Saturday, August 22, 2009

A support group

June 21, 2008

Subject: a support group

I had the most amazing inner-dialogue with myself last night. Suddenly out of nowhere I heard my gentle mind say, "I'd like you to consider going to the support group. I think you're ready." The only rationale I have for this thought entering my consciousness from what seemed completely out of the blue was noticing a flyer on the bulletin board at the clinic yesterday (June 20, 2008) noting the time and place of this group's gathering. It was one of those glancing-take-notice-kind of moments but I literally didn't give it another thought. My mildly resistant (aka MR) mind retorted, "What? Where'd that come from?"
Gentle mind replied, "Just think about going."
MR mind asked, "What for? Do you really I'm looking to make new friendships or new connections? I feel fine!"
Gentle mind said, "Friendships? Connections? Is that what you think that group is about?"
MR mind quickly shot back with a slight hiss, "I don't know. You tell me what it's all about."
Gentle mind paused and very slowly said, "It is about being."
MR Mind considered that and said rather shyly, "But I have nothing to share. I don't know what you expect me to learn."
Gentle mind burst out laughing and with great compassion said, "Oh Julia, you're not supposed to go to share. I want you to go to learn to LISTEN."
MR mind was quiet. Gentle mind was too. I was listening and so here I go. ~j

A step toward mystery...

This is Life. One day it is wonderful and magical and the next it is riddled with sorrow. That may sound melodramatic to you because sometimes we don’t experience this radical shift at all. Sometimes it is something that the mind toys with but the spirit doesn’t actually know. However, for those who have experienced tragedy there is a heightened sensitivity to the fact that Life changes very quickly. To my mind we are given a choice in recognition of this awareness. We can choose to charge forward toward healing and light or stay behind stuck in darkness. For me, it is much easier and far more interesting to head toward the light. I’m at peace knowing that everyday brings new life and death. (8/22/09)

June 18, 2008
Subject: A step toward mystery

It may seem unfair that I would send such joyful pictures depicting a truly glorious day, along with a tale full of happiness and cheer, followed by this. I've been nibbling at this email for days and days, so it is a quirky coincidence that I'm sending it now. However, as I consider it more deeply, it doesn't really seem all that coincidental. Rather it seems a true reflection of Life. One day things are grand and lovely and the next, Life is dark and challenging. At least this is how Life seems to me these days. However grand or dreadful Life may be at times, I am learning that there are always lessons to consider and welcome, like fertilizer, as I grow....

It was my great privilege and honor to witness the vast capacity of the human spirit and I am deeply humbled by it. I went to a viewing on Friday June 6, 2008 of the little boy who died a few weeks ago. After careful reflection of my intentions, I followed what was a compelling instinctual desire to go to his wake and as I drove to the funeral home, I was peaceful knowing that I didn't have any expectations. I couldn't imagine what the funeral home was going to look like or smell like. I couldn't visualize how many people were going to be there. I couldn't imagine what he was going to look like and I couldn't imagine his mother's reaction when she saw me. I couldn't imagine anything at all and although that felt strangely empty, I was acutely aware of how open and free I felt.

The day was overcast and chilly with rain threatening a presence but never amounting to more than a misting. When I drove into the funeral home parking lot, I noticed the enormous cemetery across the street despite the fact that I have driven by it countless times. The funeral home itself looked like a lodge of some kind. It is an enormous building that reminded me of something I'd find in a swanky ski resort. It is impeccably landscaped in a pristine wooded setting that was both picturesque and grossly surreal. Outside the main doors there is a drive-through entryway where dozens of people were gathered. As I approached, I noticed that most of these grief-stricken folks were twenty-somethings huddled together in a tight reassuring pack. I couldn't help but marvel at the number of facial piercings and tattoos I saw that seem so stereotypical to the culture of this age group. I wondered about them. Who are they? Are they here for him? None of them looked familiar and as I walked by I felt much older and a little lonely.

