Monday, August 24, 2009

September and Aria

This is an all time FAVORITE photograph of Aria!

September 9, 2008
Subject: September and Aria

I thought you might enjoy some recent pictures and an update!
It is Sunday September 7, 2008. I'm sitting in our library and the window to my left just slightly behind me is open a bit. I can hear the leaves blowing in a gentle breeze as well as one of the many wind-chimes hanging from a nearby branch. The atmosphere on the farm today is tranquil as autumn begins to peek in subtle little ways. We've been harvesting honey plums, basically eating them by the dozen right off the tree. The skin of these apricot size gems is a custardy-yellow when ripe and when bitten into gives a marvelous sensation of puncturing something taut only to be rewarded by a burst of sweet juicy plum nectar. The fruit itself is a golden honey color. I prize these plums above all other fruit in our orchard and this year we were rewarded with a kingly sum of them. We have two peach trees that are both, unfortunately stressed. One gave us our highest yield of the sweetest peaches you've ever tasted but I'm afraid this bounty was the tree's final gift. We'll have to cut it down later this season. The poor thing is shedding its bark and losing limbs right and left. Still, we picked a large basket of peaches warm and ripe. Rianna and I ate several on the way into the house from the garden the other day. The other peach tree is weighted down by another nice yield that is about a week or 2 behind and so we'll be harvesting that tree soon. It looks a bit sad, if trees can have such emotion and I do believe they can. We'll have to plant a few friends for it to help boost the morale in Namaah's garden, which has been horribly neglected and is now shockingly overgrown. One of our apples trees has shed most of its apples, which are now lying at its base. The yellowjackets love them and I love that I have easy squashing access as they linger in their greed for more and more apple treat. Yellowjackets, this time of year, are just plain predatory, stinging unprovoked and with a sneaky silence that I abhor. I smash them, step on them, squash them and pulverize them with sickening pleasure, I'm afraid. So, I'm not too dismayed that this one tree has sacrificed its fruit in this regard. I'm quite grateful in fact. I found an apple on the ground that had recently dropped and ate it with pride as I snatched it from some yellowjackets, who I'm certain were thinking it was another tasty morsel for their beastliness. Our other apples trees are doing quite well and we should have a nice showing of fruit in another few weeks. In terms of harvest, that is all I have for this year and I don't have any regrets about it. There is some sadness to be sure, but I simply could not manage our gardens this year and that is sometimes the way of Life.

Aria had a full follow-up appointment on Friday, August 29, 2008, which seems like a long, long time ago. This appointment celebrated her first month of maintenance treatment and I must say she is doing exceedingly well. Aria's blood work for that day showed that her ANC dropped significantly to 1600 (2 weeks prior it was 5700), which is near the maintenance target of 500 - 1500. Dr. Trobaugh was very pleased but slightly cautious because Aria's body has not yet fully maximized the medication on board. When we go to clinic this coming Friday September 8, 2008, which is the 6 week mark of maintenance, we ought to have a better idea of how well her body is metabolizing her current chemo regimen. It is possible that her numbers could tank making her more susceptible to infection, which means that we trim a dose to see if her numbers come into target. It is also possible that her ANC will stabilize within that range and we'll be good to go. We just don't know, which is why close 2 week monitoring is so essential for these first few months.

Overall, however, Dr. Trobaugh couldn't be more pleased. Aria's range of motion in her ankles and legs is much improved and the exercises we are doing at home have helped considerably. It appears that leg braces are probably not going to be in our future any time soon and I am so very relieved about it. It is worth saying that I am open to pursuing them if I absolutely had to, but what a blow to the sense of healing that would be and I'm grateful that we don't have to pursue it with any urgency. I was able to tell Aria's physical therapist that I did not take her recommendation and run with it. I felt it was important to be perfectly honest with her and let her know that despite my understanding of what she was telling us and recommending a month ago, it was simply too much for my mind to deal with in that moment. She was so gracious to admit that it never entered her mind how news of leg braces, even used temporarily, might affect me. She stood before telling me that she felt bad that she never considered my perspective in hearing this new. 'How it must feel like yet another huge hurdle to deal with on top of everything else we deal with', she was saying. She told me that she was so focused on fixing the problem that she didn't fully consider the emotional ramifications of her recommendations. I don't blame her in the least for my feelings nor do I hold her responsible for them in any way. She is a wonderful professional doing her job, making appropriate recommendations. There is absolutely nothing wrong with that. What I needed to do in terms of letting her know how I felt was simply putting to ease my conscience knowing that I had deliberately disregarded her suggestions. I felt it was important to explain that it wasn't just a matter of noncompliance. I thoroughly believe that she was grateful for my honesty and I know I feel better having told her.

Our meeting with Dr. Trobaugh was by far the most social of any meetings we've had to date. I had 2 items on my agenda for discussion both of them involving the dental appointment we recently had. I shared with Dr. Trobaugh that on a very personal level I was emotionally caught off guard at having to complete a medical history form in addition to hearing the news that chemo has some negative effects on teeth. These things, as you know, were very hard in that moment and I was unprepared. Again, it is a situation where I don't blame anyone for not giving me a heads up. In fact, Doc reminded me that when we were in the hospital in January Aria was evaluated by at dentist. For all I know, he told me specifically that chemo would cause discoloration and increased decay but I have absolutely no recollection of it. Dr. Trobaugh listened with her serene presence and thanked me for reminding her that these are the kinds of things that parents need to hear as they approach this phase of treatment. In the back of my mind I was thinking, "You are such a total Goddess! As if you don't have enough to think about. You now have to prepare parents for the emotional rollercoaster that appears out of nowhere when attempting to do something normal." I told her that I wasn't sure how parents can be prepared for such things. On the one hand it would be good to know, but on another it is facing yet another 'thing.' Certainly this kind of information would be better to process approaching this phase of treatment versus any of the others.

Personally, this phase is a place where I can rest in my confidence in the entire process. For instance, the medications are no longer new and intimidating. Cleaning and boiling syringes is now common place. Checking the calendar for appointments and follow-up visits is second nature. Navigating the clinic itself and all the people who work there is like visiting a familiar comfortable place filled with friends. This is all coupled with the fact that Aria is doing well. She is virtually completely back to herself. These are incredible changes that have taken 8 months to achieve and it is only now that I'm ready to process new information and do things that are normal and regular. Dr. Trobaugh very humbly took my experience as a reminder that other parents might appreciate the heads up on these weird little unexpected experiences when they approach phases in treatment that allow them more room for normal activities.

We discussed the two issue on my agenda; the overall health of Aria's teeth and the risk for damage to her permanent teeth. I was so relieved to hear that Dr. Trobaugh does not believe Aria's teeth are at any greater risk but reinforced that the recommendation that we have her evaluated often with increased dental cleanings.

Aria was checked out head to toe. Dr. Trobaugh was beaming. Her head was nodding yes constantly, just pleased as punch with the progression of her treatment and healing. We spent a good deal of time reviewing her medication and dosing and she reminded us of the importance of close monitoring these next few months. After some wonderful exchanges about family and fun we were on our way.

Before you get any ideas that this rather fun meeting was an "in & out" kind of deal, let me say that we were in clinic for over 3 hours. Our meeting with Dr. Trobaugh came at the very end just before Aria received her vincristine via her port. In the interim, we were in the playroom playing with toys. Aria roped a volunteer into playing a horsey game with her that she refuses to let me play. "No mom! You don't know how to do this!" I didn't realize this about myself, but apparently I'm a complete moron when it comes to playing with PlaySkool farm animals. Reo contented himself with the stacking blocks tumbling all over the place. Rianna was very busy in the kitchen making all kinds of plastic gourmet delicacies. Doc was able to do a little reading and I was in an exceptionally chatty mood.

I have to say that I had two of the most genuine conversations with two mothers in very different phases of treatment. I saw the family from Montana and they've been living at the Ronald McDonald house for the last 6 weeks unable to go home because their daughter was just finishing her delayed intensification phase of treatment. They were now waiting for her counts to increase so they could go home, rest for a few days and then return to begin maintenance. I can't imagine how exhausting, emotionally and physically, their journey has been. The mom and I really connected for the first time and she wanted to know what maintenance was like. For the sake of clarity, our conversations have always been sincere and the genuineness that's been missing in some sense has everything to do being guarded. I'm fully aware that many, many times I have presented to the world a guarded face, a guarded heart and a guarded spirit, which doesn't always lend itself to being fully present and truly genuine. Sometimes it is just easier to say, "We're doing ok" than it is to open up completely and say what it's really like. Not only that, but often I've encountered people so uncomfortable with my emotion and my honesty, that their responses, although always well intended, land like a load of bricks on my already fragile being. Sometimes it's just safer to be minimal and guarded.

For some reason this mom was unguarded and wide open to having a discussion of our journeys. I was elated. She, like me, was wondering, "So, what's so great about maintenance?" She also let me know that her daughter had the roughest go in the interim maintenance phase, just like Aria. She was terrified that maintenance would be a repeat of that time. Oh, did I know her anxiety well! We breathed together and smiled with rolling eyes acknowledging that we are warrior mamas ready to do battle but hoping beyond hoping that we don't have to. Her daughter's delayed intensification treatment went very much like Aria's. She had a few blips along the way but nothing too difficult to handle. They were tired and ready to move on. I understood that too. I told her with tears in my eyes that maintenance was still 5 medications a day on a good day and that every time Aria says that her tummy feels yucky my heart races and my stomach flips automatically. I wonder if this response will ever go away. I also tell her with tears in my eyes that Aria hasn't felt this well since before she was diagnosed. She plays like she used to. She laughs. She sings. She dances and twirls. She is enjoying life to the fullest again and so am I. Maintenance feels like a welcomed bit of normal to our "new normal". I reassured her as I best I could that for us it has been a dramatic improvement in terms of quality of life. I told her that the most telling thing about this phase is that I have had for the first time space to think about things other than cancer and death and sorrow and fear. She looked at me with tired eyes and smiled. "Oh," she began, "I can't wait for that. All I've thought about for the last 7 months is what are we gonna have to deal with next?" We laughed together and our laughter blended in a knowing sense of relief and understanding after having journeyed similar tumultuous, unpredictable, and frightening landscapes. We ended our conversation with acknowledging the end of crisis and the beginning of an entirely new chapter. With that, they were off and as I watched them leave I sent up a thought that they would soon be able to go home. ( I found out later that it would be another 10 days before they could finally do just that.)

