After that first outpatient visit, I had been on the phone with my parents and Doc with his parents explaining what was going on. They had been very good to keep everyone else updated and more and more people were asking to be added to my email list so they could receive updates as well. After I sent that email to my Goddesses, I spent the next few days hunkered down reflecting on what was happening. We were having incredible snow storms that were beautiful and cleansing. I suppose at the time, it offered me a blank canvas upon which to toy with thoughts.
Sending the following email was a truly cathartic moment. I think this was when I discovered Aria was my Muse and that I indeed had a voice that needed to be channeled as well as a need to write what was in my mind that possessed a force I wasn’t able to suppress. From here, my writing changed and I think it reflected my attitude in general.
January 29, 2008
Subject: Tuesday January 15, my thoughts
It is Saturday evening January 26 2008 and it has been snowing all day. I LOVE the snow. I haven't been in this snow yet, but I've been watching it admiring its purity and its silence. It has been a beautiful day. Aria's first outpatient procedure and chemo treatment went really well...truly as best as we could possibly have hoped for. In some ways the time flew and at the same time it stood still. I'm finding my perspective these days is colored by many opposites. For instance, I am both calm and panicked. I have a sense of peace and terror. I'm sick to my stomach and famished. I'm exhausted and energized. It is the most peculiar existence but like virtually everything we're doing now, I'm observing it, embracing it and going with it. I feel strangely free. Aria was starving most of the morning of her procedure with a real craving for eggs. We had to try to distract her for hours and this was challenging. Understanding tones, "honey, I know...you'll get to eat soon..." or "dag nab it..what a drag...." or "I'm sorry you're so hungry" were just not doing it for her. Aria was pissed and she was hungry. Rather than turn beastly, she was whimpery and limp. I tried all kinds of things. We looked for everything red. We looked for everything with the number 2 in it and so on and so forth. But FINALLY she was taken in for her procedure. That lasted all of 45 minutes or so. She woke up really well and still famished! Waiting for her was a bagel and cream cheese, oranges and oreo cookies, all of which she inhaled and still wanted her eggs when she got home. This is the steroid kicking in and it only gets worse as we go along. We have 20 more days of it...HOLD ON!!!!!! She had her chemo treatment and we hit the road. All was fine. She had some nausea, a little headache but no leg pain, which we were dreading. We'll see over the next few days but so far so good. The child played out in the snow today for about 10 minutes. She helped Doc plow for heaven's sake! INCREDIBLE! We are very pleased with how well she is doing. We're watching her like a hawk obviously but happy that she is resting really, really well and so happy to be in her own bed. It is so nice.
It is now Sunday Morning January 27, 2008 and it is STILL snowing!! It is just gorgeous. I'll take some pictures and try to post them for you!! We are expecting snow all day, up to 10 inches for the weekend! I'm in heaven. It's the really good stuff too; nice snowman making, monster making and angel making snow!! Aria had yet another wonderful night. She slept all the way through once again. She has a pretty hearty appetite but is unfortunately dealing with some mixed messages from her gut; her tummy is rumbling and uncomfortable but she must be asking herself, "Am I hungry?" or "Am I going to throw-up?" Poor baby...she's eating and everything is staying down but her gut is gurgling and churning...Still, no headache (her complaint is "my head feels bent!") no leg pain ("my legs are bent") and no real lethargy. She's doing so well! Yesterday, she told our neighbor and dear, dear friend/surrogate family member, Tata, that "My mama told me that my hair is all gonna fall out but then it will all grow back!" She was waving her arms as if waving a magic wand and wiggling her fingers and hands as if casting a spell. Her playfulness and full acceptance of the matter was very reassuring to me. I feel it is important to keep a level of nonchalance about so much of what we're facing otherwise I think it would be easy to be consumed by the daunting newness in our lives. It by no means de-emphasizes the seriousness of everything happening nor do I think nonchalance is synonymous with being flippant. Instead, if I can shrug my shoulders at what Aria has to face with an air of confidence, a "Well, this is what we have to do, so let's do it" kind of attitude, then I'm certain she will mirror my confidence and indeed she already has. Then again, I have to be able to fully admit that my confidence may be the result of me mirroring her and not the other way around! In this moment, we are all well.
I wanted to take a moment to once again thank each of you for writing to me to tell me how much you've appreciated these updates. I recognize they are long, somewhat graphic, and perhaps even a little tedious. Thank you for humoring me in reading them and taking the time to share your thoughts. In all honesty, I am not writing them for you. Selfishly, this is an exercise for me. This has become my journal, my open book and you are all invited. Your words of encouragement and your praise have been tender strokes to my sometimes wavering and fragile psyche. I appreciate them so much so please keep the emails coming and the letters. They are such a bright light in our day where clarity and cheer falter despite the courage and confidence you read in these thoughts. I'm also deeply touched that you would share these emails with your friends and extended family members, who have written you or me with overwhelming kindness and generosity. This, too, is the human experience and it is in some ways more overwhelming and more powerful than the tragedy we are learning to cope with now.
Since January 15th I've been in a place of profound reflection and introspection. I don't feel closed off to others in the least. I don't feel any sense of withdrawl from people that I've heard can happen in times of grief and sorrow. It is a strange thing to be dealt something that I often thought of in passing and always with a sense of fear, dread and inconceivability. "How do families deal with things like this?" "Oh my God, what would I do if ever one of the kids got horribly ill?" We've all asked those questions and we still ask those question. I'm still asking those questions, "Oh my God, what if Reo gets really sick or breaks an arm or just happens to be walking outside and some space junk lands on his head and he dies! What would I do?" I know it's insane but I don't think I'm wrong in saying that most of us at some time or another have asked similar questions about those we love. The totally flat unhelpful response one hears all the time is, "you simply do not know what you would do." There is an element of truth there, but it is such a knee-jerk obvious response, it just pisses me off. Of course you don't know what you're going to do! We don't have the foggiest idea of what Life has in store for us. However, this idea masks the truth of the matter, which is that no matter what Life deals, you will always, always, always tap into that "do-do-do" mode to simply survive. For me, it was as simple as that.
Tuesday morning was like most other mornings. We got the kids ready for school and had a nice drive into town. Aria's shoulder was still very tender but I had convinced myself that she had some kind of inflammation and I'd probably have to go pick up some prescription. I had definitely entertained the possibility of something dreadful but I really couldn't visualize that so it was relatively easy to put out of my mind. It was around 10 30 am and I was heading back to school to pick them up. Rianna had fallen asleep in her car seat in the 2 miles it took from our driveway to the highway. I vividly remember turning onto the highway having a thought that it would be so much fun to contact the Spokane Fine Arts/Drama organization at one of the theatres and see if I could maybe spend some time in their costume department. That, and I thought about getting the kids involved in some kind of drama program too. It was all very sketchy and fantasy oriented but still very fun and amusing. It was 10 45 and Doc called my cell phone, which wasn’t out of the ordinary. I thought maybe he wondered if I had heard anything from the Doctor about her lab results that were drawn the day before. This is the gist of that conversation.
"Hi hon, what's up?"
"Are you driving? On your way to pick up the kids?"
"Yeah, I'm about 10 minutes away."
"Good, I'm going to meet you at home and then we have a 1 o'clock appointment for Aria."
