It is Friday March 7, 2008, early evening. I doubt I will get very far with this email but I thought while I had a little momentum I would gather some thoughts for you.
Let me begin with the most important news of the day and that is that Aria is GREAT! She is just terrific! She is active and talkative. Her imagination is once again overflowing with the gorgeous view of a child. She has been wearing her ballerina tutu that she received from her cousin and has been dancing and twirling. It brings me such unfathomable happiness to have her back in this way. I am so relieved to witness her healing knowing full well that she is still very sick and will face some intense battles later on. For now, however, she is guiding me through these present moments and I am savoring every little morsel. I won’t kid you though. She is so fabulous that she is also, once again, annoying, persistent, pouty, whiney, silly, and stubborn to name just of few of her other attributes. Aria is a strong-willed 4-year-old, full of steam, which is adorable and obnoxious at the same time. I would love to say that since her illness these annoying little 4 year old attributes have lightened somehow, have become less important and less irritating. Alas, being only in the infancy stages of enlightenment, her 4-year-old quirks can drive me crazy; illness or no illness! I do take greater notice however and I find myself celebrating her more even when she is in the throws of being 4. So in truth, in some ways, it is lighter and more endearing and I’m highly aware that she is so much better today than even a week ago.
Clinic today was not at all what we had been planning all week nor what we had hoped would happen. That is, we had hoped and planned on all being at clinic together as a family. As life would happen, I came down with a bug early in the week. It started with an “uh-oh” scratchy throat that turned into a sinus stuffy-thing but lasted only a day or so. I have a little remnant of it now but nothing particularly bothersome. I passed it along to Rianna who for the last few days has had only a mild runny nose. But I also passed some variation to Reo who surprisingly had been super all week until yesterday afternoon when he completely melted down. Suddenly, out of nowhere, he was fussy and whining and crying for his dad and complaining that his knees hurt and his tummy hurt. He was just a puddle at one point, which was really concerning. He was so not himself and of course I found myself traveling down, “what kind of horrible life threatening illness is this going to be?” I didn’t allow that thought to form into anything more than a flickering notion, however. I just cuddled with him and monitored him. He felt warm but not really feverish. When Doc finally came home, he helped Reo into his pajamas and put him to bed around 6 o’clock where he slept for a good 2 hours. We heard him stir and both checked on him. He simply wanted to cuddle but then suddenly said he needed to throw-up! Oh Boy! Here we go. Sure enough, he was sick. We checked his temperature and he had only a slight fever (99.6). He felt better but needed some reassurance so we cuddled for a little while and then he slept the rest of the night. Doc and I talked about Plan B for clinic the next day since Aria’s counts have been so high, her risk isn’t all that great but there are plenty of other children whose counts aren’t nearly as good who are at great risk! We decided to take the ‘wait and see’ approach.
This morning around 5am Doc heard a stirring that he thought was Aria. He shot out of bed like a dart, only to find Reo crawling on his hands and knees down the hallway, whimpering, “Dada, I feel yucky!” Doc brought him into our bed for a little while but the dogs started their morning howling serenade so he and Reo decided to head downstairs from some breakfast. Reo promptly threw up once again and when I came downstairs an hour later, he was curled on the couch covered in a blanket. He was not going anywhere, which meant neither were Rianna or I. Bummer!! It was an odd feeling to know that I wasn’t going to be there at clinic. I know that my role at clinic is nothing more than to watch Reo and Rianna and comfort Aria once in a while, but I don’t play an active role in her treatment. That is Doc’s job right now. He accompanies her for everything, while I stay in the background. Still, I’m there. I have access to her doctor, the nurses and support staff. I get my weekly reassurance injection when I’m there so being home left me feeling anxious, as if I was missing out. Although I wasn’t doing this, I felt like if I had a handkerchief in my hands I’d be sitting around wringing it ceaselessly. It was a very strange feeling to dread being at clinic but wanting to be there and not being able to do so.
Doc and Aria headed to clinic by themselves around 10am. I didn’t have a handkerchief in my hand but a telephone instead. Fortunately, both Reo and Rianna had nice naps so I was able to spend my time talking to ‘tech support’ people about our email, which is acting up again. Grrrrrrr! Still, the folks I spoke with were delightful and lovely and I was so grateful that I could have such concentrated time to focus on problem solving. Concentrated time is such a gift!
Doc and Aria arrived home around 2 pm. Aria told me that she was “brave during the poke part”. She also reminded me that her blood was nice and red. So far so good! Her labs were fantastic! Her cholesterol is back to normal so she no longer has to take that medication. Her hematocrit showed a nice little jump to 26, which is still well below normal but an improvement, which we have seen results in her overall energy level and her coloring. White blood cell and red blood cell counts are normal. Her spinal tap procedure, which is the last one she’ll have to have for this phase of treatment, went off without a hitch. Dr. Trobaugh continues to be very pleased with her progress and didn’t have any real concerns about the little bug floating through our family right now. It was bound to happen and we are grateful that it happened when Aria’s resilience is so high. We feel very very lucky indeed!
Doc said that he and Aria played some games and she even made some art projects using markers and foam stickers. This is only the second time she has actually played in the playroom. It was nice.
Doc and I are exactly like most male/female couples out there I suspect. I’m the wordy, “I said” and then “she said” and then “I said” and then “he said” type. I’m all about details; the little itty-bitty details. Doc is more the big picture kinda guy. I know this and I knew and accepted that I would have to do without my full reassurance injection this week. At some point during the afternoon I asked Doc,
“So honey, were you able to have a conversation with Dr. Trobaugh? Is she still pleased with Aria’s progress?”
“Oh yeah. Of course.” He replied.
I asked, “Well, what did she have to say?” details, I’m looking for those “she said……” details.
