is Aria when she just started her steroids.

This is Aria at the end of her steroid treatment. I begged her to smile for the camera. I may have stooped so low as to bribe her with a piece of chocolate!

This is Aria after she spent a few minutes twirling. She had a meager smile or two that we caught on film, but within an instant this was her mood.

Too Much Toast!

Initially, Aria was given a 28 day course of steroid (Decadron, which we call deca-Drama) treatment, followed by monthly steroids for 5 days twice a day. That may not sound like a lot, but let me tell you, these steroids are really awful. People told me repeatedly how ‘hard’ the steroids were. I kept asking what ‘hard’ meant. I craved examples of what kids were like and no one seemed able to draw me a really decent picture of what to expect. Responses like, “Oh I don’t know. They just get so fussy!” or “The cravings are just incredible. All so-and-so wanted was salty junk food.” or “My son would just become this little terror!” were very common. Dr. Trobaugh told us to be prepared that Aria would be irritable, perhaps withdrawn, weak-like and just ‘different.”

It has been my experience that the moment she takes her first dose of steroid, a light switch goes off and she becomes, indeed, ‘different.’ It is somewhat subtle in that she doesn’t become this raving mad lunatic but rather she has moments in the day when all seems fine and dandy and then suddenly, out of the blue, something will set her off and she becomes an emotional train wreck. My favorite example and certaintly one that is as transparent as it gets happened last summer. Aria was thrilled to be going swimming in our pool. This activity gave her so much joy. It was hands down her favorite thing to do. So we were all swimming and having a great time when suddenly she got splashed! I’ll point out the obvious here: we were in a swimming pool filled with water! Well, you would have thought by her screaming that she had just been doused with hydro-chloric acid! She was inconsolable. “I’ve been splashed! I’ve been splashed! In my eye! I’m wet! I’m wet! I’m wet!” It was so shocking that Doc and I literally did not know what to do for a moment. We just stared at each other. Then without saying a word to her, we took her out of the pool, wrapped her in a towel and placed her in the sun on a lounge chair where she almost immediately fell asleep.

We have learned not to follow through on the temptation to try to rationalize the situation or ever reason with her. She can get so irrational and unreasonable that it is a complete waster of breath to convince her otherwise. We’ve learned to simply hold, rock with her, speak gently with her, coo and cuddle her. One of two things typically happens after such an episode and she is comforted, calmed and filled with a sense that she is safe. She either falls asleep or she finds something to make herself laugh like a poop joke. It is the most extraordinary experience. I have never in my life laughed so hard and felt more exasperated too.

This email was the very first example we had of what was to come in terms of her steroid reaction. She had been on steroids for a little more than 2 weeks.

Subject: Too much toast!
Date: February 3, 2008 7:59:04 PM PST
This morning, Sunday February 3rd we had our first real glimpse of
Aria's emotion due to her steroid. This steroid, by the way, is a key
component of her chemotherapy protocol and unlike performance
enhancement steroids it does not make her stronger or hyper. In fact,
just the opposite is true. Aria is weak, easily fatigued but her
emotions can travel the spectrum in a single moment and that is what
we saw today. We were also told that she would crave salty foods and
junk food, which is definitely already happening. All day yesterday
Aria was craving a cheesie burger and french fries from McDonald's.
UGH!! She wasn't allowed that food and she was pouting about it all
day. She's also been craving mac-n-cheese, which is also a junkier choice
and something she wants breakfast lunch and dinner. We're getting to
the point in her diet where we have to enforce variety and high
calorie, high protein options. We have all kinds of suggestions and
wonderful recipes that she wants absolutely nothing to do with. It is
so transparent, which makes it easy but at the same time it is very
challenging because the foods we are suggesting truly don't sound
appetizing to her. Just to give you an idea, she is not even
interested in chocolate OR ice cream. This is positively unheard of in
Aria's world. She used to wake up asking for a little piece of
chocolate to start her day. So the fact that she refuses it when it's
offered to her is a massive change!

Yesterday, Doc encouraged her to try some toast with butter since
we're trying to keep her diet mild. Reluctantly, she tried it and
actually liked it. This morning she wanted noodles and junk food to
which I said no. After some tears and bemoaning, "Mama, you hurt my
feelings!" she decided that a little toast would be ok. So I toasted
and buttered 2 lovely pieces of bread and gave them to her. Well, to
my astonishment, she burst into tears! Sobbing, she said, "There's
too much toast on my plate! Mama (screaming) you put too much toast
on my plate! Waaaaaa waaaaaa waaaaa!" Doc and I looked at each other
in amazement. Doc then said something to the effect of, "Hello

I promptly took the mountain of toast off of her plate leaving only 2
triangles of toast, which she proceeded to inhale. No sooner had I
put the other 2 offensive pieces of toast on another plate, she was
asking for them! Right now it is all so transparent and easy to
understand. It's almost funny and in some ways it is funny. Still,
there is always the nagging reason for this situation and that often
brings humor to a grinding halt.

It is now Sunday evening and I am very happy to report that we had a
lovely day. Aria was in pretty good spirits most of the day. She was
starving for that junk food all day but I managed to persuade her to
try other things. I think it went fairly well. She complained a lot
less about her tummy being "not uncomfortable", which means that it's
sour and cramping. Her new thing with regard to food was that she
would eat something, say some noodles and within a handful of bites feel
full and I mean really full. She would whine about it, "Oooooooooh, my tummy
is so full....I ate too much noodles!" Then 10 minutes later she'd ask me about j
unk food and complain that her tummy was "grumbley" and hungry again. I also
noticed that her belly is distended and tight...a little bloated perhaps and due
entirely to the steroids I'm told. Tomorrow I will consider how to make her
smaller portion meals with some kind of variety and lots of them. We'll see.
11 more days of the steroid, but who's counting???!!

My love to you all! ~j

This is Aria about one week into the steroid treatment. She was bright eyed and cheerful.

This is what Aria was like at the end of her month long steroid treatment. For the last week and about 2 weeks afterward, she was completely withdrawn and sullen. She stopped smiling and her eyes no longer twinkled. It is an understatement to say that it was hard. The truth is, it was horrible and it was scary.

Aria's Toes

There really isn’t much need to preface this email other than to note the overwhelming need I felt at that time to notice every detail of almost everything. It was like I was scared to death the world I was seeing was suddenly going to be destroyed leaving no remnants of familiarity. I wanted to take in everything and burn it to memory, just in case.

Subject: Aria's toes
Date: February 3, 2008

Aria has great feet. I painted her toenails and fingernails while we
were in the hospital. I used this loud hot pink polish my dear friend
Angie gave us and it was the perfect color to contrast the sterility
of the hospital environment. It has been chipping off ever since but
Aria refuses to let me remove it completely and repaint her
fingernails and toenails!

Last week Wednesday January 30th, 2008, I was sitting in our second
floor bathroom with Aria taking precious notice of her feet. It is
important to know that the 3 bathrooms in this old farmhouse are all
really small and simple. There is a bathtub, a sink, a toilet and a
medicine cabinet above each toilet in each of these rooms. There is a
mirror above each sink with a few meager decorations here and there.
The second floor bathroom does not have any storage for towels and
the like, with the exception of a large piece of plywood acting as a
shelf running the length of the room against the main wall. Upon that
shelf, we store basic bathroom supplies; toilet paper, shampoos,
soaps, toothbrushes and so forth. It functions well but has begun to
sag a little in the middle. This bathroom, the one on the second
floor, has white 1 inch tiles on the floor with larger tiles halfway
up the wall with pink grout. I despise this pink grout and have ever
since we bought this house nearly 9 years ago. However, when we moved
in, I didn't want to go through the hassle of tearing out this old
ugly tile and replace it with something more my nature so I, instead,
decided to paint the walls and medicine cabinet and door. "What to
paint that matches pepto-bismol pink?" I wondered. I decided to go
'carnival-lolli-pop' and I painted the walls a wonderful purple color
with the medicine cabinet and long shelf and door a mint green color.
It is so hideous in some ways that it's lovely!

