The Face of Despair

This email was one of several that was truly cathartic for me. It felt like I put it all out there for everyone and anyone to see and I didn’t have a single care in the world about it. I was in the moment and wanted to share what that moment was like. We all have these moments but we’re private about them and I was too. I felt compelled, however, in this instance to dismantle the myths associated with bravery and courage and strength. This moment taught me beyond a shadow of a doubt that when I’m seemingly my most vulnerable, I’m in reality my truest self. Vulnerability is not weakness but dishonesty and insincerity is. Truth, although painful sometimes, is the only sustaining force that will enable one to endure the battle of Life. It is the weapon of choice for the courageous, the brave and those who dare to be real. I’m simply trying to be one of them.



February 11, 2008
Subject: the face of despair

I hesitated sending this photo taken of me this morning February 11, 2008 but I’ve decided to go ahead for several reason, not the least of which is the need to “keep it real”. So often we hear tales of another’s sorrow and despair but we never really see it. The phrase, “she puts on a brave face” has been ringing in my head all day today and I wonder what exactly that brave face looks like. Is it a face that only smiles and hides the sorrow I think people actually want to witness on some level? Is it a face that is rigid trying to mask despair? Is it a face that shows all emotions when they arise? I don’t know the answer to these questions. I only know that when I feel anything, I feel it deeply and completely. When I feel blue, sad, sorrow or even despair, I have learned that I need to sit with that particular emotion a while. It isn’t my preferred state of being or state of mind, so it is imperative to me to understand why it is presenting itself so that I can reclaim my more comfortable state of mind, which is joyful. I’ve come to realize that my emotions last week of irritation and agitation waned into a dark despair that I carried all weekend long. I can’t say that my sorrow is related to anything in particular, rather it is related to everything in general and that everything became overwhelming these last few days....

I am very happy to report, however, that since this morning, tiny miracles have happened throughout the day that have helped me purge this sadness.

For days my emotions have been just below the surface of my being and they would spill over occasionally and with little warning. I kept having this sense of dread and yet nothing specific would come to mind. It was this constant nagging presence that was picking at me. I felt as if the hope that people were continually giving me and what I was so desperately clinging to was turning to vapor before my very eyes. In its place was darkness and anxiety. I found myself worrying about Aria and I can’t even tell you what exactly I was worrying about; nothing specific and yet everything. I found myself thinking about her being so sick and so fragile and so weak and quickly I would here a voice “shhhhhhhing” me saying things like, “She’s going to be fine! There’s an 85-90% cure rate! Her doctors are so optimistic! She’s doing great!” Another voice would counter with, “Yeah, I know, but what if?.......” I knew this was the voice of anxiety. It always is. Anxiety is the master of creating situations that don’t yet exist and never do come to pass. Still, there it was, following me everywhere I went and with everything I did. I couldn’t escape its grasp and I became so sad, so, so sad. I mentioned to Doc what was going on and how I was feeling so conflicted about what I knew in terms of how I ought to feel so positive and yet I was feeling so negative. Doc, as only he can do, said something to me that nailed my reason for despair. He said to me very gently and tenderly, “Honey, there are no promises and no guarantees.” The air was sucked out of my lungs in an instant for that was exactly my dread. We have to believe and do believe that Aria will be fine. She will be cured and she will go on to live a wonderful and beautiful life but....
Just before I snapped this picture with the handy computer-cam we have, it hit me. For the last few days, this nagging dread, this looming despair has been invisible in a way. So I figured out how to see it.

“Ol’ Henry”, our farmhouse, has a quirky main entrance. When you come through the front door, you are immediately in the dining room! It is so weird and at the same time so grand! It is the meeting place and it is the place where we sort and organize for the day. It is the central station of the house. Over the weekend I noticed that I was resisting the front door. There was an energy there that I didn’t like. It was strange and cold and dark. There was an extraordinary feeling of oppression, not around the farm or the house as a whole, but only the front door. I realized this morning that the oppressive, dark, cold, energy I was so aware of at our front door was Death.

