Tuesday, February 2, 2010

Aria's August Clinic Appointment SUPER LONG!!

August 20, 2009
Subject: Aria’s August Clinic Appointment (this is super long!)

It was Tuesday August 11, 2009 at 8 50 am. Aria was schedule for her monthly lab check, examination with Dr. Trobaugh, and vincristine chemotherapy. This kind of clinic visit celebrates almost to the day when Aria began her Maintenance part of treatment, which was August 1, 2008. Aria has had this kind of appointment 12 times now with only 7 more to go. We are heading toward the finish line. I can almost see it!

I mentioned in an earlier email that at this stage of the game, it would be so easy if it was only about Aria. It isn't and every time we go to clinic I'm reminded of why it isn't. This particular clinic visit was exceptional in terms of the sheer number of people being seen, evaluated, treated and cared for. I'd like to detail it for you. I want you to see what I see when we go to clinic. It is rarely this busy but there are more often than not at least 3 or 4 other families in clinic any time we are there. This day, however, illustrates the magnitude of cancer's scope and it is breath-taking.

When we walked into clinic this morning, it was already a full house. The main waiting room was nearly full with only one love seat and 2 chairs left unoccupied. I didn't recognize any of the faces surrounding the periphery of the room. There were several support staff milling around, all of whom I knew. It was peculiar seeing that many professionals hanging around that early in the morning and I immediately wondered if something was amiss. Tuesdays are procedure days so it isn't uncommon for it to be a busy day but this seemed unusually so. Aria was checked in, weighed, measured and had her vitals taken as usual. Reo hooked up with the Play Station video system they have and was entertained from then on out. Rianna made herself comfortable in the playroom where there were several other families hanging around about half of whom I knew or had at least seen once or twice.

There was an energy about the clinic that was new. I couldn't put my finger on it. Whatever it was, it was intense. It's always intense but this was different.

Aria wanted to hang out in the main waiting area where Reo was and so I joined them while Doc and I took turns watching Rianna, who has finally matured past the stage of running helter-skelter up and down the halls. I sat down and noticed that a child life specialist was making a bee-line toward me. I immediately stood up for some reason. I suppose I was preparing myself for God only knows what. She smiled at me gently and told me to sit down but that she wanted to talk to me. She went on to tell me that there is a family in our little community who they think I ought to contact. The little girl is 4 years old and a lover of all things pony, unicorn and glitter. While she was an inpatient, many of the nurses and child life specialists commented how alike she and Aria are. She is being cared for by her grand-parents who are feeling quite isolated especially as it relates to their grand-daughter interacting with other kids. She had a horrible bone tumor for which she received chemotherapy and radiation. They were not able to spare her leg in the long run and so she had it amputated earlier this Spring. She calls her stump "pony leg". It's all so mind-blowing that I don't even how to comment about that. In any case, they want us to connect. I was given their contact information but have since found myself rolling that paper in between my fingers unable to pick up the phone. It will be a big call for me to make and will require strength I know I have but am not quite ready to muster yet. I sense this is my path even after we are done, but I wouldn't be honest if I didn't admit that I'm scared. I've never seen a little kid without a leg before and certainly the tie-in to cancer adds a whole layer on top of the amputation in general. Osteo-sarcoma is a bad cancer so there's a lot anxiety around that on top of the grief related to loss and what they have yet to undergo. There are many positives to this story and this family and so far things look good but the future holds a vast array of unknowns and this is always difficult.

