Thursday, November 19, 2009

The beauty of our life..

January 29, 2009
Subject: The beauty of our life…

I recognize that my recent emails have detailed the harder parts of our life as we contend with the constant barrage of trials associated with cancer treatment. I fear, however, that I may have misled you little. It is no lie that the negatives we deal with on a daily basis related to Aria and the oncology clinic in general are massive. Sometimes they are overwhelming and daunting. Sometimes they feel all encompassing but I know they are not. It is exactly like being on mountain and suddenly finding yourself thinking of nothing but the mountain; how high it is, how steep, how monotonous, how lonely, how tiring, how difficult, how seemingly barren, how harsh and brutal. Then like magic, your eye catches a glimpse of a single rare mountain flower in full bloom. It's color and magnificence envelope your soul against this haunting landscape. You take a long look at this wonder-- neither disturb it or touch it. You let it be and you let in its essence. Suddenly, you are restored and somehow the mountain is less harsh, less lonely, and less difficult. You are reminded once again that it is so often the little things of life that have the greatest affect.

And so it is with me. Upon this mountain I call cancer, we have so much magic-- so many brilliant little moments. In the clinic on Tuesday surrounded by the brutality of raging disease, Aria and Rianna brought a smile to a mother filled with worry, not able to play, wanting to but not able. My girls were lions on a savanna and I was talking to this mother as they were growling at her and taking little lion swipes at her legs. I didn't want them to be too intrusive of her space, knowing that it's hard not to be playful around playful kids. It is the ultimate icky feeling. So as we were chatting I said, "Excuse me a minute. Lions! Oh lions! How about a juuuuiccccy......ZEBRA LEG!" and from my imaginary pocket I pulled out a beefy bloody zebra leg that those lions dove for and chomped on a while. She looked at me with a combination of utter amazement, amusement and confusion. I received a note from her later telling me how much she loved that interaction and I have to say, I was relieved. There’s nothing like being weird and then being even weirder and feeling completely self-conscious about it!

Yesterday, Aria was able to go to school and had an absolute blast. When I went to pick her up, she was so jazzed that she was, literally, running circles around my girlfriend, Shelly, and I. I haven't seen Aria do this in over a year. She hasn't had that much energy in all this time. Her joy was positively bursting from within her. She was giggling and I swear I thought I saw glimpses of glitter flying from her skin. The spirit of my Fairy Aria was in full form yesterday.

When Reo got home from school, Doc got all the kids ready to go outside and play on the frozen snow. We've had periods of thaw and freeze so the snow is hard-packed and easy to tromp around on. I stayed behind to clean up the library bathroom that Rianna had managed to flood. We hate this bathroom so any additional damage/demolition that we do now will save us time later. No worries! I was in the library watching the kids outside. Their bright snowsuits against the white canvas of our pasture was pure brillaince. Dazzling images of their beautiful bodies and spirits racing and soaring over the snow, running and frolicking with the dogs. Aria ran full steam to the far corner of our pasture and stood there in full glory and howled like a wolf! Rianna ran to join her and so did Reo. The three of them racing back to our yard running, leaping, laughing enjoying every single moment. The beauty of watching their childhood before my very eyes this way somehow makes up for so much hardship and horror. I don't know how that is possible but it is. Perhaps it is a deeper appreciation. Perhaps it is the sense that we have only these moments to cherish so they are best not to be ignored. Perhaps it is finally learning to grasp being present. Perhaps it is forgetting the mountain of cancer and enjoying this magical field of sunshine and play. Perhaps it is all of the above and none of it too.

Yesterday Reo brought home his progress report and he is doing exceptionally well. At this midpoint, he has already reached the year's end goal for his reading and he remains right on track for math and science. I just couldn't be more proud of this little guy. I am so proud and so in awe of him that a few weeks ago I noticed advertised in our local paper that Spokane was looking for outstanding children (K-12) to honor with a 'Chase Youth Award." I have no idea what this award actually is other than a means to recognize the children in our community that are working to make it a better place by their creativity, their courage and their resourcefulness. I nominated Reo and his nomination has been accepted and we'll see what happens at the award ceremony in March. I've included a copy of the nomination letter I submitted. I think this experience will be wonderful for the kids. They'll be able to hear stories about all kinds of kids from all over the Spokane area and I think this is a wonderful way to build a genuine sense of community. The fact that I had the extra energy and thought to go through with this tells me that I'm healing. It tells me that I'm better, that we're all better in spite of the fact that things still get really difficult. We are well.

Rianna continues to amaze me. She is starting to talk up a storm. It is still a lot of 2 year old alien speak that only the mother ship can decipher but I sense the language emerging. She had her well baby check Tuesday afternoon and she is just a perfect little person. She is high energy, inquisitive, the master annoyer and copy-cat. She is pure comic relief that is grounding and real. I am so proud of her.

