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.

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 time..be 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!
~j




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.

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 know...you'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."
"Leukemia?"
"Yes."
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?"
"Yes."
"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!"
Click.
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....
~j


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)
Gene,

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!)

Julie,
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!!
~queen


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.

Moments

Nearly a year into the journey, I was talking to Krista about a mother who was watching her daughter die. It was for me such a spiritually leveling thought that I could hardly breathe. Krista mentioned that often what happens to people at that stage of the journey is that they ‘have moments’ with their children that will sustain them after they have died. At the time, I remember thinking, “All she has is moments?” It was a heart-breaking thought to know that life was whittling away to just a few precious moments and I found myself both angered and awed by that idea.

Moments have become something I have considered a great deal since that December 2008 conversation with Krista. Moments have indeed become the very defining elements that offer meaning at any given time throughout my day. It’s tempting to give consideration to only those moments that feel good. I have learned, however, that even the hard moments offer invaluable lessons. So, I have been focused on creating a life that is filled with moments as well as moments that are filled with life.

I’ve been going through pictures and it seems so strange to have been savagely turned upside down in the course of a day, followed by weeks of trying to find footing in a new reality all the while having moments of real joy, beauty and bliss.

These moments are indeed sustaining. I look at these pictures and they are in a setting that is overflowing with sterility, stress, death, fear, and despair and despite all that, the spirit of delight shines through. I remember wondering if I was really feeling happy since I could barely feel in general. I thought perhaps I was going through the motions of exuberance in order to keep the kids’ spirits up. I look at these pictures now and realize that I had moments of true happiness with my family despite everything. These moments are cherished. They are, afterall, all we have and all that matters.


Aria playing with a beloved puppet that Krista brought for her.


Reo showing off his missing teeth!


Aria with 2 of her best friends: Amy and Bethany.


Aria receiving her FIRST dose of chemotherapy (vincristine). She was blissfully unaware and perfectly content watching a movie.


Doc and Aria having a playful snuggle.

We're HOME!!!

Tragedy redefines life in the most brutal of ways. We are ripped of the belief that we have control, that life has an order, and that fairness exists in some capacity. When fate comes knocking with a menacing fist, suddenly we learn, we see and we understand. This aspect of the journey was a difficult one for me and I’m still challenged by it.

One the interesting elements in this wicked shift from what I thought was real to what was surreal to what was a new reality was how easy it could be while swirling around what was enormously punishing. I had a robotic motion during those days of endless learning that it seemed almost effortless There was a strange sense of comfort taking place and I owe a great deal of that security to the myriad of professionals, who descended upon us. We were getting to know nurses very well. Dr. Angela, was becoming more and more familiar and more trusted. I finally learned her name and began calling her Dr. Trobaugh. Krista, the child life specialist assigned to Aria, visited every day and was a wonderful sounding board. There was a genuine gentility and compassion coming from nearly everyone we encountered that suddenly the thought of going home was terrifying. Being home meant doing everything on our own. It meant outpatient visits that were completely foreign. It meant rather than observing and watching this new life unfold, we were actually going to have to live it. It meant encountering other families and their kids. It meant that it was real! Leaving the hospital meant that now every aspect of our lives was going to be touched by cancer and that was a big bitter pill to swallow. Still, I was aware that leaving the hospital meant wellness to some degree and that was a mighty wind upon which to sail into this next chapter.

January 24, 2008
Subject We’re Home!!!!!

Yippppeeeeee-yaaaahhhooooooo!!!
I want to thank you all once again for the wonderful emails, letters and presents! It is so humbling. I am also deeply grateful for all the amazing words of encouragement. So many have expressed their confidence in us and you have no idea how we draw strength from that in virtually everything we are doing and facing; not the least of which comes into play every time we draw the syringe full of more medicine for Aria, knowing it may make her feel like crap and at the same time is saving her life.