As we were finishing our conversation, a young girl roughly 14 or 15 sat down in a chair beside us. Her mother, maybe grandmother sat on a bench next to her. The child life specialist turned her attention to this family and I turned my attention to a huge box of blueberries I had brought with me to share. Aria and Rianna were thrilled and began diving in. I couldn't help but overhear the conversation that was happening right next to me. The young girl had finished months and months of grueling treatment, for what I don't know. She started having leg pain and was evaluated but nothing showed up on any films. She said, "I was able to have some fun this summer, but then my leg really hurt where it all started before. I had a hard time walking so here I am again." She looked scared. She looked like she was still in the throws of steroid treatment, although I don't think she was. Her hair had been growing back and she had a sparkle in her eye. Her grandmother-mother was sitting beside her playing with a straw in a large cup of soda. She was fidgeting in her seat, not able to get comfortable. They were here once again facing unknowns. I've said this before, not knowing is infinitely worse than knowing. It was then that I noticed I had been popping blueberries into my mouth one after the other and chewing on them like a squirrel nervously nibbling an acorn in the surroundings of a city park. I don't think I was breathing. I looked over at Doc who was staring into space leaning forward with his elbows on his knees and his hands on his cheeks holding his head. He was far, far away. I asked, "Hey Doc. You ok? What's on your mind?" He blinked and looked at me sitting back. He let out a deep breath and ran his fingers through his hair. He sighed and said, "Oh honey, I'm ok. I'm just thinking about...this place...Clinic...Aria." His sigh was the sound of utter exhaustion and as he rubbed his eyes and blinked several times, he looked at me, held my hand and there we sat.

I looked across the room and there staring at me was another young girl about 15 or 16 I'd say. Our eyes met and lingered. She didn't avert her gaze nor did I. We sat there looking at each other for what felt like a long time. Her eyes were dark brown. She wore a little make-up and clothes purchased from one of several trendy fashion outlets that cater to teenagers. Her hair was long and silky and I wondered how much time she spends fixing it. I wondered if she was new here and was thinking about what it was going to be like to lose it for a while. She looked new. Her mother looked new. They had 'the look' and I know that look well. It was then that I realized she wasn't smiling, neither was her mother or who I presumed to be her mother nor another girl that was with them, about her age. A friend? A sister? I didn't know. Rianna bounced up and ran out of the main waiting area down the hall into the other playroom and I followed her passing this young girl as I went. She looked at me the entire time. It was if she couldn't take her eyes off of me. Suddenly I was totally self-conscious, thinking, " Am I smiling too much? Am I not sober and somber looking enough?" I know it sounds crazy but I remember those early days staring at other mothers, seasoned pros, who could be in the waiting area and playroom laughing and smiling with their kids. Thoughts would emerge screaming, "What the hell are you smiling at? Your kid has cancer! What's funny here? Why are you laughing?" I remember being dumbfounded by their treachery. They were supposed to be miserable and terrified both inwardly and outwardly. Their comfort and ease was not a comfort to me. Fortunately, this did not last and I found myself early on drawn to those who could smile and celebrate the life of the moment. When I walked by her, she literally looked up to me watching me. I slowed down to look at her deliberately. I gazed into her eyes and said, "Good morning." She gave me a silent faint smile and nod. Her name was called and she jumped with the force of a cannon out of her seat and she was gone. Was she beginning the journey? Was she coming around for another go? Was she waiting to hear news about the outcome of her journey? I don't know but she's in my head.

I went into the playroom and there was a Eastern European family with an interpreter playing with toys and watching a movie. They have 7 children in all. I wrote about this family once before. The mother and I stared at each other in the procedure room a few months ago. While Aria was waking up from her procedure and God only knows what was going on with this mother's baby, I stared at her not able to take my eyes off of her. I could only see her eyes since she was gowned and masked and she matched my stare for a moment or two. The intensity of her as well as watching her surrounded by professionals caring for her baby was like nothing I had ever experienced before. It was incredible to see them all playing in the playroom. Her baby is a gorgeous meaty little guy full of smiles and raspberries for his mom and dad. They were beaming and everyone's eyes were full of sparkles and twinkles. This is one of the most beautiful families I have ever seen. They were completely pre-occupied with themselves and with their interpreter. They made little to no eye contact with anyone else and made no effort whatsoever to interact with any of the other parents in the room. Their kids also kept to themselves but they were playful and at one point they set up chairs in front of a small tv so they could watch a movie. My kids joined in and it was the cutest thing to see these kids huddled together sharing in such a common pleasure. The parents looked relieved and I was thrilled to see them and have a sense that they are out of the woods. There is hope.