The mountain is looming and large but the delicacies of Life are sustaining and uplifting. I carry on step by step because of it. Sometimes I see only the mountain, but then I catch a glimpse and I am restored and anew. ~j

Nomination Letter for the Chase Youth Award for Courage:

It is a great honor for me to sit and write about my son, Reo D. Layton who is 7years old and a first grader at Medical Lake Elementary School. Reo is an average little boy. He is neither a gifted student nor athlete. He has not rallied his peers for some community cause nor has he faced personal hardship that he’s found creative ways of overcoming. Reo spends his days like any other egocentric kid. Yet, he is extraordinary.

In January 2008, Reo’s little sister, Aria, was diagnosed with leukemia. Suddenly our family was thrown into a world filled with desperation, fear, crisis, anxiety and unknowns. Reo and Aria were very close playmates and overnight he saw her completely change. She spent days lying in a hospital bed with IV cords. She screamed in pain, begging for help, terrified much of the time. Reo did not comfort her outwardly. He didn’t stroke her hair or rub her back. But he did ride on her bed every time she needed an x-ray or when she was returning from surgery. He did tell her again and again, “It’s going to be ok Aria.” She believed him and so did I. He did pick out movies for her to watch and together they watched more television than I care to think about. He did entertain their baby sister, finding toys for her and ways to keep her occupied when we were quarantined to our room.

When Aria was released from the hospital and we began our life of outpatient treatments, Reo never missed an appointment, wanting only to be with Aria. In those first few months, our clinic appointments would last several hours, and although the waiting area and playrooms are exceptionally fun and kid friendly, Reo often sat on the sidelines and waited with patience, the likes of which I have never seen in a young child. He quietly watched and took everything in. I can’t remember a time that he complained or whined about wanting to leave and trust me, he had every reason to complain. He heard “just-a-minute” or “wait your turn” or “hang on” countless times. We learned that siblings of children with cancer are often called “Shadow Survivors”. This is a heart-wrenching reality and every parent I know does their best to make certain their other children aren’t left on the back burner. I remember feeling haunted by the idea of ‘shadow survivor’ and knew that if Reo had a role to play, the inclusion he felt would be immensely empowering in a very powerless situation. Reo became instrumental in helping us all celebrate the simple little mundane things of every day life. Suddenly eating a meal together was worthy of attention. Reading books, watching movies, telling stories, acting out movie characters, reviewing his school work, and helping with household chores became peaceful highlights in exceedingly stressful times.

It took over 10 months before Aria regained her strength, stamina and real desire for play that she once had. Reo stayed by her side and remained a silent presence that gave her healing comfort that I will never fully understand. Aria has had to go to the ER a number of times this past year and Reo has been with her all but once and that experience was revealing. His first grade teacher called to tell me that he was not himself and was worrying himself sick that “Aria is at the hospital. She’s ok but I’m not there with her.” We picked him up early from school that day and the brightness he brought into her room was blinding. The brilliance of their smiles and the relief they felt being together was breathtaking to witness. I don’t know that we can quantify the power of this kind of healing.

Reo is an exceptional young person worthy of a Chase Youth Award. He reminds us that sometimes the greatness of a person is the gift of their presence in relishing the ordinary things of life despite extraordinary circumstances. Sincerely, Julia M. Hayes

Aria's January Spinal Tap

January 26, 2009
Subject: Aria’s January Spinal Tap

Last week Monday and Tuesday January 19 and 20, 2009 found the Layton family in the clinic. Monday was the day following our wonderful time on the mountains skiing and we went into clinic still feeling quite high about it. We were savoring the day and all the wonderful moments it brought. It was a busy clinic and the playroom was filled with familiar faces. People were in good spirits and there was brightness in the air. The flow of clinic was nice and easy.

Aria's labs were draw immediately and we contented ourselves playing with all kinds of things. We were also taking turns chasing Rianna who thought it ever so hilarious to run up and down the halls. I was grateful that the tone of the clinic was conducive for this kind of play. It isn’t always this way. There was no one that I saw in need of critical care per se. No one was walking around attached to an IV pole. The nurses were light and jovial and the sober mood I know so well was minimal.

