Tuesday, August 4, 2009

Painting a picture

May 15, 2008
Subject: Painting a Picture

I’ve read many stories of how tragedy whether it is death, illness, injury, divorce or disillusionment effects peoples’ lives. Some describe it like a tornado appearing out of nowhere ripping the contents of a life once known into a mass of unrecognizable sharp dangerous fragments. People talk about it like a tidal wave washing over everything familiar and leaving in its place a foreign wasteland. Often, people refer to ‘picking up the pieces’ of life as if it is a puzzle that was put together and now lay strewn on the ground waiting to be reconfigured.

I’ve thought deeply about these descriptions and others and I’ve come to realize that it is a very personal experience. That may seem ridiculously obvious but the stories I’ve read have had such conviction as if to suggest “this is how it felt for me and therefore this is how it will feel for you!” I’ve read these stories wanting to find one that perfectly described my experience and my feelings and had elements that resonated and spoke some truth but most of them were violent, full of a fiery force that was unfamiliar to me. I realize that only I can describe what has happened to me and my view of life now. Even Doc, I’m certain, would describe the experience in a unique way. That is the beauty of it. Once again this reminds me that despite similarities any of us may have, we all have very different paths to journey but this doesn’t render me unable to understand and empathize with someone else. I’ve said it before but anguish is anguish no matter its reason. Sorrow is sorrow no matter the source. Joy is joy and so forth. We are all fully capable of such a range and I find that powerful.

By far, the most violent feeling I’ve had that is grotesquely cliché is that of a rug being pulled out from under me. A falling down sensation that was suspended and painful, leaving me with the wind of my core punched in my gut like a ball of bread dough. That’s been the most painful and distorting aspect of this entire journey and it was instant but short-lived.

I’ve thought about the notion of “pieces of my ‘old’ life crumbled “at my feet and my purpose is to now salvage those pieces that were left intact while simultaneously creating new pieces and constructs of my ‘new’ life; my new normal. That imagery has not been helpful. Instead, I have seen very clearly a large painting before me. I have it in my mind that what I thought life was going to be like was already painted on this canvas. I was able to passively look at it, pondering its colors and shapes as well as its ingenuity and resemblances. Perhaps I was the painter, but that isn’t clear to me.

What is before me now is not a blank canvas by any means, because the foundations are all still there. My husband, my children, my animals, my extended family, my friends and acquaintances, my home, my gardens, my interests, my dreams, are all still permanently etched in the canvas defining my life. I’m certain that each of those things has been gently painted and colored over the years whether I was aware of it or not. What happened to my painting though, is that all the colors that defined what I knew before January 15, 2008 have drizzled to the bottom of the canvas in a large swirling collective puddle. The colors are vivid and distinct as opposed to a muddy brown that occurs when mixing a myriad of paint. These are the colors of what I thought my life was. I look at them now as a brilliant palette of choices. I see very clearly that my task is to begin painting again and some of the colors I’m discovering I would never have known had they not gently cascaded down my canvas collecting others as they fell. Stroke by stroke, dot by dot, finger print by finger print, I am repainting, redesigning, reassessing and it is a beautiful image.

For the first time perhaps, I am awake to the process, completely focused and a full and active participant. It is clear to me that I am the painter now and that Life has misted over with trickling and smearing colors what I once knew, so that I can be fully present to what guides me as I create something else.

I’ve always wanted to be a painter. So here I am in Life’s smock, with infinite colors on my canvas waiting to be chosen, waiting to be added, waiting to be noticed. I’ve been given a rare opportunity and like anything in life I can choose to focus on what’s positive or what’s negative. Clearly, I believe that life is meant to be joyful and full of happiness while reducing suffering. As I begin to paint, I’m entirely aware of the light and suddenly the darkness that has been shrouding my view is casting a shadow on my canvas. It is my hand holding Life’s brush and like magic, I begin to create. ~j


At this stage of Aria’s treatment she still had hair. It was short and coarse in texture but she wasn’t immediately identifiable as a kid with cancer. That day was only about a month away and I was at this time readying myself and her for the stares, the wonderment and the comments that people would inevitably make. This was the beginning of that process.

May 9, 2008
Subject: Innocence

Just the other day, Aria and I were sitting at the kitchen table eating a snack. Aria looked up from her ice cream and said incredulously, “Mom! You wanna know what Gabriella said to me? She said I look like a boy.” My heart sank like a stone smothering my spirit but as luck would have it, I had one those moments of clarity. I thought to myself in almost a whisper, “Be gentle. Your reaction in this moment will forever add to the foundation of her ability to cope with being different.” That may sound grandiose but it was in my head nonetheless. I took a deep breath and noticed that I wasn’t reacting to her comment. I looked directly in her eyes so she could see me taking a deep breath and pausing. I said, “huh...” Her eyes widened. “Tell me Aria, do you think you look like a boy?” She almost spit her spoon out of her mouth in response to my question. With a crooked smile, eyes filled with mischief and a wave of her spoon like a magic wand she emphatically declared as if Gabriella needed her eyes checked, “No!” I said calmly, “I don’t think you look like a boy either so why do you think Gabriella said that?” Aria was thoughtful scraping the sides of bowl for that last bite of ice cream. “I don’t know,” she said. “huh” I began. “Well, maybe she said that because your hair is short now and most boys have short hair.” “Yeah!” she said brightly, “Boys don’t have long hair, they have short hair!” I replied, “Well, some boys have long hair and I bet sometimes people think they look like girls.” Aria paused a moment and said, “oh. So, I have short hair and I used to have long hair and soon I’ll have no hair. And, I’m a girl!” I was completely choked up but managed to utter, “short hair, long hair, no hair, you are an extraordinary girl.” Aria furrowed her brow in disgust. “Mom, I’m just a girl!” I nodded but my mind again whispered, “but what a girl you are!”

This conversation happened about 2 weeks ago and it has been on my mind ever since. It isn’t the only time someone has said something like this. Recently another child said to Aria, “Your hair looks funny!” Once again, Aria handled this beyond anything she’s learned from me when she said, “Well, soon all my hair is gonna fall out and then it will all grow back!” Her friend asked, “Well how?” “I don’t know” said Aria, “It just will.” That was the end of that. I didn't witness either of these interactions. Aria told me these stories and it was obvious to me that she was processing them and their newness. I can't help but wonder if she was considering their implication as well.

I’ve mentioned these stories to a few people and the natural first reaction is one of sadness mixed with horror. Comments like, "Oh my God! That is so mean!" or I can’t believe some people!" As adults, we know all the layers involved in the emotions these kinds of comments elicit. Some have advised me to contact the parents and “educate” them about how to better prepare their children as well as hoping to teach them to be more sensitive. It is tempting to react and say, "You know, your kid said something to my child recently that wasn't very nice...." But I'm learning how not to react in this way and consider for a while the reasons why comments like these trigger my emotion. I'm learning that when I'm triggered in some way, it is because there is some truth that I need to examine. In this instance, Aria was fine. She was unhurt and was able to move on without a blemish to her sense of self. I, on the other hand, was caught off guard and knew I was being presented with a lesson.