The other mother I spoke to was someone I had seen maybe once or twice and her son looked vaguely familiar too. Come to find out, they are fast approaching the end of his treatment after 3 1/2 years. He, too, was diagnosed with ALL when he was 18 months old. After a few months of trying to treat chronic ear infections, he just seemed to be 'getting worse.' The final straw for them was an obvious lethargy and fever. Blood was drawn and after holding him down to allow the blood draw, she noticed bruising all over his arms. She was absolutely terrified. A few hours later, she told me, their doctor was standing in their driveway with the news. She said that within an hour they were packed up and heading to Spokane. I can't remember now where they were living but I do recall that they have since moved to the Spokane area. I was trying to digest the idea that in a moment life as you know it can become something completely different. It is a profound thought and something that haunts me still.

She and I had the most amazing conversation. Here was a woman on at the end of treatment candidly telling me her story. I was captivated. What I appreciated so much about her was her 'realness.' She was teary at times revisiting those scary moments. She also admitted that she's just 'completely done' with having to come to clinic. She began with something like, "I know this sound so horrible, but I'm just so sick of coming here. I know it's only once a month for a few hours but, man, I'm tired of it. I know it is saving his life and what could be more important than that, but.." She was teary and I interjected with something like, "I don't blame you for being burned out. 3 1/2 years is a long, long time. You're at the end of this part of the journey and yet you have to come here and meet people, like me, who are just beginning or you encounter people who have to repeat the process, which only serves as a reminder that there are still no guarantees even after treatment. You have to interact with people you've know all this time and their kids aren't getting better or it's taking even longer for them to get better. The emotion in this place is like nothing else." She nodded and said, "yeah, it's like I'm so happy we're so close to being done even though we aren't really done. After he stops his chemo, then his body is left to its own devices and then what? We come back here every month for check-ups. I'm happy about his prognosis and that he's done so well but I'm scared too. I'm happy that we're at the end of his treatment but I feel guilty when I see other people still dealing with it." We were silent watching our kids play sitting with those thoughts for a moment. I was amazed that she was so reserved knowing the end of treatment was only 2 weeks away. 2 weeks! What that must feel like?!

I found everything about her incredibly refreshing. I can imagine people reaching the end of treatment and being jubilant almost over-the-top joyful tempted to hide or mask the anxiety and fear that still exists. I can imagine those in her circle of friends rejoicing at being done with treatment without really understanding her reluctance to join them in celebration. I made a comment to that effect and she nodded in agreement and said something like, "How do I even begin to explain to people who haven’t dealt with this what it feels like?" I was quiet and said, "You just tell them the truth."

I don't know what it was about her that captured me so completely. I was overwhelmed with happiness for them. The nearing milestone of completing chemotherapy after 3 1/2 years is monumental! I was overjoyed for them and could hardly contain myself. I also mentioned to her how promising it was for me to see her son approaching the end. There is an end to this treatment and even though it is 19 months away for us, give or take, there is an end. The chapter called chemotherapy will end and a new one will begin. As scary as that is sometimes, there is a real promise there and it becomes more tangible every single day. For her that new chapter will include all the side effects of chemo and for her son part of that includes damage to his kidney and God only know what else. We laughed together at the idea that it is the end and the beginning at the same time.

Her genuineness, her fatigue, her burnout, her realism, her playfulness, her optimism, her worries and fears resonated deeply with me. I was incredibly grateful for every single moment I spent with her. Here she was, this beautiful young stay-at-home mom with 2 older children at school and her 4 year old son playing with my kids. The similarities we shared were fabulous. She owns a little acreage and loves to garden. She has hens and adores her farm fresh eggs. But what I most appreciated was her willingness to say that despite the fact that her son is doing well and that the end of treatment is near, there are unknowns to be faced. This process isn't over despite her desperate desire for it to be. Even though things are well, there are plenty of 'buts' in her view. There was nothing about her manner to suggest that she wore the mask of, "No, no, no, everything is just fine!" She was living proof of my mantra to live true and I'm indebted to her.

Just before Aria received her chemo she came up to me and told me that they'd been hanging out in clinic for almost 2 hours for no reason. She thought they were waiting for test results and began to wonder, "Man, this is taking a really long time!" She finally asked someone and realized her mistake. Sitting in the clinic for any amount of time let alone unnecessary time is a drag. I thanked her profusely for spending so much time with me and her comment was, "Yeah, that was the reason I messed up on the time here. I was supposed to sit and talk with you!" We thanked each other and as she was leaving I marveled at her gift to me. The gift of her time and her genuine self is a prize I will cherish. As she was heading out the door she turned to say good-bye and I said, " I hope I never see you again!" She stopped and burst out laughing, "Yeah, me too. Hope I never see you again...unless we meet up at some cool farm auction or something!" We laughed and laughed. Oh, what a gift it is to laugh and to connect with another person in this way. In truth, I do hope I see her again someday.

In case you forgot, Aria was back on her steroids for 5 days. Doc and I were amazed at how well she did. It is either that or we are doing a better job riding her emotional ups and downs! She didn't seem as emotional this time in terms of her sensitivity, but her patience was next to nil. She also craved noodles and bread again. I was amazed at what she was able to pack away. I hadn't seen anything close to it in a long time. She ate several pieces of bread and then wanted yogurt and then noodles and THEN pizza! Amazing. She's started to really enjoy steak so we indulge that healthier choice a few times a week too and she can put away a hearty plateful.

School started on September 2. Reo is in the first grade. He is away from home for the first time all day long. I was completely stressed out about it and I missed him terribly. I'm feeling much better now and I adore his teacher. He was ready to go 30 minutes early on the second day of school and his enthusiasm has remained high since. He loves it! Aria is back in preschool 3 days a week and seems to be enjoying it. I wouldn't say she loves it. It is a complete departure from her normal lounge around routine. I think she is enjoying seeing her teachers and some of her friends. Once we have a routine down, I think she'll enjoy it a whole lot more. 3 days is really all she can tolerate at this point. Thursday, last week, one of the teachers told me that she was wiped out and just wanted to be held for the last 30 minutes of class. Mind you, her class is only 2 1/2 hours! She's still building her stamina and endurance for such things but I suspect it won't take much time.

As I'm walking this path of maintenance, I'm on a nice flat stretch with a wide view that is completely lit up. The air is fresh, the wind clears my head of worry and woe and I often skip along with sighs of contentment and a few giggles thrown in here and there. Although I'm cautious and I think realistic, I'm also feeling truly hopeful and positive about what's to come. I recognize that this is fully reinforced by the fact that Aria is so well and I dare say that I doubt I'd be feeling as optimistic if her treatment was working less well. It makes perfect sense to have wavering confidence when the process is murky and uncertain yielding less than positive results. I'm thankful that that isn't what we are contending with now.

Step by step. Here I go. I walk closer to mystery embracing with greater actuality this hopeful promise. It is here I pause. It is here I am. ~j

August General Update

August 26, 2008
Subject: General Updates
August 26, 2008

I think it is important for me to once again say, "No news is good news!" I'm beginning to have a better sense of this "maintenance" phase and why people have alluded to its ease and gentle direction toward normalcy. We are fast approaching our first month in maintenance and the relief of Aria's well-being is extraordinary. Her tolerance of the medication/chemo has exceeded my expectations in every respect. We have not yet reached a point in time to know what the long-term tolerance is going to be like, but if the past 4 weeks are any indication, we are anticipating a relatively merciful journey. Aria remains at greater risk for infections, which will have an immediate effect on her counts. Hospitalizations are not unheard of, although less common during this phase. Her medication will be adjusted accordingly throughout her treatment, so really it is a matter of 'maintaining' a level of vigilance and awareness that keeps her as steady as possible.

I write to inform you that I anticipate fewer emails over the course of time. However, I will always write an update whenever Aria is in clinic. Part of my reasoning is to simply have documentation of not only how often we've had to visit clinic but to describe in some detail its purpose. In terms of what happens in between those times, I can already anticipate that I'll be less inclined to write about our daily lives, which really have become rather ordinary, much to my delight. It has occurred to me very recently that my mind has been less occupied with thoughts of cancer and what it means to be a care-taker and how it effects my spirit and my psyche. I'm no longer completely and utterly consumed by these thoughts and I'm rejoicing.

I now have room in my mind for other things. I've been thinking about my creative side and I've begun to express that once again in my sewing studio. I actually have space in my thoughts for seams, button holes and zippers. I look out to my pasture and I see my kitchen garden with a large pumpkin patch and sunflower forest waiting to bring its magic to my gaze next season. I look to my gardens around the farmhouse and although they are in need of serious attention, they are welcoming and inviting. What was so overwhelming, new, daunting and frightening several months ago no longer applies to today nor to our future or so it seems to me now.

I realize fully that I wouldn't have believed anyone if they would have told me a few months ago that I would be feeling this way now. Somewhere in the recesses of my mind, I would acknowledge the sentiment trying to maintain a sense of openness but my heart would be doubtful. 'One can not know what they don't yet know' is a rather moronic thought but this is what rings in my head presently. I embrace completely that I have the perspective I do today because of what I've experienced these past few months. I find it extremely important to say because it is so tempting to advise others from this place of experience in offering well-intentioned reassurance. I remember like it was yesterday the woman who came into our hospital room the morning we were being discharged after an 8 day stay. She was 10 months into the journey so her recollection of her first week was not at all her place of trying to promote that things would be better. She was well on her way into maintenance so for her to relate to me in my state of grief, fear, sudden loss, and sorrow was probably the farthest thing from her mind. She wanted only to tell me that everything was going to improve and I certainly don't blame her for her motivation. However, there was nothing in my immediate experience to allow for the same assurances. As much as I appreciated her visit and her words and experience, I knew that this was something I'd have to experience on my own. I say this because I suspect I will one day find myself in her position and I think it is important for me to consider what I would want to say. I can now reflect and consider those things that might have been helpful and perhaps share that view. Ironically, nothing comes to mind! I can't think of single thing that anyone could have said to me that would have alleviated my anguish. Rather, it is the presence of a listening ear, a compassionate heart and the confidence to sit comfortably with my emotions that seems to me to have been most helpful. I've been blessed to have an abundance of such things and this has contributed most effectively to the confidence I have now to continue on with a much lighter step.

As well as things are, not a day goes by that I don't have some kind of reminder to contend with. I sometimes feel like I'm an untied balloon that is almost nearly full most of the day but something happens throughout its course that allows for just a little air to sneak out. I find myself lighter, floating upward, nearly ready to let go but a reminder enters my consciousness and I sink ever so slightly. I must, with some effort, replace that loss so I can be uplifted once again. Day after day I participate in this ritual of sorts and so it continues......

Allow me to illustrate it for you with a story. Last week, Monday, I took the kids to the dentist for their 6 month check-up and cleaning. It never once occurred to me that Aria's leukemia would feel like a slap in this environment. I knew that I would tell her story and I would receive wide eyed stares and wonderment but I never made a connection that her cancer and its treatment would have any negative consequence on the development and care of her teeth.