There was another family in the playroom. A little boy I had never seen before and his mother, grandmother and older sister. They were guarded and unsocial. I wondered if they were new. The grandmother sat beside me but her face was uninviting and stern. She stared distantly and I wondered where her thoughts were taking her. I asked her, "How old is he, your grandson right?" She turned to me furrowing her brow, "He's 2." He came over to her offering a plate fake corn and fried eggs. She took it silently from him. I said, "that looks yummy!" He smiled at me and went back to the kitchen to finish cooking. She asked me, "Is one these yours?" I replied, "3 of them are and my daughter, Aria over there is being treated for leukemia." She nodded with little expression and said, "Yeah, he's got a hereditary blood disorder. That's why we're here." She didn't elaborate and I didn't ask. I don't know if they've been coming to clinic since his birth or if the process is new and 'just the beginning.' I just left it hanging there. She got up and sat next her daughter when that seat became available and I went back into the main waiting area to grab my bag I had left there.

I noticed a young girl maybe 10 or 12 sitting in the corner with her mother. They'd been sitting there the entire time but it was only now that I really saw them. They were in shadow. They were completely walled off, eyes down, shut off from their surroundings. It was so strange to see them and yet not be able to look at them. It was like my gaze was unable to penetrate the fortress they had erected. I bent down to grab my bag and Rianna came bounding toward me. I picked her up and sat down. We played for a moment or two and when I looked over at the corner, this young girl and her mother were gone.

Aria came wandering back into the waiting room wanting to watch cartoons that were on the television. There was a little boy, probably 8 or 9 playing in the faux boat that is the main attraction in this room. He found a life preserver and was hanging it from his neck while his mother took some pictures. He was bouncing and beaming. I know this boy. He has finished his treatment for ALL and is in the process of simple follow-up. He looked terrific. The picture of health he was and probably is. His mother was completely relaxed, somewhat reserved but full of smiles. They are thoroughly enjoying 'the other side.' I couldn't be happier for them. I was bursting with joy watching him play. There's hope. I see it in him. I see it in Aria. I know it to be true.

They got called away and as they were leaving a young Indian girl probably 15 sat down with her father beside her. She was radiant and one gigantic smile. Her father was too. "What hurdle had they just cleared?", I wondered. Her hair was just beginning to grow back, which seems to me the tell-tale sign of turning a corner. Being bald is being in the throws of illness but hair growth rings of healing and cell regeneration. I don't know what it was about this girl and her father. The only word that springs to mind is, Peace.

At this time Aria was called away to have her port accessed. We'd been waiting a long time but I can't tell you how long exactly. I've stopped looking at clocks and I don't own a watch. I haven't worn one in over 20 years. As I was watching Aria and Doc leave the waiting area with Rianna on my lap and Reo playing the video game once again, my gaze wandered to the door and through it came a young girl in a wheelchair. I have no idea how old she is but my guess is somewhere between 10 and 15. She was petite and beautiful. The left side of her face was slightly fallen due to what I don't know. I can only guess some kind of brain damage/injury as a result of her treatment, but who knows. Her hands were secured by black straps along the armrests of her wheelchair and her legs and feet looked deliberately placed. The woman pushing her wheelchair, I guessed to be her mother, made no eye contact with anyone in the waiting area. I was watching her. It is amazing to watch someone scan a room but not really look. This pair looked like seasoned pros. I wondered, "How many years have you been coming here? How many years did you look at the countless faces coming and going? When did you stop looking and why? What happened?" Everyone has a story. I wondered what theirs was. I can only conjecture but looking at them I suspect their journey has been a long one. She wheeled the young girl out of the waiting area down the hall and I never saw them again.

As I watching them go through the large automatic doors that are always open and lead to the main hall, exam rooms and playroom, my gaze found a young man. He was sitting in a chair with a set of crutches beside him. I could see just a little more than his profile. He was completely hairless and looked to be 17. Yes, that would be my guess. He's a junior or senior in high school. I could tell that he was tall and gangly, only just beginning to fill his body in when my thoughts wandered to my nephews and their friends. Those thoughts became too much and I found myself tearful taking deep breaths. I looked at him again and he was staring detached to his surrounding at some spot on the floor. He wasn't blinking. I never saw him blink. He just stared. I don't think you can notice someone like him and not wonder, "What has your journey been like? What have you had to endure for so young a person? How different you are from your peers at an age when different couldn't be a worse thing." This boy's face is in my mind's eye. He haunts me a little. He puts me in a shadow of great humility where I find myself only able to kneel in gratitude for all the blessings I have been bestowed. I sense that he is a great young man.