“Oh, (big sigh) you know..she thinks Aria is doing great. No real concerns. We’re just moving right along.”
This SO didn’t do it for me! But God love Doc. He knows me so well. His sigh told me everything. He was not up to the task of telling me the “nitty-gritty, there are this many ceiling tiles, the walls are this color, Dr. Trobaugh’s sweater was this texture and she wore her hair this way” details of the day. Clinic days are exhausting no matter what the circumstance. Not to mention, that Doc is not I. He doesn’t process the world as I do and therefore it isn’t his nature to exercise the “girlie skills” I so crave. Whatever anxiety I needed reassured for the day, he was able in his way to subdue.
Doc was so relieved when he got home. Even though everything is great and all that we can hope for, it is still so incredibly stressful to be in clinic. His neck was stiff and his back was tense. He spent the rest of the afternoon wandering the property assessing spring work. Fortunately, we don’t have to go to clinic next Friday! We actually have our first Friday off in 2 months! HEAVEN!! We are halfway done with our Consolidation phase of treatment and feel so fortunate that everything is going well.
We are planning to make a quick trip to Seattle next Saturday so Doc can receive a very special and prestigious award. He is the recipient of the Del Cole Award from the Washington State Psychiatric Association. It is awarded to an outstanding physician serving the realm of community mental health. I am so incredibly proud of him! I insisted that if Aria was well enough that we all make it to Seattle to watch him receive this great honor. It looks like we are going to be able to make that happen and I am so thrilled! A little change of scenery ought to be really really fun. It is going to be a whirlwind trip. We’ll head out on Saturday morning for the award ceremony in the early afternoon and then come home Sunday sometime. My 3 very dear Goddess friends will already be at the farm on Sunday waiting for us. They are spending a week to celebrate 2008 Goddess-Fest. I have no idea what kind of nonsense and fun we’ll create but I can guarantee you that after a week in their energy, I’ll find my stores of energy and creativity re-stocked to over-flowing. The magic of friendship is beyond my words. I’m in charge of creating the ‘theme’ so to speak for Goddess-Fest so I imagine that this year we’ll be focusing on “healing.” It is so obvious yet so profound.
We are all hurting, aching, longing, ailing, fragile, damaged people. This is not what defines us. It may be what consumes us for periods of time, but it does not reflect our true selves. When my Goddesses arrive, we examine these things deeply through all matter of crazy ways. We color. We craft. We sew. We dance and sing. We talk until ungodly hours. We cook. We laugh and we cry. We hug and kiss. We play. We pray. We build fires. We weave ourselves to one another creating a mesh that protects and covers us. It is such an amazing weave that it extends beyond us and is able to catch others when they stumble into our presence. We all have this and what a brilliant thing to possess.
They, like you, have stumbled into my presence adding to the woven mesh I call myself. I am stronger, more colorful, and better able to catch and hold others because of you. This is a beautiful and tender connection that never ceases to amaze and entangle me with wonderment.
~j
Friday, June 26, 2009
Being Alone
I’ve included at the end of this email 2 responses from my Dad, Gene Hayes. My parents are by far my biggest and devoted fans. They are also hopelessly biased in their view of me, which makes me giggle every time I read a response from my dad. Nevertheless, I wanted to share with you some of the kindness I’ve received from them every day of my life. I am infinitely blessed.
By the way, my dad still calls me Julie, the name of my youth! It is incredibly endearing to me.
Subject: Being Alone
Date: March 5, 2008
I received a couple of beautiful emails yesterday remarking that I seem alone along with encouraging reminders to the contrary. I fear that my introspection and intense self-analysis has led some people to worry that I feel alone, whether that is physical or spiritual, I do not know. So, I thought I would take this moment to consider that. ‘Being alone.’
Many have reminded me that I am most definitely not alone because the support I have is immense. I’m very much aware of this. My initial reaction is to say, “Oh, heavens! I’m not alone! Just look at all the amazing people with me! My husband is right there with me every single step of the way as are my many friends and family and their friends and family and so on and so on. I am most definitely not alone.” This is very true and I want to make sure each and every one of you knows and understands that the emails you send, the cyber-hugs and kisses, the cards, the gifts, phone calls, visits, prayers, and so forth are powerful reminders just how involved you all are. I feel you with me every single day.
I wonder if the “alone-ness” you may be sensing is nothing more than the time I spend with my thoughts, which flood my being constantly. Often what I have portrayed here are those thoughts that fill me with doubt and insecurity and I have not done a very good job detailing the many thoughts that bring me light and cheer. There are so many times throughout my day when I think about the mini-miracles, like friends, that happen that bring be incredible joy. This morning, I walked outside noticing the patchy snow that covers our land and the smell of Spring in the air. I glanced at my rose garden where my dogs like to sun themselves. Despite the digging and the weight of large dogs, I noticed 2 snowdrops beginning to flower in rebellion! What a lovely little miracle and reminder of life’s magnificence! This kind of thing happens all day long!
Doc asked me about these emails and specifically whether I felt alone particularly in my spirit. I sensed that he was worried. I asked him if the thought of me feeling alone as interpreted by some of you hurt his feelings somehow. He reassured that his concern was nothing more than making certain I know I am not alone. I tried to reassure him that I am exceedingly aware of the support of those who love and care for us deeply. Spiritually, I don’t feel alone either and if anything, Aria’s illness and my introspection has forced me to examine just how spiritually filled and fulfilled I am. Still, I wonder if what I write, which is horribly skewed with respect to presenting only my opinion, has led some of you to be concerned. I realize that Doc’s voice is not being heard here and his presentation is not being well represented, which may give the impression that I am handling this on my own. Doc is very much with me. Please be assured of that! But, you see, I cannot write for Doc. I cannot write his thoughts even those things we share. There is a need to protect his privacy in this regard and should he decide to share his thoughts, he will. Doc’s unconditional commitment to our family is one of his finest virtues because it permeates every aspect of his life. I don’t worry about me because of his strength and his fortitude. Furthermore, I cannot emphasize the generosity of people, even complete strangers that is beyond my expression. There are so many days when I will receive some kindness that makes me feel as if I’m walking upon petals that someone has thrown before my feet, gently paving the way, adding color to the day. The force of love in this regard has been very powerful and something I am only beginning to understand.