I'll tell you that we have a wonderful dentist and her entire staff is remarkable. They are warm and gentle in every possible manner, so going to visit them is rather a nice treat. Imagine how stunned I was to receive my first slap when I was asked to update the kids' records and complete their medical histories. Until this time, Aria's medical history in any documented form has been exclusively reserved for only the oncology clinic. There before me was a familiar medical history form listing all kinds of medical conditions that may or may not be applicable. We've all seen them countless times and this was the first time I'd ever experienced filling one out where I found myself making check marks over and over and over again. It was all I could do not to crumble in tears when I reached the end of the form. It was such a stark reminder of loss. Before the process of her diagnosis in late December 2007 and January 2008, Aria had never once been to the doctor with the exception of well-baby checks. She had never had an antibiotic and I could count on one hand the number of times she needed over-the-counter type medication. Life for her has undeniably changed and separates her completely from the experiences of most 4 year old children. This paper, staring me in the face, was proof of it. Once again, I could feel my heart shatter into a million pieces and the sorrow of what she's lost and had to endure came flooding over my senses.

A peculiar dialogue began between my heart and my mind as it so often does. What I found so stunning was how angry both were;
My mind began with something like, "Julia! For God's sake, stop being so damn melo-dramatic! She's doing so well and this is just now a part of it! Get used to it!"
My heart was taken back by my mind's lack of feeling and it was seething in its defense. "Melo-dramatic? Are you kidding me? Did you not see how many check marks you had to make? What the fuck is your problem?"
Mind quickly snapped, "My problem? What the hell is wrong with you? Why must you insist on staying in your dark little dwelling? Can't you see the light? Can't you recognize the promise? Why must you look back? We are going forward whether you like it or not!"
I'm taking deep, deep breaths. I'm trying to slow my heart rate. I'm trying to calm my mind. Both are racing when a third party shows up unexpectedly. It is my Spirit who says, "What marvelous voices you are. How you compliment one another so well. I sincerely doubt I would be as effective without you so clearly making yourselves known."
My mind and heart are enthralled by my Spirit, who seldom makes such an appearance.
My Spirit continues, "My friends, you needn't be settled in one place or another for you both serve an equal purpose and perspective. Don't you yet realize that you cannot appreciate the light if you don't first appreciate the dark. You cannot understand the catharsis of moving forward if you never glance behind you once in while. In every moment of life you are who you are because of who you were."

I begin to smile. My heart is calm but my mind is rather rigid and a little put out. My Spirit continues soothingly, "So often what you read and so often what you hear about strength and courage and being positive is like a wooly cloak that is rugged and tough but lacks the lining of sincerity that makes it comfortable to wear. You, my friends, are simply creating that lining and you have an opportunity to weave something that is unique and true."
My mind begins to ask a question, "But...."
My Spirit is silent once again.
I'm blinking back tears and I hand over Aria's medical history form to the receptionist. I feel sad but content at the same time. I have a sense of acceptance that is tangible and empowering. I'm well and know I will remain so.

I was later brought back to the area where Aria was having her teeth cleaned. I was told that she was beginning to get upset. I entered the space where she was and saw her on her back stiff as a board. She was nervous and uncomfortable lying ever so slightly tilted backward. I imagined that this position was enough to make her feel like she was going to fall upside down. Her hands were gripping the chair's arms. She was wearing large plastic sunglasses with yellow rims that gave her an exaggerated buggy-eyed fly-like appearance. She took one look at me and burst into tears, "I wanna GO Ho-ho-hoME!" I tried to console her sitting with her on the chair and asked the hygienist if perhaps Aria could sit more upright. She was so accommodating and understanding, encouraging Aria that we were almost finished. She told me that Aria's teeth had been discolored because of the chemotherapy and I swear to you, it wasn't until I was under the lights in that room and hearing her words that I noticed Aria's teeth were dull and yellowed and seeming to become more-so with every passing moment. I had to repeatedly blink my eyes to get the image of her teeth going from a yellowish tinge to a brown rotting mess out of my head. I can laugh about it now but in the moment, I was distressed! She then told me that Aria had a lot of plaque build-up, which is common with chemotherapy. As she was telling me this news, she was continuing to scrape plaque from Aria's teeth. She told me that people with cancer, generally have a great risk of tooth decay so we are going to have to be more aggressive with her cleanings and fluouride treatments. I asked her if she thought Aria's permanent teeth were equally affected and at risk. I was told that she just didn't know but it would be something they would watch very closely. Aria is now going to receive cleanings every 3 months and will be under the watchful eye of her wonderful dentist.

As I said earlier, it never occurred to me to even imagine that Aria's chemotherapy would have anything to do with her teeth. At the same time, who would have thought that one of her medications would make her want to walk on her tippy-toes so much so that she may need leg braces. I'm now wondering about the long-term effects on her eyes and ears, balance and so forth. It is all encompassing.

What I have written here is what it feels like to have a little bit of that air released from the balloon of my spirit. Yet, in the process of this writing, from the corner of my eye I could see Aria walking toward me. I am sitting in our library, which is on the first floor of the house on the west side. There are 2 doors in the library; one that leads to the living room, which is a hub of activity and another door that leads to our mud room where the dogs (all 5) reside. To my left and just behind me is a window that gives me a wonderful view of one of our two crabapple trees. It acts as anchor to one side of a white mesh hammock that is a favorite resting place. It also houses our 3 kitties, who are chased up there on a regular basis by one of our psycho-cat-killing dogs. A variety of birds twitter and play among its branches filling my ears with their chats. I can hear the leaves blowing in the wind and when the kids are outside in the playground, I can hear them in the mix. It is a wonderful and serene place to sit and to write. Just moments ago, Aria was walking through the living toward me. She was wearing her beloved ballerina costume carrying a small bundle with great tenderness. She was tip-toeing not wanting to make a sound. As she approached, I could see that she was carrying one of her baby dolls meticulously swaddled in a hand-made doll's quilt that my mother-in-law made for her. She was nuzzling her baby, stroking the top of her head with her cheek. I whispered, "Is she sleeping?" Aria nodded that she was. I added in another whisper, "My, what a good Mama you are." Aria looked at me flashing a brilliant grin as she was gently rubbing her baby's back and said, "I know. I am a good Mama!" Then without any warning at all, she tore off the baby blanket and threw her dolly in the air tumbling in all directions and squealed, "Wheeeeeeeeeeee!" The baby doll landed with a small thud and Aria raced away to play with Reo. "Come on Reo, let's play swords!" I heard her say. This moment with her, which was no more than a minute or two has filled me to overflowing.

As I end this note, the balloon that is my Spirit is full and beginning to float even though it hesitates. I am lighter despite the weight that we face every day. I suppose in some ways I am learning to truly celebrate the place of balance. The place that is neither light nor dark but the one that meets in the middle. It is neither good nor bad but somewhere in between. It may seem like an obvious place, one where most people reside, but for me, I am in a place in life where this is for the first time truly, sincerely tangible. Funny, but I'm sitting here thinking, with my fingers to my lips trying to find words to express how it is that I feel completely open to "come what may" and at the same time I am full with what has already been. It is a place of pause, I suppose. I'm taking stock and I must tell you that I have a tremendous sense of abundance that is both sustaining and enduring. Tell me, could anyone ask for anything more? ~j

1st Maintenance Friday Clinic

August 19, 2008
Subject: 1st maintenance Friday clinic

It is Saturday morning August 16, 2008. Yesterday we went to clinic so that Aria could have her finger poked, vitals taken and so forth. She has put on a little weight, which is good and has grown in height a little too. I can't remember the exact numbers now. Suffice it to say, that she is growing in the right direction. Her finger poke went without incident and we were able to follow-up with Dr. Trobaugh's nurse, Mary, about how Aria has been doing. We are so pleased with her tolerance of the medication so far. She experienced a bit of nausea only one time following her procedure 2 weeks ago and has had nothing since. It is such a huge relief. Aria seems like her old self in almost every way and I can't tell you how marvelous that feels to me. For the first time since January, I feel like the ground beneath my feet is firm and I feel like I am firm as well. It is exhilarating.

We stayed at the clinic for only a short time. I have to say, the environment felt very festive and fun. Aria did not want to leave before she had an opportunity to play with her beloved Krista. They have a game that they play and Aria pouted when she learned that we were ready to go. She actually more than pouted; tears welled, her shoulders sank and she stomped her feet. Reo chimed in, too, with a hearty, "I don't want to go yet either MOM!" I was over-ruled in the matter so we stayed for a while and played. How's that for a transition? Aria and Krista played. Rianna romped here and there while Reo played on foam blocks he loves to pile and then knock down with a mighty, "T-I-M-B-E-R!!!!" Good wholesome fun was had by all.

You know what? Clinic remains a twisted perspective of fun. There's this desire to think, "See? We're having fun. See? No one here is horribly ill. See? All is well....right? It is ok....right?" I know darn well that it isn't and I know that this fun is a mask, a thin veneer hiding what lies just beneath the surface. I find this a struggle most of the time. It is what I know and understand as an adult, parent and mother all the while I am surrounded by the blissful innocence of children. I'd love to be able to forget and dive deep into the play and amusement of these kids but I can't. I don't think anyone expects this of me and I certainly don't want to pretend to be having fun when I'm not or to 'put on that brave face' when it may very well compromise my sincerity. I just can't be fake. I must live true. At the same time, I'm learning to abandon myself a little and ride the whims of these kids. I'm learning to allow myself to release my practical side somewhat and be guided by them. I found myself having fun almost despite myself and this was a wonderful thing!

I was sitting down watching the kids play and interacting when I struck up a conversation with a mother sitting next to me. She and her son were new to me so I decided to introduce myself. I felt lighthearted and social. The atmosphere was truly celebratory. I mentioned that I hadn't seen her around before, although she looked very comfortable like she knew this place well. She told me that this was the second go-round for her son who is, I'm guessing, 10 years old. Last summer he was diagnosed with an aggressive lymphoma and received a bone marrow transplant. He had been doing very well until this past summer when he was diagnosed with a secondary cancer; leukemia. He is currently in remission after receiving extensive chemotherapy already and will probably have another bone marrow transplant in the Fall. Secondary cancers as a result of treatment are common I've learned and leukemia is very common. This is a horribly bitter pill. This woman was matter of fact in her telling of her story, all the while I was speechless. I found my eyes searching hers wondering, "How do you do it? How do you have the courage to face this all over again?" I was silently listening and internally screaming. It was the strangest sensation that I've had countless times now. One would think I would grow accustomed to it or at least come to expect it, but I don't. I still sometimes feel suspended in reality as if I'm a complete stranger to the people and the environment I've come to know so well. She shrugged her shoulders in a resigned, "What are ya gonna do?" sort of way. I ached for her and I breathed deeply for myself. It was yet again a glaring reminder that part of my coping is not allowing my guard down too far. Maybe this is all illusion but for now my mind and my heart agree that I can superficially embrace that things are well but at the same time I have to brace myself for the possibility that anything can happen.