Aria and Doc joined us in the waiting area a few moments later. Doc was taking deep breaths and sat on the couch beside me in a bit of heap. He raked his head again and said, "Mary mentioned that there is a crisis happening so things are probably going to be delayed a little." I didn't know how to process this information. I was dumbfounded and noticed that I was nervously picking at my hangnails when to my relief Aria announced that she needed to use the potty. The bathrooms are outside of the clinic and down the hall. Leaving the clinic and hearing the doors close behind me is like stepping outside for a minute to catch my breath. The hallway is a peculiar portal bridging the world of cancer to the world of normal and it is of some comfort to wander there a moment.

When we came back into the waiting area I looked down the hall and just next door to the playroom in one of the isolation rooms I saw several nurses hustling to and fro. I saw support staff, child life specialists, and so forth mingling around that general area. It was weird and I immediately wondered if the crisis to which Mary referred was happening in that room. I was walking across the waiting room going to sit down when I saw the young man grab his crutches and stand. One of his legs was gone. In bearing witness to his fate and the suspended reality that it brought in that moment, I can't remember which leg was amputated. I paused a moment and thought, "What has life been like for this kid?" I silently bowed deeply to this young man and his family and friends.

Doc was in the playroom with Rianna. There is a large circular window in the main waiting room that peeks into the playroom, so I could see them. Aria wanted to watch cartoons so I sat down beside a woman I was thrilled to see. I haven't seen her and her son for a long time. It's been months and months. We had a wonderful conversation and I asked her to tell me her story again. I know that her son, who is 8 years old has a rare malignant tumor that has invaded the underside of his face; the extent of which I don't fully understand. They have been coming to clinic for 5 years now and have just finished their second round of chemotherapy and radiation. After his first course of treatment he was able to enjoy remission for, I think she said, 2 years. They had to come to clinic repeatedly for follow-up and countless scans to make sure that the cancer wasn't growing back. That's seems a peculiar word to use to describe cancer, "growing" but that's the image that comes to my mind and you know for quite some time now I haven't been able to look at those toy "sea monkeys" for that reason. Those weird coral growing things that emerge after dropping a colored tablet into a fish tank of water reminds me too much of cancer 'growing.' After 2 years or so she said she noticed that his eye was bulging and she 'just knew.' He finished another year or more of chemotherapy and radiation and was preparing for a grueling surgery to remove what was left of his cancer but fortunately that didn't have to happen. They can see no residual cancer. There's nothing left to remove surgically, so they were in clinic for scans and follow-up. She's cautious in her excitement and enthusiasm. She's been through this once already. Not being able to see any residual signs of cancer doesn't mean much to her anymore. That's not where she puts her hope or her faith. She is completely resigned to the fact that this is their normal. They'll come to clinic year after year after year and face whatever comes down the pike.

I sat there gripping my seat, listening to her. Finally I asked, "How do you do it? How do you live in the moment? How do you keep yourself from tumbling head over heels down that rocky road of anxiety knowing that for you guys it's all up in the air?" She leaned her head back, laughed, sighed and began, "Oh You Know! You just deal with it. You just take it as it comes because what else are you going to do? You deal with people not getting it and you go day to day." That's it in a nutshell, isn't it. She's been doing this for so long and has seen so much that she has whittled it down to fit into a nutshell. I am in complete awe of her. She has a light about her, a brilliance, a genuine joy and pleasure. She is truly able to enjoy the moment and I admire her a great deal for it. It was all I could do not to crawl into her lap a moment and try to be infused with her strength. She paused a moment and looked in front of her and said, "It's hard though. You know...people not getting it, not understanding that even though he's done with treatment there's always this "What if" hanging around. God I hate that!" She looked at me and we both burst out laughing shaking our heads. It was so weird to be sitting with someone who knows that we could easily crumble in sorrow or laugh. We both chose to laugh and it was healing solidarity at its best. I asked, "Do you really think people don't get it?" She paused thoughtfully, "Oh I don't know. I suppose some people do. I just get so tired of explaining it all the time that I find myself just saying, 'oh he's fine. He's good. Yeah, he's doing well. " I cringed. I know what motivates that. It is so much easier to spare others the details. It is less fatiguing. It is self-preservation at its best and after 5 years of singing that song with no finale in sight, who can blame her? I bow deeply in my respect for her and the others just like her coping as she does.