Dr. Trobaugh wanted to examine Aria and review her lab results, which is standard protocol before any procedure. For almost an entire year, Aria had been receiving her spinal taps on Friday, which meant that we checked in first thing in the morning, had her labs drawn, waited for the results, met with Dr. Trobaugh and then she was seen for the spinal tap procedure, followed by more waiting for her vincristine, which was administered via her port usually within 30 minutes of her procedure. All in all Fridays have been exceptionally long days usually lasting 6 hours or more. Because of Aria's hospitalizations in recent months, the schedule changed. Her spinal taps are now on Tuesday mornings and so the Monday before Aria's labs are drawn and she is examined. Although this means that we have to go clinic 2 days in a row, it has been rather nice to break up the time this way. We know so many people and the environment is so familiar that it has become a sense of community and a welcomed one at that.

In the interim of waiting for Aria's lab results, I was showing the Feb/March issue of MaryJanesFarm magazine, which has a beautiful feature of yours truly and Aria. MaryJane Butters has been very generous to me this past year and this feature is such a gift. I am eternally grateful and as cool as it is to be in a magazine, I have to say that the many other articles and stories that fill these pages are every bit worth your while. The magazine is dedicated to bees and brings to our attention the plight of these necessary pollinators.

As I was showing it off to a few trusted folks, there was a woman in the playroom with her 2 boys. I have seen her only once before and both times now she has been stoic and a little blank. I know that look well and I've wondered about her. She was passing the magazine back to me when she looked at me and asked, "Do you mind?" I was amazed and replied, "Of course not!" She read the page and everything about her was silent. She looked up at me handing the magazine over when I sensed a sadness about her. I know her sorrow. Maybe I reading into it but I don't think so. She said to me, "That's so right on. You really are a good writer." It was such an overwhelming moment for me. This kind of generosity...I'm not really sure how to handle it. I thanked her. She nodded and asked how long we'd been coming. I told her a year and she smiled. "Leukemia?" I nodded and I asked about her and her son. She told me that her 8 year old son was diagnosed 8 months ago with lymphoma. She said it had been really hard and it was harder because, "My insurance through work isn't very good." I didn't get a chance to ask her any more because it was our turn to meet with Dr. Trobaugh. Instead, I thanked her again and said, "I'm sure I'll see you soon." She smiled and I left wondering about her, about insurance and how a catastrophic illness such as cancer can obliterate every aspect of a person's life.

When we had our meeting with Dr. Trobaugh it was so obvious to me that Doc and I were still riding the high of our skiing adventure. We were relishing Aria's wellness. She was just incredible and we were talking it up. I found myself saying things like, "She is as well as she was before she got sick. It has been so great to see her like this. It makes me so happy to see her doing so well. We are rejoicing to have this slice of normal slowly coming back to us." I wonder now as I'm writing this a week later if I was breathless as I was speaking. I wonder if there was a hint of desperation in my voice. I wonder if my smile mingled with a look of fear. I wonder if in between everything I was saying I was shouting simultaneously, "Don't you dare rain on this parade! Don't you even think of telling us anything bad! Don't think about killing this buzz. Don't do it! Please don't do it!" I don't want that voice to be there. I don't want to hear it screaming the same time I'm trying to enjoy the moment. I hate that voice. But there it is, nevertheless.

Dr. Trobaugh listened to our tales. She smiled and was genuinely amused. She entertained Reo and giggled at Rianna. She was thoroughly present to our moment and then like magic, the moment was over. I remember taking a deep breath and just asking Dr. Trobaugh, "So what's the word?" My attitude was definitely "let's just get this over with, shall we?" Aria's ANC had dropped to 960 and 12 days before it was 1516.

She began, "So, yeah, ok. So her ANC is dropping and I'm kinda worried about it. When she trends downward, she tends to tank. So I want to talk to you guys about maybe changing her Septra (antibiotic) because I think she might be really sensitive to it."

At this point all of her words became this weird whirling whushing sound that reminded me of an old time fan in a historic building in some nearly deserted small town. Not only that but I was aware that the lights seemed dimmer. I was processing. I thought I had understood the reason for Aria's Septra, which she takes twice a day on Saturdays and Sundays. I thought it was a preventive kind of thing so I couldn't figure out how her ANC had anything to do with it. What does the antibiotic have to do with her counts dropping and not only that but I thought the goal was to keep Aria's ANC between 500 and 1500. An ANC of 960 sounded perfect! I was gathering my thoughts when Aria chimes in, "Dada, I need to go pee!" Suddenly he was taking her but wanting to ask Dr. Trobaugh some questions. He looked a little stunned and wanted to stay focused at the same time I had questions too. We were both moving and staying put. It was a bizarre dance. Meanwhile, Aria had climbed off the exam table and headed out the door followed by Rianna.