As I write this it seems almost obvious and I can hear the nagging little voices in my head saying things like, "Of course Julia! Of course you can't fully dwell in the place that everything is fine. You still have a long way to go and when you reach the end there are a host of unknowns yet to be met. You know as well as anybody that there are no guarantees."
My heart retorts, "Yes, dear mind, I know this but what I wouldn't do to feel differently. What I wouldn't do for the bliss of knowing all was well with my children. What I wouldn't do to simply toy with worries that live only in my imagination as opposed to having to actually face them every single day mixed among a million moments that are brilliantly wonderful. What I wouldn't do to be able to separate myself from the people I encounter in the clinic every 2 weeks. What I wouldn't do to be able to feel like I did before Aria got sick. What I wouldn't do to be able to fully accept my life as it is."
My mind listens deeply and gently hugs my heart and says, "You know, to hold your yesterdays in your pocket only serves to inhibit your being present to face your life as it is."
My heart is quiet. My mind and my heart are together in a tender embrace and when I look up I realize that I'm sitting quietly with my head bowed. I'm smiling.

It is now Tuesday August 19, 2008. It is the fault of my Goddesses, Jeannie and Ellie, who came to visit this weekend and brought me joy, laughter, good conversation, distraction and sisterhood, that I am so delinquent in getting this update out to you. They are food for my soul and it was wonderful having them with me. We rejoiced often at how well Aria is. How well she looks. How much energy she has and how joyful she is. I found myself spending a lot of time in those observations and it was powerfully healing. It is a humbling experience to be with people who have seen Aria during very low times and now see her so much improved. In fact, if it wasn't for that fact that her hair is only just beginning to come back, I sincerely doubt anyone would know she was still fighting a life threatening illness. It is humbling because as her mother I can't help but think that it would be much easier and emotionally safer for me to stay in a place that was 'on alert' most of the time ignoring the fact that life for us is very different than what it was 7 months ago. It is very different than what it was even a month ago. This change has been nothing but positive but I tell you, it is so tempting to remain in thoughts that end with "but.....". Aria is doing great, but.....Aria will be able to go back to school, but......Aria's energy is back to normal, but..... I can't help but wonder if this "but...." is another way to safeguard me from being turned completely upside down and stunned at what Life can hurl. My Goddesses helped me see and feel and sense that to rejoice in the moment that is quickly followed by a "but....." is futile and stagnating. It's like pedaling forward and then backward. Forward and back. Forward and back and after a while facing the inevitable question, "Why aren't I getting anywhere?" It's like trying to light a match in the wind knowing full well that it is an act of absurd desperation. Still, I swear to you, it is so tempting because it is safe. I light the match in the wind because at least I'm doing something. I pedal forward and backward because at least I'm sort of moving. I celebrate her improvement recognizing it for what it is but I protect myself because I'm afraid of what could happen. This experience has shattered my sense of security and in some ways this is not a bad thing.

The problem is that I haven't fully accepted that my sense of security, my ideas of control were nothing more than fabrication. I'm certain that once I do, I'll no longer need to use the word 'but...." I'll be able to look at Aria, marvel at her wellness, relaxing in a moment of thanksgiving. For now, I'm not there yet. I'm still scared to death. My Goddesses, who have not been with Aria every single day, have a broader perspective and were so good to help me look up and away and see how big the picture of Aria's experience has become. I've been so keenly focused, so guarded, so regimented that I haven't made time to look around and really take in the view. My Goddesses are cherished friends who gently lifted my head and took care of things around me so I look deeply. It would be easier to stay in a pattern that is familiar and pointless but it sure wouldn't take me anywhere. I am so thankful for their time with us!

Friday afternoon we got a call from the clinic with Aria's test results. Her ANC skyrocketed to 5700. Her hematocrit was nearly normal at 32 and her platelets were well above 250,000. This was fantastic with the itsy-bisty exception that her ANC is too high. For the phase of maintenance her ANC needs to stay within the range of 500 - 1500. An ANC of 5700 simply means that either her chemo medication has not fully kicked in yet, or that the dosing is too low. We're in a wait and see pattern now for the next several weeks. This is not new information, by the way. I feel like we were well prepared to deal with the fact her meds would more than likely need 'tweaking' on a fairly regular basis for the first few months. We've been doing this for 18 days. We're doing well. Aria goes back to clinic in 2 weeks. At that time, she'll have a full exam with Dr. Trobaugh, lab work will be done and she'll receive her monthly injection of vincristine and she'll take her 5 day course of steroids.

I dread steroid days. I have to admit it. I know the 'noodle' story was hilarious in many respects and I've recently reread it and found myself wanting to laugh and cry. That morning is so vivid in my memory. I'll be sure to document and other doozie stories like that one but suffice it to say that steroid days are mentally exhausting. Aria is on and off, hot and cold, sweet and sour, loving and hateful, gentle and fierce, joyful and sad and so forth at any given moment for several days in a row. I know this. She is transparent most of the time and I am equal to the task but I have to tell you, it sucks the life blood out of me. Steroid days test my patience to the max and I despair when I falter. I pop the wind from my sails when I'm careless in my thoughts and reactions to her. It isn't a matter of the saying, "Well you're just human," nor is it a matter of being 'just of those days." Steroid days are entirely unique and separate from everything else and so when I fall short, I'm frustrated that I didn't meet the challenge well. I'm frustrated that I allowed the opportunity to slip by. I'm irritated that I allowed myself to neglect the moment.

However, in this moment, as I'm writing, I look to these next 19 months or so as opportunities to try again and this blows hope back into my spirit that I will exercise greater compassion. I will be more patient and understanding. I will be more present and hopefully more at peace. Can one be grateful for such an opportunity? I suppose in some ways I am and this is nothing but another perverted perspective I've gained through this experience. I'd do just about anything to not have to experience this with Aria and have these 'opportunities' but that isn't reality so here I am processing and writing to you feeling grateful for even this opportunity. It's so odd. I feel like I'm being lightly blown around on the breath of my own sigh. It is relief I feel and it is also a gearing up sensation. The image that comes to mind is a dandelion seed dancing on airy swells until finally being laid to rest upon the earth somewhere creating a tenacious root that thrusts deeply into the soil. I, too, am floating around having my light moments followed by other moments that are grounding and onerous. This is life for me and I tell you truly, it is still good. ~j

the potty corner

These are some Summer Fun pictures

Aria with a pony henna tatoo I made. She LOVED it!

August 13, 2008
Subject: The potty corner
How wonderful it is to laugh! How fantastic it is to feel whole-hearted delight. In this moment, this is how I am and how we all are.

Just before noon today, the kids and I decided it was time to play in the pool, which a large in-ground "L" shaped pool that is surrounded by a green chain linked fence. Within the grounds of the swimming pool is the original well and pump to the farm, which was established in 1915. The pump was powered by a windmill, whose skeleton like structure still stands erect on top of it. The well itself is covered with a rotted piece of wood, some stones and grass that have found life in between the cracks. One would hardly ever know a deep well is hidden below. Doc has since built a safety fence around it. The windmill no longer functions to pull water from the ground but it remains decorative in its presence and brings me delight as I float in the water and stare at its turning blades against a blue canvas of sky.

The windmill is situated in a grassy corner that for some reason is an inviting place to pee. It isn't remotely private but something about that corner calls the very nature from people. We have christened that place 'the potty corner" and those who find it too much trouble to race to the house and peel away a dripping swimsuit will answer the invitation to the potty corner. Aria heard the call today and the scene that unfolded was dazzling.

We entered the pool and were gathering our equipment for water fun; goggles, buckets, rafts, crocodiles and the like when I noticed Aria quietly and unabashedly tip-toeing to the potty corner. I might add that the 3 kids were naked since everyone knows skinny-dipping is the only way to swim! I was wearing a little 2 piece number and frankly the jury it still out on whether it might have been visually wiser for me to join the children in their birthday suits! Alas, I digress.

So Aria tip-toed to the potty corner naked getting ready to pee. Rianna followed close behind wearing her life jacket with its bottom strap riding the crack of her bum like some silly g-string. She isn't bothered. She's fascinated with Aria and is copying her every move. Aria has her back to me while I'm watching her from the shallow end of the pool. Her stance is wide and she relieves herself. Now this alone would be inconsequential if it wasn't for the delicate little dance she performed at the very end. Aria stood there for a moment, drip, drip and then with her fists in the air, her knees slightly bent, and her butt in the air, she wagged her body like a dog! What was so incredible was that I could have sworn I heard dainty little bells chiming away with every little wag she made. But that's not all folks. Aria proceeded to shake her leg with a fervent wiggle-waggle. It was all I could do to contain myself. Aria turned to me with a puzzled look as if to say, "Mom, what's so funny? I'm just going pee!" Rianna meanwhile, was crouched low practically sitting on the grass trying hard to pee like big sister. I commended her effort with applause and praise. Rianna raced to me with smiles and squeals as Aria was gingerly climbing into the pool. Reo had long been diving in the water searching for rockets and sunken spiderman action figures.

We spent a good while swimming and splashing. The bliss of this time, this innocence and these children create a life force all to its own. It is sustaining to me in ways I could never have imagined. Today, in this moment, I realize the milestone we have achieved and despite the many steps we still have to take I am beholden to the many simple gifts that make up this great Life. ~j

what the writer reads

August 11, 2008
Subject: what the writer reads

My Dad inspired this email. He and I were having a discussion about divinity one day and I mentioned a book I was reading at the time. He said to me, "You know, it might be interesting for you to somehow include some of the literature you've been reading. Some may be curious." I put that little nugget in the back of my mind until this morning when I decided to write down all the books I've read since January.