At this point my stomach has literally jumped out of my body and what has replaced it is a soaking wet wad of a beach towel about to be wrung beyond recognition. In addition, I felt all the blood drain from my head and begin flowing around the beach towel that is now my stomach.
"Doc? (pause) Is everything alright?"
"Uh, no it isn't. Are you driving? Are you close to the school? Ar..
"Doc, what is it?" I'm gripping the steering wheel. I notice that my knuckles are white.
"Julie, they think Aria has leukemia."
"Leukemia?"
"Yes."
I can't speak but inside my head I'm screaming all kinds of obscenities I'll spare you here.
"Julie, I need you to hold it together for the kids. I need you to pick them up and talk to them about what we're going to do. I need you to prepare them that we may have to be admitted in the hospital."
"Shit, the hospital?"
"Yes."
"Doc, this is bad..this is really, really, bad."
"Yes it is. We're going to get through this..."
I'm taking deep breaths now. I've parked outside the school and the kids haven't come out yet.
"OK, I can do this Doc. I'm up for it. I'm on board. I'm there. I'm strong." I'm totally trying to convince myself. Right now my beach towel stomach is beginning to be wrung.
"I'll meet you at home. We need to pack a suitcase for the hospital, snacks and so forth."
"Got it. I love you Doc."
"I love you too, see you soon!"
Click.
Wrinnnnng...wriiiing...shhhplash...ssssplush!! goes my beach towel stomach.
But now the most amazing transformation occurs. My do-do-do button has been activated and suddenly I have all kinds of things to do. I have a check-list in my head, which is trying to suppress the voice that is shrieking nothing but "leukemia! leukemia! cancer! cancer! chemo! chemo! leukemia! leukemia!"
I can see the kids coming out of school now and it is taking every ounce of strength I can conjure not to be in tears. Aria has no idea what she's about to deal with. I don't either for that matter and I'm completely losing it but keeping it all together at the same time. The kids are great! Aria is feeling better and shows me that she has full range of motion in her shoulders. Reo can't wait to show me everything he made in school. Aria jumps in the act too and shows me all her treasures. I take a moment and notice every single detail. I am deliberately trying to be gentle in my movements, my words and my tone. My stress hormones are kicking in and I'm sweating and my towel stomach is wringing itself again. wwrrriiiinnnng! I'm convinced I'm going to vomit so I start breathing. I put the kids in their seatbelts. They are so innocent, so pure, so sweet, so blissfully unaware. I am completely devastated and don't know what to say. Tears well in my eyes and I let them. I sit in my seat, take a deep, deep breath, allowing my tears to spill over and begin heading for home, toward our new life. I tell the kids at this point, "Hey guys, I'm feeling really sad right now so don't be scared if you see Mama cry. I'm feeling sad because, Aria, you are really sick and we need to take you to a special doctor to help us make you feel better. So we're heading home and we're gonna meet Dada there and then we get to go to the hospital and meet a bunch of new friends and doctors to help us understand why your shoulders hurt." They are completely silent. They are processing this news too. They are, without a shadow of a doubt, sensing my emotion, my fear and my sorrow. I don't protect them from this. I let it be what it is. I made a silent vow to be completely honest about everything with the kids and most importantly with myself.
The drive home was long but my check-list was clicking away. When I arrived home, Doc wasn't there yet, so I decided to make everything as "normal" as possible. I made lunch for the kids. I went through their backpacks and so on. Doc arrived a few minutes later. We hugged and breathed and exchanged a look that transcended words. We went at it; divide and conquer mode. Check, check, check went the list and suddenly it was time to go. We found ourselves at the pediatric oncology clinic checking in. At this point my towel stomach was once again wringing itself uncontrollably. I couldn't believe my eyes. I noticed that my feet were firmly on the ground and I was taking in every single detail of the waiting area but nothing made any sense. I kept hearing myself say, "We only might have to be in the hospital. They only suspect she has leukemia. It still could be something else. We're here to check it all out." We go to a very fun playroom and there are a few kids playing waiting for their treatments. I'm very aware that I must look like a deer in headlights. I have this smile on my face that I'm aware of that is trying to send a reassuring message, “Don't worry, I am not going to puke! I will not puke!" to everyone around me. Wwwrrriiiinnng goes my stomach towel.
Nurses show up and Aria is already checked in. I'm feeling suspicious. They know something I don't know. wwrrrrriiiinnng. I need to sit down. I can't even tell you what they did, if they did anything like draw blood. I honestly have no idea. What I remember VERY clearly though is the hospital bracelet a nurse puts on her arm. We have not met a doctor yet who has looked me in the eye and said, "Julia, your daughter has leukemia and has to be in the hospital!" I ask her if this is standard protocol for the clinic and the nurse looks a little baffled but she is incredibly gentle in everything she says and does. "I'm sorry," she begins, "but I'm pretty certain you all are being admitted. Wasn't that your understanding?" Wwwrrrriinnnnngg Doc tells her that we understood that it was a possibility but it hadn't been decided. She smiled nodded her head and told us that indeed we are being admitted. They DO know something we don't know! I'm aware that I'm feeling completely insecure. We are led to an examination room where we wait. Aria is limp and tired. She is sensing the anxiety. Reo is totally amusing himself with some pencils. Rianna is nursing. Our oncology doctor comes in with another woman and begins to tell us what they know and understand. They indeed suspect Aria has leukemia and this what we know about leukemia, etc. etc...Wwwrrrrriiinnnngg.. I'm aware that I'm standing and wandering around like a caged lion. For some reason I find this hilarious and in my head I'm laughing hysterically. It is so weird. I'm up and down and up and down. Doc, meanwhile is steady...completely calm and holding Aria. He is all about numbers and data and I feel completely reassured by his presence. It is very much like being freezing cold and suddenly having someone wrap a heated blanket around you. We had a long, long conversation with Dr. Angela. At least it felt long. She was incredible. She answered every single question as if it had been the first time someone had asked it. She was positive and so hopeful and at the same time extremely honest and forthcoming. There were no illusions to what she made certain we understood. I was so grateful for her. The news that we would likely be in the hospital for 2 weeks or more, WWwrrrrriiiiiiinnnnnggg...was like falling down. It really was. If you will, consider for a moment he last time you fell down. It is the most slow motion uncontrollable series of events that leaves, me anyway, breathless, confused, in pain and often humiliated. This news spared me the humiliation but I literally felt like I had fallen down and hurt myself. When she told us this she was beginning to tell us other things when I cut her off. She was so gracious and gentle to allow me to interrupt her. I told her that I needed a moment to wrap my head around 2 weeks living in the hospital. I had 2 other kids, a farm, animals, school, my life, my hobbies etc.etc...She breathed deeply, nodding but saying nothing. She didn't have to. Then she told us about the treatment plan more or less and once again I fell down into the reality of 2 to 3 YEARS of treatment. WWwrrrrriiiiiinnnnngg.. At this point, I am thinking of almost nothing but how badly my stomach hurts and how sick I feel and how completely depleted of fluid my body was. My towel stomach has been wrung dry but was now tying itself in huge knots. We process more information and then Aria is examined.