Yes, my heart sinks when I hear comments like this but after some thought, it is very clear to me that the intention behind them is completely innocent and what’s more important is the comments are, in fact, honest. Indeed, they may be insensitive and even hurtful, but I sincerely believe that is not the meaning behind what has been said. Even so, it was worth thinking about in order to help me feel more confident in guiding Aria, who is more than likely going to experience sudden baldness soon inviting all kinds of new looks, stares and comments. I needed to think deeply about how to redirect children with more appropriate word choices that still address their natural curiosity and at the same show Aria that she is different looking but still perfectly Aria.

It is my belief that people stare and wonder because they are simply waiting to be invited into what’s happening in our world. I firmly believe that in these situations great compassion and understanding is needed to support both Aria and those who are interested in her. I waited for my inspiration and it came in such a peculiar and lovely way.

Yesterday, I was watching Bambi with the kids and it was Thumper who inspired me. In a quiet thicket resting beside his mother surrounded by forest animal friends, the young Prince awakens. Thumper is the first to exclaim that he, Bambi, is trying to stand. He is a curious little bunny watching Bambi closely and remarking immediately when he falls, “Kinda wobbly aren’t ya?” His mother is aghast and quickly utters disapprovingly, “Thumper!” He immediately understands his faux pas by the tone of her voice and he hunches down, ears flat in somewhat false shame. He quickly recovers his composure and under his breath as he stands and his eyes widen, he says rather sheepishly, “Well, he is.” Later in the movie a similar instance occurs and once again Thumper is reprimanded by his mother who reminds him, “And what did your father tell you this morning?” Thumper sighs and recites with resignation, “If you can’t say somethin’ nice, then don’t say nothing at all.”

I’ve been told this many times too and it has caused me to think deeply and perhaps even differently. I come back to the idea of ‘being honest’ and the ability to ‘take honesty,’ which, I think, is infinitely more important. I think there is some truth to Thumper’s mother’s sentiment but only as it applies to the nature of gossip, untruths, misinformation, and the needless desire to elevate oneself by diminishing the humanity of another. Truth is truth and sometimes it is painful. Sometimes it comes out in ways that are harsh and tactless. Sometimes it comes out and hits us in the face after tremendous efforts have been made to keep it subdued or even hidden. With life experience and mindfulness, truth can be expressed, regardless of its darkness, with consideration and even kindness.

What Thumper said was entirely true and his intention was nothing more than to express an observation. Thumper was simply observing that Bambi was wobbly on his feet. He meant nothing other than that. Wobbly didn’t mean stupid, or ugly, or unworthy or anything negative whatsoever. Similarly, with the children who made comments about Aria’s hair. It is true that she looks like a boy if all your experience in life tells you that boys have short hair and girls have long hair. Her hair does look ‘funny’ particularly if that word means different and in this instance, I’m convinced that it did. I can’t imagine scolding these children or even telling them what they said wasn’t nice. I think it might be confusing to them, perhaps making them insecure because what they had intended, which was innocent, somehow backfired becoming something bad and regrettable. Instead, I see my role in this matter to model sensitivity, tolerance and acceptance. I certainly don’t believe that in doing so I have to squelch their curiosity that with time and age will invariably be suppressed.

With respect to Aria, it is my hope that I can be one who models being different all the while being confident and content. In some ways, the fact that I am examining this lesson now is a blessing. I hope I can help her build a strong foundation of self so that when the years of conformity become a real challenge she will have what it takes to stand her ground and take the honest truth. These ‘situations’ and expressions of honesty are providing valuable opportunities. It is a lot for a 4 year old to endure and she is certainly gaining life experiences that are unique and will define her differently from her peers. For now, however, preserving what is innocent about being 4 years old is what matters to me most for Aria and her 4 year old friends.


Being home

May 10, 2008
Subject: Being Home

This has been a wonderful week. Aria hasn’t felt this well in months. It is amazing to see in a week’s time her appetite return, her energy level increase and her desire to be independent soar. She is resting well at night and naps for up to 4 hours during the day. She has had no vomiting or diarrhea for over a week. I have an overwhelming sense of relief that I’m savoring. The weight of ‘urgency’ has been lifted for a short time and I’m grateful. I don’t have to put the baby down quickly to rush and scoop Aria in my arms as we dash to the bathroom. I’m not waking in the middle of the night running to her to help to the bathroom, nor am I in bed listening to her vomit while Doc is comforting her. I’m not struggling to find things for her to eat that are healthy and full of calories. I’m not watching her, dismayed that only a bite or 2 of what used to be her favorite food is now making her tummy feel ‘fro-uppie.’ I’m not carrying her and Rianna up and down 2 flights of stairs throughout the day. This had has been a wonderful break for us all. Like Doc said last night, “I’m just so glad Aria gets to have a little break and feel like herself again.”

When we arrived home from the hospital, Aria’s counts were still low and below the recommended level for visitors. She was also not able to go outside and play nor was she allowed any fresh fruit or vegetables. Shockingly, the bacteria that naturally occur outside and on fresh fruit and vegetables could be enough to make her sick. Our vigilance remained high but seeing her feel so much better made us feel a little more relaxed. By Monday morning, we were hoping to see her counts improve and were a little stunned that they hadn’t. It was worrisome that she wasn’t bouncing back as quickly as we had hoped. Dr. Trobaugh was concerned and also a little surprised so we were told to come back to clinic on Wednesday to check her counts once again. Aria’s counts have to be 750 or above in order for her to resume her chemotherapy as well as stay on track for her Delayed Intensification phase of treatment, which starts on May 16, 2008.

Every day Aria seemed to improve. She was back to telling her jokes, which always make me laugh.
Aria: “Hey, mom, let’s tell jokes!”
Mama: “Fire away.”
Aria: “Mom, I’m gonna poop on your head!” Aria throws her head back in a peel of laughter. I’m giggling too and acting completely disgusted.
Mama: “Aria, I’m going to pee in you ear!”
Aria: “Ewwwwwwww! Hey, Mom, I’m going to poop on your eyeball.”
Mama: “Aria, I’m gonna poop on your toes!”
On and on this goes and we bust ourselves up with this nonsense. Aria’s laughter is true music to my ears and having her personality and spirit freed from the confines of chemotherapy has been glorious.

It is a short reprieve, but we are learning to enjoy these moments as well as be fully present to them. Aria’s Wednesday counts shot way back up to 1,000 and this was great news. Her immune system kicked in, which is reassuring to know that her body can recover given enough time. The weather has been beautiful so I’m delighted that we are able to be outside playing and enjoying the fresh air.

Doc and I are going to enjoy this down time before Delayed Intensification, which I have said more than once is intense (8 new chemo meds for starters!). It will be a focused time for me because we’ll be going to clinic every week sometimes every day during the week for treatments. This phase is 8 weeks long provided there are no bumps in the road. After we reach the end in early July, we start the maintenance phase of treatment and by all accounts this is a level path with much of the same scenery that is easier to travel. What we face now is our longest and most challenging climb. Doc and I are preparing both mentally and physically and right now being quiet and at home with the family has proven to be exactly what we need.