Doc stood up with them but didn't want to leave the room. I wasn't able to move and asked that he take the girls while I ask a question and then we'd switch. He nodded and cajoled Rianna to follow him while I stayed behind to ask Dr. Trobaugh what this all meant. She explained that a side effect of the Septra is a decrease in counts. So looking at the septra in combination with the chemo that is injected into her spinal fluid every 3 months (methotrexate) which is also a chemo that she takes in pill form on Fridays as well as the monthly vincristine and the steroids she takes 5 days a month plus the daily chemo pill (6MP) simply does a number on her counts. That's what the chemo is supposed to do. It is supposed to suppress her immune system but the problem is that Aria is very sensitive to the medicine, so that in this combination it has caused her to get so suppressed that she's been hospitalized every 2 months. Dr. Trobaugh wants to see if changing the Septra can make her ANC more stable and keep her out of the hospital.

I'm still processing this while Dr. Trobaugh is explaining it to me. In the moment with her, all I understood was, "Side effect of Septra is lower counts." The rest I just wrote was what I've been processing this past week. I also asked her before I took over for Doc why she was worried about an ANC of 960 when I thought it was roughly right where we want to be. She agreed that an ANC of 960 is great but that she wants to see a stable ANC. In other words, if Aria had presented with an ANC of 1400 when just 12 days before it was 1516, then there wouldn't be any cause for concern. So a 500+ drop in her counts in roughly 2 weeks is significant because on this trajectory, in another 2 weeks Aria's ANC would be below 500 which means she becomes incredibly susceptible to whatever is out there and would more than likely wind up in the hospital. This is exactly what's been happening for months. Aria has not had a stable ANC yet. So this is why we dial up her medication and then down and why we may have to try different medications when we can.

Sigh. I got it. I understood. "Shit!" I muttered to myself as I went to the bathroom. I was so distracted. My buzz was so killed. Doc stayed and helped me with the girls. We needed something to do as we processed this. In the grand scheme of things, it is no big deal. Really. It is what it is. The bummer is that we just wanted to ride our buzz from the day before just a little longer and this news was outside the realm of Aria doing as well as we thought she was.

She is doing well, but.....She's feeling great, but.....Her energy is awesome, but...She just went skiing for heaven's sake, but...She's in remission, but.... That's the bummer. That's the stuff that blindsides and takes a minute or two to digest. It's really hard and try as I may to be accepting of whatever comes, it is so painful and so raw still. I wouldn't be honest if I didn't admit that this is the kind of thing that makes me cry. I want her to enjoy the wellness that we sense and there are these moments where that seems stripped away even if it is temporary. I have this voice that scolds me, "Yeah, yeah, yeah, stop yer bitchin' and get on with it." It is a hard thing to hear but it is also a welcomed sentiment. Although I need to acknowledge my feelings and give myself permission to feel them, this particular voice keeps me from getting stuck in an emotional whirlpool.

Doc stayed with the girls and I in the bathroom. We just looked at each other and sighed. I remember him saying something, "Oh man! I didn't see this coming at all." I was completely choked up at that point and needed an extra moment to compose myself. We returned to the examination room and Doc started asking questions. Dr. Trobaugh had already mentioned an alternative antibiotic but I didn't hear her the first time. I can't tell you the name. I have no idea. At first I heard, "Inhaled. She'll need a breathing treatment beforehand. I won't be able to be in the room with her because I'm still nursing with Rianna. Risk of breath-through pneumonia." In my head I hear, "Whoa! break through pneumonia!? What is going on here?"

I stop the conversation. "I'm sorry, Dr. Trobaugh. Forgive me Doc. What are we talking about here?" I hadn't realized there was a second part to this particular buzz kill. She smiled and I took a deep breath. She acknowledged that Aria really is doing as well as we think she is. She reassured us that this isn't something that we need to decide today. This isn't a change we need to make immediately. She said, "I just wanted to mention it. I wanted to start a dialogue about it in case it is something you guys want to explore in another month or two or never. I just want to discuss it." This is why Dr. Trobaugh is so wonderful. She reads us so well and her reassurance is warm and soothing. It really is the perfect salve. Exercising her seemingly limitless supply of patience, she began again. There is an alternative antibiotic that many kids who are allergic to Septra automatically have to take. It isn't the top line like Septra but it still does the trick. The negatives are that it is more effective when inhaled and because it has to be inhaled Aria would receive a breathing treatment beforehand. I can't remember but I think it is only once a month. The real risk is what is called break-through pneumonia, which is what people with HIV/Aids contend with. This sounded absolutely terrifying to me. I remember looking over my shoulder at Doc in disbelief.