At some point during our conversation I ask our doctor point blank, "based on your experience and what Aria presents with are you pretty certain that she has leukemia?" "Yes." was her response and she looked me straight in the eye. I loved her immediately. I trusted her completely. My suspicion vanished and I took comfort in knowing that they knew before we arrived what our future held and they knew how to hold our hands, open the door and lead us to the other side. The other Julia couldn't believe this was happening. This new Julia was grounded and ready to make preparations and to surrender in some ways. For the next several hours the 2 Julia's were facing each other with a myriad of emotion and thought. We were led to our hospital room where Aria was checked in again. I was so aware of everyone's face and their smiles and their softness and tenderness. It was a frightening experience in a very loving secure place. I was also very aware that I was hanging on to every single word anyone said to me. Peoples' voices were clear and what they said rang and rang in my head. When someone said, "We'll be hooking Aria up to some IVs", I was ready and was taken back when that reality didn't actually happen for hours later. The old Julia was quiet and observant. The new Julia was asking questions and trying with every ounce of my being to be considerate, articulate, and equally gentle. Everyone and I mean everyone behaved as if they were a masseuse for my psyche.
We settled into our room and I was hoping my stomach would settle. No such luck. My head ached and I was beyond tired. I was so exhausted and emotionally drained that I could no longer concentrate. It was fast approaching 8 pm and it was time for Reo and Rianna to go to bed. We decided that I would take the kids home and Doc would stay in the hospital. That was the plan for at least this night. I remember driving home telling myself to stay awake and telling my stomach that it could settle itself. I was so tired I couldn't cry even though I wanted to. I brought the kids inside and got them ready for bed as we always do, except without Aria, which felt so, so horrible. I asked Reo to stay with me in the Big Bed, which he did and we all went to sleep. I remember thinking as I turned out the light, " So long old Julia....this new Julia has something else to do." With that, I visualized taking my knotted dry beach towel stomach out to the clothesline. I hung it up and let it wave away all I knew before and at the same time act as a flag to signal the beginning of a new journey....
~j
It’s one thing to write about a tragic event in the moment. It is something else to allow a little time to pass, thoughts to season, and feelings to become clearer. This is a difficult process. It is painful and not always helpful to everyone. Like virtually everything in life, there is no One Way to journey toward truth. We must all learn to trust our unique voice and follow that. Sometimes, however, it helps to listen to the voices of experience, those who have traveled before us and made the journey to their sign posted purpose.
I was just beginning mine and suddenly reflection became less intimidating and more empowering. Suddenly stillness and silence were the forces I sought to guide me. It helped a great deal having so many rallied around us, encouraging us with their thoughts and words of wisdom. These are some responses that people sent to me after reading my email.
January 27, 2008 (from a good friend)
Dearest Julia -
Your journal entry below moved me to tears. I am honored to have been included in the rawness of your emotions, insecurities and survival.
I can only imagine how incredibly beautiful the farm is with all the snow. I'm picturing it as I am writing this email. I trust the chickens and rooster are keeping warm and continuing to produce those yummy eggs.
Let's talk about our girl Miss Aria if we may. We are so happy to hear that she responded so well to her first treatment. What a CHAMP!! Are her treatments scheduled for the same day each week? When is her next treatment? We are thrilled to hear that she's comfortable and resuming some sense of normalcy in her life by helping Doc plow the farm. Incredible! Celebrate those moments and remember to find time to breathe.
On my continued journey down the road of motherhood I never cease to be amazed at the strength, resilience and shear tenacity of children. We surely do not give them the credit they so deserve. It's usually at times like this that they remind us what they are capable of handling. Aria is an incredible little girl. She's got amazing determination, spunk, personality, beauty, confidence and love of life. Her love of life will give her the additional strength she'll need over the next year and when she's not feeling well and down in the dumps her greatest assets; you, Doc, Reo and Rianna will be there to lift her spirits. I can't think of a luckier child.
You and Doc have done an incredible job at keeping things as "simple" and "ordinary" for her and I believe that helps her manage her anxiety. I would just like to just remind you that you are all at the very beginning of a long journey and you are by no means in any sense of a routine. This will happen over the next few weeks/months and before you know it everything won't be so hard to manage, coordinate, execute etc. Let people help you, let them do whatever it is they can to help you until you feel you don't need the help. Remember, it takes a village.
I was always really amazed and in awe of the old Julia and can't imagine how the new Julia will be any better. You are an incredible woman, mother and friend. Miss Aria gets her love of life from you. You are the rock of that family and you will all get through this. My cell phone is one and my inbox is open whatever you need - I'm your girl.
Love you so much!!
January 27, 2008 (from a friend of my Dad’s who forwarded this to me)
Gene,
The details are extraordinary. I feel her pain, her anxiety, her worry,
her desperation. I cry as I read her every word. Please let her know
that our prayers and love will always be there for all of them. I
believe that is the way God shows himself-through the empathy we feel for each other.
God bless them all.
January 27, 2008 (from my sister-in-law)
Your email is beautiful - beautiful and so very sad. I can't express how much our hearts go out to you all. We are thinking about Aria every hour every day. Lots of people like Andy and Allise are asking us for updates, so the branches and support spread. We have been slow to get it in the mail but finally there is a package on its way.
Lots of love
January 27, 2008
Hi Julie my name is Maureen Briggette and I am married to Thomas Briggette who is your dad, Gene's, cousin. We live in Boston. Tommy family is so big that even after 23 years I am still figuring things out. Gene added my name to his e-mail list when I changed my e-mail address recently. I want you to know that Tommy and I are praying for you and Doc and the family. Aria sounds like a strong little girl. I know that it must be hard to have faith but through trials we develop perseverance. Just reading your blog and your words have helped us with our own trials and to be able to focus on your family and Aria who need prayers and strength from the family. I pray that because of your obvious faith that you will always see the light with your heart, when right now sometimes the eyes look toward the darkness. As God wraps a hedge of protection around you I pray that God will give more grace, strength and comfort.
January 28, 2008 (from my Dad, who became one of my most devout ‘followers’. His bias toward me is obvious and very endearing. He’s such a wonderful person!)
To all my Love Ones!
This message is really two messages in one. The first is an update relative to Aria's status through this past Saturday. The second is a description of Julie's psyche and "stream of consciousness" on the fateful day – January 15. It is devastatingly detailed, frank, and heart-rending. To know, on a first-hand report, what it feels like, what goes through one's mind, how gut-wrenching horror can be when confronted by tragic consequences is startling. It is a very long report but, I urge you! -- worth reading.
I cannot help but think that Julie's experience is God talking to her --
patiently, wisely, compassionately, mercifully. How else to explain her description of her "two selves," her pressing her "do-do-do" button? Here is, I believe, a faith we all seek -- faith in ourselves, true, but faith that we are not alone in our travail. Oh, yes, her other two children and her wonderful husband are there with her. And husband Matt/Doc is a rock for sure! But, I sense there is even more -- even beyond these and her circle of friends and others expressing their concern and identity with her in her plight. That "Spirit," "Force," "God" -- call it what you will – is the "Presence-in-our-Universe" that lifts us all to Life and our determination to incorporate It into ourselves. It is the root of who and what we are as humans.
I am grateful to all of you for your prayers, thoughts, and kindnesses in these troubling and frustrating times. God Bless you for everything you do for us!
January 29, 2008 (from my Uncle, who is also hopelessly biased!)