I’m learning that my needs often present themselves only in the moment. I used to be able to plan and anticipate but life right now has extinguished those abilities and in their place I’m forced to practice greater flexibility and spontaneity. These have been wonderful teachers offering a host of new perspective. In this moment I am very grateful for them.

It is no small wonder to be well and healthy. ~j

Aria is in the hospital April 2008

This is one of the longest emails that I have ever written. It details our very first hospitalization since Aria’s diagnosis. Although this is lengthy and reviews our several day stay, it is still hard for me to imagine what it is like for so many others who finds themselves having to stay in the hospital for weeks and months at a time.

Hospital time is unique and extraordinary. There are moments of awe that encompass the spectrum of emotion and it is both a restful and restless time. I love to hate our hospital stays but I also hate to love them as well. Once again the duality of life that begs to be transcended into the spiritual realm calls to me as I seek maturity along this path.

April 26, 2008
Subject: Aria is in the Hospital

It is Saturday night (almost 9pm) April 26, 2008. Let me preface this discourse by saying that wondering, imagining or even dreading something is infinitely worse that actually experiencing it. As you know, it has been a great worry of mine thinking of Aria with a fever and having to race to the hospital at a moment's notice. Add to this, the worry of a fever happening on a weekend day when the clinic is closed and we have to go through the ER. I remember being home those first few weeks from the hospital just filled to over-flowing with this dread. I couldn't imagine what it would be like. I couldn't fathom the emotional rollercoaster that was likely to ensue. It was almost too much to bear. To some degree, this anxiety has stayed with me but it has lessened with time and it helps that I'm familiar with the clinic. I know people there, both professionals and patients. I have developed a sense of community, if you will, and it has been a great comfort.

This past week was rough for Aria. She began the week feeling ok and we were delighted because her medications were cut in half in order to increase her counts, which had dropped to 540. Dr. Trobaugh wanted to decrease her chemo in order to bump up that number close to the desired target 750. By Tuesday, however, Aria started vomiting more often during the day and was generally feeling crummy most of the time. By Wednesday, she woke up in the middle of the night with diarrhea and vomiting. Despite this, her spirits were high and she didn't have a temperature, so we just watched her closely. Friday morning, I called the clinic to tell them what was happening since Thursday didn't see much improvement. It was so strange because Aria wanted to go to school on Friday and was totally up for it so I thought she was feeling better. I called the clinic just for documentation purposes and knowing that we were heading into the weekend. Dr. Trobaugh asked me to stop her chemo meds for a few days to see if the nausea, vomiting and diarrhea improved. Aria was completely wiped out by the time I picked her up from school and she remained wiped out for the day, although she didn't have any more vomiting or diarrhea.

This morning we woke up to a gorgeous day. It finally felt like spring and we were all excited about being able to play outside. Aria felt a little warm to me when she first woke up but I dismissed it thinking it was because she had just gotten out of her cozy bed. She cuddled with me on the couch for about 30 minutes, which is somewhat unusual for her. She was dozing quite a bit too, which got my radar up. I was drinking some coffee and reading the morning paper and she had cooled down so I just thought she was feeling punky. She perked up a few times and was really rather animated so things were looking good. It was around 7am and Doc carried Aria upstairs to join Reo in watching a movie. About 30 minutes later she called out to me in tears saying that she thought she had had a "little poopie accident", which for her is completely devastating! I picked her up and took her to the bathroom to clean her up and all was fine except that she felt a little warm again but not really feverish. I decided to go ahead and take her temperature and was stunned that it read 101.3. I instantly knew that we were heading to the hospital and I didn't know how to tell Doc, who was in the other room getting all of his gear ready to go turkey hunting tomorrow. I was completely crushed because I knew he was so looking forward to having some time outside by himself in order to have a really nice break. The weather was going to be perfect and he was just buzzing around excitedly. This is rather hard to articulate because intellectually it is so easy to just 'give up' these things that comparatively speaking don't matter in the least. Emotionally, on the other hand, it is something a little different, albeit the intellect dominates quickly, suppressing the emotions but still they come up. It is a murky water to find oneself without reserves and needing time to replenish those reserves, only to have a plan in mind that is suddenly shattered in a moment. The good thing is that the mind takes over, rebuilds almost instantaneously and we move on.

I hesitated telling Doc for only a moment or 2. I suppose I was trying to wrap my head around the idea myself. I held Aria and told her that we would likely be going to the hospital so we better hurry along and get dressed. I carried her with me and told Doc the news. Almost in the same motion, I called the inpatient unit and asked them what exactly I needed to do. I already had some idea. I knew that a temperature of 100.4 meant that we just pack up and head straight to the ER. I called because I wanted to see if we actually had to go to the ER or if we could avoid that hurdle altogether and if not, I was hoping they could be told of our arrival ahead of time in order to expedite the process. At no time did I entertain the idea that I would be told to stay home and just monitor her temperature. This realization was crystal clear to me and I simply needed to know step by step how to proceed. The nurse I spoke with told me that Dr. Judy (one of Dr. Trobaugh’s partners) would call me back with instructions. In the meantime, my do-do-do button was pushed and I immediately began tackling my checklist. I checked the pre-packed hospital bag that had been sitting under a chair untouched since we got home from the hospital in January. I packed a bag of snacks. I checked diapers and wipes for the baby and so on and so forth. I was washing dishes trying to be mindful, when I noticed that I was shaking despite the fact that I felt reasonably calm. My thoughts were clear and I didn't have any dread or anxiety but I was still shaking. I marvel at how the mind tries to convince the body and sometimes the body does what it will. Waiting for Dr. Judy's call was an eternity! When I realized that thought, I simply laughed and said, "hello anxiety! There you are!" The phone rang and I answered, "Hi Dr. Judy, I suspect you are going to want to see us pretty soon!" to which she replied, "yeah! I would love to see you guys!" We exchanged a laugh that was sincere, rather than one that was trying to mask the angst I was feeling. I asked her about the ER and asked if there was a way we could avoid that. She told me, "Well, today is your lucky day! I'm heading to the clinic in a little while and I can just meet you there!" She advised wanting to see us sooner than later. It was 8am by this time. I was so relieved and at the same time I instantly knew that we were going to be admitted. Doc was sitting at the dining room table with Aria's notebook listening to the conversation. When I hung up the phone, we looked at each other with closed mouth smiles and eyes wide open. We both took deep breaths and we were ready. Reo and Aria were still watching their movie and I didn't envy Doc's task of telling them that their movie would have to be cut short. Reo has quite a temper and can be very stubborn so that additional energy was not something fun to consider. However, I went upstairs to finish getting dressed and encourage Reo to get dressed when I heard Doc with the kids. They were having a ball. I could hear that he had completely redirected them off their movie toward the movies they were going to be able to bring to the hospital. They were each allowed 2 movies of their choosing and they were positively delighted! It was so great and was one of those extraordinary parenting moments where patience and creativity in light of stress pays off. We were in the car soon after and on our way.