She said to me but also to the no one in particular, "Don't you get tired of people always asking how you do it?" I looked at her and ours eyes met. I wanted her to tell me more. She shrugged and said, "You know, we just do. It's like people trying to turn it around on me as if I'm the one going through it. In reality, he's the one in the hospital bed. He's the one losing his hair. He's the one taking all the chemo. He's the one missing school. He's the one missing out." I just listened. She's only recognizing half the story to my mind. She's the one carrying the load of such a diagnosis for her son. She's the one deflecting stares, wonder, whispers, and fear to spare her son the additional grief. She's the one sleeping on a couch or a chair in the hospital with him. She's the one comforting him during all the invasive procedures he's had to endure. She's the one missing out too. She's not the one who has to endure the direct effects of her son's cancer but she is certainly not unaffected. It is a journey we share and we do it because we have to. It is as Life dictated and we go where we are shoved. It isn't always pretty but that's how we do it. That's how you'd do it, too.

They got called away and I didn't see them again. I hope they enjoy a long, long healthy remission. Within a few minutes of their departure a dear family entered the waiting area. Their story is very hard for me because they are living what we all want to deny could happen. Relapse. Their 8 year old son was diagnosed with ALL when he was 2 or 3. He went through 3 years of treatment and enjoyed 9 months of remission until he relapsed. They were told that a bone marrow transplant would be his best alternative but they were unable to find a match in time. So they have been going through another 3 years of treatment and have only 5 months to go. What makes this part of the journey so hard to face is that the level of chemotherapy he has received already has reached the total amount of medication allowed for one's life-time. This is a common problem but fortunately people can place their hope in the fact that new drugs are being developed all the time. Still, the toxicity levels in this boy's body have unknown consequences. So, as he is enjoying remission the second time around, there are side effects that they have yet to face. The journey continues.

When I saw them, I raced to the mother and we embraced. We are two very human mothers navigating this strange and scary cancer world. I look to her as a mentor. "What brings you here today?" I asked. She proceeded to tell me that they were on their way to enjoy a week long Holiday get-away that was planned and reserved a year ago but her son had an elevated temperature this morning and his line site was "weepy" and didn't look good. She worried that maybe he was getting an infection and didn't want to be on vacation and have him suddenly get really sick. So on the morning they are ready to take off, they come to the clinic knowing full well that their trip could be cancelled and they'd be spending some time in the hospital instead. This young guy has 2 older brothers who have seen and endured more than most people care to even think about. She mentioned that 5 1/2 years ago they planned this exact same trip and had to cancel it on the eve of their departure because her son got sick out of the blue. "What are you gonna do?" She sighed shrugging her shoulders with a special kind of resignation. She then said something that was like a cool breeze coming through the door. "I'm sorry. It will be fine. Whatever happens is supposed to happen. I know this. I'm just processing it out loud." I thought, "Thank you! Thank you for being real about this!" It will be fine. It has to be but at the same time it has to be alright to be disappointed, angry and perhaps even resentful. Cancer has been the predominant feature in this family's life for a lot longer than most people and layered on top of it are all sorts of hardships and frustrations that don't get any easier to accept and cope with no matter the depth of experience. I told her that if it was possible for Aria to give her son some of her ANC counts to boost his, she would and so would I! We laughed and she smiled. I told them that I hoped everything would work out so they could enjoy their trip. At the same time, I couldn't escape the thought of what a load to bring along with you just when you thought you could leave it all behind for a little while.

I went to join Rianna and Doc in the playroom and as I walked closer to the isolation room that was just next door I had a sense of an invisible force field preventing anyone other than staff from passing near this room. I couldn't help myself from taking a look over this barrier, this mystical line that was drawn by a host of incredible professionals who were casual but deliberate, surefooted, focused, and highly protective. It felt a little like gazing upon a lion pride where united mothers were fiercely guarding and sheltering one their own with nothing more than body posture and a look in their eye. I could see that the blue was drawn shielding curious eyes from whatever crisis needed addressing. There was a nurse working quickly and with an intensity I had never seen. She normally works on the inpatient unit but was floating through the outpatient clinic this day and I'm sure her skills for coping with kids taking a step closer to the veil instead of away from it were of great comfort to everyone involved. It may be all in a day's work for these people. It is what they are trained to do, but from my vantage point I was witnessing the collective spirit of people called to save lives. What an incredibly privilege it is for me to interact with these exceptional people.