This is the unmentionable. It is the thing we don’t talk about, we don’t face, we don’t include in the pool of options. It is something we all know is the ultimate inevitable but it so rarely lingers on our front doorstep. Yet, that statement isn’t exactly true, is it? We can feel so peaceful about death knocking on the door of someone who has lived a full life and seems ready to go. It seems natural and it is. For many, the process toward death is one of a lingering presence that changes as the inevitable draws near. I don’t know what exactly that change is. I imagine it to be a gentle knocking and an acceptance of knowing what is knocking and then an eventual welcoming as the door is slowly opened and death enters.

It is in no way acceptable that death knocks on the door for children. I think we can all agree on that one! I know many find comfort in looking toward God, knowing he has His reasons for taking a child so soon. I don’t find any comfort there. I have my ideas of heaven and hell and death in general, but that is another email. For now, death is lingering on our doorstep. Our 4 year old daughter is at risk and I must surrender everything to a process I don’t fully understand and certainly have little control over. Rest assured that I don’t hear any knocking nor do I see any attempts to knock. Death is merely a presence..a dark cloud that I go through every time I open the front door. I deliberately take a deep breath now and I stand straight and confidently. My head is held high and I tell myself that we are, in this moment, all alive. I walk through death holding Aria in my arms knowing it is not her time.

Once I realized this, once I had a visual on the source of my despair, I saw my despair join death and I left them together.

“She puts on a brave face!” I am quite certain that I am as brave when I smile full of joy as when I cry with tears staining my cheeks in sorrow.
~j

Aria's habits

I know I’m repeating myself when mentioning the effects of steroids. It cannot, however, be emphasized enough just how profound the changes were and how deeply effected we all were by them.

Giving Aria steroid treatment is something we have to do to this day as part of her chemotherapy. We accept this as it fits in the entire package of treating her cancer. What is so hard to accept, however, even now, is that she has cancer. You may be reading that thinking, “Really, even after a year of dealing with it you’re still having a hard time accepting it?” I would answer an honest and hearty, “Yes.”

On one level I feel defensive and want to say, “Of course I accept that she has cancer. It is what it is and we’ll do whatever is necessary for her!” On another level however, it isn’t that I don’t accept the reality of it, I’m simply still shocked by it. I can’t believe it. Still! It makes me wonder about death, for example, and the initial shock that happens followed by years of what I think would be like shock waves. Moments of heart-wrenching grief and sorrow that sometimes appear out of nowhere making one fall to their knees in sorrow and longing for the deceased. I suppose any tragic event could elicit these shock wave type moments. The steroid treatment is shock wave that I face with Aria every month. It is one of a myriad of things about her entire cancer experience that is shocking and perhaps that’s why it takes so long to accept. Each little thing has to be faced, processed, grieved, accepted and eventually transcended. This is no over-night task. This is not something one accepts and then is able to ‘move on.” Maybe some people can do that, but I’m not one of them.

In many ways I’m still grieving and when I read this email about the incredible changes that happened to Aria in such a short time, it brought me instantly back to that month of wondering if she’d ever come back. The changes were so severe that I kept wondering if I ought to be preparing myself for her to remain this way. It was almost impossible to imagine her coming back and what that would look like. It is essential that I mention that the changes were entirely steroid driven and were in fact temporary. Aria is back better than before!
Subject: Aria’s habits
Date: February 11, 2008 2:59:49 PM PST