We made the whole experience as cheery as we could. We are so familiar with the surroundings now that it isn't all that hard to find really fun things to think about and focus on. We walked onto the ward and as we walked by the front desk we were immediately told which room was going to be ours. I suddenly saw many familiar faces; people we don't see regularly in the outpatient clinic but saw frequently while we were in the hospital. Aria's port was accessed and labs were drawn and then we waited. It was 9 am.

It is now Monday morning April 28, 2008 and we are still in the hospital. It is worth letting you know that all is just o.k. Aria is better today than she was yesterday, although things are slow. The fact that as a result of her chemo her counts tanked and she got a fever is simply the name of the game and what we can expect to happen for the next few years. We are learning to be flexible and to go with it but right now that is only an intellectual exercise.

I want to finish telling you the story of Saturday when we were first admitted and what happened on Sunday, if you’ll indulge me. After Aria’s port was accessed on Saturday morning we waited for hours. Literally, it was noon before we had any preliminary information. We were settling in and I was feeling more comfortable with the idea of having to stay for a number of days. You know, I can hear my voice saying that right now, trying to convince myself, but in all honesty, being here is hard and I fight this feeling of just wanting to go home and feeling disappointed when we can’t. The days are long and boring and I’m trying to be well with the psychology of that. I know it makes perfect sense. Who in their right mind wants to be here? It really is an easy thing to intellectualize but that isn’t the issue. Emotionally there is this struggle between what I know needs to happen and in some ways I’m thrilled about the level of care Aria is receiving but I also can’t escape feeling like I just want to run down the hall away from the reality of it all. It is a peculiar flight or fight thing when in actuality fleeing isn’t even a remote possibility. So I’m learning to plant myself with deep strong roots so that I sway with solid confidence despite the winds trying to knock me down.

Dr. Judy came to see us sometime in the afternoon and let us know that we’d be staying for at least 48 hours. Aria’s temperature had dropped to 99.9 but Dr. Judy insisted that once kids have a fever greater than 100.4, they will stay for at least 24 hours. There are 3 criteria that have to be met before Aria can be discharged; she has to be fever-free for at least 24 hours, she has to have negative blood cultures, and she has to have an overall ANC of 250 or greater. It is worth mentioning that the blood cultures were taken with her initial lab work and are constantly monitored to determine if any bacteria are growing. They are repeated with new blood draws every 24 hours if her temperature exceeds 101.0, which ended up happening more than once over the course of the day.

When Aria arrived at the hospital her platelets were 19,000 (normal is 100,000+), her hematocrit was 22 (20 is the cut-off for a blood transfusion), I can’t remember what her white blood cell count was but let’s just say there wasn’t much there and her ANC was 0! As Dr. Judy said delicately, “Well, you guys aren’t going anywhere for a few days!”

I was actually amazed at how quickly time passed despite how dull it can be. The real challenge we discovered is Rianna, who is all over the place. She has changed so much since our last hospital stay 3 months ago. Rianna has now found the joys of being able to open the bathroom door so her exploration possibilities have increased exponentially! OY!! In and out and in and out she went. She learned how to turn the shower on and drench herself, which was really cute until she made a huge puddle on the floor and proceeded to wipe out in it. She also thought it was great fun pulling the red emergency cords, which we have now tied and taped to the walls. At one point, we turned our backs for what felt like no more than a second to get Aria and Reo something to drink and Rianna had managed to fill the toilet with paper towels and plunge them in and out and in and out. You can imagine the delight on her face. It would have been hysterical if the mess wasn’t so huge and we had extra energy to see it for what it was. Instead, we were wiped and we just dealt with it. We quickly learned that she couldn’t be in the hospital room for very long. It is just too hard on the rest of us! We’re trying to figure out what to do with her. She’s always in great spirits and really doesn’t fuss but this confinement for her isn’t very fun.

Aria was pretty wiped out all day long. She napped some and had some pain medication for cramping in her legs, which we think was due to very low potassium counts. She felt so much better after that and her IV fluids have potassium in them so that ought to self-correct in no time. It never ceases to amaze me when I examine how humbling this experience is. To consider for a moment a simple thing such as potassium; a word I recognize and sort of know. I know that it is something in the body and something that is in bananas but I realize other than that I am absolutely clueless about what potassium actually means and does and why its important and what happens to the body if it should get low. Medicine is so amazing in this way and I was so relaxed knowing she was being so closely monitored and getting everything she needed. Again, this was so comforting.

Doc was able to go home for a few hours in the afternoon and pack himself an overnight bag and take care of some chores without having to worry about the kids. It was very nice for him. The nights in the hospital are long and rather restless so it is important that he gets some good quality down time.

Doc came back to the hospital in the late afternoon and we decided that he would spend the nights with Aria and I would once again go home with Reo and Rianna. Aria said that she wanted to go to bed and was ready to have the lights out. It was about 6 45 pm and Reo, Rianna and I packed up and headed home. When we got home, I tidied up, got myself organized for the next day, started some laundry and got the kids ready for bed. It was 8 45 when Reo and Rianna were sound asleep and I began this email. I was tired but wanted to get some thoughts down before heading to bed.

As I was going upstairs to hit the hay this startling thought hit me. I was looking in Aria’s room at her empty bed feeling a little sad. It was a strange sort of lonely feeling like something is definitely missing and not quite right but at the same time perfectly fine. I took a deep breath and sat on the edge of my bed to pause with my thoughts a moment when it hit me. I was filled with this incredible sense of relief! For the first time in weeks, I was not the caregiver and worrier. That job had been relinquished to the medical staff at the hospital. It was an enormous weight off my shoulders. I didn’t go to bed worrying “Will she wake up in the middle of the night vomiting or with diarrhea? Will she wake up first thing and need to throw-up followed by a desire to eat something? Will she have a good day tomorrow? Will she have a temperature? Will she have a good appetite? Will she be able to walk or will I have to carry her everywhere?” These thoughts have been constant companions for weeks and weeks and weeks and I my level of exhaustion was something I have never known before. I actually smiled and felt so grateful that going to the hospital became something positive where just hours before it was something scary and dreadful.

It made me think of a conversation I had with Doc as we were driving to the hospital. I told him that I actually felt pretty relaxed about the whole thing. He was so happy to hear it. It was a relief to him to know that I could trust the process and know that the outcome would be more than likely a positive one. It was obvious that I had enough information to subdue my fear, which, I believe, is fueled by lack of information or worse, misinformation. I told him that before Aria got sick, my perspective of the hospital was that is was a place that represented only 2 things; a place where you went and had a baby or a place where you went if you were really, really ill. I’m talking scary sick not just your run-of-the-mill stuff but the kind of sick where you require a great deal of intimidating monitoring, tubes, life support, and medication of all matter of degree. It was all very black and white in my mind. The hospital was a place for really nice positive things or really awful things and very little in between.