Aria was sitting on the toilet in the throws of her cramping 4 year
old bowels and I was sitting on the bathroom floor, on a purple bath
mat, leaning against the bathtub watching her, noticing her feet and
her toes. Aria's third toe on each foot curves in slightly toward her
second toe. It is adorable and unique. She has strong feet that are
wide and sturdy. I was sitting there with my legs slightly bent so
that my feet were resting just underneath her feet, which were
dangling. She was bent over, moaning a little. I couldn't see her
face. Her hands were holding on tightly to the toilet seat. "What is
she feeling?" I wondered..."What can I do?" I was completely
helpless. She didn't want me touching her and telling her that
everything was going to be ok seemed pathetic and a little false. I
sat there and breathed deeply. I closed my eyes and surrendered
myself to that moment. I simply wanted to be fully present to her. My
eyes were closed. I was relaxed and my feet and toes were slightly
bent upward so that my left foot and toes gently touched the bottom
of her right foot. The contact made me open my eyes and for a moment
I was nervous that this touch would upset her somehow.

Aria's feet and toes did respond, not negatively, but in a magical
way. Aria began weaving her toes into mine. She found the space
between my big and second toe with the space between her big and
second toe. Her foot being perpendicular to mine, she locked these
spaces together so our feet were connected. She did this repeatedly
and I found it so tender and so sweet. I just sat there watching this
footsie play unfold. She also used her toes to stroke the top of my
foot forward and back, forward and back...

It was a moment that was painful for her and yet she found a way to
comfort herself. The standard kind of touch and words we use to
soothe were not suitable to her and I knew that. To allow myself to
be fully present to her, to use me in whatever way she needed in
order to find some kind of comfort and reassurance was very
empowering. It was a moment of great humility for me because she
didn't want me on one level and on another desperately needed me
present. It was humbling to know that the touch of my feet was all
she needed and as it turned out was exactly what I needed too.


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.

Aria's Tenderness

We had been home a little more than a week and settling into a new routine. Aria was clearly unwell and yet this was all a part of adjusting to dozens of new medications as well as healing. We were all somewhat sleep deprived and stressed and this was taking a toll. We were trying to keep life as simple as possible and so far things were working fairly well. My confidence was increasing with every day. My comfort dispensing medicine and cleaning syringes, which might not seem like a big deal to you but at time it was enormous for me. It was all new and so it was scary. It was something I didn’t want to do but had to and so that was hard and weird to reconcile. Still, I began to see that life was unfolding offering me incredible glimpses of something else, something more meaningful than I could have ever imagined. Moments like the one I describe in the email below happened in a flash and yet the moments surrounding and defining it were every bit as meaningful and I found myself drawn to taking in every minute detail of every moment of every day as if it would be something to venerate and celebrate someday. And so it has.

Subject: Aria’s tenderness
February 1, 2008

Aria has had a rough few days. She's had terrible diarrhea and cramping. We've called every day since it began Tuesday afternoon and the general consensus is that the antibiotic she received over the weekend is the culprit. She's been eating well and taking in plenty of fluids so we aren't too worried about dehydration and the like. Still, it has been REALLY hard watching this fragile (or what I project to be fragile) little person, bent over, moaning saying "ooowwwwwieee" for the better part of a day. Yet, through all of it Aria finds the spirit to be tender and considerate and completely self-less. This is what she did.

The other day, Wednesday January 30th, we had a BIG day. We had the hair-cutting party at a fancy salon. It was fun and I'm convinced Aria would have had a good time had she been feeling better. Balloons and treats were involved as well as a large audience just cheering for us. It was magical in many ways.

Allow me a wee digression. If you didn't know already, the state of Washington is in a state of emergency because of all the snow. We have been out of school this entire week, which has been PERFECT with me since Doc has gone back to work. In any case, the snow has been gorgeous and fabulous and intense in terms of getting anywhere. Driving has been really tough and our country roads get plowed by people with tractors and plows on their pick-ups, like us. They get plowed by the big heavy equipment but usually not for a few days after a snow and certainly not when you need to get around. So, Doc has, for days, been digging people out of ditches and snow banks. He's been plowing our driveway and the road to the barn as well as Tata's lane and the driveways of a few neighbors. He has been at this for hours every single day.

Wouldn't you know, after our hair appointment, I'm trying to get out of the parking lot and I slide into a snow bank and get stuck. I call Doc who has just arrived home early so he can begin plowing and I ask him to come back into town and dig me out. He has every reason to be angry and irritated but he isn't. He's calm, understanding and loving. The kids and I wait in the car for him to come. Aria is completely wiped out. Reo is amusing himself with stories and Rianna is sound asleep. I'm a little worried that Aria will need to use the potty and I'll have to quickly get everyone out of their car seats and head back into the salon. This didn't happen and despite trying to be open, I was so thankful!

Our hero arrived about 30 minutes later after receiving fair warning of the new looks we were all sporting. It was a mess! The innocent little snow bank that my front right tire was stuck in was really an ice bank, which Doc had to chip at and shovel through, breaking the handle of the shovel in doing so. So with the head of the shovel, there is my husband, my hero, banging away at this snow bank; something he's been doing for days for other people with nothing but a generous spirit. I know it was the LAST thing he wanted to be doing for us, but there he was. Finally, after a good 30 minutes and some pushing and rocking of the car, we were free!

By the time we got home, it was close to 5pm and our hair appointment had ended 2 hours ealier. Doc still had some major plowing to do with another snow storm headed our way. It was a daunting task to begin as the sun was setting. Still, he had his coveralls on and all his gear and for nearly 3 hours he plowed snow. The kids, meanwhile, were contentedly watching a movie. When Doc came in, he was angry. He was frustrated. I swear I could almost see steam rising from his body and of course I asked him, "What's wrong, Doc?" His reply, "Oh, I'm just mad at the world right now and really need a minute to get myself together!" You have to understand, I can count on one hand in a year's time the number of times Doc says he's angry let alone loses his temper. He's the most collected person I know. This was a big deal. I'm embarrassed to admit this but the completely juvenile place I went to can be summarized in my reaction which was, "Doc, (pause) are you mad at me?" The minute the words rolled off my tongue, I thought, "UGH!! Hello? Are you 12?" Still, I had to know if coming to dig me out was just the final straw and what's worse, I had to face with all humility that he may be disappointed in me and my carelessness. I took a deep breath and waited. Doc looked at me and said so reassuringly, "ooooh no baby, I'm not upset with you. no. no. no. I'm just having my moments too."

It was fast approaching our bed time ritual which has seen the addition of medications for Aria. She takes them exceptionally well now and has resigned herself to this daily reality. Doc and I embraced and exchanged wordless recognition and admiration of each other. It is the boost we give each other to face what we must. We went upstairs to get Reo, Aria and Rianna ready. Reo was in his room playing with his stuffed animals. Rianna was in my arms as I walked into Aria's room. Aria was sitting on her bed with Doc who was talking to her about her medication and discussing whether she wanted her meds in the bathroom or there sitting on her bed. Again, these little decisions that we allow her to make in this very big process, we believe, are very important. She decided to have her meds on her bed.