It stands to reason that anyone dealing with some kind of tragedy would be drawn to reading matter particular to the subject as well as things that offer a bit of escape and perhaps even some spiritual works. I often have a selection of each of these things on my night table. It is worth mentioning that I have 2 primary tables housing books that I continually read throughout the day depending upon where I choose to pause. In the living room, I have a tea table that has stacks of books on it as well as recent magazines from the 2 subscriptions I carry. One of those is an antique sampler magazine that I find extremely interesting and helpful in my work as a seamstress. The pictures are often mind boggling in their beauty and detail and this magazine offers me a bit of escapism whenever I decide to seek its pages. The other magazine on my tea table is MaryJanesFarm, which is nothing short of a work of art. MaryJane Butters is the author/founder and this publication has just recently gone national, so if you are interested in 'back-to-basics' living that is smart, considerate, beautiful and gentle in every way, then I highly recommend this magazine. Furthermore, if you desiring something that is inspiring beyond the palate of the more mainstream offerings, then I can not recommend this feast for your eyes enough. The books on this table vary and the 2 that I'm looking through now are: "Colonial Living" by Edwin Tunis copyright 1957 and "The Apron Book" by EllynAnne Geisel

My night table beside my bed is another matter altogether. On it are the books I'm planning to read and the book I am currently reading as well as a few chapter books that I read to the kids at bed-time. My books are in constant rotation. Since January I have read the following books:

"The 7 Spiritual Laws for Parents: Guiding your children to success and fulfillment." by Deepak Chopra
"Ignatius of Loyola Spiritual exercises and selected works" edited by George E. Ganss S.J.,
"MaryJane's Outpost Unleashing your Inner Wild" by MaryJane Butters. (by the way, Aria's photograph appears in this book on page 55!),
"Violet" by Susan Elizabeth Buzard,
"The Moon in the Pines Zen Haiku" selected and translated by Jonathan Clements,
"Chemo Craziness and Comfort" by Nanacy Keene,
"Know Before you go. The Childhood Cancer Journey" by Sheryl Lozowski-Sullivan M.P.H (Candlelighters Foundation),
"Humorous Stories and Sketches" by Mark Twain,
"Book for Bad Boys and Girls" by Mark Twain,
"The Shack" by William P. Young,
"How to See Yourself" by His Holiness the Dalai Lama,
"How to Know God" by Deepak Chopra,
"The Diary of Ellen Rimbauer" by Joyce Reardon, PhD,
"The Adventures of Huckleberry Finn" by Mark Twain,
“My Grandfather’s Blessing” by Rachel Reme
“Kitchen Table Wisdom” by Rachel Remen
*"Fables and Fairy Tales"* by Leo Tolstoy,
*"Peace"* by Mahatma Ghandi,
*"Contemplative Prayer"* by Thomas Merton,
*"One Minute Wisdom"* by Anthony De Mello,
*"The Way to Love"* by Anthony DeMello
Note: * indicate those books that I have read and continue to reference on an almost daily basis.

There are 2 books that I read religiously every single day. They are daily meditative type books that I keep in my bathroom. (no disrespect is intended!):
"Meditations for Women Who Do Too Much" by Anne Wilson Schaef (this was given to me on my birthday in 1997 by my dear friend Jen and I will always cherish it.)
"The Path to Tranquility, Daily Wisdom" by His Holiness the Dalai Lama edited by Renuka Singh. (I acquired this book in 1999 and have had it with me every day since)

The book I am presently reading is titled "Sky Burial" by Xinran. I just received this book from my most beloved friend, Jenny, who lives in Scotland.

The books waiting patiently to be read on my night table include:
"The Chalice and The Blade" by Riane Eisler
"No Time to Lose" by Pema Chodrin
"No Man is an Island" by Thomas Merton
"Letters from the Earth" by Mark Twain (I've read the first half but I have needed to put it aside a while)
"Uncle Tom's Cabin" by Harriet Beecher Stowe
"Hiromshima" by John Hersey (This is an actual account that I recently found at an estate sale. I suspect it will only confirm my belief that all nuclear powers, weapons or otherwise, need to be destroyed)
"Florence Nightingale" by Ruth Fox Hume
*"50 Famous Americans" by Ward Griffith (copyright 1946)
*"The Prince and the Pauper" by Mark Twain
*"Black Beauty" by Anna Sewell
*"Fairy Dust and The Quest for the Egg"* by Gail Carson Levine

Note: * indicate the chapter books that I read to the kids

I ought to add, that it is commonplace for me to go to bed with the kids sometime between 7 and 8 pm. I don't watch any network television but I do love to watch movies and will indulge in that 3 or 4 times a week with Doc. Most of my evenings, however, are spent cuddled on the big bed with the kids reading for a few hours. We have a very simple life here and most ways it is enchanting and blessed. Reading books is by far one of my favorite past-times and I'm always collecting and gathering them. If you have any recommendations, by all means, let me know!!

I know this is a completely different email from any you have received to date, but perhaps it gives you a little insight into what makes me tick. Funny, I'm still discovering that very thing! ~j

Maintenance Begins!

It is August 24, 2009 and I have just re-read this email. Oh my God! What I knew then versus what I know now! I remember this day like it was yesterday. I can see the hallway where I had a wonderful conversation with Dr. Trobaugh as if it was as familiar as a hallway in my home. I can smell the clinic as I type this. I can hear the sounds of the hospital ringing in my ears despite the fact that I am home surrounded by the gentle subtle noises of my farm. We really do have a second home, a second family and it functions with precision, compassion, intelligence, wisdom, color, chaos, sorrow and joy. Truly, it is a unique experience.

I remember thinking a year ago that Maintenance was going to be a much easier trip. In many ways, it is and in other ways it isn’t. I think it was important for me to consider this phase as something light and breezy because what we had been experiencing for months had been so dark and almost suffocating.

Maintenance has been lighter and easier but it has been long and tedious. We still have more than half a year to go as I write this with a year already under our belts. The ride may not be as tumultuous but it is nevertheless still a ride and it has been treacherous at times.

Regardless, the perspective I had a year ago is worth highlighting and revisiting. It documents how I’ve grown, what I’ve learned and most importantly, how far Aria has come. (8/09)

August 1, 2008
Subject: Maintenance begins!
Aria's counts were high enough to begin maintenance today. What a success! Yesterday, her ANC was 650 and today 24 hours later it was 1024. We were thrilled! I have to say that as I'm writing this, I am completely drained. What an emotional ride today was; waiting, wondering, waiting, wondering, meeting new families who were also waiting and wondering. After a little more than an hour in the clinic we got the 'go ahead' good news but we had to wait another hour before the procedure could actually begin. Waiting is a heavy experience and I haven't yet figured out how to lighten this burden. I know I make mention of it frequently and I suppose it is a way to emphasize its constant presence in my life. I will give this some more thought; this waiting and how to transcend it if I can. For now, I am focusing on being still.

As Aria and Doc were heading to the procedure area of clinic I was chasing down Rianna who desperately wanted to join them. As I walked down the hallway, I noticed for the first time a beautiful collage of paper kites behind some plexi-glass. I have walked by this thing more than a dozen times and why I caught notice of it today is a mystery. As I walked on a little farther, Dr. Trobaugh came out of an adjoining office. We exchanged a cheerful hello and a sort of congratulations that we can take this next step. She smiled so genuinely in her confident compassionate casualness and said, "Smartie?" as she extended her hand offering me one of those sugary candy pills. I adore Dr. Trobaugh for these little bits of humanity that make her so real to me. I declined her offer telling her that I was already fully satisfied having snacked on Fritos, Doritos, rootbeer, milk, apple juice, chocolate pudding and these weird little juicy gummy treats. I feel sick describing it to you now. We laughed and laughed shrugging off the reality of "clinic eating.”

Aria's procedure went with out a hitch. As we joined Doc and Dr. Trobaugh in the procedure room, Aria was still under sedation and just beginning to awaken. Rianna was sound asleep in my arms. She was so zonked out, in fact, that she looked as if she'd been to the year's best toga party. Rianna truly remains our comic relief. Reo, on the other hand, was beginning to lose his cool. He was grumpy and frustrated. I don't blame him because we had been in clinic for 3 1/2 hours and Aria still had to receive her chemo. It is a long, long day. As Aria was waking up and eating, we had an opportunity to talk with Dr. Trobaugh about what maintenance is going to look like. This is the gist of that conversation.

Julia: "So Dr. T, I've been reviewing the maintenance protocol and I understand that this is the place where people want to be but tell me, what's so great about it?"
Dr.T: laughing in a sighing sort of way. "I know. There's nothing really all that great about it. It is still daily chemo. It is still regular clinic visits and so forth but the key difference is that generally kids really do feel better. They go back to school and resume life as it used to be. Furthermore, we'll get to place where you aren't coming to clinic as often as you have been."

We continued our conversation sorting out the details of her medications and her clinic follow-up appointments. Today, Friday August 1, 2008, our first day of maintenance, Aria received and will receive prevacid (X2 daily, which helps with stomach acid), ondansatron (X2 daily, which relieves nausea), methotrexate (via spinal fluid this will be once every 3 months), vincristine (via port access once a month), 6MP ( once daily until the end of treatment), Dexamethazone (X2 steroid for the next 5 days), Septra (an antibiotic that she’ll take X2 on the weekend). She will take the steroid for the first 5 days of every month until the end of her treatment. She will also take oral methotrexate once a week but since she received it in her spinal fluid today she didn't need to take this dose. We are planning on a follow-up clinic visit to check her counts in 2 weeks and then we return to clinic in another 2 weeks for more lab work and an examination. We will continue going to clinic twice a month for the next 3 months or so. It is all a matter of finding the right number for dosing and checking her counts. Dr. Trobaugh said that around 6 weeks from now, we should have a pretty good idea of how well her body is going to tolerate this regime of chemotherapy. Her target ANC is supposed to be between 500 - 1500. Once that magic number is found, she said, most kids general stay between 750-1250. As you may recall, Aria didn't do well during the phase called ‘Interim Maintenance’ on the 6mp drug. She was sick/vomiting every single day. It is almost too much to think about that again but here I am facing it. I can only hope that she doesn't have that same reaction and if she does then we can change the dosing of her medication. I'm gathering that once we find that magic number then we'll go to clinic once a month and will have periodic blood work done.

We were told that Maintenance is still a little tricky because she is still vulnerable for infections and fevers and subsequent hospitalizations. The reality is that she will be exposed to viruses and she'll get sick and we'll take it from there. That aspect of her cancer and treatment is so familiar to me now that I don't worry anymore. It has become a way of life, if you will. I was able to ask Dr. Trobaugh what life will be like after maintenance. It seems strange to think that we'll be going to clinic monthly for in house treatments and have nothing more to do with clinic after that. How can that be? She reassured me that indeed that is not the case. The first year after maintenance will see us in clinic every month still for lab work monitoring her counts. During the second year, we'll return to clinic once a month or once every 3 months and so forth. During the third year, we may return to clinic once every 3 months or every 6 months and so on and so forth until........