In truth, why would I think anything else? I have almost no hospital experience so how could I know that my black and white idea represented only the extremes but the reality, like everything else in life, is what happens in between those extremes. It is so easy to think that life can be categorized as being right or wrong, good or bad, black or white, positive or negative but time and time again I discover that this is such a narrow and clumsy perspective. Life is rarely that clear and well defined. I find that when I get stuck in the illusion of that thinking, I become more and more frustrated and judgmental, failing to appreciate and embrace how things really are. In terms of the hospital, I understand that, at least with Aria and her care, this is a place where she receives high quality care, sometimes more intensive than other times, but the point is always to get her back out into the world for a little while longer. It is, as I’ve said, extremely reassuring to be here.

Sunday morning rolled around and Doc called around 6 30 am, which put me into a momentary tailspin of concern. He never calls that early, which made me think that something must be wrong. In a slight panic, I hesitantly answered the phone, “Hi honey, is everything ok?” Doc replied, “Oh yeah, everything is great. Someone wants to tell you something.” Aria got on the phone and told me, “Hi mama! I’m hungry for a wood (vanilla) yogurt please!” I was so thrilled to hear her so chipper and happy and hungry. I told her that I would go to the grocery store straight away and bring her some yogurts. She was so happy and said, “Ok mama! I love you!” Oh, such music to my ears. Doc and I briefly discussed how we were going to handle the day. I had a smile on my face.

The day before, I had the brilliant idea of calling our neighbor Tata to see if her daughter, Amy was available to babysit on Sunday. The thought of having Rianna in the hospital all day long felt like torture to both Doc and I. It was also going to be torture for her too. It is such a restrictive environment for this very curious active person. We decided that we would head to the hospital for some time, watch a movie and play for the morning and then Doc and the kids would head home for the rest of the day. Doc could putter around and get some rest while Reo and Rianna could play with Tata and Amy. I would stay in the hospital and play with Aria. It was perfect and the day truly went off without a hitch, which was such a blessing.

Our friend Kai came to visit Aria first thing in the morning and brought some wonderful lotions and lip-glosses. Aria adores him and it absolutely brightened her day to see him! Doc took the kids home around 10 30 am and played with them for a while until Amy came over around an hour later. She took the kids into town and then to their house to play on a trampoline and eat treats and so forth. They had a ball. Reo told me that he was able to use his new big boy booster seat that we purchased specifically for Tata to use. He was thrilled! They came home early afternoon and Reo joined Doc in watching some sports on the television, while Rianna stayed outside playing with Amy in the playground. I stayed in the hospital room with Aria and watched more cartoons than I ever remember watching in my entire life. It was so amazing. I had never actually seen the show Sponge Bob Square Pants until yesterday and I can honestly tell you that I don’t have any idea what it is all about. I watched feeling perplexed and confused, which was a most amusing state. I sat beside Aria for hours watching cartoons and doing some hand sewing that I haven’t been able to tackle for weeks. It was absolutely glorious and rejuvenating. I never in a million years would have imagined that a hospital stay would be the place for me to recharge my batteries but it has been. I haven’t felt this relaxed in weeks. We had a wonderful day.

Doc and the kids got back to the hospital room around 6pm with some yummy Chinese food. We had a lovely feast and then hit the road shortly thereafter. I was tired by the time I got the kids ready for bed, and stories read. I finished some laundry and sat down to write but nothing came. I literally sat there staring at the computer screen with still fingers. My mind was both completely blank and silent. I decided to go to bed and read my book for a short time. When I finally turned out the light on this day it was 8 30pm! I slept pretty well and woke up refreshed and ready to greet the day.

One of the things I forgot to mention that is rather important was that when Doc called first thing in the morning, he wanted to warn me that Aria would be receiving her first platelet transfusion. I tried not to be bummed about it, but I was. The intellectual part of me was trying to convince the emotional part of me that this is just part of it. It is commonplace to need a platelet transfusion and it happens all the time and will likely happen more than once throughout her treatment. Still, it was yet another reminder of the severity of her illness and how I cannot escape that fact. I was so glad that Doc warned me because I would have probably been really upset coming into her room unaware. Again, information is key and I am learning to assert myself respectfully and gently enough to get exactly what I need so I’m not afraid.

I can’t tell you what I imagined a platelet transfusion would be like but I can tell you that I didn’t imagine it to look like a flattened IV bag that was slightly smaller than a large zip-loc bag filled with this light caramel colored thick gooey stuff. That was it. There were no additional lines, no extra equipment no real hoopla. It was just this extra bag hanging from her IV pole. I’ll add that Aria needed platelets because her count dropped from 19,000 on Saturday to 9,000 on Sunday. Aria’s temperature continued to fluctuate throughout the day but she remained in good spirits. I was encouraged that our stay may be winding down. Her ANC was still 0, which generally reflects that she wasn’t yet producing any white blood cells.

On Monday, Doc called early again and let me know that the night was fair. Aria still had a temperature and she vomited in the middle of the night, which was strange and a little concerning. We were still waiting to learn about her blood cultures and her ANC was still 0. She wasn’t really improving but she also wasn’t getting significantly worse. We were in this weird sort of holding pattern, which meant, to my mind anyway, that we weren’t going anywhere any time soon. This was hard, because I had convinced myself earlier with wishful thinking that we’d be going home soon. Again, this is a peculiar bit of psychology that I find I’m wrestling with and I don’t quite have my head around it. I know she is in a safe place. I know she is getting excellent medical care. I know we are doing exactly what we need to be doing but gee whiz, I sure do want this resolved quickly and head home! I suppose, like most people it is that quick fix mentality creeping in and monkeying with mind and my perspective on reality.

I drove Reo to school and then went on to the hospital with Rianna. It was wonderful to see Aria in really good spirits and Doc mentioned that her fever came down and was holding steady at around 99. This was great news! I had this thought that we had this outside chance of maybe going home. I doubted it but I hoped nonetheless. Denial is such a funny thing. I’m trying to seek some sense of balance between hoping for something but at the same time trying to maintain a realistic perspective that is flexible and accepting. I haven’t sorted it out yet and may never be able to but I’m trying nonetheless.

Doc took Rianna to pick up Reo a little later in the morning and Aria and I watched movies and hung out. Doc was with the kids at home for a few hours and then they came back to the hospital room. I can honestly say that I don’t remember what Aria and I did in the time they were gone. I don’t think the television was off though, which is so weird. This place is so generically comfortable that it reminds me of being in a hotel but I know I’m clearly not in a vacation destination. This is part of what feels so odd to me.

When Reo and Rianna were here we played and watched movies. Around 4pm Aria’s temperature was taken and it had jumped to 102! I was completely dismayed because I knew it meant that not only were we not going home any time this day but also more than likely we wouldn’t be going home on Tuesday or Wednesday! “Just how long are we going to have to be here?” was something that looped itself in my mind. I just couldn’t seem to let go and accept to being here for as long as necessary. This dragging on and on was becoming a real nuisance. The other thing that happened that was a real bummer was that we were put into isolation. Anyone coming into the room has to wear gowns and gloves. This is not for Aria’s sake but for the protection of other kids who are on the ward or in the playrooms who may also be immuno-suppressed and therefore easy targets for whatever bug Aria has. This also means that Reo and Rianna can no longer play in the playroom so we are stuck in the hospital room. Forgive me if it sounds melodramatic, but it really was disheartening to see them put that sign on our door. I know for everyone who works here it is second nature, but for me, it was another first. I’ve been inundated with firsts for weeks and I’m growing weary of it.