I entered through one of 2 large glass doors typical of a corporate-like building. I found myself in a sweeping lobby area that was decorated with wooded log cabin type themes. Stuffed chairs and couches with Americana colors and plaids were situated throughout. To my immediate left there was a wooden stand displaying guest books, like sheet music, of the services and viewings that were going on throughout the building. I couldn't see one for him and as I looked over my right shoulder I caught the attention of a woman sitting at a desk that was hauntingly similar to a concierge. She asked me to follow her and as I did, I took notice of my surroundings. There were a number of lovely prints on the walls of pheasants and praire scenes, as well as prints of vases filled with delicate flowers and birds carrying sprigs of berries. Along a meandering hallway there were large posters that seemed odd and out of place. None of them made any particular impact and it was here that I noticed the overhead music. Tinkling sounds of bells and waterfalls mixed with a violin type piano sound that had no real melody or repetitious chorus flooded my ears. It flowed continuously like a stream washing over rocks and pebbles and pieces of wood. It felt deliberate and conscious despite subtle efforts to create a peaceful surrounding. I tried to imagine myself in the woods of my childhood sitting by a stream so as to match what I was seeing and hearing when all of sudden I was jolted out of my dreamy state by a larger than life poster of Elvis. I couldn't believe my eyes and as I walked by trying with every ounce of energy I had not to burst out laughing, I caught a glimpse of a small brass label at the bottom of the poster that read, "commemorative 2007". It immediately made me think of a theme I've been contemplating ever since our hospital stay, which is that "everybody has a story." I wondered about the story behind this poster and how it came to be hung on the wall of a funeral home like a gigantic commemorative postage stamp. It was so peculiar and I found myself wondering if soon I was going to see another such poster with a picture of Liberace. I shook my head in wonderment and before my thoughts could take me any further, the woman in front me turn around and with a Vanna White wave of her hand pointed me to the room where the little boy's family and friends gathered.

The first thing I noticed was the lighting, which was dim and sleepy. To my right there was a white guest book opened to the traditional 'sign-in' page. There were only a handful of signatures and I added my name but before doing so, I picked up the book and closed it. I turned it over not knowing what I'd see and was delighted to see a picture of this beautiful little boy beaming with a joyful grin framed in the center. As I slowly went through each page documenting his birth, death, family and so forth, the depth of his departure started to weigh in. I took only a single step and there just around the corner to my right lay this little boy in a light blue casket lined with white ruffled fabric. There were 5 other people in the room; his mother, step-father, grandmother, uncle and older brother. His mother, step-father and grandmother were gathered beside his casket while his brother and uncle sat in chairs against a far wall. Near them were small rectangular shaped tables that seemed to me to serve only the purpose of displaying dimly lit lamps and small bunches of flowers. They were several large cups of coffee on them that seemed completely out of place in terms of the decor but perfectly in line with the feel of the place.

His mother noticed me immediately and sighed. With grace like I've never known before, she took a few steps toward me and we embraced. It was a long, full bodied hug that was both tender and gentle. I found myself weeping and whispering, " I am so sorry he died." She told me, "Me too, but I'm so glad you're here." At that, we parted and looked into each other’s eyes and smiled. My hand didn't leave her arm for a long time. I introduced myself to her family and his mother told them how we met. Her mother sobbed saying, "I can't believe you came here! We have got to start praying for your daughter so you never have to know this." Everyone nodded in agreement. I thought, "What an extraordinary thing to say in the midst of such horrific grief." I found myself considering the infinite ability of one's spirit to give to another in moments of heart-wrenching pain. I don't know if I could be so self-less. In that moment, I can assure you, I have never known anything more beautiful than the spirit of this family.

It was here that I was fully aware of a little boy lying in his coffin. His mother and I walked over to him. I was astonished to discover that he looked nothing like how I remembered seeing him just a month or so ago. He reminded me of an uncovered mummy in way and I suddenly felt ashamed for thinking it. It felt disrespectful in a way and I didn't know what do to with that thought that was so vivid. His mother said, "He doesn't even look like himself anymore. He's starting to decompose." That word startled me and I asked when he died. She told me that Sunday morning, May 25, 2008, she went into his room and he was gone. He had died in his sleep and without pain, for which she was so grateful. I asked her if she would tell me his story and she did. The fighting spirit of this little boy was immense but his cancer was a greater foe. We laughed. We cried. We held hands. We hugged. We sat in silence. I was there for 3 hours and it was a powerful and beautiful experience. I continue to be deeply affected by the many people I'm encountering and these simple yet moving exchanges we continue to have make sincere and lasting impressions on me.