Aria should be done with her chemotherapy treatments sometime in March or April of 2010. I find this a staggering notion. I can't quite wrap my head around it. I'm finding myself doing one of 2 things. I'm reflective thinking about Dr. Trobaugh explaining our road map of treatment that first week we were in the hospital. Maintenance seemed like a million years away. I'm so grateful to be here taking the first step in this phase. It is bittersweet and yet remarkable. The other thing I'm doing is focusing not day to day per se but rather 2 weeks to 2 weeks. The day to day idea is still a part of the process to be sure but it helps me to look forward a little. Sometimes the day to day idea feels a bit clumsy like I'm trudging along. When I look up and out, I feel lighter somehow and this helps me to keep moving. I know the trappings of this mode, which can seduce me away from the many tender moments in any one day or moment. I think I am well enough aware so that I can occasionally allow myself some leniency and forward thinking.

I have taken the first step on this long road and I can see the end. Truly, it is small and nondescript but it is there nonetheless. Today, I met a couple of families where I couldn't help but question where is their end? They have been dealing with cancer or some other blood disorder for years already and there is no end in sight for them. I suppose one accepts that this is life. This becomes a way of life, which actually serves as a wonderful reminder that my perception of life 'as it was' and 'as it is', is muddled by not what it is but rather what I want it to be, and 'as it could be'. These are illusions, projections of my attachments and desires. I look at other people with great respect because on some level they have accepted ‘what is’ without illusion. I admire that a great deal and hope I can one day attain that for myself. Until then, I feel prepared and confident. I feel tremendous gratitude and hope. I feel immense love for Aria, Reo, Rianna and Doc. I am thankful for you and as I end this email. I praise You for the gift of this day. ~j

Sunday, August 23, 2009

Aria's eyebrows

July 26, 2008
Subject: Aria’s eyebrows

I don't know what it is exactly but lately Aria has seemed to me more beautiful than ever. Both Doc and I have commented that she has lost the 'steroid look'. Her face is no longer swollen and her belly isn't as distended as it once was. She looks like the old Aria and she certainly acts like herself. It is wonderful to have her back firing on all cylinders again. Her energy is high. Her stamina is great and her personality reflects the goofier, noisier, sillier Aria than we've seen in quite some time. What a joy to feel like we have Aria back. We have Aria back! Aria is back! I hear myself say that in all manner of ways as if I'm mentally trying to pinch myself, locking the memory of her as she is safely away in some part of my brain. It is such a reassuring experience being with her now, watching her, enjoying her, playing with her and at the same time I am challenged to face the inevitable changes that will once again come with each and every month for the next few years....and after that? Well, that truly is the unknown. I see that as the proverbial bridge that I'll cross when I get there. To my mind's eye, it is a rickety thread-bare swaying thing that I see far off in the distance. It is so far, the image isn't really all that clear. It ought to be quite something to discover its true form the nearer I approach. It is easy to turn my attention back to what is in front of me at this moment and that is my beautiful, precious, innocent, sweet, wise Aria. That bridge, that scary crossing, will wait.

I know I began describing Aria's beauty in terms of what I can see. So much of what used to define Aria's physical beauty is indeed back and there is no denying that it is lovely. It may be hard to understand but through all of this it has been so easy to say, "Doesn't she look good?" as if I'm trying to convince myself that things are still 'normal' implying 'less sick.' But in the darkest shadows of my mind I've heard myself scream at the same time, "Look at her! Look how's she's changed! Look how sick she is!" The conflict between letting go and holding on has been a challenge. The many physical changes Aria endured went right along with changes in her personality too and I found this emotionally difficult to reconcile. I've grieved those changes as part of learning to accept the consequences of this process. Some times have been harder than others but with the passage of time has come a level of deeper acceptance and confidence. With this acceptance and confidence I can hold on to bits and pieces of what I knew of Aria before her cancer. I'm seeing those pieces now and they offer me such hope, such light, such joy. What I see of her draws my attention to what I sense of her and that is what defines her beauty.

You all know how hard it was for me to come to terms with Aria losing her hair, which has by far been the most dramatic change. I tussled with redefining beauty as if that was the core reason for my sense of fear and sorrow. I berated my over-indulgent sense of vanity and I wrestled personal demons wondering what emotional tidal waves my psyche would endure if the tables were turned. I think I've finally figured out what the process of hair loss has meant to me. In a word it is 'sickness.' When I imagined Aria's hair was falling out, I thought she would be sicker than ever and facing her illness to that degree was almost too much. What has been a complete surprise is bearing witness to her astounding health and resilience now that she is completely bald. She isn't sicker than ever but actually better than ever. I never imagined the process this way. I had convinced myself that Aria losing her hair meant grave illness and for some people it is. For Aria, however, it has been a different matter entirely. You couldn't have told me that this was probably how it was going to play out, though, a few months ago. It was something I had to experience in the moment and I am so grateful that I was mistaken in my fear. The conflict of knowing she is getting better but seeing her without hair like a poster child for cancer still takes my breath away sometimes but at least I'm not spending energy wondering what she'll look like bald. I'm used to her hairless body and I marvel at and even envy her creamy flawless skin. She is absolutely adorable. Her grace and confidence is so astounding and in some ways the fact that she can't hide behind the identity of her beautiful hair makes her even more interesting to me. She stands before me completely raw and without a shred upon which to mask herself. She is unaware of her courage and her strength and that is what makes her so empowering. You have no idea how honored I am to be with this exceptional and exquisite child.

It is worth mentioning that Aria has not lost her eyelashes, which would be the envy of Michelangelo's brush or her eyebrows with their light and feathery penciled arches. Now that her face has regained its pre-cancer shape and aura and now that her spirit has had a reprieve from the shackled torments of chemotherapy, Aria's beauty is almost blinding to me in its brilliance at times. It is as if her face in its resumed form and stripped of all distraction allows her full spirit to shine through her eyes. There are moments when she and I put our foreheads together, touching noses obscuring the looks on our faces and I can see into her eyes. I stare deeply and I take her in. She is a part of me and at the same time a complete and separate entity. I often want to fall into the well of those stares and dance in the joyousness of her spirit residing there. The beauty I sense is all encompassing. Time, for a moment, stands still. Aria will typically curtail the enchantment by spitting at me or some other such nonsense. She is, after all, 4 years old!

The other day, I was staring at her eyebrows and they made me think of something. I have in our front garden, called 'the welcoming garden', a glorious rainbow that my dear friend, David Repyak made. This large sculpture was first placed in our pasture one day this past winter. There, against a pastoral canvas of white snow, appeared a rainbow made of colors of tulle gently blowing in a frigid breeze. David had created 'Aria's Rainbow' and in honor of her and our family he walked methodically step by step around this rainbow creating the shape of a heart. I wish I had been in the frame of mind to take a picture, but alas, it remains only in my memory. He has since moved Aria's rainbow to the welcoming garden where it greets anyone driving by the farm. It is the most beautiful heart-warming piece of art we have displayed outside and it fills me with happiness from the top of my head to the tips of my toes. I noticed that the shape of Aria's eyebrows match to perfection the shape of her rainbow. I find this coincidence beyond words.

It is fitting to say that the magic of a rainbow, the beauty of a rainbow and the pause one feels when seeing a rainbow fully characterizes Aria. She is indeed a beautiful soul full of magic and when you encounter her there is an overwhelming desire to pause taking in the beauty you sense coming from her. It is a joyful and humbling experience to be with her and to be a part of her view. Lately I've been able to rejoice so deeply in having Aria's rainbow constantly present in my sight. I sense hope. Sometimes the hope seems as fragile as the tulle material itself and other times it seems as solid at the branches and rocks keeping the rainbow in place. Regardless, Aria's rainbow gentle nudges me to come away from the wondering of all the unknowns to the certainty of her present being. My spirit is filled with the beauty and magic of Aria and her rainbow. ~j

the other side

This email represents one of many moments of reflection.

July 15, 2008
Subject: The other side

In some respects it seems as if we are on the other side of what happened when our lives were turned upside-down. Reflecting on these 6 months I continue envisioning a cavern, which has been an incredibly useful theme for me. When I look at the process of what I've been through with Aria it feels a little ghostly as if a play was enacted in my mind without my permission.

You see, Aria's diagnosis of leukemia felt like the most invasive, bullied, disrespectful, hard-hitting, no-apologies-accepted shove into this cavern where I found myself alone, dark, chilled to the bone, frightened and without any clear sense of where to go or what to do. While in this place, my mind was nothing but a swirl of thought and emotion all the while I was physically trying to remain upright. A path was very clearly lit for me once my eyes adjusted to this new environment but it took every ounce of energy I had to take the first step down that unknown. There were a myriad of branching paths; self-pity, empty questions, blame, unresolved anger, defiance and so forth. I knew to go down any one of those would lengthen my trip and so for whatever reason I was granted enough clarity to face forward and move slowly and deliberately. This isn't to say that I didn't rub up against any one of those paths. I did. I toyed with feeling sorry for myself. I entertained anger for a while and I even found myself asking absurd questions for which there are no answers. I think it all a very natural and unavoidable aspect of the path. I think it would be impossible to walk as I have with incredible fatigue and sorrow and not once bump into the wall of self-pity or knock your head against a little anger that seemed to come out of nowhere. These have been helpful companions offering me valuable lessons but I've chosen not to unite with them for I recognize that they are heavy loads to carry with an already burdensome pack on my back. I remember telling you about the pin-prick of light I could see that was slowly, ever so slowly growing larger. Well, I truly have reached that light and it feels as if I have pulled away a silky veil that hung separating my cavernous path from the wide-open airy rolling one I see now.

It is beautiful to be here.

Before me is a long path awaiting us but the light is brilliant. It is so tempting to take a deep breath, sigh and say, "phew! Thank God that's over with! I'm glad we're here." It would be so easy to take that gently flowing veil with me never once looking back, keeping that part of the journey in the dusty attic of my mind where I can easily pile memory after memory into a hodgepodge of indistinct thought. I could one day take a peek at that muddle and simply swipe it away with the view that "it wasn't all that bad." However, I believe in doing so, I would be doing a great injustice to Aria, who has had to endure so much more than I. So it is here that I must pause and look back for a while. As I do so, I feel compelled to extend an enormous banner of gratitude to you for allowing me this avenue of expression and documentation. I can retrace my steps through these emails acknowledging all the way the many reasons we have to celebrate without ever once dismissing, under the guise of "it wasn't so bad", any of the trials we endured. These accounts of 'keeping it real' and 'living true' have been my sustenance in many ways enabling me to carry-on one step at a time. Writing the details of this journey has been more than cathartic. It has been the tool that has allowed me to rebirth myself anew. From the womb of an old life, I tumbled through a channel of perspective that taught me how to surrender to what I cannot control. As I pushed through misery, suffering and pain, I stand before you covered in that veil of joy, gratitude and light.