Dr. Trobaugh came to visit us later in the day and filled us in on all the details. Aria’s blood cultures were negative so far, which is good, but her temperature is hanging around so we have to stay put. Furthermore, she suspects Arai has a GI bug, which is why she is having the fever. It requires a special antibiotic that Dr. Trobaugh warned tastes just terrible. We asked if Aria could have it in pill form, hoping that it wouldn’t taste as bad. Dr. Trobaugh said it was no problem but that it still tasted gross but not like the ‘rotten eggs taste’ of the liquid medicine. Rotten eggs? Oh My God, poor Aria!

Obviously, Dr. Trobaugh couldn’t tell me when we would be able to go home but she understands so completely the need to have some kind of idea. I asked her if it was likely we’d have to stay through the weekend to which she responded that she hoped it wouldn’t take that long. UGH! It is a possibility but you never know! We talked more about what happened last week in terms of Aria’s increase in vomiting and her counts plummeting. She said that Aria is metabolizing her chemo med 6M-P really slowly, so clearly giving her a 100% dose is too much for her body to deal with. She knows this because her physical symptoms are so severe and her counts were lower than what they want to target. She said that under the right dosing, the 6M-P is supposed to be a constant low dose chemo that Aria really ought not to notice much. Even at ½ dosing, Aria’s counts were too low, so she became so immuno-suppressed that the normal bacteria flowing through her body became a source of infection; hence the fever.

What we’re going to do now is get rid of this infection with the nasty antibiotic, which will get rid of the fevers too. Now that she’s off the chemo and fighting the infection, her counts (ANC) ought to gradually come back up. Once they reach a certain target (I think 750 and greater) she’ll start back on her chemo on a much lower dosage and see how that affects her target ANC. My understanding of this dosing game is this; at 100% dosing, Aria’s ANC dropped to 540, which let’s Dr. Trobaugh know that the dose is more than enough to keep leukemia cells from forming but it is also wreaking havoc on Aria’s body. So, she cut the dosing in half, but the cumulative effects were already in place so her ANC tanked to 0 on Saturday (or even sooner, we don’t know). She suspects that 50% dosing is still going to be too much so she ordered some special tests to determine the rate at which Aria metabolizes this drug. Amazing! It may be that we tweak the dosing enough that she’ll receive a 20% dose and her ANC target will be somewhere around 750. We’ll see. That’s what we’re doing right now, trying to test what kind of dosing yields what kind of target and for how long. I’m learning that, in the process, her counts will be good and steady and then she may get some kind of infection or her counts will drop and she’ll get a fever and be hospitalized. We’ll repeat the process once again. This is what we have to look forward to, but I was reassured that during the 2 year maintenance phase we ought to see her feeling so much better with less hospitalizations. That was a relief because if this interim maintenance phase of treatment reflects what the 2 years were going to be like, I honestly don’t know how I would survive!

Dr. Trobaugh was completely optimistic and told me more than once that what Aria is experiencing is just what happens with treatment. The way she talked about it was like how someone would describe getting dressed in the morning as if it was the most common routine thing in the world. I felt the tension in my neck easing as if her words were tiny fingers massaging away my stress. She is just terrific.

Reo, Rianna and I went home early because Reo was insistent. He had ‘hit the wall’. He was constantly interrupting our conversation with Dr. Trobaugh and bless him, he had to wait and wait and wait. We left around 6pm. Reo played outside whacking golf balls into the pasture for about 45 minutes while I unpacked from the day, made some dinner for the kids and drank a glass of wine. We had some supper and the kids took a bath. Doc called while the kids were bathing to tell me that Aria’s port access was failing and that they couldn’t draw blood. In the afternoon they had added some medicine to dissolve any clots that may have built up blocking the blood flow. Even after doing that twice, they still couldn’t draw blood, which they needed for cultures. He mentioned that a chest x-ray had been performed to determine if the port was still in the right place or if by an outside chance things had shifted and she might have to be re-accessed or worse, need a new port, which would mean surgery. This was a huge snag and I tried not to take it all in. It was too much. I had every intention of sitting down to write but I was just too tired. It was a weird kind of tired too that I was trying to sort. Certainly there wasn’t anything physically challenging I had done for days and days. In fact, just the contrary was true. My fatigue was more the kind that one has as a result of boredom and waiting and worry. It was after 8pm by the time the kids were in bed and stories were read. Reo stayed with me and I decided to do some simple chores and I finally went to bed with my book around 9 30 pm but not before I talked to Doc who told me that the x-ray showed that everything with the port was just fine. What a huge relief! They were going to try again with the dissolving meds and see what happened. Interestingly, I went to bed with a heavier sense. The relief of being ‘care-giver/worrier person’ ended and was replaced with ‘worrier-about-being-separated person.’ Suddenly things didn’t feel as comforting knowing our stay would be prolonged. My mind was uneasy but I didn’t let any clear thoughts formulate. Needless to say, I didn’t sleep well and when the dogs began their morning serenade at 4 30am, I got up with them.

I talked to Doc first thing this morning Tuesday April 29, 2008 before taking Reo to school. He mentioned that they had a restless night. Aria was still running a temperature and her port was still giving some problems. It was looking like she was going to have her port re-accessed, which may not seem like a big deal to you and me, but to a 4 year old, it is a poke and they’re no fun no matter how you try to spin it. This is also a situation where in isolation it isn’t a big deal, but it really is one more thing for this child to endure. Doc sounded tired, really tired.

I dropped Reo off and arrived at the hospital around 9 am. Aria’s ANC jumped to 22 but her hematocrit dropped to 18.4 which is below the 20 cut-off, which means a blood transfusion. Aria’s first. I was dismayed and needed reassurance once again that this is standard procedure and perfectly normal. I began questioning myself, “Why are you so disappointed? Is it a performance thing?” It was there, the disappointment and sadness and I had a hard time shaking it. Our lovely nurse, Michelle told me more than once that Aria has been the talk of the ward for never having had to receive platelets or blood. She was truly amazed! As perverted as it is, it made me happy to hear that. It was around mid morning and time to pick up Reo. Aria’s port had not yet been re-accessed and Doc wanted to stay for that process. I left with Rianna and as I approached Reo’s school about 20 minutes later, Doc called to tell me that everything went well and they were able to find the position that enabled the blood to flow. Aria was lying on her left side with her back arched slightly and this, we’ve learned, is the ticket for collecting blood. Dr. Trobaugh was in the room assisting and Doc was able to have a nice conversation with her.

When we got back to the hospital room we had some lunch and played while Doc went to his office for a little more than an hour to get caught up on some work and as I learned later, to clear his schedule so he could have the week off. I think from his conversation with Dr. Trobaugh, he knew we’d be staying most of the week. Aria still has a temperature. She’s not eating really well although is able to eat some. She is tired today and has been napping a lot more than usual. She is also pale but she still remains chipper and funny and sweet and silly!