I sat next him for a long, long time and I finally asked his mother if I could touch him. She smiled and enthusiastically said, "Of course! I have no problem with that. I've been rubbing his head a lot." I told her that I had a confession to make. "I've only been to a few funerals," I began, "and the sort of sick and morbid part of me has always wanted to touch the people who had died." "I can't explain it." I continued, "But this is the first time I've ever felt comfortable enough to ask and hope I'm not being disrespectful in any way." She looked at me with such understanding and compassion. She said with a mischievous smile, "I know exactly what you mean! He's the first person I've ever touched and have always wanted to, too." She then made a gesture with her hand inviting me to touch his hands. It was here that death made a real impression. He was bald because of his chemo treatment and his cheeks were sunken a little and his skin had darkened. She told me that the morticians kept painting his lips pink, which she promptly wiped away and they, furthermore, put a glittery eye shadow on his eyelids. We chuckled in disbelief about the need to paint life on a body that is so clearly dead. She found it completely unnerving and much preferred the natural look to his face and body. I touched his hands, which were gently folded on his belly. They were cold and stiff but beautiful. I touched his head, which was also cold but incredibly smooth. I kept thinking about a perfect stone that for thousands of years had been washed by water creating a flawlessness that was natural, solid and beautiful. I couldn't help but wonder if this image would have stirred my consciousness had the tinkling watery music not been filling my ears. He was no longer in this body and although I knew that intellectually, I was so grateful to her for letting me feel that knowledge with my fingers. I told her more than once how thankful I was and what a wonderful teacher she's been for me. I thanked her for her grace and her kindness in allowing me into such an intimate part of their lives.

There were many things that were said that I found difficult. I kept thinking about the voice of grief and how absolute it was. I also kept thinking how grateful I was to be in this place, learning from these people about matters I fear and hope I never have to face, but may one day. I heard things like, "Why did God do this? We prayed and prayed and prayed. I guess God didn't hear our prayers. I just don't understand why God takes children. I suppose he's in a better place. I hope it doesn't rain tomorrow I can't deal with God taking him and then sending us His tears. Why do most of the kids with cancer have to die?" I felt their pain in a very peripheral way. I can't know it and I can't even pretend to understand it. Their comments about God sure got my mind ticking though and although I kept silent, I was aware that I didn't share their questions, which seemed completely foreign to me. I was very aware of that fact that I have never once considered God in this curve ball we've been thrown. I don't sense in any way what we're going through as 'God's doing.' I'm fully aware that this is counter to virtually everything I was taught to believe and what many still hold firmly. For me, however, it is a flimsy thought that yields little growth.

Still, I pondered their sentiments a great deal. They rang in my head like a gong. To them, God was a separate entity casting His will as He saw fit, leaving them behind in disbelief, wonder, and pure anguish. I found their idea of God hard to digest because of my inability to get beyond an obvious sense of betrayal and a withering faith that seemed precariously threatened if the view of God continued in this way. When I gave voice to those thoughts in my head I was quick to quiet them so not to create any sense of judgment. They will come to terms with what life has given them in their time and in their own way. My beliefs are my own and I was mindful of the gift presented to me as witness to their process, which then became a process of my own.

I left this funeral home-lodge feeling awe. There were 2 very distinct thoughts and one was that God is a very personal matter regardless of many attempts to make it more 'universal.' The other thought was a simple confirmation that all life is important and meaningful. All people at one time or another are someone's son or daughter. Bearing witness to this mother and the loss of her son drove home to my mind that life is so precious and so worthy of reverence that destruction of it for whatever reason or rationale slowly kills the spirit that connects us all. As I sat with that thought, I was moved to tears to consider what passed between this family and I or at least what my impression of that energy was. To me, that connection, that level of intimacy, that indescribable sense of recognizing the humanity in one another is God. If God is Love and Love is God then that's what was present and it wasn't separate or intangible. I'm still processing that a great deal because it is so outside the box of what I knew as a little girl and I sense I am only in the elementary stages of attempting to understand what I'll probably never be able to fully articulate. I try nonetheless.

I went home to my beautiful family and sat noticing Life surrounding me. I knew tomorrow, the funeral, would be heavily charged as well but I had no expectations and simply wanted to be.

I don't have much to say about the funeral itself. It was held in the same place in a small nondescript chapel. There was a pastor there who seemed nervous and a little awkward. I appreciated him immensely and although much of what he said meant little to me, what he did say that I found extremely poignant was, "We gather here because we just have to. We say the things we do because we have a need to do that. We just have to." I couldn't agree more. It was a strange gathering saying good-bye to such a young life whose death was so tragic and seemed to serve no other purpose than to bring intolerable grief and suffering. There were definitely celebratory memories shared but most of the ceremony was incredibly somber as I think you would well expect. We gathered there because we felt compelled to. I went, I realized as I sat there, because I cannot live my life afraid. I refuse to be afraid.