In the last week or 10 days, Aria has developed these odd little
‘self-comforting’ habits that are fascinating to observe. On the one
hand, I watch her like a scientist and I feel almost emotionless. I
observe and collect data. On the other hand, I am her mother, so it is all I can do not to be in tears consumed by an overwhelming sense of sorrow. I’ll have you know, I have no problem with tears or with sorrow, but I do have a problem with being consumed by both so that is part of my present battle. I am fighting against being consumed by my anxiety and sadness. Staying in a place of consumption does very little in the big picture of goodness.
Since Aria had her haircut, her ears have been exposed. She loves them! It is like she has discovered them for the first time and perhaps she has because up until this time, they have been hidden beneath long hair! Although, now that I think of it, she wore her hair up a lot and her ears were exposed then, so I think it is safe to conclude that this fascination has more to do with steroids, boredom and comfort than a new physical discovery. Regardless, she plays with them constantly! She folds them forward and back, tucking them in toward her ear canal. She’s also taken to picking at her lips, which has become a little nasty. Her lips are dry and pick-able, but this is something I am urging her to stop doing since infection and lip sores are common enough already. So, I gave her a “lipstick” that she can call her own. I’m hoping that she’ll take to rubbing on the lipstick constantly instead. We shall see.
She also likes to rub her pointer finger over the top of her eye. She gently takes her finger across her eyelid just below where the bone defining where her eye-socket is. Occasionally, she’ll bring her thumb into play as if she’s going to give her skin a little pinch. She is puffy now so I’m sure her eyelids feel swollen and weird, which is why she wants to play with them. I can’t help wondering if she has a strange new sensation when she blinks. It makes me think of how my face feels after going to the dentist and getting numbed up. I feel as if my face is swollen and I can’t help but touch my cheeks to see how disfigured I’ve become. I wonder if it’s a similar feeling for her.
The last thing she’s started doing is to gently pick at her cheeks near her mouth. This is actually quite adorable. She’s taken to eating toast with butter pretty much every single day a few times a day. Toast creates a cascade of crumbs that stick to her mouth and cheeks when she eats. She meticulously picks off the crumbs and continues this new sort of grooming long after the crumbs are gone.
Imagine for a moment putting those three behaviors together. There she sits cross-legged at the kitchen table. When she’s done eating, she often likes to remain in her chair with her head resting on an extended arm. She’ll sit there with only her thoughts. Sometimes her eyes are open and sometimes not. She likes to take her right hand to her right ear and flick the top of her ear over. Her fingers flick and then move to her lips where she gives a quick pick and poke and then upward to her eye socket where she gives her right eye a methodic rub and then her fingers trail down to her cheek where she picks invisible crumbs. Her fingers then race back to the top of her ear and the process is repeated. She can do this for a long time! She’s completely calm and nothing about her movements are stressed or hurried. I sense that she is giving herself some kind of pleasure..a mindless way to pass the time that keeps her connected to the body that is changing so rapidly and feels so sick. I wonder if she feels separated from herself somehow. I wonder if this constant touch keeps her in contact with herself.
These changes have been subtle and slow as I’ve told several of you recently on the telephone. I received quite a bit of warning about possible changes so I felt quite prepared in some ways. However, I’ve come to recognize that these changes are very similar to the process of change I experienced when I was pregnant. I read everything I could possibly get my hands on when I was pregnant with Reo. I noticed that after I had memorized the present month I was in I would skip ahead to the next month or 2 just to see what lay ahead. I remember the anticipation of the changes. I remember wanting to feel pregnant and look pregnant and that feeling and look seemed to take forever! Until suddenly one day, voila! no denying it, I was a butterball! It seemed in some ways to happen over night and yet I know that the changes were subtly happening over days and weeks and months. This is exactly what’s been happening to Aria. As I look at her mood now, which is withdrawn and sad, I can recall the slow process of getting to this point. I was told that she would be hungry and her mood would swing, for example. Indeed over the last 2 weeks she has steadily increased her diet. I hasn’t been like she wants to sit and eat an entire turkey. However, she wants noodles for breakfast and within 30 minutes is hungry for yogurt and she can eat an entire bowl and 30 minutes later she wants toast. It is a constant need to eat something throughout the day as opposed to eating enormous amounts of food at once. Her mood is interesting in that she is 4 years old and already susceptible to an array of emotion throughout the day. What has changed are the triggers that set off her emotions. Toast falling on the floor is life shattering. Having 4 pieces of toast on the plate instead of 2 even though she’ll eat 4 pieces is just too much for her eyes to digest. Rianna coming too close to her makes her scream in a panic. She hates taking a bath, something she loved to do before she got sick. These subtle little changes have created in her a magnificently different Aria. It is a process and we are weathering it as best we can. It helps to document to it and I thank you for providing the venue in which to do just that!
~j


Aria mindlessly picking her lips. You can see how bloated she is and how distended her belly became.


Aria is bending her ear into her ear canal. You can sort of see that her lips are completely dry and covered in sores.


There's another picture of Aria looking at the camera when this series was taken. Most of the time, however, her eyes were closed and this is was her pose.


Even when trying to be playful, she would rub her eyes, face and toy with her ears.

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!
~j


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
steroids!"

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.

~j

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.
~j



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.