Doc looked at her and smiled. He was tense and tired and trying to put aside the weight of the world that was weighing so heavily in that moment when Aria said to him very clearly but gently, "Daddy, I want to give you something." Instantly, Doc sat straight up. "Oh yeah? what?" They stared at each other for a moment and she said, " A hug."

I'd never actually seen a person melt into another person's arms before. Doc had been disarmed by our 4 year old daughter and the weight he'd been carrying high in his shoulders was gone in a single breath. Aria wrapped her arms around him cuddling her face into his neck. He gently picked her up and brought her onto his lap as I watched in silent tears. I stood there in awe of the human spirit and more specifically Aria's spirit and her "gift". The gift of herself so pure so innocent so healing in time of great need. I'm quite convinced I've never witnessed this kind of unconditional giving and realized in that moment the profound lesson she had just given me. With that, I quietly left them in her room.

Aria getting ready to say goodbye to her beautiful braids!

Aria feeling completely sick to her stomach. Her hair was the least of her concerns.

Aria sporting her new look, which I might add is adorable! She liked her hair cut a great deal but just didn't feel well. Incidentally, the outfit she is wearing is something I made for her. She has another outfit similar to this one. She wore them to every single clinic visit we had for months and months.

Reo cutting my braid. Rianna found some gel tube to chew on!

After he cut it, he was a little shocked and although he wanted to the cut the other one he was nervous. I love how he's checking out this braid specimen.

What you can do to help...

This is an email that I wrote to address the overwhelming need “to help, to do something” that comes into play when tragedy strikes. People feel completely helpless and lost watching their loved ones navigate the waters of horror. I know my parents were a little stunned when I told them not to come out and to wait. They heard the news and were looking into flights to come ‘help’ almost immediately. I put the brakes on those plans for them. I couldn’t think of what ‘help’ I needed. I needed the nightmare the stop and wake up into my old reality, but this wasn’t going to happen so finding things for others to do to be helpful eluded me.

People often look for direction. They want to do something that they would be of some use. People tread lightly. They don’t want to intrude but they have an overwhelming urge to get involved. They simply don’t always know how. This was my perspective just 2 weeks after we received the news.

January 29, 2008
Subject: What you can do to help

You wouldn't believe the outpouring of people… even complete strangers. I have heard countless times, "If there's anything and I mean a.n.y.t.h.i.n.g you need, just let me know." The sincerity, the almost pleading tone to help is so humbling and I am so grateful. I know I have said this myself time and time again only never to be called upon.

I've been thinking about this a great deal because people genuinely do want to help. People are ready and able to help. Friends and family feel so helpless and want to contribute in some way, any way, something, anything to lighten the load. I sense this so completely. There's also this overwhelming respect for privacy. The desire not to intrude, the respect for our space and our need to hunker down with our kids as we figure this out inhibits people from taking action.
"Do I call and check on her?"
"Geez, I don't want to bug her."
"Julia's forthcoming, she'd call and let us know, wouldn't she?"
"Man, I feel like I just gotta do SOMETHING!"
I can hear it loud and clear!
My brother Mike wrote to me recently and told me about a friend who is in treatment for breast cancer. What Mike said was, "The one thing I learned about
cancer patients is that "Let me know if you need my help" doesn't work. You
have to actively BE HELPFUL, because they normally don't ask." I cannot tell you how this resonated with me. Thank you Mike for saying it.

I am at a complete loss for what my/our needs are right now. A complete loss. I'm full of contradictions that leave me feeling a little stuck. For instance, we will need a housekeeper at some point BUT right now doing some of the cleaning myself has been incredibly therapeutic. I caulked the bathroom tub after 9 years! I used a pair of sewing scissor to scrape out the old crud for heaven's sake! It felt so good to do. Do I really need someone, a friend, for instance, to come over every Wednesday to wash the floors? Perhaps, but it feels so wrong that I can't go there. Being available for Reo is another incredible offer. There will come days when someone will have to pick him up from school or drive him and I'm dreading it. I'm dreading that transition for him. It is one more new thing for him to accept and endure. He will because he must, but he's 6 years old. Granted these would be people he loves and adores but there's no getting around the reason for someone else having to get him. This is yet another reminder of how little control we have. It is a lot to ask someone to be on stand-by for the off-chance that they are needed. Plenty of people have offered and I have my list but it weighs heavy.

Food, everyone wants to bring food, which has been SO great!! Cooking for Doc and I is something I normally love and right now it is all I can do to keep the kids fed so having outside food has been great

The other offer we've received a lot is for someone to watch the kids while Doc and I go out and have some quality time together. This is so generous and so amazing and falls completely on deaf ears right now. I’m so sorry! I can't even imagine wanting to do that 6 months from now. Who knows maybe my attitude will change then? I know it’s important to keep the "us" part of our relationship but Doc and I are definitely our best "us" when we are with our children. This time in our lives is so intense and so all consuming and I have a strong sense that I will not regret a single moment of it 5 years from now when it seems like some kind of surreal dream. I could be completely wrong and forgive me if I'm sounding defensive but I feel so connected with Doc on so many levels right now that time alone with him out to dinner seems odd. I described it to a friend today as something like this. Suppose your kid is really sick and has been for some time and you're worried. It's basically all you can think about. You take your kid to the doctor and you know full well that he/she is in great hands. It's the doctor for heaven's sake! So you make ready to get your kid settled in with the doctor and you say, "ok hon, all is well, I'm heading out to grab a little me back in a jiff." Would you really feel better? Would you really have quality time? Would you really be able to let go? Perhaps that isn’t the point. Perhaps the point is simply a tiny little break and change in scenery. Perhaps that would satisfy some. I’m not ready yet.

Nope, despite how tough it is, how grueling, how all consuming, we are sticking close to home, the kids and each other. Again, I recognize this offer in particular is so sincere and so genuine and coming from of place of pure consideration. I'm just letting everyone know where we are in the process. It also doesn't hurt to know that Doc and I are complete home-bodies. I can stay cooped up in this creaky old farmhouse for weeks and be perfectly A. OK!

Regarding the matter of calling me and checking in. PLEASE do! I've said this before but if ever you are inspired to call me, don't hesitate. If I can't talk, I won't. You are all being so tremendous to us. The emails, the wonderful letters and cards, the presents, the phone calls and so forth have already been so helpful. They all matter. The reminders that you're available is so great.

Remember that this process began only 2 weeks ago. 2 weeks ago and already it feels much longer. We have a long, long way to go so loads of opportunity await both you and me.

In the meantime, from the very bottom of our hearts, Thank-you! Like Mike said, "you must be actively helpful." For now, that means your presence, your availability, your listening ears and your wide open warm hearts!
Our love to each and every one of you!

It is fascinating for me to read this email now 16 months later when living with leukemia has become somewhat routine and normal. As a matter of fact, what makes me anxious now is thinking about what will happen when her treatment ends and her body will be left to its own devices! I’ve grown accustomed to the monthly examinations and constant follow-up. There is a great comfort knowing Aria is being monitored so closely. We have everything ‘under control’ and life has resumed to a familiar pace.

Still, when I think back to those early days, weeks and months with people asking for things to do, I find myself in a struggle. On the one hand I can see so clearly the benefit of having people come in and lighten the load by doing simple little chores like dusting, vacuuming, laundering, cooking and so forth. People want to do those things. They want to stop feeling helpless. They want to give me a break and ease the tension that consumes my mind and body. I understand this so fully.

But it’s what’s on the other hand that causes me to struggle. I don’t want to give up those things and I didn’t want to give them up then either. Yes, all those regular piddly household chores were a sort of added burden in those early days, but they were also the only measure of control I had at the time. So much of our lives felt completely out of control. Not in a spiraling chaotic kind of way, but in a way that shattered my sense of security, balance and order. At home I could control how dirty or clean my house was. I could have control over when the laundry got done. It gave me an enormous sense of accomplishment to wash and fold clothes, which was something I was desperate for because like so many people wanting to help in their helplessness, I, too, felt incredibly helpless.