Doc told me that he had a chance encounter with Dr. Trobaugh on his way back from his office. He told me that they discussed giving Aria a blood transfusion. Dr. Trobaugh was more than willing to hold off as long as Aria was doing well, which she thought she was. Even though her hematocrit was so low, her overall disposition was still quite good. I was elated! We’ll know in the morning if her hematocrit has increased or if it’s going the other way and if it is, then she’ll have a transfusion.

Reo had his first T-ball game tonight, which we were absolutely determined to attend in one way or another. Tata and Amy to the rescue again! Doc took Reo and Rianna home this afternoon to get sorted. Amy was going to stay with Rianna while Doc took Reo to his game. I called about an hour into the game and Doc said he was positively speechless. It was adorable! Hopefully everything is going well with Amy and Rianna.

Aria has been very low key. She had to take her nasty antibiotic again. This afternoon she did great but this evening was another matter. She chewed it up and then promptly threw it back up and out! Poor thing. Now we are trying to find something that sounds good for her to eat so we can hide the pill in whatever she chooses. The problem is that nothing sounds particularly good and the one kind of pudding she likes, they don’t have here! We’ll see. She did mention earlier that she wanted me to stay with her tonight, which is an absolute first! I’m thrilled. I’m still nursing with Rianna, who is used to having some snuggle time with me first thing in the morning, which may be a conflict. We’re giving it some thought.

It is now Wednesday night April 30, 2008 (7 40 pm). I am with Aria and we are having our first sleepover. Doc and I decided that it would be better for me to sleep at home last night with the kids and give Reo more time to get used to the idea of Mama being away from home. I knew Rianna would have no problems. She is the most flexible kid I know!

Last night when I got home, Amy told me that she and Rianna had a ball. She had a nice super, took a bath, played and promptly went to bed without much of a fuss at all. I was so happy to hear it. It is such a relief to know that Rianna is secure enough that she can be away from Mama for a while. This made the decision for me to stay tonight that much easier. Last night, Reo and I played for a short time and went straight to bed. It was after 9 00 when I finished reading stories. I read my book briefly and remember turning out the light at 9 40.

The dogs once again began their ‘gotta pee! gotta pee! gotta pee! song” around 4 30am and I got up with them. I was able to take a shower without the kids in the bathroom with me, which is such a rare thing. It was lovely. It was quiet and I was reflective.

I took Reo to school and watched him walk into the building by himself, which he’s been doing for a long time now. For whatever reason, he looked small to me today. He looked so young and so innocent. It made me a little weepy watching him be such a big boy. I felt incredibly proud of him. Rianna and I headed to the hospital shortly thereafter. Aria was mellow, really mellow. Her temperature had peaked in the middle of the night to 103.4, which reminded me that I had a dream that Doc had called me in the morning to tell me that her temperature had reached 110! What a nightmare. I can’t help but wonder if my dream coincided with her 103 fever. Stranger things have happened. They decided to give her another IV antibiotic to help with the infection. Her overall ANC is up to 44 and her hematocrit is back up to 20.4, which means we avoided the transfusion hurdle and all those risks one more time. Super!

We met with a nutritionist this morning to help with her caloric intake since she isn’t eating well. We’re trying to figure out how to maximize as many calories as possible. I was encouraged that the nutritionist was pleased to hear the variety of food that Aria is willing to eat even though she doesn’t eat much of it. We told her that Aria loves fruit, which is something that she can’t eat right now because the natural bacteria that live on fresh fruit can be a real problem to her body being as immuno-suppressed as it is. We’re not doing anything different other than stopping the delivery of food trays and getting a pass so we can go to the cafeteria and get all the things she likes to eat in smaller portions. We’ll try that tomorrow and see what happens.

Aria had a normal temperature today during her morning vitals. I was happy but reserved. I think I have finally reached the place where I’ve stopped wondering and almost searching for when we can go home. I’m reaching a place of acceptance where we go home when we go home. It is a much more practical place in which to function but it has taken me 5 full days to get here. Aria napped a great deal more today but she also ate more and drank more too. She is not moving around on her own at all, which is sad. We’re trying to encourage it, but she has no interest whatsoever. Her muscles are beginning to atrophy so her legs are very thin.

Doc left later in the morning to pick up Reo and they came right back to the hospital. Reo and Rianna were rather fidgety so we decided that they needed to go home and play. Doc decided to take them and spend the afternoon at home. Later on they are going to come back and we’re going to have a pizza party. I’m looking forward to that.

Aria slept quite bit this afternoon and I had a wonderful opportunity to write some letters, which is something I haven’t been able to do for some time. It was lovely. Dr. Judy came by and let me know that everything continues to progress in a positive direction despite the persistence of the fevers. Again, it is all very normal.

Doc and the kids arrived this afternoon with delicious pizza and soda. We had a lovely party. We have a wonderful view from our hospital room and we were able to watch some incredible weather roll in. We saw snow, rain, hail and sunshine all in a matter of an hour. They left around 6pm and it is worth noting that this is the first time that I have ever slept away from Rianna, who is 16 ½ months old. Doc seemed a little nervous about having to deal with her first thing in the morning but I have every confidence that everything will go along nicely. I am so happy, really beyond thrilled that he is home sleeping in our bed. He needs some quality rest and I hope that he gets it. I have every reason to believe that we’ll have a good night here. Aria is in great spirits. As of 8 30ish she doesn’t have a fever thanks to some Tylenol she was given a little while ago. She had some more pizza to eat and was able to thoroughly enjoy watching the Lion King movie. I’ve lost count how many times we’ve watched it today! Our night nurse, Virginia, told me that medications will be at 9pm, 11pm, 12am, and 6am with labs drawn at 4am. This should be busy but manageable.

I’d like to take this moment to write a little about a few encounters I’ve had in the last 2 days that have been truly extraordinary. Yesterday, a woman named Sherry came by to visit and we had a wonderful talk about how I’m processing this whole experience. I don’t know what her title is exactly but suffice it to say, she is someone who has been through a similar experience (I’m guessing having a child with cancer) and is now someone other families feel they can relate to. She represents the person who has already walked the mile in these cancer shoes. I don’t see her that way at all. I see her as an insightful, positive, knowing woman who is gentle in everything she says and does. She is extremely validating and supportive. I enjoy talking with her immensely. I suppose there is some level of comfort is expressing myself and hearing her say, “Oh, I know exactly what you mean!” and she does, but that again really isn’t what I seek. I was able to tell her about something I’ve been thinking about a great deal and that is the process of “surrender.” I’m learning about this and in some ways I feel like it is being forced upon me and I’ve been resistant, which isn’t working. I realize that I’m holding onto to something. What that is exactly, remains elusive. I simply know there is some intangible that I have not yet been willing to release. It seems to be a layer of myself that is stubborn and difficult to peel away for further inspection. I witnessed while I was here something profoundly beautiful and probably the purist form of surrender I have ever seen. It is this that has forced me to look deeply at myself.

