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.