We arrived home yesterday. Doc was absolutely elated. I, on the other hand, was so stressed and anxious that I could barely think straight. Being home for me is incredibly daunting. The outpatient life is going to be so challenging in many ways. We go into clinic at least once if not twice a week for the next 4 -8 weeks. Most of the appointments are for chemo and checking labs and so forth, but 'procedure' days are big. Tomorrow is one of those days. She is scheduled for another spinal tap and bone marrow biopsy at 12 30 and we are to check in at 9 am! You got it, 3 1/2 hours EARLY. This is because they need to check all her lab work and then wait to get the results, which will ultimately determine if she needs platelets or a blood transfusion to sustain her through the procedure. Then we wait some more. Then she's prepped for the procedure, followed by more waiting and so the day goes. I expect to be home by 5 pm. Reo has to be dropped off at school and picked up and then entertained for the afternoon. Yes, I will be trying to solicit some help but not for tomorrow. I want him to be able to experience this kind of day first hand with us so he'll know what to expect later. We are sticking together as a family through this as much as possible. Still, it’s a juggle. Luckily, Doc is off work and will be completely available here. So tomorrow, I’ll drop off Reo, take Doc, Aria, Rianna and myself to the clinic. We check in and start feeling our way around this new outpatient world. I'll leave shortly after 10am to head back to the school with Rianna to get Reo and then we'll head back to the clinic to be with Aria before she heads into her procedure. There is always the chance that they could take her early, but there's just as much of a chance that her procedure will be bumped until later. Key word here: FLEXIBILITY! The results of the procedure will dictate what happens the following Friday and if we need to come in more than once.

It is intimidating to me because up to this point Doc has been with me, there will be plenty of times when it won't be possible and I'll be on my own. Yes, I'll be able to ask some friends and I hope they'll be available but people have their own lives to worry about so I feel it is in my best interest to muscle up and face this as if I'll be on my own.

The other thing that has me wildly anxious is the whole thought of Aria getting an infection/fever and me having to drop everything to rush her to the hospital. I've been given a specific temperature to watch for and if she reaches that point I've been encouraged to get her to the clinic within 30 minutes. Very emergency oriented, which is completely out of my comfort zone as it is for most people. I've also been warned of many other things to look out for and to call the clinic and be prepared to come in; bleeding, bruising, vomiting, lethargy, etc..etc.. I met a woman with a 3 year old with A.L.L who said during the first 6 months she had a hospital bag packed and ready to go in her car. Great idea and I'll be doing the same. It is a terrifying thought, but it is our reality and something we absolutely just have to count on. It feels like a ticking time bomb and like I said, I'm terribly anxious about it. I'm well aware that my anxiety is based on the unknown; the 'what-if' scenarios but there it is. I’m nervous. Once again, this is a conflict between what my mind knows and what my heart feels. I will be spending more time in reflection, so I can find some peace and gain some mindfulness. The first thing I'll do is pay more attention to my breathing. I just noticed that I'm not breathing mindfully but taking short shallow breaths. I also know that once I experience an outpatient appointment, get to know the staff and how things operate I'll feel better. Right now I have no experience and thus no confidence. I'll get there. Information and experience are key ingredients to the cessation of fear.

The other thing I need to do is face the obvious and that is that Aria is doing exceptionally well! We had an eight day hospital stay. Many kids find themselves in the hospital for the entire "induction" phase, which is the phase we are in now. It is the heavy hitting chemo with a 28 day 2 times a day dose of the steroid, which is nasty ugly. So far it has been ok, but I hear it gets really bad toward the end...grumpy, moody, nasty kids...breathe!!!! just breathe!!!!! Still, Aria has tolerated the chemo well as well as her other meds. She's needed very little pain medicine in the last 24 hours and has complained of her tummy "rumbling" and "feeling funny" for which we have given her an anti-nausea med. She has a great appetite, slept through the night last night, played in the snow today for 10 minutes, played and played. Her spirits haven't been this high since Christmas! It was wonderful. She is pale, though, very, very pale but really doing well. I am reminding myself as I write this to celebrate that. Those moments of today and to erase those moments that don't yet exist! ahhhhhhhhh breathe!!!!!!! She's totally prepared for tomorrow and knows that she'll go into the procedure room and have a nice dream. She's also beginning to wrap her head around the idea that her hair is going to fall out. We've been talking about it quite a bit. I think we're going to have some kind of hair cutting party next week. I was told to prepare her that she'll notice her hair falling out probably as early as this weekend! YIKES!!! I'm not completely ok with the idea to be perfectly honest but I'm open. At least, I'm getting there..to that place of accepting the inevitable. She did mention to me this morning, "Mama, I just don't want my hair to fall out!" I told her, "Me either.. I don't want your hair to fall out but the good thing is that it will grow back and you can decide if you want long hair or short hair!" She smiled and shrugged her shoulders. We're facing that bridge and we'll cross it. I may have to create some kind of "Hair Fairy" that visits her in the night and brings special presents. I’m sure glitter will be involved. We'll see...