As I stand ready to begin the long walk with Aria toward recovery I am consumed with belief. I believe Aria will continue to prevail. I believe she will continue to heal. I believe each step brings us closer to cure. I believe I have the capacity to walk with her come what may. I believe her life is a gift and I believe I'm learning how not to squander it. I believe the mystery of Life will continue to reveal itself and I believe I am opening up enough to pay closer attention. I believe in my strength to see the end of this phase with jubilation. I believe that you reading these emails have touched Aria in ways that has done nothing but caress and encourage her spirit. I believe in Aria. I believe in Doc, Reo and Rianna. I believe in all the many people working to help Aria reach cure. I believe in You and I believe in Me. ~j

Aria's new treatment

July 3, 2008

Subject: Aria’s new treatment

I've lost my momentum for writing for the past few weeks. We've had company distracting me in the best possible ways and Aria has been feeling so well that we've been playing constantly. I haven't made time to sit and write as a result. My thoughts have been light and fleeting a lot of the time and that has been a wonderful little reprieve from the heaviness that has been a constant companion these past months. I really can't stress enough that 'no news is good news.' I also want to thank you for writing to me, writing to the kids and reminding me that we are never far from your thoughts...It means so very much especially now when we are burned out, sometimes trudging along, knowing more stable ground is within reach but with plenty of uncertainty yet to face.

On Friday, June 20, 2008, we went to clinic to check Aria's counts, which would determine whether or not she could be admitted to the hospital to begin the second half of Delayed Intensification. As you may recall, her counts were not high enough earlier in the week to proceed so we were in a waiting pattern. I've described this time in her treatment as feeling like I'm facing the summit of a climb I've been traversing for the past 5 months. The anticipation to push on and get to the top is great. We've been held back, however, by the weather of this process. Friday, we were eager, oh so eager, to just get it over with!

It was as if time stood still in clinic this day. Aria's blood was not going to be given easily through her port for some reason. It just wouldn't flow regardless of the coaxing that was attempted. The nurses thought they had been able to extract just enough for the lab sample but we discovered that it had clotted in the time it took to be transported to the lab. She would have to get a finger poke instead. Aria was a trooper throughout it all. Her ANC was 2100, which was more than enough to begin the next phase. I'll add that it is remarkable how quickly the body can restore itself. Just 4 days prior her ANC was slightly above 500. Aria was swept away to a procedure room where she had a spinal tap. Methotrexate, a
chemotherapy drug, was put into her spinal fluid as it is every time she receives a spinal tap. She was then admitted to the hospital where she received 3 new chemotherapy medications. One was given as a 'one time only' treatment. Another one was one she will have to take for 4 days in a row: dose #1 on Friday, #2 on Saturday while still an inpatient and then we'd return to clinic on Sunday and Monday for doses #3 and 4. She will take another 4 day course of this drug beginning on Friday June 27th as well. The last new drug is one she takes every day for the next 14 days. Aria was given a huge bolus of 'don't fro-up' medicine beforehand because these drugs can cause terrible nausea and vomiting. We were told to prepare ourselves that she might feel pretty sick over the next few days.

Aria tolerated all of her new medicines very well. She thoroughly enjoyed being in the hospital watching movies and visiting with nurses who are fast becoming old friends. Doc spent the night with her, while Reo, Rianna and I went home fairly early in the evening.

It is worth mentioning here that I thought the only reason for her needing to be admitted for this next phase of treatment was to make sure she didn't have some kind of strange allergic reaction to the new medicine. I discovered later, that that is only partly true. Dr. Trobaugh was able to come to our room in the afternoon and explain to me in detail the finer points of this treatment plan. Indeed, they want to monitor Aria closely while her body processes these new chemicals, but the main reason for her admission is to give her plenty of fluids. She was hooked up to an IV shortly after being admitted because she was dehydrated. I was aghast and felt like a rotten mother for not giving her enough fluids, but then Doc reminded me that Aria had a procedure at 1pm, which meant that she couldn't eat anything and could only drink water or a little apple juice. Aria hadn't taken in any food since dinner around 7pm the day before and she didn't have anything to drink except for what she drank with her medicine earlier in the morning. She knew she was having a big clinic day and just didn't want to have anything to drink. No wonder she was dehydrated! Poor thing was so starving by the time her procedure was over with!

I learned that the purpose of the additional fluids is to help the body flush out the drugs as they are broken down throughout her body. I was told that one of the drugs in particular gets caught up in the bladder, binding in a way that can make it bleed. Sounds horribly unpleasant so they keep the bladder nice and full so that Aria can pee constantly keeping those nasty by-products flushed away. Doc said that she was up going potty every 2 hours throughout the night! Other than that, however, she did very well.

We made it back to hospital the following morning around 9am. Time is the most extraordinary thing in this experience and I wish I wasn't so drawn to it. I had it in my mind that we would be able to leave the hospital "sometime" in the morning. Aria was doing so well that things had a 'routine' feel, which added to my growing expectation that we wouldn't need to hang around for very long. I had convinced myself that we'd probably be able to leave sometime around 10 or 11 at the very latest. We waited and waited and waited. The nurses needed direct orders from the doctor on call, who hadn't visited our room. When she did, sometime near 10:30, we were told that Aria would not be able to leave until she drank at least 4 ounces and kept it down since she'd been feeling sick and even threw-up a little.
This was a bit of a blow and so we tossed our expectations of leaving ‘any time soon' right out the window and settled in.

You know, it is no big deal to sit and wait. It really isn't. Yet, why is it? This kind of waiting is so reminiscent of airport waiting. There's plenty to do and look at and at the same time, I can't escape the feeling of just wanting to get on the stupid plane and get going. Delays, even for 30 minutes or less seem like an eternity. Lay-overs lasting hours are draining unique only to airport waiting. With little kids in tow, the luxury of disappearing into a good book or escaping into a magazine just aren't possible, so I'm left to my own devices, which slowly vanish with every minute that passes. Hospital waiting is exactly the same thing. It's no big deal that we had to hang around and watch hours of ridiculous cartoons. Yet, I could feel my energy slipping into the abyss of the waiting cosmos that numbs my senses. Finally though, Aria was given her chemo and drank some apple juice and over the course of the next few hours started feeling much better. We were able to leave the hospital around 2 pm. Time dragged along like a wet towel leaving behind marks of frustration, agitation and fatigued. We were all much sunnier and lighter by the time we gotbhome.

I am sitting here Saturday morning June 28, 2008 and it is hard to believe that a week has already flown by. We were told to expect Aria to feel really lousy. Her counts were going to begin dropping, which meant that her energy level was going to decline. Her appetite was expected to tank, fever alert was high and we were told that nausea and vomiting were common. Basically, I was preparing for the bottom to fall out. It never happened. You can imagine my relief. Saturday night my sister, Sue, arrived. We all went to clinic together Sunday morning for Aria's third chemo treatment. Sue was able to experience first hand what living in a hospital room as a family of 5 feels like even if only for an hour. The entire process went very smoothly and Aria continued to tolerate the new chemo without a hitch. She was energetic, and cheerful although her appetite was noticeably decreasing. She was thrilled to have her Auntie Susie with her. It was actually a nice day. Our pool was ready for swimming so we made certain that Aria's port was 'de-accessed' so she could play in the water. Normally, her port would remain accessed, making it easier to administer the 4 day course of chemo, however the healing power of being able to be a kid and play and swim is far greater than the practicality of keeping her port readily accessible.

Monday morning Sue, the kids and I piled into the car and headed to the clinic again for her final bit of chemo. I noticed, while sitting with her waiting for her port to be accessed, that I was feeling anxious. It was as if I was trying to anticipate any sudden change in her. "Am I ready to leap off this chair and race to the bathroom like I did so many times before?" I sat and wondered, "Is she feeling warm? Nope, she feels fine. Are you sure she doesn't feel warm? Check again." These were some of the mutterings playing themselves like a broken record. I kept having this image of walking along a series of trap doors very gingerly and quietly as if any minute one of them was going to suddenly spring open swallowing me into darkness. I sat there in the 'jelly-bean' room holding Aria breathing in and out deliberately calming my mind. The access of her port, the chemo injection and the de-accessing took all than 10 minutes. By the time we left the exam room, I was completely calm. Aria was thrilled to be done with this series of chemo and expressed more than once that she was free! We raced home to play in the swimming pool.

Aria's energy was remarkable. Swimming has proven a marvelous form of exercise for her. She wears a life-jacket still because although she can tippy-toe touch the bottom of the pool for the first time this year, she doesn't have the strength to navigate the water with any degree of confidence. She tried swimming with me without her life jacket and was insecure, finding refuge on the stairs. She was limited and after some gentle coaxing, she tried her life jacket and was instantly free to swim all over the pool. She was positively delighted. She and Reo spent hours, literally hours, in the pool swimming. It was wonderful. Although it is nearly impossible for me to forget, even for a moment, that she has cancer, I reveled in the power of play, the power of innocence, the power of childhood, the power of the moment and the profound power of her laughter. I spent a few glorious days basking in the glow of her joy, which left my spirit peaceful and light.

By Wednesday, Aria was beginning to change. Her energy was waning. She was becoming hyper-sensitive. "Don't look at me, Mama!" "Don't say that to me!" "I don't want to play that way!" Funny little moments would set her off into a fit of pouty faces and tears. It might be tempting to pass this off as typical 4 year old behavior and some of it I'm sure is, but we've had enough experience now to know that this is something else, something more. Her appetite was suppressed and her desire to drink even more so. I find this challenging. How can I convince a 4 year old that she needs to be drinking something to remain hydrated so that she doesn't get sick when she doesn't feel the least bit thirsty? It is one more nagging thing she has to contend with. "Aria, honey. You have to keep drinking. I'm sorry you don't feel thirsty. Won't you please have 2 sips of this juice?" Again and again my voice rings in her little ears. It is important, to my mind, to remain as gentle as possible so that voice doesn't become some kind of noxious gong. I doubt it is any kind of song bird or sweet chime but hopefully somewhere in between sweet and sour. Aria didn't show any signs of nausea or vomiting, for which I am so grateful. That aspect of chemotherapy is by far the most stressful. It is the urgency, the helplessness, the suffering, the discomfort and the unavoidable 'gross-factor' that make it so hard. I am thankful that we haven’t had to deal with that. We’ve had our fill of it!