Rianna was playing with musical instruments and I sat down in a chair to watch. As I did another family came into the playroom to find a place to settle in. The mother is young and lovely. She's bright and hardened. In some ways she reminds me of a doe who appears skittish but is in fact resourceful, quick, strong and knows the terrain like no one else. I know her only peripherally despite that I've seen her a number of times. She is heavily guarded and I don't blame her. She has a baby and a daughter at least a year older than Rianna who has a cancer that seems to me beyond the imagination. She was pregnant when her daughter was diagnosed and had her baby shortly thereafter. I've never felt comfortable asking her to tell me her story. It seems complicated, layered with intensity that I don't know that I'm fully capable of understanding or processing.

What I'm about to tell you is hard to say. I can't figure out if I'm completely superficial, just plain stupid or both. You see, her daughter frightens me on a level that is unique only to this experience and it is all about how she looks. There's something about her that is oh so terribly wrong. In some ways she looks like any other kid with cancer. She has a completely rounded face due to steroid treatment I assume. Her belly is distended perched upon skinny little legs that give her overall body a completely distorted appearance. Her hair is wispy and coarse. Her eyes know too much. She has rail thin arms that match her legs. Her skin is an unusual color something like a suntan mixed with tinges of green speckled with bruises. Her personality is bottled and suppressed by what I can only imagine to be countless kinds of medication. In no way does she resemble a typical preschooler and every time I see her I gasp because her appearance is so unique and harsh and based on that alone I conclude that her disease must be phenomenal. It is almost impossible for me to look at her and then her mother and not feel this incredible sense of, dare I say, pity? I don't know if that's what it is per se, but God, I feel this weight whenever I see them. Their journey seems to me a nightmare where every step is an enormous push through waist deep mud threatening to slow the progress or swallow it altogether. They represent to me the extreme of how horrible and brutal this disease can be and become.

This mother is nothing but a marvel. She is, in the truest sense of the word, an inspiration. I want to know her so badly. I would love to share with you her story. I sense we could all benefit from an infusion of her; her strength, her commitment, her nurturing, her tenacity, her devotion, and her infinite wealth of love. I loathe that part of me that groans with fear when I look at this sweet and innocent little girl. I want to beat that part of me senseless. I really do. I have no use for that aspect of myself other than to recognize that I still possess a great deal of fear. I am working tirelessly to banish that and it helps to write about it but it also requires a spiritual and intellectual commitment too. As I sat there watching them, I wanted to scold myself. I wanted to be cross and judgmental of who I am but that's no motivator. Instead, I told myself to be gentle. I told myself to sit up properly and take a deep breath. I told myself to look, to really look and see. So I did.

What I saw wasn't an angel. This isn't a Hallmark movie, this is an oncology clinic! I saw a little girl, cooking in the kitchen, playing beside other children, skipping on occasion and feeling pretty darn good. Her knowing eyes have the beginnings of a twinkle and her step has a hint of a bounce. Her mother held her and kissed her all over, cuddling and nuzzling her, loving every fiber of this perfect little person. She must field all kinds of horrifically and painfully moronic questions in addition to deflecting chronic stares that are riddled with curiosity and fright. How she does it is a complete mystery but watching her with her daughter and her son made me realize that when she's with them, she is home. It is exactly the same for all of us blessed to have children in our lives. When we hug them, love them, watch them and enjoy them, we step a little closer to our true selves. This is the gift they bring unconditionally and in abundance no matter the circumstance. This little girl is every day fighting for her life and the hell that has been paved along the way is unjust but I sense that she is a bridge connecting what we think we know and want to know with what we can not know. She narrows the gap between what is superficial and Divine. I am less fearful now and I am deeply humbled to be present and one among many along the sidelines of this beautiful spirit's odyssey.