I sat with a few other professionals from the oncology clinic. It was tearful and yet supportive. I told a family advocate, "I'm here because I was compelled to come. I can't be afraid." Her response was surprisingly and extremely comforting, "Just because you were compelled to come and understand this process is not a premonition that this is going to be your fate!" I appreciated that more than words can really express. I don't think that thought was ever in the forefront of my mind but as soon as she said it, I realized that it was a thought that was definitely lurking and lingering. It was good to let that go.

As we were leaving, I decided that I would not attend the grave-side service. That didn't feel right to me. Instead, I spent time with some of the people who work at the clinic. I had the most wonderful conversation with the executive director of the Candlelighters, which is an organization that provides support for families enduring cancer treatment. She and I spent an hour sharing our stories and our journeys. I had met her only a few times and just briefly at that but I had a sense that we would one day have an intimate meeting. This was it and I left feeling uplifted, empowered, and strangely connected.

This is one of the darker things I have experienced as part of this journey, but I somehow have a more brilliant sense of light. I suppose it is the result of extinguishing fear and replacing it with understanding, compassion, essence, consideration, reflection and hope. It is my hope to be a worthy teacher to my children; To teach them that all life is valuable and no one life is more important than another. To teach them to cherish Life and understand that it is a gift to share. To teach them that hope is a state of mind worthy of considerable attention and care. To teach them that friendship, intimacy and love is what gives us purpose. To teach them that connecting with others is God alive in us all, without which we languish. To teach them that there is no greater praise worthy in Life than to express one's sincerity and kindness in simple heartfelt ways. To teach them to simply be.

It is with a heart filled with hope and love that I write this. I share it with you because I must. I sit here grateful that you have joined me. I know now that I have what it takes to continue on...come what may...~j


June 16, 2008

Subject: Fun

Saturday morning (June 14, 2008) around 7am Doc called to tell me that Aria's ANC was back up to 270! I was still in my pajamas, the kids were still sleeping but I would have jumped in the car right then and there racing to pick them up if Doc had wanted me to. We were absolutely beside ourselves. Aria had just woken up so he suggested I be there in an hour. For the next 30 minutes, I basically paced with excitement. Aria coming home meant that she would be able to jump in the castle too and that thought just made my day. Doc called just as I was leaving and mentioned that she was going to get one more antibiotic before leaving so it would be another 30 minutes. I decided to go to the farmer's market and score some amazing things and then head on over. I was able to show a few vendors, who know Aria, her picture and it was wonderful to take in just how much people are thinking of her and keeping her in the light of their good thoughts. It is a powerful thing. I made it to the hospital at 8 30 and they were already packed and ready to go. We were home by 9 am and by the time we drove into the driveway, the jumping castle people had arrived too (2 hours early no less!).

The jumping castle was set up in the backyard immediately and I thought both Reo and Aria would lose their minds. They stood there holding hands, watching the thing inflate, which took all of 10 minutes. Before I knew it, we had the thing wiped down with anti-bacterial wipes and they were jumping away. You would never have known that Aria had just been in the hospital! They bounced. They flopped. They ran. They climbed. They 'slided'. (as they would say). The peels of laughter....the squeals of delights....the giggles....the screams of joy.....the bright red all went on for hours and hours. At one point, I was still doing some chores making ready for the party and I found myself closing my eyes just listening to them allowing my spirit to bask in the glow of their fun.

We took a few breaks before the party started at 1 pm but not many. I was in awe. Our friends Amy and Bethany, who have been babysitting the kids for years, were driving by at one point and I can only assume saw the castle. With spinning tires and a slight screeeecccchhh of the brakes, they ran out of their car and into the castle with the kids. Aria, Reo and Rianna were in heaven!

Oh, yes, Rianna was in the middle of it all too. That little monkey was able to climb a nice steep ladder herself and slide down the slide. I caught her out of the corner of my eye going down the slide and was about to panic when Doc told me that she'd been doing that since first climbing into the thing. That child is incredible. She wasn't the least bit disturbed by the big kids and the fact that she lost her balance every other step. No, no. There was just enough room on her face for the enormous smile she wore the entire time. Obviously, we kept a hawk's eye on Aria. I was worried but quickly recognized the need to find some balance. The polar questions and thoughts muttering in my mind were unobtrusive but persistent.
"You know Julia, Aria just got out of the hospital. Be careful with her. Don't let her exert herself too much. She could get over-tired easily and maybe sick again. Sick, sick, sick. Germs, germs, germs."
This was countered by, "Yeah, yeah, yeah. Isn't being able to just be a kid an important part of healing? Isn't joy and laughter medicinal for her spirit and sense of well-being? Look at her. She's in paradise and doesn't seem the least bit tuckered, weak or sickly. Don't you think she'll let us know when she's had enough? For heaven's sake, let her go and have fun. Let her be a kid. Stop hovering and worrying. She's fine. She is truly a marvel to behold. Pay attention to what you're supposed to learn here."