My other sister, Linda, arrived Thursday afternoon (June 26, 2008). Aria was in good spirits and was able to play and swim. Linda commented that she had expected a lot worse and was relieved when she saw Aria. Sue's perspective was a little different because she had seen Aria 5 days before and the change in her from then until now was distinct. Sue was worried. Linda was just beginning to take it all in. They were able to take the kids for hours and hours and hours.
The played with them, swam with them, watched them in the sand pile, played games, read stories, changed diapers, gave baths, prepared snacks and so forth. I was able to detach and make dinners, and do things from start to finish, which is something I haven't been able to do for months. It was a wonderful feeling. I was able to talk on the phone without being interrupted. I took showers by myself. I wrote a few letters and did some writing. It was relaxing and rejuvenating having them here knowing that they were thoroughly enjoying their nieces and nephew. They were creating memories with them. It was lovely.

Friday (June 27, 2008) rolled around all too quickly and we were heading to clinic again for lab work, an examination and more chemo. Aria was going to begin round 2 of the 4 day course of chemo. Everyone was completely impressed by how well she was doing and didn't hesitate to say so. My reaction to this was stunning. On the one hand, I was relieved and happy to hear that from their perspective my sweet girl was doing exceptionally well. On the other hand, I simply could not resist wanting to hear, "Aria's going to be just fine. She's doing so well now that there is no doubt that she will be cured and live a perfectly healthy long full life." I know this is absolutely absurd. There are no promises. There are no guarantees. I know this. I know this. I know this. I still can't help feel the need to be reassured in this way. It was a gentle reminder that I have work still to do in the areas of attachment regarding fear and trust.

The clinic was exceptionally busy. It was somber but children always bring an element of festivity so there was also lightness to the mood. My sister Sue had never experienced anything like it before and her eyes were wide, taking it all in, processing everything she saw and heard. I could only imagine what she must have been feeling. Watching her reminded me of our first visit to the oncology clinic and my contradictory senses telling me that I was falling and floating at the same time my feet were firmly planted on the ground. She was so gracious and helpful to me. She chased Rianna everywhere and entertained her so I could chat with other mothers and professionals who came to see how we were fairing. Linda, who has a lot more clinical experience wanted to understand the process. She accompanied Doc and Aria for everything; weight/height measurement, vitals, port access, blood draw, chemo and de-accessing her port. Both Sue and Linda came into the exam room with us while we met with Dr. Trobaugh's partner, Dr. Judy. Aria's ANC had dropped to 830, which is a significant decrease but not yet at the critical stage. It was nice to be reminded that her counts, although sinking, do not determine whether or not we can continue with treatment. Dr. Judy thought Aria was doing exceptionally well and said so more than once. She, however, said that it was time for Aria to receive her first blood transfusion. My heart sank to my stomach.

A blood transfusion? We made it this far without needing one and now we have to go ahead? Really? Ok, this is where "performance Julia" started to show herself. In the deep recesses of my twisted mind I had a moment when I actually sensed a feeling of failure. The fact that Aria had dodged that hurdle for this long and it looked like we might skate past it altogether was a real feather in my bonnet. It was a badge of "isn't she doing so well, she hasn't even had a blood
transfusion, yet." As I sit here and spill that aspect of myself for a complete and thorough cleansing, I'm disgusted by the muck I see. That badge was ripped from my puffed out pride-filled chest and replaced with a decorative shining medal reading, "doofus!" As if Aria needing a blood transfusion had anything to do with me at all and yet in my immaturity, I made it about myself. Fortunately, the thought didn't linger and I was able to let it go and allow whatever needed to happen soak in. I found myself actually needing to put the idea of a blood transfusion out of my head altogether. The idea of failure was gone but there in its place was 'severity' and I was forlorn. Aria is doing well and at the same time she isn't and that's difficult to reconcile. Blood transfusions are normal in this process but at the same time in the realm of what I used to know as being normal, it is anything but normal. It is tempting to say something dismissive like, 'What is normal anyway? or normal is all relative." Both sentiments are good ones and I have found myself saying them repeatedly but I've noticed, however, that they don't address my feelings. Instead it's a lot like shooing a persistent
yellow jacket buzzing around my head. My hand will gently attempt to swat it away but it is tenacious and continues coming back. My gentle air-swipes are ineffective in persuading it and so I fully awaken to its presence. It is here that I have to recognize that an annoying bee is hanging around me and I can either kill it with my shoe or get up and leave. This is what I'm discovering is most helpful when emotions and situations unexpectedly present themselves. I notice that sometimes I can gently swat them aside, but they always come back so it better to take time to examine my emotions and my feelings when they come up so that I can take care of them once and for all.

While Aria was being evaluated,I was tense and a little sad. Aria needed to have a blood transfusion. "I accept that." I tell myself. Aria's feet had blisters developing on the bottom of her toes as a result of the chemotherapy. We'll have to watch carefully and make sure they don't get infected. "I'm equal to the task." I hear myself say with confidence. I'm breathing deeply and rocking side to side as I hold Rianna. I'm stressed and conflicted. Aria is doing so well. She has avoided most of the major issues associated with this phase. Why am I so anxious? I glance over at Sue and Linda sitting absolutely still and completely quiet on a nearby couch. They're holding hands, staring at Aria, taking it all in. They personify what I'm feeling. They're holding on trying to make sense of a process that is monumental. I found their presence extremely comforting and affirming. Aria is doing well. It is true. This truth, however, doesn't lessen the task at hand. Knowing that she is doing well gives me more breathing room, more time to sit and rest and enjoy but onward and upward and forward we must still go.

Aria's blood was going to have to be ordered and the transfusion was scheduled for a few hours later. We decided to go home for some lunch and a little break. It didn't seem to make sense to have us all stick around only to hang out in a hospital room for 3 hours while the blood was slowly infused into her body. We decided that Doc and Aria would return to the hospital when we got the call that her blood was ready and the rest of us would stay at home and play. The drive home was quiet. I can't emphasize enough how odd it is emotionally to know one thing, “Aria is doing great at this stage of treatment” and feel something different (it is heart-wrenchingly sad to watch her endure day after day what she must). It was here that Sue could no longer hold her tears and as they spilled forth she shook her head in disbelief unable to suppress her sorrow over the suffering she saw.

My initial reaction was to remind her that Aria isn't suffering but I silenced myself. This was Sue's first real clinical experience with Aria as well as seeing several other children and their families. One can't help but look and stare and wonder at what fate has dealt these people. As I drove home, I thought about the word "suffering" and what it implies. When I think about suffering, I hear moaning. I see blood. I see life battered and bruised. I imagine horror and mayhem. Aria's clinic experiences are not the pandemonium conjured in my mind when I think of that kind of suffering, but there is suffering. Families are changed forever, some cope better than others. Children endure pain and discomfort that they get used to and become masterful at predicting their own care. Play-time is guarded and selective as it defines their childhood experience. Living with tangible uncertainty is a constant presence. Morpheus from the movie "The Matrix" says it perfectly, " a splinter in your mind...." It takes some time but eventually the psyche accepts, "it is what it is." I moved on from the notion of suffering because Aria must do what she must in order to live and my job is to minimize her suffering as best as I can. For me, one of the best ways to accomplish this is to understand myself as I share this experience with her. It is my belief that the strength of Spirit dwelling within me is getting stronger as I know and accept myself. Aria's spirit and mine are connected. They are one.

Aria left for her blood transfusion a few hours later. Everything was just fine and the entire process took about 4 hours from start to finish. By the time she got home her cheeks were rosy but she was exhausted so we tucked her into bed. By Saturday we launched into what would be a spectacular weekend. Aria's energy was tremendous. That blood transfusion was like a quadruple latte to her little body. She was chatty and imaginative rearing to go. Watching her reminded me that fear of the unknown often creates such negative emotions that have so little to do with reality. I'm sure it is a defense mechanism of sorts because when I imagine trying to be positive about something that frightens me I hear something like this,
"Hey, Aria needs a blood transfusion? Wow! That's great. I don't know anything about it and I'm scared to pieces, but gee, I bet everything's going be just dandy! I can't wait to face yet another unknown!"
I sound demented and if I don't seem like I'm fully bonkers, then at the very least I sound not only unconvincing but insincere. The trick for me is not to dwell in that place that is negative and then invite its friends to stick around. Rather, I have to sit in that dark spot for a period of time, understand it, and find some kind of comfortable position so that the light of my usually joyful spirit can once again take up residence.

Linda flew home on Sunday and Sue followed suit Monday morning. The memories they made with my kids are without a doubt the most important thing they could 'do' for me. All the busy work that needs to get done on a daily basis does, in fact, get done with or without extra hands. Those tasks still offer me a great deal of satisfaction and sense of accomplishment, but seeing my children full of joy, creative spirit and freedom is priceless to me. I'll never be able to fully articulate my gratitude to my 2 beautiful sisters. Having them here was powerful and healing.

Aria finished her 4th and final round of the 4 day course of chemo on Monday July 1, 2008. She remains is a wonderful place. I don't know what her counts are and I expect that they are continuing to go down. I'll find out today, Thursday, July 3, 2008 what her numbers are. The thing about her counts going down is the increased risk of infection. But, we now know this process. Aria can get a funky fever completely out of the blue and we head to the ER where she more than likely gets admitted for a few days with high octane antibiotics and we go from there. The mystery and scare are gone with that process now. It is my understanding that when she finishes all of her chemo in this phase of treatment, that we'll have a week off or so and her counts will continue to decrease for a day or 2 and then they'll start to recover. They'll need to reach a specific level in order to head into the last phase of treatment called "Maintenance." The recovery time of her counts is dependent upon whether or not she incurs a bacteria or virus. We'll see.

We are so near the end of a heavy phase of treatment and Aria, my warrior, remains standing tall and firm. She is confident and dazzling. She is flowing like the gentle stream upon which we now ride. It occurs to me now that I am quickly approaching the summit of this phase and there waiting for me is Aria. I've just in this moment realized that she is ahead of me on this journey. She is carving the path whose foundation has already been well manicured by the thousands of kids and families traveling before her. Still, she has her own path and I am following closely behind. As I sit here typing, I can see her so clearly in my mind's eye standing on the peak of a brilliant mound. She's holding a wooden staff that is slightly taller than her. She's smiling and inviting me to join her as she waves her staff toward the direction of the sun. The light is yellow and orange and our path is a swirl of color but very clearly defined. I'm pausing for a moment to look behind me. The darkness of the cave where I was for a long time is behind me and it isn't following. The darkness of these months has receded and remains exactly as it was but I'm no longer there. I've moved on. What I see ahead of me isn't hope. What I see is a wish and a promise. I'll be joining Aria very soon on this mound and when I reach her I will embrace her with every fiber of my being. I will raise her above me in awe and send my blessings out. You, too, will reach this mound but we won't be here. We will have moved on toward that wish and promise. ~j