Every day I watched Aria and worried and wondered. Every day for months I wondered ever so briefly if there was something I had done to cause this. Sometimes scrubbing the toilets helped me scrub away those thoughts and flush them to where they belonged. Sometimes vacuuming up dust and dirt helped clean my mind. Sometimes washing the dishes enabled me to cry and mix my tears with the water running down the drain. I didn’t want other people to take those things from me. I needed them. I needed to feel like I could do something, that I was doing something. I needed those activities to reminded me that I was still ‘normal.’ I was forced into a situation that was constantly reminding me of what I had to ‘let go’. Every time I let go, my heart broke, making me feel a little more vulnerable. Likewise, every time I could hang on to something, I felt empowered and as if a little of me was on the mend.

I know I frustrated many people whose offers for help I rejected. At the time I remember thinking that I simply didn’t have the capacity to assign tasks that would be ‘helpful.”
“So and so, could you polish the furniture?”
“You there, could you run to the grocery store?”
“ Hey, I could really use this or that.”

Some people are fashioned this way and know exactly how to delegate duties to satisfy other peoples’ needs to be useful and helpful, as well as take care of their own needs. In many circumstances, I think I’m a rather decent manager. Under these circumstances, however, I was shown that I am not. Crisis does not lend itself to steering a clear way.

People would hear my fatigue and my burn out and it made them uncomfortable. They wanted my suffering and my sorrow to end. They longed to give me a break; something, anything that would break up the monotony of my days. Some people relish having a break by having a massage or going to the Mall or getting lost in a bookstore. That is a rare treat for me and I have to be ‘in the mood.” Offers of this kind were of no interest to me and at the time I wasn’t able to explain why. I didn’t know! I simply felt, “thanks but no thanks.”

When we were adjusting to all of Aria’s new needs, the last thing I could consider was being away from her. The thought of taking some time and having a massage just made me want to wretch, for example. Going to the grocery store enabled me to have a little break and to wander around but I tell you, wandering was hard sometimes. Indeed it was a break, but it reminded me that I felt lost a lot of the time. The things I looked at in a store were so meaningless to me. Suddenly everything took on this label of ‘stuff’ and I began to loathe it. I would feel my heart race with this urgency to get home and be with the kids and Doc. This is what mattered to me. Suddenly not missing a single moment with them held more meaning than I can describe.

I suppose some of this urgency was intertwined with my anxiety over “what if something happened while I was gone?” This thought made it virtually impossible for me to let go. You may wonder, “is it a control issue?” ABSOLUTELY! But allow me to say with clarity and conviction that that must be ok and let me tell you why.

You see, I felt hurt knowing that I was disappointing people by being honest in refusing their help. They felt rejected, annoyed and at times judged me for my decisions. Crisis like this creates a situation that isn’t meant to add insult to injury by creating hurt feelings, but you can see how it happens. Tragedy strikes. Something happens and you are watching a beloved suffer. You have a need to help. You want to help. You offer help. Your help is rejected. Now you feel rejected and hurt and so project your feelings onto the one you wanted to help in the first place. Suddenly that person is controlling, closed off, and unable to let others in. Afterall, all you wanted to do was help! What could be so hard about that? How can they reject my help? How can they reject me?

Let me tell you that it isn’t as simple as you may think. Not only that, it isn’t about you at all! I would never have been able to explain this 16 months ago but with time I think I have a better understanding.

Back then, I felt like I had a grip on a lot of what we had to do. I felt upright. I was moving. I was making decisions. I was speaking in complete sentences. I was feeding and clothing the children. I was laughing and able to tell a few jokes. I seemed relatively ok and for the most part I was and that’s because I was in a survivor’s mode. My world was destroyed when Aria was diagnosed with cancer and more destruction was constantly being threatened by thoughts of her dying. All the things that I had to do and those things that eventually had to get done were so minor compared to the monumental thoughts of what was happening to Aria and how our lives were being redefined before our very eyes.

I knew the laundry would get done. The house would get cleaned. Food would somehow be in the fridge and get cooked up and served. None of those things really mattered to me and so devising a plan for others to do those things was simply beyond me. Interestingly, what happened as a result of other people feeling hurt by my lack of direction and openness left me feeling surprisingly inept. I had to face that I was not able to discern my needs and delegate them so others could feel helpful. I felt repulsed over my need ‘to control” and grieved simultaneously the loss of so much of it. I felt completely surrounded by people looking to give me assistance to face a journey that scared me to death. It was the strangest feeling to be so overwhelmed by so much kindness in helping me get ready and get my footing back again while at the same time feeling completely alone.

I knew I would have to walk this path by myself. I knew I wouldn’t be lonely even though it was a solitary journey. I knew many would wander beside me encouraging me along the way, but I also knew I’d have a lot of time to myself.

And so it has come to pass. I have spent 16 months walking this path. I’ve discovered many on parallel paths and I intersected with many more. I’ve taken detours. I’ve hidden out and hunkered down. I’ve stopped and stepped off the path a time or two but all along people have been with me. They’ve been helping me and supporting me. They’ve been cheering with me and for me. They’ve been encouraging me and reminding me of my strength and smarts.

There is so little that you can do that is really truly helpful. I know you’re reading that and thinking, “Did she just say that there’s nothing I can do that is helpful?” I know that sounds kind of harsh because there’s plenty to do that is helpful. But the truth is that so much of that gets done anyway. To this day, I don’t want people to DO anything for me. I want people to be….to be available to hear me when I need to talk out my stress…to be comfortable just showing up and doing whatever the task of the day is…to be comfortable showing up to do nothing at all….to be comfortable letting me be without feeling the need to find solutions, fix problems or make it all go away…to be compassionate and patient because this journey is not a quick fix. It is long and tedious and harsh. All around me people have moved on with their lives as they should and in some ways we have too and in other ways we haven’t and this is hard….to be trusting that I may not always know my needs but eventually I will….to be spontaneous because sometimes that lightens the load more than anything else can.

I have learned, my friends, that what I need, more than anything you can do for me, is to have you share your presence with me….your thoughts, your prayers, your encouragement, your well wishes, your recognition of others going through something similar from what you have learned from me. These are the sustaining forces that keep me going. I often imagine myself walking along this path with you standing in a meadow tossing petals my way, or waving, or singing me a song that is carried on a gentle breeze. Every fiber of my being absorbs this and is the better for it.

We have learned that somehow our actions are more important that our presence. I’d like to suggest that that isn’t true. Sure we feel good about ourselves when we do something that is helpful for someone else. Indeed this is true. But I would ask, were you truly present doing it?

It has been my experience that the greatest healing has come from others simply being with me, sharing their stories, listening to mine, exchanging a bit of humanity. This is not something we are accustomed to doing and it is certainly not something we are taught to do very well. I have come to believe, however, that isn’t so much what you DO that helps but who you ARE that makes all the difference.

Sunday, May 24, 2009

The Reflection Begins: January 15, 2008 My thoughts

After that first outpatient visit, I had been on the phone with my parents and Doc with his parents explaining what was going on. They had been very good to keep everyone else updated and more and more people were asking to be added to my email list so they could receive updates as well. After I sent that email to my Goddesses, I spent the next few days hunkered down reflecting on what was happening. We were having incredible snow storms that were beautiful and cleansing. I suppose at the time, it offered me a blank canvas upon which to toy with thoughts.