It was here that we expressed that we understood the information, risks, advantages and the like. However Doc said, "I appreciate this information, but Dr. Trobaugh, Aria is finally feeling well. She's been back at school. We are doing great and I just don't want to change anything yet." It was here that I added, "I feel like we're just turning the corner of months of a revolving door kind of illness. We are finally all well. I understand that Aria has not had a stable ANC and I understand that the Septra may be a culprit but there have also been other factors, like illness, that we've had to deal with too. Would it be possible to monitor her counts every week for a while instead of every 2 weeks. This way we can see the trend happening that much faster and maybe nip it sooner." Dr. Trobaugh was in full agreement and I think she understood our reluctance to not want to change anything right now. In fact, I'm certain of it.

We reviewed all of her medications and the plan for the next month. With a "see you in the morning!" we were off. On our way home Doc asked me if his saying "let's not change anything right now" was too, too. I cut him off. I knew he was going to grapple with and need reassurance about the fact that he was not questioning but maybe challenging Dr. Trobaugh's recommendations as a physician himself. Doc, because he's a doctor, knows and understands so much more than the rest of us. I know he was concerned about how he was coming across to her. He didn't want to give the impression that he questioned her judgment. He doesn't. He trusts her completely. He simply didn't want to get entangled in the moment of shock and change something that really doesn't need to be changed right away. I remarked that Doc keeps a level head. "Honey, you are the grounding force. You gave the situation some pause when it would have been so easy to run on the energy of being stunned and disappointed." He was relieved. I continued, "I might also add, that you are a noble gentleman and everything you said and the manner in which you said it was gentle and respectful." I thoroughly believe Dr. Trobaugh appreciates the clarity that Doc brings to the discussion. I don't share his clarity in the moment very often. I don't understand medicine the way he does. So I hear Dr. Trobaugh say, "I'm worried and I think we need to change.." and that's it for me. I'm ready to change. I'm ready to do a.n.y.t.h.i.n.g she tells me. Doc, on the other hand, helps remind me that we can take a day to think about it. We can take an extra few minutes to think about it and be certain we understand. He reminds me that the more I understand, the less I have to fear.

We had a wonderful day when we got home. We celebrated Martin Luther King and for me I remembered writing about him last year. I had read his autobiography and was stunned by his courage and tenacity. I knew then that I would need some of his Spirit and I have kept that thought and his image close.

Before we knew it, it was Tuesday morning 7am and time to head back to clinic. When we arrived it was quiet. There were 2 mothers with their kids I had never met before. They were talking about having just been released from the inpatient unit and were discussing issues related to insurance. They were both expressing feelings of financial stress. This, on top of everything else is something I am so grateful that we don't have to contend with and yet I am so much more aware of the sickness called our health care system that is so pervasive.

We introduced ourselves and shared summaries of our stories. They were calling themselves 'the freshman class' since they are brand new to the outpatient world. I found this hilarious and appreciated so deeply their sense of humor. I found it hard to believe that we're probably considered sophmores and maybe even juniors in the process. There was a little girl, 21/2 years old, who was diagnosed with ALL a few months ago. She spent 6 weeks in the hospital! I can't imagine and yet obviously I can. She's doing really well though and she was energetic, full of life and just pure joy. The other little one was just 15 months old and was diagnosed with neuroblastoma. He has 6 tumors throughout his body and his mom said that he is doing so much better than he was just 6 weeks ago when they discovered his cancer. His journey is going to be completely unfamiliar to me. He'll have intensive chemotherapy for the next few months along with radiation and then a bone marrow transplant in the next several months. They'll have to live in Seattle for about 4 months. It just sounds grueling and brutal and sort of puts our situation in a very different place. I actually have to fight not comparing in that way because it is an emotionally conflicting thing to do. On one hand what we're dealing with compared to most people is awful and it makes me so sad and yet within the world of pediatric cancer, we're doing really, really well and I'm overwhelmed with gratitude. Comparing is a slippery slope but so easy to visit and when I find myself doing that I think about something Doc said. "Honey, it's all relative. There's Horrible, Really bad and Bad. We're doing great in the bad part of the spectrum." Isn't that perfect? Still, their situation sounds horrible in my book and I found myself thinking about 'moments'--celebrating and cherishing moments with each other. It is all we have.

They were lovely women and I look forward to running into them frequently. One of the mothers told me that because her daughter spent more than 30 days in the hospital that they automatically qualify for Medi-caid, "which is a God-send" she said. "I have no idea what we'd do without that," she added. The other mother told us that she applied for assistance but because of their income did not qualify. She said that they are only now finding out how flimsy their insurance really is. They are facing medical bills, I'm guessing, that will probably be in the hundreds of thousands of dollars. It is a frightening piece that just sickens me. I tell you, I'll be watching very closely what's happening in the world of our health care.