When I think about my personal space and life, Doc and I are very much a singular unit and we function as such. When Doc and I are off kilter for whatever reason, I am not well and neither is he. It is as if a physical aspect of myself is ill when he and I are not on the same page. I cannot live in that state for any length of time, so Doc and I are constantly in conversation about what we think and where we are on this journey together. Doc is my grounding force. He is my warm blanket when I’m shivering. He is my calming voice when I’m worried. He is my reason to constantly strive for kindness and joy. Doc is someone who makes me feel that I am the most beautiful thing ever created. He is a gift to me and I to him.
I have no doubt whatsoever that there are so many people keeping us in the light of goodness and positive thinking. I cannot even fathom how people have Aria in their daily thoughts. It is extremely humbling for me to consider and I am so, so, so grateful. It is important to say, I think, that despite being surrounded by all this beautiful energy, ‘being alone’ is a comfortable place for me. There are times when I definitely feel alone and I’m still very sound. We all know there is a distinct difference between feeling alone and feeling lonely. I wrote to my cousin Bryan that although I was not born alone (I’m a twin), I am certain that I will journey death alone, so being in my own company has always been something I wanted to trust and enjoy. In my arrogance, I actually enjoy my company a great deal. Finding ‘alone time’ is something I constantly seek. I find it when I garden or when I sew or when I wander through the pasture or walk our labrynth. My thoughts are so noisy that I don’t feel isolated or abandoned in any way. On the contrary, I am accompanied by all kinds of creative people inspiring me, spiritual people guiding me as well as all of my tender and dear friends and family comforting me. In my ‘alone-ness’ I am anything but lonely!
Heavens! It is a fine thing to spend time alone and an even finer thing knowing
that the Spirit that connects us all is what keeps me focused on what the present
has to show me as I journey in solitude.
~j
My Dear Ones,
Those of you who know me well may wonder why I make no comment on the attached email from Julie, today. Suffice to say, as with most of Julie’s messages, “It speaks for itself.” It has caused me to think, though, and I need time to pull my thoughts together. Be grateful and be challenged!!
Peace !
Gene Hayes
These messages, like Julie’s previous message on “Being Alone” seem to me to add up to a most effective reminder of what Jesus’ teachings about LOVE truly mean. She reflects a level of trust and respect for the “personhood” of others – the wishing well for them – which Jesus insisted was the basis for the greatest Commandment(s) – Love of God and Love of neighbor as one’s self. Indeed, I don’t think anyone can truly love another without loving one’s self. It is the latter part of the Commandment that so many seem to have difficulty with. The willingness to take time to be alone with who you are, why you are as you find yourself, your simple acceptance of what you find you truly are (instead of the image of what you think you are or hope you are), and your decision to commit to changing the things you find about yourself that you don’t like is crucial, here. Julie’s thoughts help to focus us on this process, I think. Finally, the realization that we are never “alone,” that God and others are with us, rooting for us and encouraging us, makes the self-analysis part of being human a bit easier to participate in.
Peace !
Gene Hayes
By the way, my dad still calls me Julie, the name of my youth! It is incredibly endearing to me.
Subject: Being Alone
Date: March 5, 2008
I received a couple of beautiful emails yesterday remarking that I seem alone along with encouraging reminders to the contrary. I fear that my introspection and intense self-analysis has led some people to worry that I feel alone, whether that is physical or spiritual, I do not know. So, I thought I would take this moment to consider that. ‘Being alone.’
Many have reminded me that I am most definitely not alone because the support I have is immense. I’m very much aware of this. My initial reaction is to say, “Oh, heavens! I’m not alone! Just look at all the amazing people with me! My husband is right there with me every single step of the way as are my many friends and family and their friends and family and so on and so on. I am most definitely not alone.” This is very true and I want to make sure each and every one of you knows and understands that the emails you send, the cyber-hugs and kisses, the cards, the gifts, phone calls, visits, prayers, and so forth are powerful reminders just how involved you all are. I feel you with me every single day.
I wonder if the “alone-ness” you may be sensing is nothing more than the time I spend with my thoughts, which flood my being constantly. Often what I have portrayed here are those thoughts that fill me with doubt and insecurity and I have not done a very good job detailing the many thoughts that bring me light and cheer. There are so many times throughout my day when I think about the mini-miracles, like friends, that happen that bring be incredible joy. This morning, I walked outside noticing the patchy snow that covers our land and the smell of Spring in the air. I glanced at my rose garden where my dogs like to sun themselves. Despite the digging and the weight of large dogs, I noticed 2 snowdrops beginning to flower in rebellion! What a lovely little miracle and reminder of life’s magnificence! This kind of thing happens all day long!