We were finally called to be seen by Dr. Trobaugh. I know, it's exhausting! On our way to the examination room, we briskly passed the isolation room where 'the crisis' had been happened. The force field was down and I sensed that something had changed. Things were moving in a different direction. I can't really describe how it is that I can be walking at what I think is a normal pace but feel like life is happening in slow motion all around me. For instance, we had to walk in front of the door to this isolation room and naturally I looked in. It takes about 2 steps in all to walk from one side of the door to the other. To cross this view is an instantaneous experience and yet it didn't feel that way at all. As I looked in, I felt as if I had stopped in my tracks even though I know I didn't. There on a gurney lay a young person, who I think was a little boy but I couldn't be sure. His eyes were closed and I could only see his head, which was bald and a bit of his neck. He looked incredibly still. He was gray and for moment I thought he was dead. I quickly reassured myself that if he had died, they would have covered him. So I was relieved to think that he was still among us.

The exam with Dr. Trobaugh was casual and light. She is so pleased with Aria. Her ANC was slightly elevated just above 2100 but she thought this was due entirely to the fact that we stopped her chemo for a few days following her ER adventures. Dr. Trobaugh predicts that it will level out in a matter of a few weeks. We are to continue our 2 week follow-up schedule. We asked about flu season and swine flu specifically. Dr. Trobaugh took a deep breath. She didn't want to appear alarmed because there isn't much we can do at this point. Hyper-vigilance is all we can consider but I won't kid you. It is a frightening thought with school beginning just 2 weeks from now. For now, Aria is awesome! We are so lucky! We are so blessed.

As we were heading back toward the playroom to wait for Aria's chemotherapy, I noticed that the little boy on the gurney in the isolation room was gone. Where they took him, I have no idea. What happened exactly is really none of my business but there it is, swirling around, hanging out in my consciousness forcing me to be aware of my surroundings in this world of cancer. A part of me leaps for joy about Aria. I sense that I'm doing cartwheels inside but I don't let any of that show. How could I?

I went to the snack basket that's in a little area in the hallway where there's hot water for tea and coffee, a small refrigerator with juice and milk and a variety of mostly non-nutritional snack foods. I'm not hungry. I go there because it's there and it's something to do. Standing around the coffee maker is the mother of the little boy with relapsed ALL and they are still waiting for lab results to determine if their much anticipated vacation is go. She is standing with another mother I've seen a few times. I can't remember her name so I ask her to tell me again. She looks tired and sad. I wonder about her. "Forgive me if you've told me already but would you please tell me about your daughter again?" I ask. She tells me that her daughter was diagnosed with ALL when she was three and was in remission for I think she said, 10 years, and has relapsed. This is such a blow that I don't know what to do. I feel a little faint and immediately my body goes into overdrive fortifying itself. Her story is wretched and suddenly I hate cancer with every single bit of my mind, body, and spirit. I listen to her tell me what happened and I am acutely aware that I am seething. I feel like my teeth are gnashing and grinding. I'm so pissed off that her daughter's cancer came back after all those years that I hardly know how to contain myself.

I don't remember how we got onto the topic but we started talking about school. The mother of the 8 year old boy tells me that he's never been to school. He's always been too ill. That, and he has learning problems, short-term memory issues among other things. I suddenly feel like a piece of shit for ever having felt sorry for myself and Aria believing that her school experience has been so compromised. She's been able to go school a lot in comparison to many of these kids. Compared to her peers, it has been limited exposure but relative to the world of cancer, Aria's experience has been exceptional. I feel bad that I've been so clueless all this time. I know I shouldn't, but I do. I don't have the energy to transcend that right now but I will. For now, I'll just let it be what is and sit easy with that.