Aria's spinal tap went off without a hitch. Doc was with her the entire time as he has been since the beginning. I was able to stand in the waiting area, with my hand on my heart, and watch Barack Obama become our President. I was one of millions of people the world over who was in tears and thrilled about the tone of hope and change. Reo watched with me and it brought such joy to an already intense situation. When Aria was finished, which seemed like a blink of an eye, she was ready to EAT! I went to the Ronald McDonald room to make her some toast and butter. "Mom, I like the bread just kind of that light yellow color, not brown and I like the butter melted in." This order, by the way, of toast and butter gets really hard when she's on steroids. It goes something like this: "Hey, mom, you know that bread and butter? Mom, mom,mom. That bread? You know the kind I like? Well, I don't like it brown and crunchy 'cuz it hurts my teeth, but I like it yellow not all the way white. Mom, know that bread? I like it kind of that yellow color without all the seeds. You know? And the butter, I like it melted in not out but in. I sometimes like to see it but sometimes I don't...just melted and just right." I swear, when she gets into this mode, I just say a quick Hail Mary and hope for the best!

Anyway, I was in the Ronald McDonald room making her some toast and butter praying it was "right" when a woman I've seen for the last year came in. I've always wondered about her and have always wanted to meet her but the opportunity has never come up. I always thought that since I saw her so often that her son must have a wicked kind of cancer. She always appeared to me to be a 'seasoned pro' and I admired her. I finally had an opportunity to introduce myself. We were able to laugh and acknowledge how long we'd been noticing one another but had never had a chance to formally meet. I asked about her. She told me that her son had ALL and went through 3 1/2 years of treatment. 9 months later he relapsed. "When they told me that a bone marrow transplant was going to be his best option I knew it was bad," she said. I listened feeling heart –broken. "They couldn't find a match," she continued, "so we're doing another 31/2years of chemo. We only have 37 more weeks to go."

Sometimes I just want to scream, "I DON'T WANT TO BE A PART OF THE WORLD OF PEDIATRIC CANCER!" and yet, I am and I accept that I am. Maybe it's why I don't put blinders on or put my fingers in my ears and sing, "la-la-la-la-la-la" as a way of trying to block it all out. The other day I had this image of me being thrown this wicked football and I had a choice to make. Either I'd lie down and be trampled upon or I'd muscle up, charge through gritting my teeth the entire way toward the goal. I think you can guess what I've chosen to do. I don't even like football!

I can't remember what I said to her, if I said anything. I remember just wanting to look deeply into her eyes. I remember that we both sighed together once again visiting, "What are ya gonna do?" I meant it when I said, "It is so nice to finally meet you!"

When I reached the playroom with Aria's 'right' toast there were some new faces. I met a woman with her 6 year old daughter who, she told me, had ALL and finished her treatment, I think she said, a year ago, although it could have been more. I remember just being so thrilled to meet her and to see her daughter so far out from the world of treatment. This encounter was the first of its kind. They were there for their annual check-up. The mother was curious about Aria and asked where we were in our treatment and she was so encouraging and so optimistic. "You will get through it, you know. She'll be fine. But, it is so hard! Oh!" she rubbed her face and eyes as if remembering and suddenly feeling completely exhausted. She looked at me again and said, "Aren't those steroids just great fun?" We laughed and I replied, "Ah, no! Actually, I can't even joke about them yet. That part is really hard. I know it is only 5 days but the change that happens in just 5 days is so incredible." She looked at me with such warmth and compassion and said, "Oh, I know. Boy, do I ever know!" She does and it is comforting. This was the extent of our conversation but I tell you it was in such stark contrast to the one I had had only minutes before and I think depicts so clearly the range that can be experienced in just a matter of minutes.

Aria received her vincristine and we scheduled her follow up appointments for the next 3 months and then were on our way. Already it has been a week and tomorrow we return for another lab check. Aria will probably not go to school as a safety precaution. We're guessing that her counts are dropping and don't want to expose her unnecessarily, although its hard because 'she's doing so well.'

We've had a wonderful week at home. Aria handled her steroids fairly well although toward the end it's like living with a ticking time bomb and I have no idea what's going to set her off. Her energy was considerably lower but her spirit was high and she was playful and bright.

I'm not really hoping for stable counts tomorrow. They're going to be what they are and I'll have to accept the results and deal with them. My thoughts this evening as I write are instead of grace. I desire the grace to accept whatever comes, to ride the swells with peace, trust and balance, to recognize the suffering in others, to share what I can of myself, and to earn a welcomed view into the lives of the extraordinary people I meet. It is grace I seek. ~j

The place we're now in....

That's Reo. That itty-bitty person snow-plowing!

Aria learning balance. She's being pulled along by her instructor.

Aria and Rianna.

Rianna the snow eater!

January 20, 2009
Subject: The place we're now in..