I heard that one and heard myself say aloud, "What?" That last thought sort of snuck itself in there and definitely caught me off guard. "Pay attention to what I'm supposed to learn here?!" I wandered around for a long time with that thought ringing in my ears. It was a light thought, a good thought, a surprising thought and a challenging thought. I loved it and smiled full of joy and peace.

Half a dozen kids showed up with their parents and played for a few hours. It was tremendous fun. Reo was overjoyed to see his friends here. He was a wonderful little host, which for those of you who know him, is a big deal. Reo is a solitary bashful kid, so this was very big for him. He positively stunned me when he rattled off the names of at least 10 other kids who didn't come. I could tell that he was disappointed because he has really wanted to see these kids. After a brief conversation about it, he was off pouncing in the castle again. He mentioned not having all the kids from his class here more than once so it made quite an impression but I don't think it clouded his fun in any significant way. Our neighbors and dear friends, Tata, and Papa G came while their youngest daughter, Ally, joined in on the fun too. Ally watched Rianna and Aria while the party was going on. She had arrived home from her freshman year at college the day before so I recruited her help immediately. She is absolutely incredible in every way and I am so grateful for her help.

The party was over around 3 o'clock and most of the kids left with sunken shoulders and pouty faces, which is always a good sign! Nobody wanted to leave!!! That's the goal here; create such a good time that everyone leaves in tears! I'm hoping they'll be back in a few weeks for Reo's birthday party. That should be really fun too. The rest of the day was spent cleaning up and playing. As soon as the kids left, Aria and Rianna came back down to jump some more in the castle. We wiped it all down again and for the next several hours that is where they were. There were no major mishaps; a few scrapes and scratches and a couple of rug-type burns but nothing more than that. It was such a grand time.

Naturally, I was thinking about what I was supposed to learn. I was sort of waiting for the answer to hit me as if the answer was circulating before me patient in its desire to be noticed. In reality, it wasn't like that at all. Instead, the afternoon was spent considering many little bits of awareness that made up the larger focal point of learning called "balance." There were so many well balanced aspects to the day that created such harmony in my mind.

+Aria is very sick BUT Aria is so well that she can play for hours in a jumping castle and have fun. Joy and laughter contribute immeasurably to her healing.

+The demands of hosting even a small gathering are great and even greater with the added layer of having just spent a few days in the hospital BUT I had so many people helping me and supporting me without whom, the gathering would have been a real challenge.

+Reo wanted more of his friends to show up BUT the smaller gathering was actually perfect, intimate and wonderful.

+I still can't have fresh cut flowers in the house BUT I was able to have vases on the tables outside. I caught glimpses of them all day long and that alone made my spirit soar.

+We were tired BUT we were at ease.

+We have had 5 months of tremendous stress, worry and concern BUT on this day we had an almost complete respite from that anxiety.

+It is sometimes hard to escape the profound horror of the human experience and the massive scale of it BUT this small collection of beautiful souls celebrating the joys of children created goodness that is so much greater in some ways than the sorrow with which we are inundated.

Balance, I continue to learn, has nothing to do with examining the larger features of life but rather the little ordinary ones. The little simple things that when I allow myself the pause, fill me with awe and gratitude.

The other day, I was walking into the house and I noticed on the step where a fairy, given to me by my Aunt Sue and my Uncle John, sits. She is such a pretty little presence and has been in several places around the farm trying to find a more permanent home. She found it on the front steps and she has become a lovely little fanciful guard. I noticed on her toes a large brown fuzzy butterfly. I was so taken by its presence that I sat down for a moment to say hello. The following day, there were 2 butterflies on her toes and my front step was a very happy place. It has been the perfect balance to the darkness that has been looming there for the past few months.