The mother of the 13 year old daughter tells me that because her daughter needed radiation treatment during her first diagnosis, she has unusual and hard to identify learning disabilities. She excels in some areas and not in others. One day she seems perfectly fine and other days less so. In fact, in the course of a day, she can one minute retain information and in the next not seem to understand even the simplest of tasks. This mothers continues her story saying that it has been 10 years of battling the education system and trying to educate them regarding the neurological effects of radiation, most of which aren't thoroughly well understood. She tries to suppress tears telling us how often she was accused of being a poor parent and not committed enough to her daughter's education. "I was told" she said, "that it was my fault that she was failing her spelling tests. That I just didn't spend enough time with her. That if I was more this or that that she wouldn't be having these problems." For 10 years this mother continued the raging battle on behalf of her daughter fighting to connect the disconnect that came to define them. To the teachers and educators throughout this little girl's elementary career, she looked and seemed just fine. "All is well," they must have thought. Yeah, she had cancer a while ago when she was little but she's cured and now everything is fine. They couldn't see outside of their box, walled with layers of fear and trimmed with a lack of compassion. That may sound harsh but sometimes the truth is. For years this woman confronted people who should have been part of her support system taking note of her battle wounds and scars but instead they became a foe adding splinters of misery to her experience. She stood before me with all those years of hurt and continued pain and now has to endure the ravages of cancer once again. To say that I am humbled by her is completely pathetic. The truth is, I am nothing compared to her and I don't mean that to sound as horrible as it probably does. The simple truth is that when you are standing among giants it is ok to recognize how small you really are.

I continued to listen to her story fully aware that I was without words; perhaps for the first time. A miracle! Sherry, the family advocate came to us marveling at the picture we made; mothers standing united trying to make sense of it all. Sherry touched me on my arm and then in flash turned around and walked with a quickened step back to the area just outside the isolation room. It was like she was trying to run and catch something that had escaped but didn't want to appear alarming. It was a man she was trying to reach and I assume he was the father of the young person who had been in crisis a few hours ago. They had obviously called him from work and he raced like the wind to get there. He was still blowing in when he arrived, wide-eyed, bewildered and frightened. He went into the room briefly only to discover that no one was in there and as he stepped out turning in circles for help, Sherry caught him. He was pale, almost gray and the contrast of his pallor and his blue shirt was stark. His shirt screamed, "BLUE!" Truly, it was the bluest garment I had ever seen and once again I found myself staring at life suspended in a state of disbelief. Sherry was quietly but firmly telling him what he needed to know. She created a sheltered space, a chamber that surrounded only them making them unseen and unheard. It was an incredible thing to witness.

Aria's chemotherapy had arrived and she was called into an evaluation room. I stayed in the hallway with the 2 other mothers. I don't remember saying good-bye. I don't really remember how the conversation ended. The mother of the young girl departed on a heavy sigh that left a dark wake. Aria was finished and suddenly we were in high speed to leave! I hugged the other mother awaiting the fate of her vacation wishing them well and left the clinic.

This tells the tale of 3 hours of one day spent in the oncology clinic, a place we have been many, many times. There were 28 families scheduled to be seen this day. In 3 hours, I was able to observe half of them and tell you about them. It isn't just about Aria. I wish it was. It isn't. It is about so much more and this realization reflects a turn I have taken on this journey that has opened my eyes to a much broader view. Sometimes it is so hard to look because the glare is so painful but I'm finding ways to take it all in and open up to it. I write about it because I'm witness to something special and I am compelled to document it not only for myself and for Aria but in celebration of all of those who a part of the view that I now see. We will one day step to the other side and join the world of normal once again but we will always carry the world of cancer with us. I imagine this world will become smaller with time but it will always be present and we will forever be marked by its power.

The power to which I refer is reflected in the garden of gifts many describe about their cancer experiences. It is the new perspective people talk about. It flowers with petals that gently blow on the breeze of "Sure makes you think" and grows among the singing grasses that in chorus chant, "Makes you realize what's really important." I am finally able to see this garden now somewhere in the distance. I catch hints of its sweet scent and I can imagine the rainbow of color it possesses. I'm not there yet but that's where I'm headed and I'm so honored to take you with me. I know it has been a gross imposition to take advantage of your time as I have but I believe that I fully honor Aria by also recognizing and honoring the many along the way. Sometimes they seem like large swaying trees bowing to us as we go. Other times, they create a glorious meadow sparkling with hope and light that I want to run through and roll around in. I see, now, with crystal clarity that although this is my journey alongside Aria and we are enjoying an easier and almost pleasant path, it is a much bigger story. We are one of a multiplicity of threads weaving in and out of this garden that is abundant with life, death, growth, decay, sharp pointed perspective and withered tired space. These threads may appear at times weak and unreliable but they possess the strength and endurance that keeps this garden held together with infinite grace. I am heading toward this place and I imagine that when I enter this new garden of Eden I will cross under a large sign that reads, "What matters most is You." ~j

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