Sending the following email was a truly cathartic moment. I think this was when I discovered Aria was my Muse and that I indeed had a voice that needed to be channeled as well as a need to write what was in my mind that possessed a force I wasn’t able to suppress. From here, my writing changed and I think it reflected my attitude in general.

January 29, 2008
Subject: Tuesday January 15, my thoughts

It is Saturday evening January 26 2008 and it has been snowing all day. I LOVE the snow. I haven't been in this snow yet, but I've been watching it admiring its purity and its silence. It has been a beautiful day. Aria's first outpatient procedure and chemo treatment went really well...truly as best as we could possibly have hoped for. In some ways the time flew and at the same time it stood still. I'm finding my perspective these days is colored by many opposites. For instance, I am both calm and panicked. I have a sense of peace and terror. I'm sick to my stomach and famished. I'm exhausted and energized. It is the most peculiar existence but like virtually everything we're doing now, I'm observing it, embracing it and going with it. I feel strangely free. Aria was starving most of the morning of her procedure with a real craving for eggs. We had to try to distract her for hours and this was challenging. Understanding tones, "honey, I'll get to eat soon..." or "dag nab it..what a drag...." or "I'm sorry you're so hungry" were just not doing it for her. Aria was pissed and she was hungry. Rather than turn beastly, she was whimpery and limp. I tried all kinds of things. We looked for everything red. We looked for everything with the number 2 in it and so on and so forth. But FINALLY she was taken in for her procedure. That lasted all of 45 minutes or so. She woke up really well and still famished! Waiting for her was a bagel and cream cheese, oranges and oreo cookies, all of which she inhaled and still wanted her eggs when she got home. This is the steroid kicking in and it only gets worse as we go along. We have 20 more days of it...HOLD ON!!!!!! She had her chemo treatment and we hit the road. All was fine. She had some nausea, a little headache but no leg pain, which we were dreading. We'll see over the next few days but so far so good. The child played out in the snow today for about 10 minutes. She helped Doc plow for heaven's sake! INCREDIBLE! We are very pleased with how well she is doing. We're watching her like a hawk obviously but happy that she is resting really, really well and so happy to be in her own bed. It is so nice.

It is now Sunday Morning January 27, 2008 and it is STILL snowing!! It is just gorgeous. I'll take some pictures and try to post them for you!! We are expecting snow all day, up to 10 inches for the weekend! I'm in heaven. It's the really good stuff too; nice snowman making, monster making and angel making snow!! Aria had yet another wonderful night. She slept all the way through once again. She has a pretty hearty appetite but is unfortunately dealing with some mixed messages from her gut; her tummy is rumbling and uncomfortable but she must be asking herself, "Am I hungry?" or "Am I going to throw-up?" Poor baby...she's eating and everything is staying down but her gut is gurgling and churning...Still, no headache (her complaint is "my head feels bent!") no leg pain ("my legs are bent") and no real lethargy. She's doing so well! Yesterday, she told our neighbor and dear, dear friend/surrogate family member, Tata, that "My mama told me that my hair is all gonna fall out but then it will all grow back!" She was waving her arms as if waving a magic wand and wiggling her fingers and hands as if casting a spell. Her playfulness and full acceptance of the matter was very reassuring to me. I feel it is important to keep a level of nonchalance about so much of what we're facing otherwise I think it would be easy to be consumed by the daunting newness in our lives. It by no means de-emphasizes the seriousness of everything happening nor do I think nonchalance is synonymous with being flippant. Instead, if I can shrug my shoulders at what Aria has to face with an air of confidence, a "Well, this is what we have to do, so let's do it" kind of attitude, then I'm certain she will mirror my confidence and indeed she already has. Then again, I have to be able to fully admit that my confidence may be the result of me mirroring her and not the other way around! In this moment, we are all well.

I wanted to take a moment to once again thank each of you for writing to me to tell me how much you've appreciated these updates. I recognize they are long, somewhat graphic, and perhaps even a little tedious. Thank you for humoring me in reading them and taking the time to share your thoughts. In all honesty, I am not writing them for you. Selfishly, this is an exercise for me. This has become my journal, my open book and you are all invited. Your words of encouragement and your praise have been tender strokes to my sometimes wavering and fragile psyche. I appreciate them so much so please keep the emails coming and the letters. They are such a bright light in our day where clarity and cheer falter despite the courage and confidence you read in these thoughts. I'm also deeply touched that you would share these emails with your friends and extended family members, who have written you or me with overwhelming kindness and generosity. This, too, is the human experience and it is in some ways more overwhelming and more powerful than the tragedy we are learning to cope with now.

Since January 15th I've been in a place of profound reflection and introspection. I don't feel closed off to others in the least. I don't feel any sense of withdrawl from people that I've heard can happen in times of grief and sorrow. It is a strange thing to be dealt something that I often thought of in passing and always with a sense of fear, dread and inconceivability. "How do families deal with things like this?" "Oh my God, what would I do if ever one of the kids got horribly ill?" We've all asked those questions and we still ask those question. I'm still asking those questions, "Oh my God, what if Reo gets really sick or breaks an arm or just happens to be walking outside and some space junk lands on his head and he dies! What would I do?" I know it's insane but I don't think I'm wrong in saying that most of us at some time or another have asked similar questions about those we love. The totally flat unhelpful response one hears all the time is, "you simply do not know what you would do." There is an element of truth there, but it is such a knee-jerk obvious response, it just pisses me off. Of course you don't know what you're going to do! We don't have the foggiest idea of what Life has in store for us. However, this idea masks the truth of the matter, which is that no matter what Life deals, you will always, always, always tap into that "do-do-do" mode to simply survive. For me, it was as simple as that.

Tuesday morning was like most other mornings. We got the kids ready for school and had a nice drive into town. Aria's shoulder was still very tender but I had convinced myself that she had some kind of inflammation and I'd probably have to go pick up some prescription. I had definitely entertained the possibility of something dreadful but I really couldn't visualize that so it was relatively easy to put out of my mind. It was around 10 30 am and I was heading back to school to pick them up. Rianna had fallen asleep in her car seat in the 2 miles it took from our driveway to the highway. I vividly remember turning onto the highway having a thought that it would be so much fun to contact the Spokane Fine Arts/Drama organization at one of the theatres and see if I could maybe spend some time in their costume department. That, and I thought about getting the kids involved in some kind of drama program too. It was all very sketchy and fantasy oriented but still very fun and amusing. It was 10 45 and Doc called my cell phone, which wasn’t out of the ordinary. I thought maybe he wondered if I had heard anything from the Doctor about her lab results that were drawn the day before. This is the gist of that conversation.
"Hi hon, what's up?"
"Are you driving? On your way to pick up the kids?"
"Yeah, I'm about 10 minutes away."
"Good, I'm going to meet you at home and then we have a 1 o'clock appointment for Aria."
At this point my stomach has literally jumped out of my body and what has replaced it is a soaking wet wad of a beach towel about to be wrung beyond recognition. In addition, I felt all the blood drain from my head and begin flowing around the beach towel that is now my stomach.
"Doc? (pause) Is everything alright?"
"Uh, no it isn't. Are you driving? Are you close to the school? Ar..
"Doc, what is it?" I'm gripping the steering wheel. I notice that my knuckles are white.
"Julie, they think Aria has leukemia."
I can't speak but inside my head I'm screaming all kinds of obscenities I'll spare you here.
"Julie, I need you to hold it together for the kids. I need you to pick them up and talk to them about what we're going to do. I need you to prepare them that we may have to be admitted in the hospital."
"Shit, the hospital?"
"Doc, this is bad..this is really, really, bad."
"Yes it is. We're going to get through this..."
I'm taking deep breaths now. I've parked outside the school and the kids haven't come out yet.
"OK, I can do this Doc. I'm up for it. I'm on board. I'm there. I'm strong." I'm totally trying to convince myself. Right now my beach towel stomach is beginning to be wrung.
"I'll meet you at home. We need to pack a suitcase for the hospital, snacks and so forth."
"Got it. I love you Doc."
"I love you too, see you soon!"
Wrinnnnng...wriiiing...shhhplash...ssssplush!! goes my beach towel stomach.
But now the most amazing transformation occurs. My do-do-do button has been activated and suddenly I have all kinds of things to do. I have a check-list in my head, which is trying to suppress the voice that is shrieking nothing but "leukemia! leukemia! cancer! cancer! chemo! chemo! leukemia! leukemia!"