It is worth mentioning here that I could not have had the weekend I did without the love and support of 2 of my 3 dear and cherished Goddesses. They cooked, cleaned, cut flowers, played, played and played some more, took pictures, cooked and cleaned some more. They were pure joy for me, which gave me a whopping dose of "ahhhhhhhh" to face this next few weeks. They are true friends inside and out. My wish is that everyone I know can experience a friendship such as I have with them. I have said to them and to others that it isn't so much what they do for me, although in this instance what they did was enormous, it is who they are that is so healing to me and those around me.

It is now Monday June 16 2008 in the afternoon and it is again a glorious day. Aria's counts were not high enough today for us to proceed with her next phase of treatment. This is not a surprise. We'll go back on Friday morning and hopefully her counts will be high enough to move forward. At that time, she will be in the hospital for only one night, provided she tolerates the new chemotherapy well and then we'll be going to the clinic on a daily basis for the next few days. I don't know what happens after that. I've learned not to look too far down the path. It is a waiting game now and we are anxious and excited.

I was telling a friend that it feels like I'm about to summit a peak, although I have never done such a thing in my life, so I really have no idea what facing a summit is actually like. But what I sense is what I imagine it would feel like. The anticipation, the excitement, the nerves, the fear, the need to fulfill something so close to achieving... that is where I feel we are now. The peculiar thing is that I don't suspect the 'descending' journey that all other summits require that are equally treacherous. Rather, I sense we are on the verge of a plateau of sorts; a new elevation, a new view, a new way to live this life. I can't tell you what a remarkable feeling that is to imagine. I know we have yet a steep slope to climb but the maintenance treatment that we face is this nice plateau. In no way do I imagine descending to what we used to know and how we used to live. We are forever changed and altered and not all of that is negative. It simply is.

As I think about enjoying this week, our first week of summer vacation before this last phase of intense treatment, I am filled with happiness and tremendous hope. It is no coincidence nor is it a small thing to say that Saturday with Aria home and our jumping castle filling the farm with child-like ecstasy made me aware that for the first time in 5 months, death was no longer at my front door. ~j

Aria is STILL in the hospital!

June 14, 2008
Subject: Aria is STILL in the hospital!

It is a gorgeous Saturday morning here on the farm (June 14, 2008). We are very excited about Reo's "End of School Year Party" later this afternoon. He's about to lose his mind over the fact that a jumping castle is going to be in his very own backyard! I'm thrilled for him. Aria is doing so well and I thank you for all your warm wishes and thoughts. It means so much to hear from you! Aria has not had a fever since arriving to the ER on Wednesday, which is wonderful and her cultures have been negative, which means that they haven't been able to grow any bacteria. Dr. Trobaugh thinks that because her immune system is so suppressed at this stage of treatment that a naturally occurring bacteria in her body just took over enough to give her a little fever. We were on top of it and she received a broad spectrum antibiotic that it was quickly put back in check. She assured me that during Delayed Intensification this kind of thing happens all the time. So, Aria's been stuck in the hospital feeling great but can't go anywhere until her counts come back up. On Thursday her body was still fighting that little buggy outburst so her ANC tanked to 22. Yesterday, though it was back up to 78 and Dr. Trobaugh asked if I'd like another one drawn in the afternoon to see if it had improved enough to go home. She was confident that it would be any time because she looked so well. By 6pm her counts were indeed up to 124 but this isn't enough to leave. She needs to be 200 or above and Dr. Trobaugh wants to stick to the protocol as best she can. So, last night Doc called and was bummed. I was hoping, hoping, hoping that they'd be able to come home. Aria is starting to get a stir crazy! Now we're hoping that this morning's labs reveal an ANC above 200 and then I'll race over there and pick them up pronto!

She is scheduled to begin the 2nd half of this phase on Tuesday June 17th 2008. At that time she'll be admitted for an overnighter and she'll begin a new protocol of chemo drugs. Her counts, however, need to be 750 or above by Monday! It is possible but unlikely, so we'll probably have to delay it until Friday. We'll see. I'm learning that this is part of what makes this phase so intense. It is a waiting game or sorts. She gets a little fever because she's so immuno-suppressed but it doesn't amount to anything much other than sinking her counts. We wait for them to come back up to start the chemo meds again and then those suppress her immune system so her counts go down. It is up and down and up and down. Fortunately, it is only going to last another month or so and we will have made it to maintenance! That is so hard to believe sometimes!