Julie,
You should write. I feel I am there with you. I think many feel similarly. You have many gifts. I suspect if you took up golf you would give Tiger Woods a run for his money. Let it be known that I, as one of your many admirers, did not wish this challenge upon you, but are simply proud of how you are dealing with it, and are simply proud to know there are people like you on this earth.
Much love,
:#)
I received many such emails, phone calls and letters. Every word, every sentiment, every bit of contact was as meaningful to me then as it is now. Those voices of support reminding me and encouraging me to explore my courage and my strength were monumentally reinforcing especially during those early days when I was so new to the process and so frightened and insecure.
I was thinking today as I was pulling weeds and noticing the delicate flowers of my garden that sometimes we withhold what we want to say for fear of saying the ‘wrong’ thing. It happens. We’re all going to do it at some time during our human career but let me offer this. Even those ‘wrong’ things can be right too. We learn about ourselves when we read and hear things that make us cringe or trigger responses within that we may not have known existed. The trick is rather than waste energy on the other person and what they said and/or did but spend more time examining the reaction we feel within ourselves. It is so easy to dismiss those reactions and blame others for having elicited them, but I think it is infinitely more meaningful to dismiss others for a time and examine our reactions instead.
Sunday, May 24, 2009
Our first Outpatient Clinic appointment
There was no time for us to settle in to being home before we had to turn around and head back to the clinic. This was comforting as odd as that may sound. I was still reeling and trying to digest the whopping reality that cancer was going to pervade every nook and cranny of our lives. The whole outpatient experience was haunting me and I wanted to get it over with as soon as possible. I didn’t want to be afraid and I knew that the only way I could achieve that was to buckle up and face it. I wouldn’t be honest if I didn’t admit that a great deal of fear was knowing that I was about to meet and see families just like us and God I didn’t want to accept that reality. I didn’t want to be ‘one of those’ people! I couldn’t imagine Aria losing her beautiful hair and suddenly becoming a poster child for chemotherapy and cancer. I know that sounds horribly vain and don’t think for a minute that I in my admission I didn’t spend hours crumpled in a heap of filthy shame about it. I didn’t know anything about what we were to encounter. I knew baldness and chemotherapy went hand-in-hand and I knew it was bad. I just didn’t know how bad. I didn’t want appointments and follow-up to define our lives. I didn’t want to incessantly talk about cancer and I knew that I would. I didn’t want this and yet I had to accept it, otherwise I knew I would lose myself by constantly battling ‘I don’t want this’ versus “this just is.”
I also knew, in some vague way, that I’d have to muster all the strength I had within me to deal with other people. People exactly like how I was just 10 days before; people terrified out of their gourds about cancer. People wanting to know every detail but not wanting to know at the same time. People wanting to help, but not having the faintest idea how to be helpful. People, who in their fear, would eventually stop calling, stop writing, stop asking and fade into the backgroud resuming their lives as usual. I dreaded this.
It is critical to say that there is absolutely nothing wrong with how people react to this kind of tragedy when it remains so completely outside of their own truth. People very simply don’t know what they don’t know. I would have been exactly like these people I describe. I would not know what to say. I would want to say all the right things and do the right things and in my effort hopelessly fail. I would be constantly terrified and I wouldn’t know how to be present. I would withdraw and resume my life, not because I don’t care deeply but because my fear would have been greater. I knew then I was projecting this reality about myself onto unsuspecting ‘others’ but I didn’t think I was too far off the mark. I’ll mention that some were exactly as I described, but many, many more showed me courage, devotion and love that was beyond anything I could have imagined. People, in general, have taught me and shown me just how inside-out I could be filled with cowardice, vanity and insecurity, while simultaneously showing me how to turn myself right side out and become the person I was meant to be.
It is worth saying that the other thing that was beginning to creep into my psyche was the sense of reflection. Up until this time I was so busy processing new information coupled with new things to do like schedule appointments, check her temperature, monitor her bowels, look over her skin and the like that I didn’t allow much time for questioning and wonderment over the purpose of it all. I had 2 other kids to manage, a farm and a household. I had plenty to do that occupied my every waking thought. However, I knew that an existential awakening was awaiting me and it scared me. I didn’t want to have to think about it. I didn’t want to have to face the philosophical turmoil of life and death. I didn’t want to examine under the magnifying glass of my mind’s eye the purpose of my life that was beginning to unfold without my permission. I could see it almost like a sign reading, “Your Purpose” nailed to a post off in the distance. I knew I’d have to travel there and it seemed really far away and the terrain was like nothing I had ever known. I was unprepared and tempted to subscribe to ‘being busy’ as opposed to doing what I knew I must which was ‘to be still.’
January 25, 2008
Subject: I LOVE YOU
Goddesses, I LOVE YOU!! This is a VERY big day. Our first outpatient clinic day with a procedure. I'm stressed. Aria is wandering around whining saying, "I hate it.", regarding taking her meds. Sigh. This is tough stuff. So there’s a lot going on. However, I have to tell you that Rebekka's gift came in the mail. I am without words to describe it! I've looked at every single piece and picture; not a quick glance but also not a "hold each one, take several minutes to absorb all the detail". That will happen here in the next few days. For now, I've handled each picture, feeling a little light-headed because each one has blown my mind and taken my breath away. It is a work of art...a treasure that I will cherish for all time. It will be something that in 50 years when I'm well into my 90's, all the pictures will be faded but they will be engraved in my mind...perhaps it will be the only thing I remember at that time...still, there it will be and it will be a place to seek and receive comfort and love.. THANK YOU!!! I have got to hit it into high gear and get ready to take Reo to school and Aria to clinic. Big day....stinky stressed.....breathe breathe breathe.......please keep us in the light!
I can't begin to tell you how lucky I am to have you. What I wouldn't do to share you with the world. Everyone would be so much happier!! ~queen
January 25, 2008
Subject: Procedure #1 done!
Aria tolerated the procedure (spinal tap with a chemo drug put in her spinal fluid) and a bone marrow biopsy very well. The procedure itself went really fast..less than 45 minutes. She went under really easily and recovered exceptionally fast. This mild sedation business is SOOO much better than the general you get with a big surgery. Amazing. The day itself was hectic but ok. It was high energy but manageable. I dropped Reo off at school, came home and picked up Aria and Doc and we all headed to the hospital. We arrived a little after 9am, which was great. They took her vitals and got her prepped to "access" her, which meant putting in her port plug. It went really well. She didn't feel a thing, but still cried out of the newness and fear would be my guess. She was incredibly brave. She was also VERY hungry and kept whining that she was just starving! Poor thing, she just wanted scrambled eggs. Her procedure wasn't scheduled until 12 30 so we had a long, long wait. It all went pretty fast though and the fact that I had to leave a little after 10 am to go pick up Reo helped a great deal. It was a nice change of scenery. I won't always be able to do that but it was good today. Doc is planning to be at as many procedures as possible, which is so HUGE! So Reo, Rianna and I came back to the clinic around 11 30. We still had an hour to kill. S.T.A.R.V.I.N.G!!! The other hard thing was that Aria was so fussy and hungry she was fading, just needing to be held, carried and so forth. I felt so bad for her, but then it was her time and they took her back and before I knew it she was back. She was allowed to eat and boy did she ever! She ate a bagel with cream cheese, an orange and some oreo cookies! Then she had her chemo treatment and we went home where I promptly cooked up 3 eggs, which she inhaled with some sour cream! VERY happy little girl! The effects of the chemo are starting to hit her now. Her disposition is changing a little. She’s fussy, and a little achey. She also complains of a little sour tummy. That part is so hard because you know when you get so hungry you almost feel sick to your stomach? It’s hard to know if you feel sick or if you'd feel better if you ate something. That's her problem now. We're learning. She ate more eggs a little while ago and we'll watch her.