I can see the kids coming out of school now and it is taking every ounce of strength I can conjure not to be in tears. Aria has no idea what she's about to deal with. I don't either for that matter and I'm completely losing it but keeping it all together at the same time. The kids are great! Aria is feeling better and shows me that she has full range of motion in her shoulders. Reo can't wait to show me everything he made in school. Aria jumps in the act too and shows me all her treasures. I take a moment and notice every single detail. I am deliberately trying to be gentle in my movements, my words and my tone. My stress hormones are kicking in and I'm sweating and my towel stomach is wringing itself again. wwrrriiiinnnng! I'm convinced I'm going to vomit so I start breathing. I put the kids in their seatbelts. They are so innocent, so pure, so sweet, so blissfully unaware. I am completely devastated and don't know what to say. Tears well in my eyes and I let them. I sit in my seat, take a deep, deep breath, allowing my tears to spill over and begin heading for home, toward our new life. I tell the kids at this point, "Hey guys, I'm feeling really sad right now so don't be scared if you see Mama cry. I'm feeling sad because, Aria, you are really sick and we need to take you to a special doctor to help us make you feel better. So we're heading home and we're gonna meet Dada there and then we get to go to the hospital and meet a bunch of new friends and doctors to help us understand why your shoulders hurt." They are completely silent. They are processing this news too. They are, without a shadow of a doubt, sensing my emotion, my fear and my sorrow. I don't protect them from this. I let it be what it is. I made a silent vow to be completely honest about everything with the kids and most importantly with myself.

The drive home was long but my check-list was clicking away. When I arrived home, Doc wasn't there yet, so I decided to make everything as "normal" as possible. I made lunch for the kids. I went through their backpacks and so on. Doc arrived a few minutes later. We hugged and breathed and exchanged a look that transcended words. We went at it; divide and conquer mode. Check, check, check went the list and suddenly it was time to go. We found ourselves at the pediatric oncology clinic checking in. At this point my towel stomach was once again wringing itself uncontrollably. I couldn't believe my eyes. I noticed that my feet were firmly on the ground and I was taking in every single detail of the waiting area but nothing made any sense. I kept hearing myself say, "We only might have to be in the hospital. They only suspect she has leukemia. It still could be something else. We're here to check it all out." We go to a very fun playroom and there are a few kids playing waiting for their treatments. I'm very aware that I must look like a deer in headlights. I have this smile on my face that I'm aware of that is trying to send a reassuring message, “Don't worry, I am not going to puke! I will not puke!" to everyone around me. Wwwrrriiiinnng goes my stomach towel.

Nurses show up and Aria is already checked in. I'm feeling suspicious. They know something I don't know. wwrrrrriiiinnng. I need to sit down. I can't even tell you what they did, if they did anything like draw blood. I honestly have no idea. What I remember VERY clearly though is the hospital bracelet a nurse puts on her arm. We have not met a doctor yet who has looked me in the eye and said, "Julia, your daughter has leukemia and has to be in the hospital!" I ask her if this is standard protocol for the clinic and the nurse looks a little baffled but she is incredibly gentle in everything she says and does. "I'm sorry," she begins, "but I'm pretty certain you all are being admitted. Wasn't that your understanding?" Wwwrrrriinnnnngg Doc tells her that we understood that it was a possibility but it hadn't been decided. She smiled nodded her head and told us that indeed we are being admitted. They DO know something we don't know! I'm aware that I'm feeling completely insecure. We are led to an examination room where we wait. Aria is limp and tired. She is sensing the anxiety. Reo is totally amusing himself with some pencils. Rianna is nursing. Our oncology doctor comes in with another woman and begins to tell us what they know and understand. They indeed suspect Aria has leukemia and this what we know about leukemia, etc. etc...Wwwrrrrriiinnnngg.. I'm aware that I'm standing and wandering around like a caged lion. For some reason I find this hilarious and in my head I'm laughing hysterically. It is so weird. I'm up and down and up and down. Doc, meanwhile is steady...completely calm and holding Aria. He is all about numbers and data and I feel completely reassured by his presence. It is very much like being freezing cold and suddenly having someone wrap a heated blanket around you. We had a long, long conversation with Dr. Angela. At least it felt long. She was incredible. She answered every single question as if it had been the first time someone had asked it. She was positive and so hopeful and at the same time extremely honest and forthcoming. There were no illusions to what she made certain we understood. I was so grateful for her. The news that we would likely be in the hospital for 2 weeks or more, WWwrrrrriiiiiiinnnnnggg...was like falling down. It really was. If you will, consider for a moment he last time you fell down. It is the most slow motion uncontrollable series of events that leaves, me anyway, breathless, confused, in pain and often humiliated. This news spared me the humiliation but I literally felt like I had fallen down and hurt myself. When she told us this she was beginning to tell us other things when I cut her off. She was so gracious and gentle to allow me to interrupt her. I told her that I needed a moment to wrap my head around 2 weeks living in the hospital. I had 2 other kids, a farm, animals, school, my life, my hobbies etc.etc...She breathed deeply, nodding but saying nothing. She didn't have to. Then she told us about the treatment plan more or less and once again I fell down into the reality of 2 to 3 YEARS of treatment. WWwrrrrriiiiiinnnnngg.. At this point, I am thinking of almost nothing but how badly my stomach hurts and how sick I feel and how completely depleted of fluid my body was. My towel stomach has been wrung dry but was now tying itself in huge knots. We process more information and then Aria is examined.

At some point during our conversation I ask our doctor point blank, "based on your experience and what Aria presents with are you pretty certain that she has leukemia?" "Yes." was her response and she looked me straight in the eye. I loved her immediately. I trusted her completely. My suspicion vanished and I took comfort in knowing that they knew before we arrived what our future held and they knew how to hold our hands, open the door and lead us to the other side. The other Julia couldn't believe this was happening. This new Julia was grounded and ready to make preparations and to surrender in some ways. For the next several hours the 2 Julia's were facing each other with a myriad of emotion and thought. We were led to our hospital room where Aria was checked in again. I was so aware of everyone's face and their smiles and their softness and tenderness. It was a frightening experience in a very loving secure place. I was also very aware that I was hanging on to every single word anyone said to me. Peoples' voices were clear and what they said rang and rang in my head. When someone said, "We'll be hooking Aria up to some IVs", I was ready and was taken back when that reality didn't actually happen for hours later. The old Julia was quiet and observant. The new Julia was asking questions and trying with every ounce of my being to be considerate, articulate, and equally gentle. Everyone and I mean everyone behaved as if they were a masseuse for my psyche.