Doc asked me about these emails and specifically whether I felt alone particularly in my spirit. I sensed that he was worried. I asked him if the thought of me feeling alone as interpreted by some of you hurt his feelings somehow. He reassured that his concern was nothing more than making certain I know I am not alone. I tried to reassure him that I am exceedingly aware of the support of those who love and care for us deeply. Spiritually, I don’t feel alone either and if anything, Aria’s illness and my introspection has forced me to examine just how spiritually filled and fulfilled I am. Still, I wonder if what I write, which is horribly skewed with respect to presenting only my opinion, has led some of you to be concerned. I realize that Doc’s voice is not being heard here and his presentation is not being well represented, which may give the impression that I am handling this on my own. Doc is very much with me. Please be assured of that! But, you see, I cannot write for Doc. I cannot write his thoughts even those things we share. There is a need to protect his privacy in this regard and should he decide to share his thoughts, he will. Doc’s unconditional commitment to our family is one of his finest virtues because it permeates every aspect of his life. I don’t worry about me because of his strength and his fortitude. Furthermore, I cannot emphasize the generosity of people, even complete strangers that is beyond my expression. There are so many days when I will receive some kindness that makes me feel as if I’m walking upon petals that someone has thrown before my feet, gently paving the way, adding color to the day. The force of love in this regard has been very powerful and something I am only beginning to understand.
When I think about my personal space and life, Doc and I are very much a singular unit and we function as such. When Doc and I are off kilter for whatever reason, I am not well and neither is he. It is as if a physical aspect of myself is ill when he and I are not on the same page. I cannot live in that state for any length of time, so Doc and I are constantly in conversation about what we think and where we are on this journey together. Doc is my grounding force. He is my warm blanket when I’m shivering. He is my calming voice when I’m worried. He is my reason to constantly strive for kindness and joy. Doc is someone who makes me feel that I am the most beautiful thing ever created. He is a gift to me and I to him.
I have no doubt whatsoever that there are so many people keeping us in the light of goodness and positive thinking. I cannot even fathom how people have Aria in their daily thoughts. It is extremely humbling for me to consider and I am so, so, so grateful. It is important to say, I think, that despite being surrounded by all this beautiful energy, ‘being alone’ is a comfortable place for me. There are times when I definitely feel alone and I’m still very sound. We all know there is a distinct difference between feeling alone and feeling lonely. I wrote to my cousin Bryan that although I was not born alone (I’m a twin), I am certain that I will journey death alone, so being in my own company has always been something I wanted to trust and enjoy. In my arrogance, I actually enjoy my company a great deal. Finding ‘alone time’ is something I constantly seek. I find it when I garden or when I sew or when I wander through the pasture or walk our labrynth. My thoughts are so noisy that I don’t feel isolated or abandoned in any way. On the contrary, I am accompanied by all kinds of creative people inspiring me, spiritual people guiding me as well as all of my tender and dear friends and family comforting me. In my ‘alone-ness’ I am anything but lonely!
Heavens! It is a fine thing to spend time alone and an even finer thing knowing
that the Spirit that connects us all is what keeps me focused on what the present
has to show me as I journey in solitude.
~j
My Dear Ones,
Those of you who know me well may wonder why I make no comment on the attached email from Julie, today. Suffice to say, as with most of Julie’s messages, “It speaks for itself.” It has caused me to think, though, and I need time to pull my thoughts together. Be grateful and be challenged!!
Peace !
Gene Hayes
These messages, like Julie’s previous message on “Being Alone” seem to me to add up to a most effective reminder of what Jesus’ teachings about LOVE truly mean. She reflects a level of trust and respect for the “personhood” of others – the wishing well for them – which Jesus insisted was the basis for the greatest Commandment(s) – Love of God and Love of neighbor as one’s self. Indeed, I don’t think anyone can truly love another without loving one’s self. It is the latter part of the Commandment that so many seem to have difficulty with. The willingness to take time to be alone with who you are, why you are as you find yourself, your simple acceptance of what you find you truly are (instead of the image of what you think you are or hope you are), and your decision to commit to changing the things you find about yourself that you don’t like is crucial, here. Julie’s thoughts help to focus us on this process, I think. Finally, the realization that we are never “alone,” that God and others are with us, rooting for us and encouraging us, makes the self-analysis part of being human a bit easier to participate in.
Peace !
Gene Hayes
Aria's Consolidation Phase
I think very early on I realized that Aria’s leukemia would be a challenge on many levels, not the least of which was battling the cancer itself. I realize now that I was thrown into a hyper-drive of a self-discovery of sorts. I wasn’t going to be able to deny my feelings no matter how much I may have wanted to. This was intimidating because we aren’t taught well how to handle the dark side of ourselves. As a matter of fact we hear over and over about the importance of staying positive and as much as I believe that to be true, I was discovering that it is also a rather ineffective form of denial. I learned that the more honest I was about how I was feeling, the more hopeful I became, the more trusting and open too. This email is in some ways the beginning of that self-discovery.
Subject: Aria’s consolidation part 2
Date: March 2, 2008
As you know, Aria is in Phase 2 of her treatment plan. For the sake of review, there are 4 major treatment phases; Induction, Consolidation, Interim Maintenance, Delayed Intensification. These phases vary in terms of length depending upon a child’s particular risk factors and how well they are doing during a particular phase. Aria is considered standard risk so her treatment will follow this time line; Consolidation is 4 weeks, Interim Maintenance and Delayed Intensification are 8 weeks each. After the completion of these phases Aria will enter the longest treatment phase called Maintenance, which is ~12 months long. Reaching maintenance is by far what people are striving for and every time I meet a parent with a child with ALL it is what they talk about, “We finally made it to maintenance” or “We’re almost at maintenance” and so forth. Maintenance is still a host of medications most of which are given at home but monthly clinic visits versus weekly and procedures only once every 3 months instead of weekly in these early phases of treatment. People describe feeling more “normal” and I can see that already happening to us now.
Aria is back! She is feeling great and this past week has been wonderful watching her emergence from the steroid’s darkness. She has been playful and talkative. She is still weak but getting stronger each day. She wants more independence with all kinds of things she used to do and is laying claim to those things once again. Her spirit is bright and radiant. I’ve often imagined her like the rippling sparkle of the sun as it dances on water. You can see twinkling stars of the sun’s reflection jump with the movements of the water. This is exactly like Aria’s spirit. She dances. She twinkles. She glistens and glows. She is magnificent.