Her labs came back great today. She didn't need a blood transfusion for the procedure and we'll just be watching that every single time. She's strong and in good shape and we feel really encouraged about that. Things could change in a matter of hours, so it is a scary limbo we’re in now. So far, we only have to go back to the clinic next Friday and we're hoping that will be a chemo appointment only. I met a mother today with a 6 year old daughter who also has A.L.L. They are fast approaching the maintenance phase. Her daughter was hospitalized for the first month and in and out of the hospital pretty much constantly. This sounds dreadful and I have to gear up to deal with that. But here she is on the other end doing really, really well. Amazing...truly amazing!!
Rianna is sound asleep in my arms. I'm going to go lay her down. Reo and Aria are upstairs watching a Scooby-Doo movie. I have got to fold some laundry and do some general picking up. Since we've been home from the hospital, I feel like there's crap just everywhere. It’s making me nuts!
LOVE YOU so much!!
~queen
After this procedure day, my senses were inundated with a reality I knew was mine and I hated it and revered it. All those patients and their families….they were a part of me now. I slowly began to understand what that meant. Their stories were my stories. We were being woven into their lives and they into ours on a loom with infinite thread spanning the spectrum of color.
The moment we got home, I knew I wasn’t going to be able to resume life as usual. I wasn’t going to be able to ignore the questions, the pondering and wonderment of what we’d been dealt. I knew we’d never go back to a ‘normal’ life. It was like I had blinked and suddenly everything before me had changed and I’d never be the same again. It was then that I began to embrace being still, being silent and allowing my voice to finally be heard.
I also knew, in some vague way, that I’d have to muster all the strength I had within me to deal with other people. People exactly like how I was just 10 days before; people terrified out of their gourds about cancer. People wanting to know every detail but not wanting to know at the same time. People wanting to help, but not having the faintest idea how to be helpful. People, who in their fear, would eventually stop calling, stop writing, stop asking and fade into the backgroud resuming their lives as usual. I dreaded this.
It is critical to say that there is absolutely nothing wrong with how people react to this kind of tragedy when it remains so completely outside of their own truth. People very simply don’t know what they don’t know. I would have been exactly like these people I describe. I would not know what to say. I would want to say all the right things and do the right things and in my effort hopelessly fail. I would be constantly terrified and I wouldn’t know how to be present. I would withdraw and resume my life, not because I don’t care deeply but because my fear would have been greater. I knew then I was projecting this reality about myself onto unsuspecting ‘others’ but I didn’t think I was too far off the mark. I’ll mention that some were exactly as I described, but many, many more showed me courage, devotion and love that was beyond anything I could have imagined. People, in general, have taught me and shown me just how inside-out I could be filled with cowardice, vanity and insecurity, while simultaneously showing me how to turn myself right side out and become the person I was meant to be.
It is worth saying that the other thing that was beginning to creep into my psyche was the sense of reflection. Up until this time I was so busy processing new information coupled with new things to do like schedule appointments, check her temperature, monitor her bowels, look over her skin and the like that I didn’t allow much time for questioning and wonderment over the purpose of it all. I had 2 other kids to manage, a farm and a household. I had plenty to do that occupied my every waking thought. However, I knew that an existential awakening was awaiting me and it scared me. I didn’t want to have to think about it. I didn’t want to have to face the philosophical turmoil of life and death. I didn’t want to examine under the magnifying glass of my mind’s eye the purpose of my life that was beginning to unfold without my permission. I could see it almost like a sign reading, “Your Purpose” nailed to a post off in the distance. I knew I’d have to travel there and it seemed really far away and the terrain was like nothing I had ever known. I was unprepared and tempted to subscribe to ‘being busy’ as opposed to doing what I knew I must which was ‘to be still.’
January 25, 2008
Subject: I LOVE YOU
Goddesses, I LOVE YOU!! This is a VERY big day. Our first outpatient clinic day with a procedure. I'm stressed. Aria is wandering around whining saying, "I hate it.", regarding taking her meds. Sigh. This is tough stuff. So there’s a lot going on. However, I have to tell you that Rebekka's gift came in the mail. I am without words to describe it! I've looked at every single piece and picture; not a quick glance but also not a "hold each one, take several minutes to absorb all the detail". That will happen here in the next few days. For now, I've handled each picture, feeling a little light-headed because each one has blown my mind and taken my breath away. It is a work of art...a treasure that I will cherish for all time. It will be something that in 50 years when I'm well into my 90's, all the pictures will be faded but they will be engraved in my mind...perhaps it will be the only thing I remember at that time...still, there it will be and it will be a place to seek and receive comfort and love.. THANK YOU!!! I have got to hit it into high gear and get ready to take Reo to school and Aria to clinic. Big day....stinky stressed.....breathe breathe breathe.......please keep us in the light!
I can't begin to tell you how lucky I am to have you. What I wouldn't do to share you with the world. Everyone would be so much happier!! ~queen
January 25, 2008
Subject: Procedure #1 done!
Aria tolerated the procedure (spinal tap with a chemo drug put in her spinal fluid) and a bone marrow biopsy very well. The procedure itself went really fast..less than 45 minutes. She went under really easily and recovered exceptionally fast. This mild sedation business is SOOO much better than the general you get with a big surgery. Amazing. The day itself was hectic but ok. It was high energy but manageable. I dropped Reo off at school, came home and picked up Aria and Doc and we all headed to the hospital. We arrived a little after 9am, which was great. They took her vitals and got her prepped to "access" her, which meant putting in her port plug. It went really well. She didn't feel a thing, but still cried out of the newness and fear would be my guess. She was incredibly brave. She was also VERY hungry and kept whining that she was just starving! Poor thing, she just wanted scrambled eggs. Her procedure wasn't scheduled until 12 30 so we had a long, long wait. It all went pretty fast though and the fact that I had to leave a little after 10 am to go pick up Reo helped a great deal. It was a nice change of scenery. I won't always be able to do that but it was good today. Doc is planning to be at as many procedures as possible, which is so HUGE! So Reo, Rianna and I came back to the clinic around 11 30. We still had an hour to kill. S.T.A.R.V.I.N.G!!! The other hard thing was that Aria was so fussy and hungry she was fading, just needing to be held, carried and so forth. I felt so bad for her, but then it was her time and they took her back and before I knew it she was back. She was allowed to eat and boy did she ever! She ate a bagel with cream cheese, an orange and some oreo cookies! Then she had her chemo treatment and we went home where I promptly cooked up 3 eggs, which she inhaled with some sour cream! VERY happy little girl! The effects of the chemo are starting to hit her now. Her disposition is changing a little. She’s fussy, and a little achey. She also complains of a little sour tummy. That part is so hard because you know when you get so hungry you almost feel sick to your stomach? It’s hard to know if you feel sick or if you'd feel better if you ate something. That's her problem now. We're learning. She ate more eggs a little while ago and we'll watch her.