We settled into our room and I was hoping my stomach would settle. No such luck. My head ached and I was beyond tired. I was so exhausted and emotionally drained that I could no longer concentrate. It was fast approaching 8 pm and it was time for Reo and Rianna to go to bed. We decided that I would take the kids home and Doc would stay in the hospital. That was the plan for at least this night. I remember driving home telling myself to stay awake and telling my stomach that it could settle itself. I was so tired I couldn't cry even though I wanted to. I brought the kids inside and got them ready for bed as we always do, except without Aria, which felt so, so horrible. I asked Reo to stay with me in the Big Bed, which he did and we all went to sleep. I remember thinking as I turned out the light, " So long old Julia....this new Julia has something else to do." With that, I visualized taking my knotted dry beach towel stomach out to the clothesline. I hung it up and let it wave away all I knew before and at the same time act as a flag to signal the beginning of a new journey....

It’s one thing to write about a tragic event in the moment. It is something else to allow a little time to pass, thoughts to season, and feelings to become clearer. This is a difficult process. It is painful and not always helpful to everyone. Like virtually everything in life, there is no One Way to journey toward truth. We must all learn to trust our unique voice and follow that. Sometimes, however, it helps to listen to the voices of experience, those who have traveled before us and made the journey to their sign posted purpose.

I was just beginning mine and suddenly reflection became less intimidating and more empowering. Suddenly stillness and silence were the forces I sought to guide me. It helped a great deal having so many rallied around us, encouraging us with their thoughts and words of wisdom. These are some responses that people sent to me after reading my email.

January 27, 2008 (from a good friend)
Dearest Julia -
Your journal entry below moved me to tears. I am honored to have been included in the rawness of your emotions, insecurities and survival.

I can only imagine how incredibly beautiful the farm is with all the snow. I'm picturing it as I am writing this email. I trust the chickens and rooster are keeping warm and continuing to produce those yummy eggs.

Let's talk about our girl Miss Aria if we may. We are so happy to hear that she responded so well to her first treatment. What a CHAMP!! Are her treatments scheduled for the same day each week? When is her next treatment? We are thrilled to hear that she's comfortable and resuming some sense of normalcy in her life by helping Doc plow the farm. Incredible! Celebrate those moments and remember to find time to breathe.

On my continued journey down the road of motherhood I never cease to be amazed at the strength, resilience and shear tenacity of children. We surely do not give them the credit they so deserve. It's usually at times like this that they remind us what they are capable of handling. Aria is an incredible little girl. She's got amazing determination, spunk, personality, beauty, confidence and love of life. Her love of life will give her the additional strength she'll need over the next year and when she's not feeling well and down in the dumps her greatest assets; you, Doc, Reo and Rianna will be there to lift her spirits. I can't think of a luckier child.

You and Doc have done an incredible job at keeping things as "simple" and "ordinary" for her and I believe that helps her manage her anxiety. I would just like to just remind you that you are all at the very beginning of a long journey and you are by no means in any sense of a routine. This will happen over the next few weeks/months and before you know it everything won't be so hard to manage, coordinate, execute etc. Let people help you, let them do whatever it is they can to help you until you feel you don't need the help. Remember, it takes a village.

I was always really amazed and in awe of the old Julia and can't imagine how the new Julia will be any better. You are an incredible woman, mother and friend. Miss Aria gets her love of life from you. You are the rock of that family and you will all get through this. My cell phone is one and my inbox is open whatever you need - I'm your girl.

Love you so much!!

January 27, 2008 (from a friend of my Dad’s who forwarded this to me)

The details are extraordinary. I feel her pain, her anxiety, her worry,
her desperation. I cry as I read her every word. Please let her know
that our prayers and love will always be there for all of them. I
believe that is the way God shows himself-through the empathy we feel for each other.
God bless them all.

January 27, 2008 (from my sister-in-law)
Your email is beautiful - beautiful and so very sad. I can't express how much our hearts go out to you all. We are thinking about Aria every hour every day. Lots of people like Andy and Allise are asking us for updates, so the branches and support spread. We have been slow to get it in the mail but finally there is a package on its way.
Lots of love

January 27, 2008
Hi Julie my name is Maureen Briggette and I am married to Thomas Briggette who is your dad, Gene's, cousin. We live in Boston. Tommy family is so big that even after 23 years I am still figuring things out. Gene added my name to his e-mail list when I changed my e-mail address recently. I want you to know that Tommy and I are praying for you and Doc and the family. Aria sounds like a strong little girl. I know that it must be hard to have faith but through trials we develop perseverance. Just reading your blog and your words have helped us with our own trials and to be able to focus on your family and Aria who need prayers and strength from the family. I pray that because of your obvious faith that you will always see the light with your heart, when right now sometimes the eyes look toward the darkness. As God wraps a hedge of protection around you I pray that God will give more grace, strength and comfort.

January 28, 2008 (from my Dad, who became one of my most devout ‘followers’. His bias toward me is obvious and very endearing. He’s such a wonderful person!)

To all my Love Ones!

This message is really two messages in one. The first is an update relative to Aria's status through this past Saturday. The second is a description of Julie's psyche and "stream of consciousness" on the fateful day – January 15. It is devastatingly detailed, frank, and heart-rending. To know, on a first-hand report, what it feels like, what goes through one's mind, how gut-wrenching horror can be when confronted by tragic consequences is startling. It is a very long report but, I urge you! -- worth reading.

I cannot help but think that Julie's experience is God talking to her --
patiently, wisely, compassionately, mercifully. How else to explain her description of her "two selves," her pressing her "do-do-do" button? Here is, I believe, a faith we all seek -- faith in ourselves, true, but faith that we are not alone in our travail. Oh, yes, her other two children and her wonderful husband are there with her. And husband Matt/Doc is a rock for sure! But, I sense there is even more -- even beyond these and her circle of friends and others expressing their concern and identity with her in her plight. That "Spirit," "Force," "God" -- call it what you will – is the "Presence-in-our-Universe" that lifts us all to Life and our determination to incorporate It into ourselves. It is the root of who and what we are as humans.
I am grateful to all of you for your prayers, thoughts, and kindnesses in these troubling and frustrating times. God Bless you for everything you do for us!

January 29, 2008 (from my Uncle, who is also hopelessly biased!)

You should write. I feel I am there with you. I think many feel similarly. You have many gifts. I suspect if you took up golf you would give Tiger Woods a run for his money. Let it be known that I, as one of your many admirers, did not wish this challenge upon you, but are simply proud of how you are dealing with it, and are simply proud to know there are people like you on this earth. 
Much love,

I received many such emails, phone calls and letters. Every word, every sentiment, every bit of contact was as meaningful to me then as it is now. Those voices of support reminding me and encouraging me to explore my courage and my strength were monumentally reinforcing especially during those early days when I was so new to the process and so frightened and insecure.

I was thinking today as I was pulling weeds and noticing the delicate flowers of my garden that sometimes we withhold what we want to say for fear of saying the ‘wrong’ thing. It happens. We’re all going to do it at some time during our human career but let me offer this. Even those ‘wrong’ things can be right too. We learn about ourselves when we read and hear things that make us cringe or trigger responses within that we may not have known existed. The trick is rather than waste energy on the other person and what they said and/or did but spend more time examining the reaction we feel within ourselves. It is so easy to dismiss those reactions and blame others for having elicited them, but I think it is infinitely more meaningful to dismiss others for a time and examine our reactions instead.