While in the hospital, it is worth saying that the nurses were marveling over the fact that she'd only been admitted one other time! They also were impressed that her hospital stay at that time was so short. Furthermore, it looks like this one is going to be a short stay too. One nurse mentioned to me yesterday that it isn't unheard of to have kids staying in the hospital for a month at a time because their ANC has been at 0! I can't imagine that! So we're doing really well and I feel very grateful for that! I'm sure I'll have some reflective thoughts to put down but for now, it is worth simply documenting a status report. I'll be sure to let you know if she gets to leave this morning and join in the party!

Here's to simple things! ~j

Aria was admitted 6/08

Aria in the Emergency Room with Reo by her side. Reo is always by her side.

Reo and Aria taking a ride to her hospital room.

June 12, 2008

Subject: Aria was admitted

June 12, 2008:
After checking Aria' temperature 3 times yesterday (June 11, 2008), I called the clinic and was told to head to the ER pronto. It is so strange. We were watching a movie and I was cuddling with Aria and at the end of the show I thought, "You feel sort of warm. Let's go check your temperature." Her cheeks were slightly warm but the top of her head was definitely warm as was her neck and forehead. I thought, "Better check and make sure." Aria was resistant and grumbled, "I'm fine Mom!" When I checked it the first time I was shocked. 101.3! I gave her a minute or two to cool down. I know it is ridiculous but that's the thought that entered my head. I also needed time to pace and wander in disbelief!

Our clinic nurse, Mary, assured me that she would call ahead and let the ER know we were coming. We packed up and within 15 minutes were out the door. The entire drive to the hospital Aria was quoting lines from the movie Finding Nemo. It was hilarious. She was in great spirits, which is why a 101.3 fever was so weird and freaky! It came out of nowhere. Just a few hours earlier I was telling a friend how well she was doing so this was a true stunner. Let me say that Doc arrived home early saying, "I just needed to be home." Within 30 minutes of his arrival we were headed to the ER. I was so grateful that I didn't have to manage this one on my own. 3 kids, first ER trip potentially solo. Nope! The whole thing sounded positively icky so having Doc with me was so huge. I sent a whopping "thanks" on up to what Kurt Vonnegut liked to say, "The Great Big Everything."

I dropped Doc and Aria off at the ER and Reo, Rianna and I raced away to a bakery to pick-up some cupcakes I had ordered for his birthday party celebration in his class today (Thursday). So adorable! We zoomed on back to the ER and Doc and Aria were already in a room and her port had already been accessed. They were drawing blood cultures and a physician was checking her out. It was fine. Aria was still in a super mood and her temperature dropped to 99.4. We waited to see what her counts were going to be. Anything less than 500 is an automatic admit so we were keeping our fingers crossed. About 30 minutes later and much effort keeping Rianna contained (I finally stuck her in the sink and let her rip out paper towels!) we got Aria' lab results. She'd already been given big gun IV antibiotics just in case. Her counts had tanked again to 54! We were absolutely stunned. Actually, it is more accurate to say that I was completely stunned. I don't actually know what Doc thought, although he seemed surprised. So we were prepping the kids for a sleep-over and frankly, Aria was delighted. She started to rattle off the movies she wanted in her room! She also started to mention how starving she was and how pizza sounded so great. So we were preparing to head upstairs to a room, and then have Doc head home to get a change of clothes and order some pizza. When transport showed up, he brought a wide wheelchair so that both Reo and Aria could ride up to the third floor. It was mighty cute! I have to say that seeing Aria bald and wearing a mask while we walked through the hospital was hard. It is reality but it is still so hard. Little things that like catch me off guard sometimes and fling me into the depth of the reality of it all.

We made it to the oncology ward and were given a hearty welcome. Aria was checked in, hooked up and situated. It was after 7pm by the time Doc left to go home and get himself situated. As luck would have it, a huge pizza party was happening in the Ronald McDonald room so we dove in, which saved Doc copious amounts of time, which is a high commodity these days. The kids settled in with sodas pizza and a movie. It was fine. Rianna was all over the map but she's a perfect little 18 month old and that's just what they do. It is challenging though. At least now she is that much more coordinated so she isn't tripping in the shower stall and so forth. But she is of course, yanking the emergency pull cords, which we tied and taped again and she's climbing all over the place. She's also digging in drawers and cabinets. It would be so funny if it wasn't so exhausting on top of an already very stressful situation! Aria’s temperature had dropped to 98.3, which was great. As I'm learning, things change within a very short period of time so living with this bizarre constant threat looming is odd and somewhat contrary to living in the moment. I try to be present but the temptation to address my constant concern is always there. I’ll have to think about that some more. Reo, Rianna and I left close to 8:30pm.