January 20, 2009

Subject: The place we’re now in…

I thought I'd share with you a few pictures that capture Aria so completely as she is now. This first one was taken Saturday January 17, 2009 and the others on Sunday January 18, 2009 when we went skiing for the first time in 2 years. It was a phenomenal day with conditions that were nothing short of ideal; 34 degrees, sunny, crystal clear, no wind, and minimal crowds. It was heavenly! Reo had been skiing the weekend before with Doc and was eager to go again. When Doc saw what the weather was going to be like, he urged us all to go. Aria was thrilled and it was the first time in months that we were all well. I kept telling myself that it was time to let go a little and embrace her wellness. I know it is obvious that I would be hesitant, cautious and nervous and I don't begrudge those feelings but once again I found myself in a bit of battle between what my head knows and my heart feels. The two had yet another extraordinary conversation. This is how that went.

Head said things like, "Julia. Come on! She's awesome. Her energy is up. She's not going to be around a bunch of other kids in the play area. She's going to get tons of fresh air. It will be beautiful and she'll have a ball. Don't you want to give her a little piece of normal?"

Heart replied, "Of course I want her to feel normal. She is sort of. You know what I mean. Of course I want her to be outside, getting exercise and enjoy being alive. Of course I do...but..."

"But What?" Head interrupted impatiently. "But nothing! You have got to start putting away some of those feelings of yours and just start enjoying it all again. You have to do this for her. Put on that happy face and do it for her."

Heart is mildly irritated and beating a little faster, "Did you just tell me to put on a happy face? Are you suggesting that I fake it for her sake? Are you kidding me? That is such a bogus and insincere way of doing things and it really pisses me off!"

Head said defensively, "Whoa Nellie! Hold your horses there Missy! Whoa!!" pause. "Ah! Shoot! You're're right."
I take a deep breath.
Head continued, "No, you're right. You gotta Live True. You gotta put on that happy face because you actually feel happy. You have to be honest and project that. All that is you is the best for her. I'm sorry I suggested that you compromise that."

"Hey, thanks" Heart said, "Listen. I know what you're saying is excellent advice. I'm just anxious, you know? What if she gets injured? What if she gets over tired? What if...."

"Hey Julia," Head whispered gently, "Hey, what's really bugging you? Really. What's the real hesitation? Come on. You can tell me."

I take another deep breath.

"Letting go.." Heart began, "I've had her in this protective cocoon for a year now, controlling as many variables as possible. Once I start letting her go again, there are more variables that I can't control. It's scary. It's change. I'm sorta used to this cozy cocoon despite the boredom and monotony of it. At least I know this existence. Loosening those reins is hard. That's all."

Head is quiet for moment. "Time is the greatest healer. In time it will be less scary and you'll be more willing to loosen those reins. In time, you and she will out-grown this cocoon you've designed together and you'll want the freedom awaiting you. In time...give yourself some time. This day is but one simple step. I have such a good sense about it that I think it would be foolish and sort of stagnating for you not to take it! You can't stay in the cocoon so this may be the perfect opportunity to make the first crack in it."

"Heart was suddenly filled with overwhelming joy and true happiness exclaiming, "Make the first crack....Man I love that! You are absolutely right! I'm so there! I'm all over it. I can't wait!"

This conversation didn't take that long but for some reason I kept replaying it. It started the day before we went skiing and were preparing clothes and boots and mittens and such. It was a bit of ride up and down; Doubt and relief. Doubt and relief. Anxiety and calm. Anxiety and calm. My head and heart, however, were friends. They were not battling each other, which was peaceful for my Spirit. It was a necessary back and forth and when Sunday morning rolled around I was jubilant.

As we were driving the 2 hours it took to get to the mountains, we listened to music, we sang, we laughed, we reminisced. We had a ball. It was almost impossible to believe that a year ago we were staying on the inpatient unit at Sacred Heart Hospital and here we were heading up to the slopes. We were filled with gratitude and awe. Doc and I talked of plans, which is something we haven't done for nearly a year. We stopped making plans almost all together. We certainly didn't plan anything too far into the future. Things were so dark and murky but now the view is clearer. We talked about our gardens. We talked about camping and fishing. We talked about trees and our orchard. We talked about so many things that once defined our normal day-to-day and were ripped from us a year ago. We couldn't be certain, then, that we'd have them back so we worked on letting them go and trusted that Life would show us what else was in store. To be with him discussing those things that we value so deeply was breath-taking and I found myself visualizing my gardens with such richness and simplicity. I imagined our tent and sleeping bags and could see so clearly all of us cuddled close. I saw us playing in the sunflower forest and picking and shelling peas. I saw the kids 'working' the farmstand and painting new signs that read: Eggs For Sale. What was so grand about all this wonderful day-dreaming was realizing that if none of it happens, we'll still be ok, for you see, I've already let it go. Having it back is bonus!