Our first Outpatient Clinic appointment

There was no time for us to settle in to being home before we had to turn around and head back to the clinic. This was comforting as odd as that may sound. I was still reeling and trying to digest the whopping reality that cancer was going to pervade every nook and cranny of our lives. The whole outpatient experience was haunting me and I wanted to get it over with as soon as possible. I didn’t want to be afraid and I knew that the only way I could achieve that was to buckle up and face it. I wouldn’t be honest if I didn’t admit that a great deal of fear was knowing that I was about to meet and see families just like us and God I didn’t want to accept that reality. I didn’t want to be ‘one of those’ people! I couldn’t imagine Aria losing her beautiful hair and suddenly becoming a poster child for chemotherapy and cancer. I know that sounds horribly vain and don’t think for a minute that I in my admission I didn’t spend hours crumpled in a heap of filthy shame about it. I didn’t know anything about what we were to encounter. I knew baldness and chemotherapy went hand-in-hand and I knew it was bad. I just didn’t know how bad. I didn’t want appointments and follow-up to define our lives. I didn’t want to incessantly talk about cancer and I knew that I would. I didn’t want this and yet I had to accept it, otherwise I knew I would lose myself by constantly battling ‘I don’t want this’ versus “this just is.”

I also knew, in some vague way, that I’d have to muster all the strength I had within me to deal with other people. People exactly like how I was just 10 days before; people terrified out of their gourds about cancer. People wanting to know every detail but not wanting to know at the same time. People wanting to help, but not having the faintest idea how to be helpful. People, who in their fear, would eventually stop calling, stop writing, stop asking and fade into the backgroud resuming their lives as usual. I dreaded this.

It is critical to say that there is absolutely nothing wrong with how people react to this kind of tragedy when it remains so completely outside of their own truth. People very simply don’t know what they don’t know. I would have been exactly like these people I describe. I would not know what to say. I would want to say all the right things and do the right things and in my effort hopelessly fail. I would be constantly terrified and I wouldn’t know how to be present. I would withdraw and resume my life, not because I don’t care deeply but because my fear would have been greater. I knew then I was projecting this reality about myself onto unsuspecting ‘others’ but I didn’t think I was too far off the mark. I’ll mention that some were exactly as I described, but many, many more showed me courage, devotion and love that was beyond anything I could have imagined. People, in general, have taught me and shown me just how inside-out I could be filled with cowardice, vanity and insecurity, while simultaneously showing me how to turn myself right side out and become the person I was meant to be.

It is worth saying that the other thing that was beginning to creep into my psyche was the sense of reflection. Up until this time I was so busy processing new information coupled with new things to do like schedule appointments, check her temperature, monitor her bowels, look over her skin and the like that I didn’t allow much time for questioning and wonderment over the purpose of it all. I had 2 other kids to manage, a farm and a household. I had plenty to do that occupied my every waking thought. However, I knew that an existential awakening was awaiting me and it scared me. I didn’t want to have to think about it. I didn’t want to have to face the philosophical turmoil of life and death. I didn’t want to examine under the magnifying glass of my mind’s eye the purpose of my life that was beginning to unfold without my permission. I could see it almost like a sign reading, “Your Purpose” nailed to a post off in the distance. I knew I’d have to travel there and it seemed really far away and the terrain was like nothing I had ever known. I was unprepared and tempted to subscribe to ‘being busy’ as opposed to doing what I knew I must which was ‘to be still.’

January 25, 2008
Subject: I LOVE YOU

Goddesses, I LOVE YOU!! This is a VERY big day. Our first outpatient clinic day with a procedure. I'm stressed. Aria is wandering around whining saying, "I hate it.", regarding taking her meds. Sigh. This is tough stuff. So there’s a lot going on. However, I have to tell you that Rebekka's gift came in the mail. I am without words to describe it! I've looked at every single piece and picture; not a quick glance but also not a "hold each one, take several minutes to absorb all the detail". That will happen here in the next few days. For now, I've handled each picture, feeling a little light-headed because each one has blown my mind and taken my breath away. It is a work of art...a treasure that I will cherish for all time. It will be something that in 50 years when I'm well into my 90's, all the pictures will be faded but they will be engraved in my mind...perhaps it will be the only thing I remember at that time...still, there it will be and it will be a place to seek and receive comfort and love.. THANK YOU!!! I have got to hit it into high gear and get ready to take Reo to school and Aria to clinic. Big day....stinky stressed.....breathe breathe breathe.......please keep us in the light!
I can't begin to tell you how lucky I am to have you. What I wouldn't do to share you with the world. Everyone would be so much happier!! ~queen

January 25, 2008
Subject: Procedure #1 done!

Aria tolerated the procedure (spinal tap with a chemo drug put in her spinal fluid) and a bone marrow biopsy very well. The procedure itself went really fast..less than 45 minutes. She went under really easily and recovered exceptionally fast. This mild sedation business is SOOO much better than the general you get with a big surgery. Amazing. The day itself was hectic but ok. It was high energy but manageable. I dropped Reo off at school, came home and picked up Aria and Doc and we all headed to the hospital. We arrived a little after 9am, which was great. They took her vitals and got her prepped to "access" her, which meant putting in her port plug. It went really well. She didn't feel a thing, but still cried out of the newness and fear would be my guess. She was incredibly brave. She was also VERY hungry and kept whining that she was just starving! Poor thing, she just wanted scrambled eggs. Her procedure wasn't scheduled until 12 30 so we had a long, long wait. It all went pretty fast though and the fact that I had to leave a little after 10 am to go pick up Reo helped a great deal. It was a nice change of scenery. I won't always be able to do that but it was good today. Doc is planning to be at as many procedures as possible, which is so HUGE! So Reo, Rianna and I came back to the clinic around 11 30. We still had an hour to kill. S.T.A.R.V.I.N.G!!! The other hard thing was that Aria was so fussy and hungry she was fading, just needing to be held, carried and so forth. I felt so bad for her, but then it was her time and they took her back and before I knew it she was back. She was allowed to eat and boy did she ever! She ate a bagel with cream cheese, an orange and some oreo cookies! Then she had her chemo treatment and we went home where I promptly cooked up 3 eggs, which she inhaled with some sour cream! VERY happy little girl! The effects of the chemo are starting to hit her now. Her disposition is changing a little. She’s fussy, and a little achey. She also complains of a little sour tummy. That part is so hard because you know when you get so hungry you almost feel sick to your stomach? It’s hard to know if you feel sick or if you'd feel better if you ate something. That's her problem now. We're learning. She ate more eggs a little while ago and we'll watch her.

Her labs came back great today. She didn't need a blood transfusion for the procedure and we'll just be watching that every single time. She's strong and in good shape and we feel really encouraged about that. Things could change in a matter of hours, so it is a scary limbo we’re in now. So far, we only have to go back to the clinic next Friday and we're hoping that will be a chemo appointment only. I met a mother today with a 6 year old daughter who also has A.L.L. They are fast approaching the maintenance phase. Her daughter was hospitalized for the first month and in and out of the hospital pretty much constantly. This sounds dreadful and I have to gear up to deal with that. But here she is on the other end doing really, really well. Amazing...truly amazing!!

Rianna is sound asleep in my arms. I'm going to go lay her down. Reo and Aria are upstairs watching a Scooby-Doo movie. I have got to fold some laundry and do some general picking up. Since we've been home from the hospital, I feel like there's crap just everywhere. It’s making me nuts!
LOVE YOU so much!!

After this procedure day, my senses were inundated with a reality I knew was mine and I hated it and revered it. All those patients and their families….they were a part of me now. I slowly began to understand what that meant. Their stories were my stories. We were being woven into their lives and they into ours on a loom with infinite thread spanning the spectrum of color.

The moment we got home, I knew I wasn’t going to be able to resume life as usual. I wasn’t going to be able to ignore the questions, the pondering and wonderment of what we’d been dealt. I knew we’d never go back to a ‘normal’ life. It was like I had blinked and suddenly everything before me had changed and I’d never be the same again. It was then that I began to embrace being still, being silent and allowing my voice to finally be heard.