Aria’s clinic visit this past Friday February 29, 2008 was awesome! The clinic itself was quiet almost too quiet. There was an office just off the main waiting area that was dark since the woman occupying that space was off for the day. It was rather unsettling, sort of like being in the office on the weekend when no one is around. There were only a few families in the waiting area and for a long time, it felt like we had the entire place to ourselves. It was wonderful. There were 2 families there that we had met before. Both of the children being treated have ALL and both were nearing their maintenance phase of treatment. The obvious relief on their mothers’ faces and in what the mothers had to say was powerful. I kept thinking that the phase we’re in now and the one that follows represent the calm before the storm. Delayed Intensification is by far the worst phase of treatment and getting to the end of that is a major milestone. Both of the mothers I met looked worn down and a little rough around the edges, however there was calmness in their voices as well as gratitude and tremendous relief. Their children looked fantastic and were incredibly playful. It was wonderful energy to be around.
I noticed that I was full of very mixed emotions. On one hand, I was feeling very confident and comfortable. I was thrilled that Aria was feeling better and know that these next few weeks will see her feeling the best she has felt in a long, long time. I was filled with hope. “She’s doing so great! Her numbers are fantastic!” I kept hearing myself say. Then I would look at her cuddled in Doc’s arms, quiet, reserved, back in her cocoon and suddenly it was as if a ton of bricks fell upon my psyche delivering a whopping dose of reality. Aria is in a clearing that is light, airy and sunny but a dense dark forest awaits her. My mind and my heart spent the day savoring the meadow-like clearing and at the same time my mind and my heart would race to the forest’s edge and stare. It was incredible to observe my body when I was in those moments. I noticed that I was hunched a little as if I was peering into what I couldn’t see clearly, stretching my body in ways that would enable me to get a better look. It was dark and unclear. I would run back to the meadow, to the present and try to enjoy myself but the forest in the background was daunting, oppressive and ever present. I wasn’t able to fully enjoy the meadow and all of its wonders. I did finally stop racing back and forth but I never stopped looking over my shoulder at what is waiting for us. I had to finally tell myself, “We are not out of the woods but we are here in the light to gather strength.” I felt comforted by that.
I am completely certain that some of this energy was due to a conversation I had with another mother whose son is very sick. They have been dealing with his cancer for several years after an original prognosis that was even better than Aria’s. Now they find themselves being encouraged to “let him go.” “How does one do that?” I asked her. She shrugged and told me that they aren’t ready yet and that there is still an experimental chemotherapy that they are trying now. I understand her need to try everything possible to save her child. I know her doctors are being gentle with her trying to nudge her to face a horrifically inevitable outcome. But I also recognize her need to know that they did everything possible to save him. It was a powerful reminder that once again there are no guarantees, no promises. I know this is true for us all. Life can be taken from us at any moment for any reason but there is something very different when you face death as a known threat. As an adult I can make a decision to stop treatment when I’ve had enough but as the mother of a child going through treatment, I cannot imagine for the life of me stopping until every possible avenue for cure has been explored. I suspect this is the energy I was sensing from this woman. My heart ached so deeply for her and for me. The threat of death is there for us all but for this woman it is solidifying. For me, it remains a vaporous presence that for now seems a little less oppressive but is nevertheless still there.
Aria’s lab work was wonderful. Her blood was a nice red color! Her hematocrit remains steady; still super anemic but not in need of a blood transfusion. Her white blood cell counts are normal as are her platelets. Her ANC level was over 7000, which is the highest it has ever been, which tells us that she has all kinds of infection fighting power. Her cholesterol level is WAY down too, not so much that we can stop her medication but we are going from twice a day to once a day. Small smart healthy steps toward healing! Her overall counts (ANC) are expected to start dropping because of the chemo medication she takes at home. It is normal and should not reach the critical immuno-suppressed stage. She should stay in a healthy range for the next 10 weeks until we hit Delayed Intensification and everything will change. Her spinal tap procedure went off without a hitch. She has one more spinal tap next Friday and that will complete her procedures for this phase of treatment.
As I was in the recovery room with Aria and she was eating carrots and ranch as well as ‘red chips’ (nacho cheese flavored doritos) I was talking with Dr. Trobaugh about her numbers and her progress and so forth. My mind and heart were racing from the meadow to the woods again and I was desperate for some reassurance. I think I asked her at least twice if not more, “So, you’re happy with how well Aria is doing right?” I realize now as I write this, that the voice of my very tender and fragile psyche was making feeble attempts to say simultaneously, “Can’t you just tell me that everything is going to be ok?! Can’t you just say that this nightmare of sorts is going to end really-really-really-really soon? Can’t you? HUH? Can’t you please just tell me that?” It was a pleading voice and I as I reflect on that moment in the recovery room at Aria’s bedside, it is no accident that I was on my knees asking Dr. Trobaugh these questions with my real voice and with the silent one in my mind. Dr. Trobaugh is amazing. I have to remember to tell her that when she looks in my eyes and tells me with a smile, “ I am so happy with how well Aria is doing. She is doing GREAT!” it is so reassuring to me and fills me with just the amount of strength I need to face another week. Her honesty and her ability to sense me and know my needs are tremendous. She is one of those doctors that can truly relate to people. She can take this very complicated matter and make it make sense. It is a gift and I am so grateful for her.