Watching the kids on the slopes was just an amazing thing! Reo had a 2 hour ski lesson with about 6 other kids. He still has the Frankenstein stand, legs wide in a snow plow and arms straight out. We could hear him gliding down the mountain, "WhoooooooA!" It was adorable. I had to walk away though. He looked so little against the backdrop of that big mountain. It is hard to believe he can be on his own that way but he can and there he went. It was wonderful! Toward the end of his lesson, we were watching for him come by on the chair lift. We waited and waited. Suddenly, there he was. ALONE! "What the hell?" I'm trying to be cool but suddenly I sense the blood rushing from my head. I think to myself, not certain that I'm not muttering this aloud either, "He has ridden that thing this entire time all by himself! Was he up there all alone crying? What was he thinking? What was he doing? Was he having fun?" Yeah, yeah, I begin to tell myself. "He's having fun. He's good. He's good." I can see him clearly now and I notice that he's holding on with both hands and he doesn't look relaxed. Did I mention that this chair lift ride is long? I'm giving the thumbs up and shouting, "Wait to go Reo!! wooooHoooo!" All of a sudden I hear him cry, "HHHHHEEEELLLLLPPPP!" His skis are tipped up and he's getting ready to get off the chair lift by himself. There is nothing I can do but watch. I go over to where he's going to slide off in the hopes of helping him to get out of the way in case he falls when I notice this kid who couldn't have been more than 10 or 12 years old. He had gotten off the chair just before Reo and heard his cry for help. He turned around, faced Reo and held his arms out to him as if he would catch him. Reo skied off the chair lift perfectly, right into this little boy’s arms. I was completely choked up and thanked this little kid. I also gave Reo a big hug but didn't stick around too long. I immediately encouraged him to ski over to his class, which he did. It was incredible.

Aria's lesson was an hour long and she was hooked up with a great guy. It was sort of like Grandpa teaching his granddaughter. At first we were a little skeptical because Aria specified that she wanted a girl teacher but when Aria said to Mike, her instructor, "Ok, now let me tell you why I have a port!" we knew everything would be fine. She went with him and had a blast. He was so gentle and sweet with her and she thoroughly enjoyed herself. Despite the great fun, it wasn't 5 minutes of driving down the mountain before she was sound asleep! She and Rianna napped for about 90 minutes. She was wiped.

Rianna contented herself the entire time flip-flopping in the snow and eating as much of it as her face would allow. She was busy and active but a pure delight.

As Doc was returning all the rental gear and I was packing up the car and giving the kids their picnic lunch I took a moment to take in my surroundings. I can't say that I truly paused and breathed it all in. For some reason, my breath kept coming up short. It was strange but I let it be what it was. I just kept marveling at what a different place we're in now. A year is a long time and a short time too. It’s funny how that can be possible. I remember telling myself to enjoy this moment. I did and we did. I memorized the color of the sky. I took a long look at the mountain and the skiers, like insects, whizzing down it. It was good and I, for maybe the first time really, felt like this day was separate from all the rest somehow. It was as if I was able to be in this day for what it was without any attachment to our yesterdays or our tomorrows. I was thankful for that little insight and will continue to carry it with me.

Driving off the mountain away from the exhilaration and excitement, I kept wondering if those feelings would be left there somewhere on the sparkling slopes or if I'd be able to take them with us. This is the change that IT requires. IT is the holding on to those emotions within my heart that are so good and healing while weaving those thoughts within my head that grind me back to a different reality of facing what I know is awaiting us. Real change can't just be an intellectual exercise that finds me telling myself over and over again "you're fine...this is going to be're good....hang on to these feelings...." I think I actually have to feel that and believe that in order for it to be true. It takes time and each time I ponder it I know I'm getting closer. It reminds me of something Doc said and actually as I think of it, I'm not certain he said it but it sure sounds like him. He said, "Change isn't about the end result. Change is about trying again and again and again to get to where you want to be. When you find yourself there, you've changed." I agree whole-heartedly. It is the process and it is being wide open and honest in my process that will get me to where I want to be. What has been so challenging is that this change was uninvited, painful and forced upon me. I do believe pain is one of the greatest channels for change but it is also brutal. It is finding balance with the beauty and brutality I see so clearly now. Every moment I think of it, every moment I stay true, every moment I shun the temptation to deny my true self brings me closer to this balance. The sun and the sparkle of the mountain is within me and I'm confident will radiate brighter through me with each passing day. It is my hope and it is my belief. ~j