Reo is doing well. He lost his other front tooth this morning! VERY adorable. He keeps it so real and for that we are so grateful. In the hospital there was this amazing 'I Spy" display of all kinds of pirate things. Reo LOVED LOVED LOVED the fishing net of all things. Today I gave him a real fishing net to tell him just how proud we were of him. You would have thought I had captured the moon and handed it to him. He is such a sensitive little guy. "Look everyone! Look at my beautiful net! Oh, Mama...I just love you!" He said these things with his whole heart too. Rianna is Rianna...Can't say much more than that. She is so easy going but also has this baby orangutan thing going on. Ijust can't put her down and when I do she bends her legs up trying to wrap them around me. It is the cutest thing. She is also WAY into giving me hugs, which melts me every time!

On a much different note I had an observation today that was striking. I haven't prayed. Not once. Not even to light a candle. Not even tosend up a thought. Nothing...I'm amazed.

I want to be very clear that I don't hold God accountable for any of this. Some have shared their wonderment with me, "Why does God do these things?" at the same time they share with me the mystery of God's way that is inherent in the question. Biblical passages typically follow as some kind of "proof". Uncle Seamus, I think of you whenever I think of Proof and God in the same sentence. Makes me laugh! I've heard a lot lately that God does what He does and we don't understand it. Forgive me, but that thought has not resonated with me at all. I don't think God had any hand in this nor do I think God has had any hand in the process so far. Reo's teacher said, "Praise the Lord!" when I told her that Aria was responding so well. At the time it struck a nerve and bugged me to no end but it wasn't until the next day that I figured out why. As Aria was responding well, it never occurred to me to thank God, but instead to thank the miracle of modern medicine, as well as her amazing doctors! I feel completely indebted to them. I have not found myself bargaining with God saying things like, "God, if you spare Aria this pain and agony, I will......." It’s so weird. For me, God hasn't been in the picture at all. I don't blame Him for doing this and I don't praise Him for how things are working. I have viewed this experience as nothing more than the human experience. It is a part of being a human being. This isn't to say, however, that God doesn't exist for me but it has seriously put into question what that looks like. Mimi and Papa, (my parents) I have some guilt in admitting this but my understanding and relationship to Christianity is changing. Therefore, my view of God and what God is or isn't is also changing. This may not come as a surprise for it has been changing for the past 2 decades, but this experience has been the first real tangible examination of what God actually means to me. God has been very present in the way in which people have responded to us. That spirit, that generosity, that collective energy that forces people to connect and reflect. It is this LIFE energy that has been the most God-like for me. Do I have Faith in God's will? That is some question and the answer for me is that I have tremendous faith in Life. God is no longer this outsider looking in, this separate entity, a heavenly Father. God has become a tangible force that has connected me to Life and to all the goodness of Life because of the tremendous love people express and their shared desire to minimize suffering and maximize kindness, sincerity and truth. I am very grateful for your prayers and thoughts...I firmly believe it creates power that is beyond our understanding. Is this God? For some the answer is an unwavering , "yes" but for me, I'm very comfortable in my uncertainty for I know that whatever "it" is, it is good...

With that, I'll say goodnight and I'll let you know about the day tomorrow and all the incredible things we learned.
All my love, ~j


This photograph was taken with a cell phone in the car on the way home. Aria couldn't stand the sun in her face, which is why she's hiding under her hat!



This photograph was taken with Doc's cell phone in Aria's room the first morning of her being home. She had just woken up from a good night's sleep. I find this picture rather haunting in an exquisitely beautiful way.