I asked her about the psychology of this phase (consolidation) and interim maintenance. I told her that I felt a lot lighter and more hopeful but I was concerned that perhaps this was a honeymoon phase of sorts. I didn’t want to get my hopes up too high but at the same time I needed to know that it was still ok to feel hopeful. I was a little confused still needing more reassurance I suppose. I was thinking if I was feeling hopeful was I denying the potentially grave reality of the situation? I know it is important to remain positive and hopeful and not dwell on the negative and darkness but I kept thinking about that other mother and her son’s 90+% chance of survival from his cancer. I know that his cancer is very different than the one Aria is dealing with but I wanted Dr. Trobaugh to be able to look into some crystal ball and tell me that Aria’s future was secure. She was very good to remind me to be in this moment. “For now, Aria is doing great! You have every reason to relax a little and enjoy her feeling better. She just couldn’t be doing any better than she is right now!” I was comforted by her words although not fully settled. I suspect I’ll never be fully settled. I imagine my emotional heart and my practical mind will always be at odds given certain circumstances. This is life. For now, I am trying to keep most of me in the light of positive thinking while still keeping a steady foot in the shadows of reality.
It has been a glorious week and yet I have struggled a great deal. I’ve spent days peeling layers of myself, dissecting what’s been getting under my skin and trying to find the source of my fluctuating mood. I’ve been very introspective trying to get myself sorted, which makes me look at Aria and her need to go into her cocoon. We are very much the same in this regard. I’ve come to the conclusion that I was emotionally spent this past week. I had no reserves and no emotional stamina to exercise the patience needed to raise 3 small children, run a zoo-like farm, be a humble happy mate and friend as well as be a source of creative energy for my own spirit. It isn’t that I’m asking too much of myself, nor am I trying to be any kind of wonder- woman. I simply recognize that when I have a short fuse and I bark at my children instead of modeling respectful tones and language I know my spirit is soured and needs some tender attention. I spent the week grumbling and growling over the least little things because those little things seemed overwhelming, growing exponentially larger as the days went on. Little things like Rianna trying to climb on chairs again and again 100 times throughout the day just wore me down. Aria pouting instead of using her words to express herself made me crazy. Reo digging his heels in over not wanting to try some new kind of food was infuriating. The fact that I just wanted to vacuum a room without someone tripping over the cord or crying over some such thing, just made me want to rip my hair out! None of these things in isolation is difficult, nor are they very challenging when I am emotionally charged, but when I am not, these things become very hard and the days have a seamlessness that is exhausting in their tediousness. None of these things are anything but normal parenting/ mothering challenges and they are only slightly exacerbated by Aria’s illness in my opinion. This kind of emotional drainage happened more than once before she got sick and I’m certain will happen many more times through the course of her treatment. It is just what makes life, life, but that doesn’t make it any easier when you’re in the middle of it, dealing with it.
It is not a sustainable state of mind for me and I am committed to figuring it out as quickly as possible so that I can return to my preferred joyful state of being. Hence, the need for retreating to the cavern of my mind for some much needed quiet and care. It is very clear to me that I benefit greatly from this kind of reflection and self-analysis. Some may view it as being selfish but I view it as an exercise that better enables me to be fully and sincerely present to those who need me most. I often think about the beautiful teaching of Jesus when he said, “Love thy neighbor as thyself.” For many, many years I heard that lesson ring in my head but I realized about 10 years ago that the last part of the lesson “as thyself” was something that tended to fade into the background. What I remember learning from my Christian teachings was to somehow forget self and focus on others and yet, this is in direct contradiction to what I believe Jesus was trying to convey. It wasn’t until I found the teachings of Buddhist monks that I learned how to better apply that lesson. I was learning to consider myself first and tend to my needs with gentle respect and kindness. I learned to embrace myself with all of my wonders and misgivings. I learned that to know myself in truth made me better able to know others especially my children. This is something I constantly think about as I develop new relationships and have new demands and challenges to face.
One of the many things I’m learning through the experience of Aria’s leukemia is to understand myself with greater clarity and depth; to face those emotions of mine that are unkind when they are aroused. I think the better I understand my own triggers and when I’m maxed out emotionally, I will be better equipped to face life when it gets hard and I find myself tempted to be angry with others asking questions that have no answers. Questions like “Why me?” only begs another question in my opinion which is “Why not me?” Life is both easy and hard, good and bad, fluid and turbulent. It is the perfect balance of positive and negative. I am convinced that when life seems out of balance it is I that is on ‘tilt’ and only I can right myself. I suppose if I were really together spiritually, I could say that I pray with devotion or I meditate with serenity and calm. I’m hopelessly inept at both. I don’t pray as I was taught as a child and whenever I’ve tried to meditate in the traditional sense I either fall fast asleep or my mind wanders aimlessly. Instead, I find quiet moments in everyday life to think and consider all the things that nag at me as well as those things I find praiseworthy. It is a constant practice and right now a cherished method for mental release has been this writing.
I will end this lovely bit of meditative imagery with this; Rianna has just walked into the library with Doc’s underwear on her head. Reo is running around wearing a magician’s cape trying to save his kingdom from evil demons and Aria is coming downstairs wearing only her underwear and growling like a scary lion! Life is so good! Life is meant to be thoroughly enjoyed and we are meant to be truly, sincerely, hopelessly joyful. I am convinced of that and I fully devoted to its practice.
~j
Subject: Aria’s consolidation part 2
Date: March 2, 2008
As you know, Aria is in Phase 2 of her treatment plan. For the sake of review, there are 4 major treatment phases; Induction, Consolidation, Interim Maintenance, Delayed Intensification. These phases vary in terms of length depending upon a child’s particular risk factors and how well they are doing during a particular phase. Aria is considered standard risk so her treatment will follow this time line; Consolidation is 4 weeks, Interim Maintenance and Delayed Intensification are 8 weeks each. After the completion of these phases Aria will enter the longest treatment phase called Maintenance, which is ~12 months long. Reaching maintenance is by far what people are striving for and every time I meet a parent with a child with ALL it is what they talk about, “We finally made it to maintenance” or “We’re almost at maintenance” and so forth. Maintenance is still a host of medications most of which are given at home but monthly clinic visits versus weekly and procedures only once every 3 months instead of weekly in these early phases of treatment. People describe feeling more “normal” and I can see that already happening to us now.