I was walking down the hall and looking in the windows of the other patient rooms. This is a mindless and almost automatic thing for me to do and I realize it probably isn’t very respectful, but I do it nonetheless. I can’t seem to help myself. If the windows are not occluded and the curtains are not drawn and there are people inside, I’m going to look! I don’t actually stop and stare, but I definitely take a worthy notice. I was walking by the Montana family’s room. I have since met them all and learned their names, but I haven’t received permission from them to write about them so I feel inclined to protect their identity. In any case, their daughter, who has ALL, has been in the hospital for a week with hives and fevers. She was sitting on the edge of the bed with her feet in a small pink plastic hospital basin. Her mother was sitting in a chair in front of her with her back to me and she was gently washing her daughter’s feet. In that moment, it seemed to me, that she had completely surrendered to the process of full and undivided care for her daughter. I was moved to tears and deeply grateful for this powerful expression of unconditional love, presence and commitment. I’ve been thinking about it ever since. I’ve been considering all the things I’m hanging on to that may be inhibiting me from completely surrendering to this journey. I’m thinking about all the things I don’t yet understand about what’s happening and how I can gain more trust. I’m thinking about how I can let go and freefall knowing that being caught isn’t the purpose right now. Rather my purpose is to fall, to trust that in the process of falling I won’t be injured and in the end, I’ll have enough strength that I won’t need to be caught. Instead, I’ll land on my own 2 feet.

I shared this story with Sherry who, to my surprise, became very teary. She apologized worrying that she wasn’t being professional and I told her that in this moment, she had never felt more real to me. So much of this experience is monumentally challenging, but there are these moments that are so incredible they make the journey not only interesting and beautiful but a real privilege to witness. It is because of this journey that I have all of these new colors added to the portrait of my life that I wouldn’t otherwise have. Sometimes they are dark and gritty but other times they are exquisite and rare. It is in these moments that I experience true awe and I sense the steadfast presence of Spirit.

Sherry is a beautiful person and I am grateful beyond words to be getting to know her. She is someone I will always know and that is saying something.

The other thing that happened on Tuesday that was so lovely words almost can’t describe it was when Krista brought over a tea party for me! Krista is a ‘child life specialist’ who we have known since Aria’s initial diagnosis. Krista was responsible for showing the kids puppets, which they love and she is also the person who is always available for Aria when she gets her port accessed in the outpatient clinic. Krista brings a guitar and sings while Aria strums the strings. For whatever magical reason, this action always makes her blood flow much better. Krista is very fun. When she showed up she brought with her 2 styrofoam cups filled with hot water and a zip-loc bag of different kinds of tea bags. It was such a wonderful surprise! We had tea together and had a lovely chat. She did the same thing yesterday (Wednesday) and it gave me such a nice sense of normal, which is something I’m trying to maintain and redefine simultaneously. I really had a wonderful day and I was so much more relaxed not having to entertain the nagging voice asking, “When do we get to go home?”

It is now Thursday morning 8am, May 1, 2008. Happy May Day and Happy Birthday Goddess Jeannie! It is a gorgeous morning here although Doc told me that it was 28 degrees at the farm. Will winter never yield to spring? Aria and I had a wonderful sleepover party last night. The child stayed awake until well after 9pm! I didn’t actually fall asleep until after midnight and I was able to sleep deeply for a good few hours and woke up this morning around 4 am feeling quite refreshed. Aria stayed fever-free the entire night and this morning she was also fever free. This is so wonderful! Her hematocrit dropped below 20 (19.4) so we are faced with deciding to go ahead with a blood transfusion or not. We’ll discuss it with Dr. Trobaugh when she arrives later today. Her platelets are holding steady at 90,000 and her white blood cell count bumped up to 1.3, which is still incredibly low but increasing daily. I don’t know what her overall ANC is yet because one lab number is pending. My hunch is that it is still well below the 250 mark but hopefully it is more than it was yesterday (44). I already know that we’ll be here another night. It will be good to see Dr. Trobaugh and get an idea of what she’s thinking.

I called Doc this morning around 6 45am and Rianna was still sleeping. He said they had a wonderful night too. So far everything was terrific and I was so pleased. He called me a little while later to warn me that the house stinks of poopie diaper not because he failed to take out the garbage but because Rianna had the mother of all blowout poopie diapers. Doc said he was trying to strip her down as poop was falling out the legs of her jammies and plopping on the floor. He basically had to resort to putting her into the bathtub fully clothed with the water on full blast. The whole thing thrilled her as you can well imagine! I haven’t laughed this much in I don’t know how long. He ended our conversation saying, “I’m going to take everything out of the tub and I’m going to incinerate it!” For whatever reason, the word ‘incinerate’ just put me into a fit of giggles. It is my favorite word for the day! This has been our morning so far and I’m pleased to say that it feels light and sunny.

Dr. Trobaugh came by this morning with news that Aria’s ANC is 351! We were stunned. Yipppeeee yahoo! She also mentioned that if Aria remains fever free until 5pm tonight, we could go home! What a wonderful surprise. I was listening to her talk and digesting the information. She is basically leaving the decision up to us to either stay one more night of head home if everything looks good. If we decide to go home, we’ll have to watch for fevers and come back right away. I found this thought rather daunting. I didn’t want to go home only to turn around and be re-admitted. In my mind, I was thinking, “let’s stay another night just to be on the safe side.” Doc on the hand said, “Well, if everything checks out ok, I’d like to be out of here as soon as possible!” I was amazed. Dr. Trobaugh was completely supportive and we spent the day preparing to leave.

Around 4 30, Aria’s vitals were taken and she was fever-free so we were heading home. We took loads of stuff down to the car and by 5 15pm we were walking out the doors! Heaven! Aria was so excited to be going. On the way, I mentioned to Doc how I was feeling about leaving tonight, thinking I would prefer to stay another day. Regardless, I trusted his judgment completely. He said to me, “Honey, she needs to sleep in her own bed for 11 – 12 hours. It’s time to go home.” He was absolutely right.

It is Friday May 2, 2008 and Aria is beyond happy to be home. She cooed when we put her in her bed and snuggled and sniffed her blankets. It was so tender and sweet. Right now, 10 50am, she is sound asleep in the big bed. She is fever free but still having some diarrhea and some nausea and she vomited completely out of the blue last night before bed. It is so strange to try to relax and take a deep breath only to be on guard in a blink of an eye. Again, this is the surrender. This is the flexibility that is required of us right now. We cannot plan on anything and if we do we have to function knowing those plans can change in a moment’s notice. I’m learning to be at peace with that emotionally but it remains rather challenging.

I’m happy to be home. I’m surrendering to the uncertainty of things. I’m perfecting flexibility and finding some peace there. I’m opening myself to the lessons of trust. I’m listening deeply to the voice of my conscience and learning to be still and present to it. My hope is that I am filled with more grace to parent with greater gentility, respect and creativity. I also hope that I remain open to the insights presented to me so that I am fully present to what it means to be human.