Her labs came back great today. She didn't need a blood transfusion for the procedure and we'll just be watching that every single time. She's strong and in good shape and we feel really encouraged about that. Things could change in a matter of hours, so it is a scary limbo we’re in now. So far, we only have to go back to the clinic next Friday and we're hoping that will be a chemo appointment only. I met a mother today with a 6 year old daughter who also has A.L.L. They are fast approaching the maintenance phase. Her daughter was hospitalized for the first month and in and out of the hospital pretty much constantly. This sounds dreadful and I have to gear up to deal with that. But here she is on the other end doing really, really well. Amazing...truly amazing!!
Rianna is sound asleep in my arms. I'm going to go lay her down. Reo and Aria are upstairs watching a Scooby-Doo movie. I have got to fold some laundry and do some general picking up. Since we've been home from the hospital, I feel like there's crap just everywhere. It’s making me nuts!
LOVE YOU so much!!
~queen
After this procedure day, my senses were inundated with a reality I knew was mine and I hated it and revered it. All those patients and their families….they were a part of me now. I slowly began to understand what that meant. Their stories were my stories. We were being woven into their lives and they into ours on a loom with infinite thread spanning the spectrum of color.
The moment we got home, I knew I wasn’t going to be able to resume life as usual. I wasn’t going to be able to ignore the questions, the pondering and wonderment of what we’d been dealt. I knew we’d never go back to a ‘normal’ life. It was like I had blinked and suddenly everything before me had changed and I’d never be the same again. It was then that I began to embrace being still, being silent and allowing my voice to finally be heard.
Friday, May 22, 2009
Moments
Nearly a year into the journey, I was talking to Krista about a mother who was watching her daughter die. It was for me such a spiritually leveling thought that I could hardly breathe. Krista mentioned that often what happens to people at that stage of the journey is that they ‘have moments’ with their children that will sustain them after they have died. At the time, I remember thinking, “All she has is moments?” It was a heart-breaking thought to know that life was whittling away to just a few precious moments and I found myself both angered and awed by that idea.
Moments have become something I have considered a great deal since that December 2008 conversation with Krista. Moments have indeed become the very defining elements that offer meaning at any given time throughout my day. It’s tempting to give consideration to only those moments that feel good. I have learned, however, that even the hard moments offer invaluable lessons. So, I have been focused on creating a life that is filled with moments as well as moments that are filled with life.
I’ve been going through pictures and it seems so strange to have been savagely turned upside down in the course of a day, followed by weeks of trying to find footing in a new reality all the while having moments of real joy, beauty and bliss.
These moments are indeed sustaining. I look at these pictures and they are in a setting that is overflowing with sterility, stress, death, fear, and despair and despite all that, the spirit of delight shines through. I remember wondering if I was really feeling happy since I could barely feel in general. I thought perhaps I was going through the motions of exuberance in order to keep the kids’ spirits up. I look at these pictures now and realize that I had moments of true happiness with my family despite everything. These moments are cherished. They are, afterall, all we have and all that matters.
Aria playing with a beloved puppet that Krista brought for her.
Reo showing off his missing teeth!
Aria with 2 of her best friends: Amy and Bethany.
Aria receiving her FIRST dose of chemotherapy (vincristine). She was blissfully unaware and perfectly content watching a movie.
Doc and Aria having a playful snuggle.
Moments have become something I have considered a great deal since that December 2008 conversation with Krista. Moments have indeed become the very defining elements that offer meaning at any given time throughout my day. It’s tempting to give consideration to only those moments that feel good. I have learned, however, that even the hard moments offer invaluable lessons. So, I have been focused on creating a life that is filled with moments as well as moments that are filled with life.
I’ve been going through pictures and it seems so strange to have been savagely turned upside down in the course of a day, followed by weeks of trying to find footing in a new reality all the while having moments of real joy, beauty and bliss.
These moments are indeed sustaining. I look at these pictures and they are in a setting that is overflowing with sterility, stress, death, fear, and despair and despite all that, the spirit of delight shines through. I remember wondering if I was really feeling happy since I could barely feel in general. I thought perhaps I was going through the motions of exuberance in order to keep the kids’ spirits up. I look at these pictures now and realize that I had moments of true happiness with my family despite everything. These moments are cherished. They are, afterall, all we have and all that matters.
Aria playing with a beloved puppet that Krista brought for her.
Reo showing off his missing teeth!
Aria with 2 of her best friends: Amy and Bethany.
Aria receiving her FIRST dose of chemotherapy (vincristine). She was blissfully unaware and perfectly content watching a movie.
Doc and Aria having a playful snuggle.
We're HOME!!!
Tragedy redefines life in the most brutal of ways. We are ripped of the belief that we have control, that life has an order, and that fairness exists in some capacity. When fate comes knocking with a menacing fist, suddenly we learn, we see and we understand. This aspect of the journey was a difficult one for me and I’m still challenged by it.
One the interesting elements in this wicked shift from what I thought was real to what was surreal to what was a new reality was how easy it could be while swirling around what was enormously punishing. I had a robotic motion during those days of endless learning that it seemed almost effortless There was a strange sense of comfort taking place and I owe a great deal of that security to the myriad of professionals, who descended upon us. We were getting to know nurses very well. Dr. Angela, was becoming more and more familiar and more trusted. I finally learned her name and began calling her Dr. Trobaugh. Krista, the child life specialist assigned to Aria, visited every day and was a wonderful sounding board. There was a genuine gentility and compassion coming from nearly everyone we encountered that suddenly the thought of going home was terrifying. Being home meant doing everything on our own. It meant outpatient visits that were completely foreign. It meant rather than observing and watching this new life unfold, we were actually going to have to live it. It meant encountering other families and their kids. It meant that it was real! Leaving the hospital meant that now every aspect of our lives was going to be touched by cancer and that was a big bitter pill to swallow. Still, I was aware that leaving the hospital meant wellness to some degree and that was a mighty wind upon which to sail into this next chapter.
January 24, 2008
Subject We’re Home!!!!!
Yippppeeeeee-yaaaahhhooooooo!!!
I want to thank you all once again for the wonderful emails, letters and presents! It is so humbling. I am also deeply grateful for all the amazing words of encouragement. So many have expressed their confidence in us and you have no idea how we draw strength from that in virtually everything we are doing and facing; not the least of which comes into play every time we draw the syringe full of more medicine for Aria, knowing it may make her feel like crap and at the same time is saving her life.