Aria is back! She is feeling great and this past week has been wonderful watching her emergence from the steroid’s darkness. She has been playful and talkative. She is still weak but getting stronger each day. She wants more independence with all kinds of things she used to do and is laying claim to those things once again. Her spirit is bright and radiant. I’ve often imagined her like the rippling sparkle of the sun as it dances on water. You can see twinkling stars of the sun’s reflection jump with the movements of the water. This is exactly like Aria’s spirit. She dances. She twinkles. She glistens and glows. She is magnificent.
Aria’s clinic visit this past Friday February 29, 2008 was awesome! The clinic itself was quiet almost too quiet. There was an office just off the main waiting area that was dark since the woman occupying that space was off for the day. It was rather unsettling, sort of like being in the office on the weekend when no one is around. There were only a few families in the waiting area and for a long time, it felt like we had the entire place to ourselves. It was wonderful. There were 2 families there that we had met before. Both of the children being treated have ALL and both were nearing their maintenance phase of treatment. The obvious relief on their mothers’ faces and in what the mothers had to say was powerful. I kept thinking that the phase we’re in now and the one that follows represent the calm before the storm. Delayed Intensification is by far the worst phase of treatment and getting to the end of that is a major milestone. Both of the mothers I met looked worn down and a little rough around the edges, however there was calmness in their voices as well as gratitude and tremendous relief. Their children looked fantastic and were incredibly playful. It was wonderful energy to be around.
I noticed that I was full of very mixed emotions. On one hand, I was feeling very confident and comfortable. I was thrilled that Aria was feeling better and know that these next few weeks will see her feeling the best she has felt in a long, long time. I was filled with hope. “She’s doing so great! Her numbers are fantastic!” I kept hearing myself say. Then I would look at her cuddled in Doc’s arms, quiet, reserved, back in her cocoon and suddenly it was as if a ton of bricks fell upon my psyche delivering a whopping dose of reality. Aria is in a clearing that is light, airy and sunny but a dense dark forest awaits her. My mind and my heart spent the day savoring the meadow-like clearing and at the same time my mind and my heart would race to the forest’s edge and stare. It was incredible to observe my body when I was in those moments. I noticed that I was hunched a little as if I was peering into what I couldn’t see clearly, stretching my body in ways that would enable me to get a better look. It was dark and unclear. I would run back to the meadow, to the present and try to enjoy myself but the forest in the background was daunting, oppressive and ever present. I wasn’t able to fully enjoy the meadow and all of its wonders. I did finally stop racing back and forth but I never stopped looking over my shoulder at what is waiting for us. I had to finally tell myself, “We are not out of the woods but we are here in the light to gather strength.” I felt comforted by that.
I am completely certain that some of this energy was due to a conversation I had with another mother whose son is very sick. They have been dealing with his cancer for several years after an original prognosis that was even better than Aria’s. Now they find themselves being encouraged to “let him go.” “How does one do that?” I asked her. She shrugged and told me that they aren’t ready yet and that there is still an experimental chemotherapy that they are trying now. I understand her need to try everything possible to save her child. I know her doctors are being gentle with her trying to nudge her to face a horrifically inevitable outcome. But I also recognize her need to know that they did everything possible to save him. It was a powerful reminder that once again there are no guarantees, no promises. I know this is true for us all. Life can be taken from us at any moment for any reason but there is something very different when you face death as a known threat. As an adult I can make a decision to stop treatment when I’ve had enough but as the mother of a child going through treatment, I cannot imagine for the life of me stopping until every possible avenue for cure has been explored. I suspect this is the energy I was sensing from this woman. My heart ached so deeply for her and for me. The threat of death is there for us all but for this woman it is solidifying. For me, it remains a vaporous presence that for now seems a little less oppressive but is nevertheless still there.
Aria’s lab work was wonderful. Her blood was a nice red color! Her hematocrit remains steady; still super anemic but not in need of a blood transfusion. Her white blood cell counts are normal as are her platelets. Her ANC level was over 7000, which is the highest it has ever been, which tells us that she has all kinds of infection fighting power. Her cholesterol level is WAY down too, not so much that we can stop her medication but we are going from twice a day to once a day. Small smart healthy steps toward healing! Her overall counts (ANC) are expected to start dropping because of the chemo medication she takes at home. It is normal and should not reach the critical immuno-suppressed stage. She should stay in a healthy range for the next 10 weeks until we hit Delayed Intensification and everything will change. Her spinal tap procedure went off without a hitch. She has one more spinal tap next Friday and that will complete her procedures for this phase of treatment.
As I was in the recovery room with Aria and she was eating carrots and ranch as well as ‘red chips’ (nacho cheese flavored doritos) I was talking with Dr. Trobaugh about her numbers and her progress and so forth. My mind and heart were racing from the meadow to the woods again and I was desperate for some reassurance. I think I asked her at least twice if not more, “So, you’re happy with how well Aria is doing right?” I realize now as I write this, that the voice of my very tender and fragile psyche was making feeble attempts to say simultaneously, “Can’t you just tell me that everything is going to be ok?! Can’t you just say that this nightmare of sorts is going to end really-really-really-really soon? Can’t you? HUH? Can’t you please just tell me that?” It was a pleading voice and I as I reflect on that moment in the recovery room at Aria’s bedside, it is no accident that I was on my knees asking Dr. Trobaugh these questions with my real voice and with the silent one in my mind. Dr. Trobaugh is amazing. I have to remember to tell her that when she looks in my eyes and tells me with a smile, “ I am so happy with how well Aria is doing. She is doing GREAT!” it is so reassuring to me and fills me with just the amount of strength I need to face another week. Her honesty and her ability to sense me and know my needs are tremendous. She is one of those doctors that can truly relate to people. She can take this very complicated matter and make it make sense. It is a gift and I am so grateful for her.