It is now a gorgeous Thursday morning. I am in very good spirits in this moment. When I last spoke to Doc Aria was completely beside herself that she was going to be able to watch another movie and stay up way past her bed-time! It is important to remember simple pleasures such as these. I'll be heading over to the hospital after I take Reo to school. I won't be able to join in on his party, which is a TOTAL bummer but I don't think I was going to be able to do that anyway. Dragging Rianna to something like this is too hard on me and the classroom teacher. Doc is going to a meeting and then will hopefully be able to re-work his schedule for this afternoon. I'm hoping that Rianna doesn't have to spend the day at the hospital, for all of our sakes! She needs to be outside on the farm running around playing and eating sand! We'll see how it all plays out.

Aria will have to stay at least until this evening. The nurses were saying that she might be able to go home within 24 hours but then we all had a hearty laugh over the fantasy of that thought! She'll more than likely stay tonight. It all depends on her counts, which have to be above 250. We'll know a lot more today. I'm hoping she had a good night and was fever free! I should hear from Doc in a short while. Keep us in the light of your good thoughts and wishes! ~j

Aria's noggin

June 10, 2008
Subject: Aria’s noggin’

By Sunday afternoon, I couldn't take it anymore. The shedding was starting to get in Aria's nose and mouth. She and I played a wonderful game where she yanked out handfuls of her hair and made a wish, "I wish for poop!" and then sprinkled her hair on my head. It was so much fun! I told her though, "Aria, your hair is getting everywhere, let's go downstairs and cut it all off!" So, she and I proceeded to the kitchen where I fetched the clippers and I shaved her head. I won't lie to you. It was both heart-wrenching and adorable. I'm trying to find the happy middle ground, but I'm not sure there is one. She now epitomizes the face of cancer, which forces me to face it very consciously. There is no denying the reality, not that there ever was but having a full head of hair sort of masked it a little. Now that that is gone, her cancer is completely exposed for everyone and anyone to see. I'm very much aware of the ensuing stares and comments and I feel completely at peace. In fact, yesterday we went to the grocery store and I noticed a woman who nearly snapped her neck craning to continue her gawking assessment of Aria. It was so very innocent and I am certain full of wonder, curiosity, compassion and fear. Of the dozens of children we saw in the store, Aria was the only bald one so she is quite a spectacle. It is my job to be as open as possible. It is my job to invite people into our world whenever possible. It is my job to help people understand and lessen their fears a little. It is my job to empower Aria particularly now that she is so visibly different. We are equal to this task.

Aria is feeling really well. I'm actually stunned at how well she's feeling. Our Thursday clinic visit last week was exceptional. Her counts bumped back up to 464, which is wonderful and certainly way better than 60! Dr. Trobaugh told me that she'd probably feel crummy for a few days and then start to rebound. I'm seeing that now. She is gaining more strength and energy. Her spirits are soaring. She's full of laughter and joy. We are having a lot of fun right now. Dr. Trobaugh mentioned, "Julia, at this stage of this phase of treatment (delayed intensification) I have to say that Aria is doing exceptionally well. Most people say that the second half of this treatment is comparable to the first. So, if that's any indication, Aria ought to do well." You can imagine my relief. We have this entire week off and go back to clinic on Tuesday June 17th where we're actually scheduled for a hospital sleep-over. She will receive 3 new chemo medications and will have to be highly monitored. It is normally around a 36 hour stay. She'll also have a spinal tap that day. I'll mention that she's been taking a power antibiotic these last 10 days to stave off the horrible mouth sores that were threatening. So far, nothing has happened and we are so thrilled. She'll continue with that drug until Friday, but she doesn't have to take any chemo this week. It is so lovely for her!

I'm keeping her pretty secluded because her counts can fluctuate so dramatically. The weather has been so strange and that, too, is quite threatening. This morning (Tuesday June 10, 2008) it snowed! You read it right! It was 34 degrees and snowing! It could be 80 degrees tomorrow for all I know. That's how crazy the weather can be here this time of year. So, I'm keeping her warm and dry and away from people as much as I possibly can. This is our last week of school and I don't need to tell you how thrilled we all are! I'm looking forward to some quiet lazy kids enjoying the kids and the wonders of this farm! I'll add that in the second picture, you can see her port nice and clear. She's very proud of it and her scar!
My love to you! ~j