We arrived home yesterday. Doc was absolutely elated. I, on the other hand, was so stressed and anxious that I could barely think straight. Being home for me is incredibly daunting. The outpatient life is going to be so challenging in many ways. We go into clinic at least once if not twice a week for the next 4 -8 weeks. Most of the appointments are for chemo and checking labs and so forth, but 'procedure' days are big. Tomorrow is one of those days. She is scheduled for another spinal tap and bone marrow biopsy at 12 30 and we are to check in at 9 am! You got it, 3 1/2 hours EARLY. This is because they need to check all her lab work and then wait to get the results, which will ultimately determine if she needs platelets or a blood transfusion to sustain her through the procedure. Then we wait some more. Then she's prepped for the procedure, followed by more waiting and so the day goes. I expect to be home by 5 pm. Reo has to be dropped off at school and picked up and then entertained for the afternoon. Yes, I will be trying to solicit some help but not for tomorrow. I want him to be able to experience this kind of day first hand with us so he'll know what to expect later. We are sticking together as a family through this as much as possible. Still, it’s a juggle. Luckily, Doc is off work and will be completely available here. So tomorrow, I’ll drop off Reo, take Doc, Aria, Rianna and myself to the clinic. We check in and start feeling our way around this new outpatient world. I'll leave shortly after 10am to head back to the school with Rianna to get Reo and then we'll head back to the clinic to be with Aria before she heads into her procedure. There is always the chance that they could take her early, but there's just as much of a chance that her procedure will be bumped until later. Key word here: FLEXIBILITY! The results of the procedure will dictate what happens the following Friday and if we need to come in more than once.
It is intimidating to me because up to this point Doc has been with me, there will be plenty of times when it won't be possible and I'll be on my own. Yes, I'll be able to ask some friends and I hope they'll be available but people have their own lives to worry about so I feel it is in my best interest to muscle up and face this as if I'll be on my own.
The other thing that has me wildly anxious is the whole thought of Aria getting an infection/fever and me having to drop everything to rush her to the hospital. I've been given a specific temperature to watch for and if she reaches that point I've been encouraged to get her to the clinic within 30 minutes. Very emergency oriented, which is completely out of my comfort zone as it is for most people. I've also been warned of many other things to look out for and to call the clinic and be prepared to come in; bleeding, bruising, vomiting, lethargy, etc..etc.. I met a woman with a 3 year old with A.L.L who said during the first 6 months she had a hospital bag packed and ready to go in her car. Great idea and I'll be doing the same. It is a terrifying thought, but it is our reality and something we absolutely just have to count on. It feels like a ticking time bomb and like I said, I'm terribly anxious about it. I'm well aware that my anxiety is based on the unknown; the 'what-if' scenarios but there it is. I’m nervous. Once again, this is a conflict between what my mind knows and what my heart feels. I will be spending more time in reflection, so I can find some peace and gain some mindfulness. The first thing I'll do is pay more attention to my breathing. I just noticed that I'm not breathing mindfully but taking short shallow breaths. I also know that once I experience an outpatient appointment, get to know the staff and how things operate I'll feel better. Right now I have no experience and thus no confidence. I'll get there. Information and experience are key ingredients to the cessation of fear.
The other thing I need to do is face the obvious and that is that Aria is doing exceptionally well! We had an eight day hospital stay. Many kids find themselves in the hospital for the entire "induction" phase, which is the phase we are in now. It is the heavy hitting chemo with a 28 day 2 times a day dose of the steroid, which is nasty ugly. So far it has been ok, but I hear it gets really bad toward the end...grumpy, moody, nasty kids...breathe!!!! just breathe!!!!! Still, Aria has tolerated the chemo well as well as her other meds. She's needed very little pain medicine in the last 24 hours and has complained of her tummy "rumbling" and "feeling funny" for which we have given her an anti-nausea med. She has a great appetite, slept through the night last night, played in the snow today for 10 minutes, played and played. Her spirits haven't been this high since Christmas! It was wonderful. She is pale, though, very, very pale but really doing well. I am reminding myself as I write this to celebrate that. Those moments of today and to erase those moments that don't yet exist! ahhhhhhhhh breathe!!!!!!! She's totally prepared for tomorrow and knows that she'll go into the procedure room and have a nice dream. She's also beginning to wrap her head around the idea that her hair is going to fall out. We've been talking about it quite a bit. I think we're going to have some kind of hair cutting party next week. I was told to prepare her that she'll notice her hair falling out probably as early as this weekend! YIKES!!! I'm not completely ok with the idea to be perfectly honest but I'm open. At least, I'm getting there..to that place of accepting the inevitable. She did mention to me this morning, "Mama, I just don't want my hair to fall out!" I told her, "Me either.. I don't want your hair to fall out but the good thing is that it will grow back and you can decide if you want long hair or short hair!" She smiled and shrugged her shoulders. We're facing that bridge and we'll cross it. I may have to create some kind of "Hair Fairy" that visits her in the night and brings special presents. I’m sure glitter will be involved. We'll see...
Reo is doing well. He lost his other front tooth this morning! VERY adorable. He keeps it so real and for that we are so grateful. In the hospital there was this amazing 'I Spy" display of all kinds of pirate things. Reo LOVED LOVED LOVED the fishing net of all things. Today I gave him a real fishing net to tell him just how proud we were of him. You would have thought I had captured the moon and handed it to him. He is such a sensitive little guy. "Look everyone! Look at my beautiful net! Oh, Mama...I just love you!" He said these things with his whole heart too. Rianna is Rianna...Can't say much more than that. She is so easy going but also has this baby orangutan thing going on. Ijust can't put her down and when I do she bends her legs up trying to wrap them around me. It is the cutest thing. She is also WAY into giving me hugs, which melts me every time!
On a much different note I had an observation today that was striking. I haven't prayed. Not once. Not even to light a candle. Not even tosend up a thought. Nothing...I'm amazed.
I want to be very clear that I don't hold God accountable for any of this. Some have shared their wonderment with me, "Why does God do these things?" at the same time they share with me the mystery of God's way that is inherent in the question. Biblical passages typically follow as some kind of "proof". Uncle Seamus, I think of you whenever I think of Proof and God in the same sentence. Makes me laugh! I've heard a lot lately that God does what He does and we don't understand it. Forgive me, but that thought has not resonated with me at all. I don't think God had any hand in this nor do I think God has had any hand in the process so far. Reo's teacher said, "Praise the Lord!" when I told her that Aria was responding so well. At the time it struck a nerve and bugged me to no end but it wasn't until the next day that I figured out why. As Aria was responding well, it never occurred to me to thank God, but instead to thank the miracle of modern medicine, as well as her amazing doctors! I feel completely indebted to them. I have not found myself bargaining with God saying things like, "God, if you spare Aria this pain and agony, I will......." It’s so weird. For me, God hasn't been in the picture at all. I don't blame Him for doing this and I don't praise Him for how things are working. I have viewed this experience as nothing more than the human experience. It is a part of being a human being. This isn't to say, however, that God doesn't exist for me but it has seriously put into question what that looks like. Mimi and Papa, (my parents) I have some guilt in admitting this but my understanding and relationship to Christianity is changing. Therefore, my view of God and what God is or isn't is also changing. This may not come as a surprise for it has been changing for the past 2 decades, but this experience has been the first real tangible examination of what God actually means to me. God has been very present in the way in which people have responded to us. That spirit, that generosity, that collective energy that forces people to connect and reflect. It is this LIFE energy that has been the most God-like for me. Do I have Faith in God's will? That is some question and the answer for me is that I have tremendous faith in Life. God is no longer this outsider looking in, this separate entity, a heavenly Father. God has become a tangible force that has connected me to Life and to all the goodness of Life because of the tremendous love people express and their shared desire to minimize suffering and maximize kindness, sincerity and truth. I am very grateful for your prayers and thoughts...I firmly believe it creates power that is beyond our understanding. Is this God? For some the answer is an unwavering , "yes" but for me, I'm very comfortable in my uncertainty for I know that whatever "it" is, it is good...