I asked her about the psychology of this phase (consolidation) and interim maintenance. I told her that I felt a lot lighter and more hopeful but I was concerned that perhaps this was a honeymoon phase of sorts. I didn’t want to get my hopes up too high but at the same time I needed to know that it was still ok to feel hopeful. I was a little confused still needing more reassurance I suppose. I was thinking if I was feeling hopeful was I denying the potentially grave reality of the situation? I know it is important to remain positive and hopeful and not dwell on the negative and darkness but I kept thinking about that other mother and her son’s 90+% chance of survival from his cancer. I know that his cancer is very different than the one Aria is dealing with but I wanted Dr. Trobaugh to be able to look into some crystal ball and tell me that Aria’s future was secure. She was very good to remind me to be in this moment. “For now, Aria is doing great! You have every reason to relax a little and enjoy her feeling better. She just couldn’t be doing any better than she is right now!” I was comforted by her words although not fully settled. I suspect I’ll never be fully settled. I imagine my emotional heart and my practical mind will always be at odds given certain circumstances. This is life. For now, I am trying to keep most of me in the light of positive thinking while still keeping a steady foot in the shadows of reality.
It has been a glorious week and yet I have struggled a great deal. I’ve spent days peeling layers of myself, dissecting what’s been getting under my skin and trying to find the source of my fluctuating mood. I’ve been very introspective trying to get myself sorted, which makes me look at Aria and her need to go into her cocoon. We are very much the same in this regard. I’ve come to the conclusion that I was emotionally spent this past week. I had no reserves and no emotional stamina to exercise the patience needed to raise 3 small children, run a zoo-like farm, be a humble happy mate and friend as well as be a source of creative energy for my own spirit. It isn’t that I’m asking too much of myself, nor am I trying to be any kind of wonder- woman. I simply recognize that when I have a short fuse and I bark at my children instead of modeling respectful tones and language I know my spirit is soured and needs some tender attention. I spent the week grumbling and growling over the least little things because those little things seemed overwhelming, growing exponentially larger as the days went on. Little things like Rianna trying to climb on chairs again and again 100 times throughout the day just wore me down. Aria pouting instead of using her words to express herself made me crazy. Reo digging his heels in over not wanting to try some new kind of food was infuriating. The fact that I just wanted to vacuum a room without someone tripping over the cord or crying over some such thing, just made me want to rip my hair out! None of these things in isolation is difficult, nor are they very challenging when I am emotionally charged, but when I am not, these things become very hard and the days have a seamlessness that is exhausting in their tediousness. None of these things are anything but normal parenting/ mothering challenges and they are only slightly exacerbated by Aria’s illness in my opinion. This kind of emotional drainage happened more than once before she got sick and I’m certain will happen many more times through the course of her treatment. It is just what makes life, life, but that doesn’t make it any easier when you’re in the middle of it, dealing with it.
It is not a sustainable state of mind for me and I am committed to figuring it out as quickly as possible so that I can return to my preferred joyful state of being. Hence, the need for retreating to the cavern of my mind for some much needed quiet and care. It is very clear to me that I benefit greatly from this kind of reflection and self-analysis. Some may view it as being selfish but I view it as an exercise that better enables me to be fully and sincerely present to those who need me most. I often think about the beautiful teaching of Jesus when he said, “Love thy neighbor as thyself.” For many, many years I heard that lesson ring in my head but I realized about 10 years ago that the last part of the lesson “as thyself” was something that tended to fade into the background. What I remember learning from my Christian teachings was to somehow forget self and focus on others and yet, this is in direct contradiction to what I believe Jesus was trying to convey. It wasn’t until I found the teachings of Buddhist monks that I learned how to better apply that lesson. I was learning to consider myself first and tend to my needs with gentle respect and kindness. I learned to embrace myself with all of my wonders and misgivings. I learned that to know myself in truth made me better able to know others especially my children. This is something I constantly think about as I develop new relationships and have new demands and challenges to face.
One of the many things I’m learning through the experience of Aria’s leukemia is to understand myself with greater clarity and depth; to face those emotions of mine that are unkind when they are aroused. I think the better I understand my own triggers and when I’m maxed out emotionally, I will be better equipped to face life when it gets hard and I find myself tempted to be angry with others asking questions that have no answers. Questions like “Why me?” only begs another question in my opinion which is “Why not me?” Life is both easy and hard, good and bad, fluid and turbulent. It is the perfect balance of positive and negative. I am convinced that when life seems out of balance it is I that is on ‘tilt’ and only I can right myself. I suppose if I were really together spiritually, I could say that I pray with devotion or I meditate with serenity and calm. I’m hopelessly inept at both. I don’t pray as I was taught as a child and whenever I’ve tried to meditate in the traditional sense I either fall fast asleep or my mind wanders aimlessly. Instead, I find quiet moments in everyday life to think and consider all the things that nag at me as well as those things I find praiseworthy. It is a constant practice and right now a cherished method for mental release has been this writing.
I will end this lovely bit of meditative imagery with this; Rianna has just walked into the library with Doc’s underwear on her head. Reo is running around wearing a magician’s cape trying to save his kingdom from evil demons and Aria is coming downstairs wearing only her underwear and growling like a scary lion! Life is so good! Life is meant to be thoroughly enjoyed and we are meant to be truly, sincerely, hopelessly joyful. I am convinced of that and I fully devoted to its practice.
~j
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