With that, I'll say goodnight and I'll let you know about the day tomorrow and all the incredible things we learned.
All my love, ~j
This photograph was taken with a cell phone in the car on the way home. Aria couldn't stand the sun in her face, which is why she's hiding under her hat!
This photograph was taken with Doc's cell phone in Aria's room the first morning of her being home. She had just woken up from a good night's sleep. I find this picture rather haunting in an exquisitely beautiful way.
One the interesting elements in this wicked shift from what I thought was real to what was surreal to what was a new reality was how easy it could be while swirling around what was enormously punishing. I had a robotic motion during those days of endless learning that it seemed almost effortless There was a strange sense of comfort taking place and I owe a great deal of that security to the myriad of professionals, who descended upon us. We were getting to know nurses very well. Dr. Angela, was becoming more and more familiar and more trusted. I finally learned her name and began calling her Dr. Trobaugh. Krista, the child life specialist assigned to Aria, visited every day and was a wonderful sounding board. There was a genuine gentility and compassion coming from nearly everyone we encountered that suddenly the thought of going home was terrifying. Being home meant doing everything on our own. It meant outpatient visits that were completely foreign. It meant rather than observing and watching this new life unfold, we were actually going to have to live it. It meant encountering other families and their kids. It meant that it was real! Leaving the hospital meant that now every aspect of our lives was going to be touched by cancer and that was a big bitter pill to swallow. Still, I was aware that leaving the hospital meant wellness to some degree and that was a mighty wind upon which to sail into this next chapter.
January 24, 2008
Subject We’re Home!!!!!
Yippppeeeeee-yaaaahhhooooooo!!!
I want to thank you all once again for the wonderful emails, letters and presents! It is so humbling. I am also deeply grateful for all the amazing words of encouragement. So many have expressed their confidence in us and you have no idea how we draw strength from that in virtually everything we are doing and facing; not the least of which comes into play every time we draw the syringe full of more medicine for Aria, knowing it may make her feel like crap and at the same time is saving her life.
We arrived home yesterday. Doc was absolutely elated. I, on the other hand, was so stressed and anxious that I could barely think straight. Being home for me is incredibly daunting. The outpatient life is going to be so challenging in many ways. We go into clinic at least once if not twice a week for the next 4 -8 weeks. Most of the appointments are for chemo and checking labs and so forth, but 'procedure' days are big. Tomorrow is one of those days. She is scheduled for another spinal tap and bone marrow biopsy at 12 30 and we are to check in at 9 am! You got it, 3 1/2 hours EARLY. This is because they need to check all her lab work and then wait to get the results, which will ultimately determine if she needs platelets or a blood transfusion to sustain her through the procedure. Then we wait some more. Then she's prepped for the procedure, followed by more waiting and so the day goes. I expect to be home by 5 pm. Reo has to be dropped off at school and picked up and then entertained for the afternoon. Yes, I will be trying to solicit some help but not for tomorrow. I want him to be able to experience this kind of day first hand with us so he'll know what to expect later. We are sticking together as a family through this as much as possible. Still, it’s a juggle. Luckily, Doc is off work and will be completely available here. So tomorrow, I’ll drop off Reo, take Doc, Aria, Rianna and myself to the clinic. We check in and start feeling our way around this new outpatient world. I'll leave shortly after 10am to head back to the school with Rianna to get Reo and then we'll head back to the clinic to be with Aria before she heads into her procedure. There is always the chance that they could take her early, but there's just as much of a chance that her procedure will be bumped until later. Key word here: FLEXIBILITY! The results of the procedure will dictate what happens the following Friday and if we need to come in more than once.
It is intimidating to me because up to this point Doc has been with me, there will be plenty of times when it won't be possible and I'll be on my own. Yes, I'll be able to ask some friends and I hope they'll be available but people have their own lives to worry about so I feel it is in my best interest to muscle up and face this as if I'll be on my own.
The other thing that has me wildly anxious is the whole thought of Aria getting an infection/fever and me having to drop everything to rush her to the hospital. I've been given a specific temperature to watch for and if she reaches that point I've been encouraged to get her to the clinic within 30 minutes. Very emergency oriented, which is completely out of my comfort zone as it is for most people. I've also been warned of many other things to look out for and to call the clinic and be prepared to come in; bleeding, bruising, vomiting, lethargy, etc..etc.. I met a woman with a 3 year old with A.L.L who said during the first 6 months she had a hospital bag packed and ready to go in her car. Great idea and I'll be doing the same. It is a terrifying thought, but it is our reality and something we absolutely just have to count on. It feels like a ticking time bomb and like I said, I'm terribly anxious about it. I'm well aware that my anxiety is based on the unknown; the 'what-if' scenarios but there it is. I’m nervous. Once again, this is a conflict between what my mind knows and what my heart feels. I will be spending more time in reflection, so I can find some peace and gain some mindfulness. The first thing I'll do is pay more attention to my breathing. I just noticed that I'm not breathing mindfully but taking short shallow breaths. I also know that once I experience an outpatient appointment, get to know the staff and how things operate I'll feel better. Right now I have no experience and thus no confidence. I'll get there. Information and experience are key ingredients to the cessation of fear.
The other thing I need to do is face the obvious and that is that Aria is doing exceptionally well! We had an eight day hospital stay. Many kids find themselves in the hospital for the entire "induction" phase, which is the phase we are in now. It is the heavy hitting chemo with a 28 day 2 times a day dose of the steroid, which is nasty ugly. So far it has been ok, but I hear it gets really bad toward the end...grumpy, moody, nasty kids...breathe!!!! just breathe!!!!! Still, Aria has tolerated the chemo well as well as her other meds. She's needed very little pain medicine in the last 24 hours and has complained of her tummy "rumbling" and "feeling funny" for which we have given her an anti-nausea med. She has a great appetite, slept through the night last night, played in the snow today for 10 minutes, played and played. Her spirits haven't been this high since Christmas! It was wonderful. She is pale, though, very, very pale but really doing well. I am reminding myself as I write this to celebrate that. Those moments of today and to erase those moments that don't yet exist! ahhhhhhhhh breathe!!!!!!! She's totally prepared for tomorrow and knows that she'll go into the procedure room and have a nice dream. She's also beginning to wrap her head around the idea that her hair is going to fall out. We've been talking about it quite a bit. I think we're going to have some kind of hair cutting party next week. I was told to prepare her that she'll notice her hair falling out probably as early as this weekend! YIKES!!! I'm not completely ok with the idea to be perfectly honest but I'm open. At least, I'm getting there..to that place of accepting the inevitable. She did mention to me this morning, "Mama, I just don't want my hair to fall out!" I told her, "Me either.. I don't want your hair to fall out but the good thing is that it will grow back and you can decide if you want long hair or short hair!" She smiled and shrugged her shoulders. We're facing that bridge and we'll cross it. I may have to create some kind of "Hair Fairy" that visits her in the night and brings special presents. I’m sure glitter will be involved. We'll see...
Reo is doing well. He lost his other front tooth this morning! VERY adorable. He keeps it so real and for that we are so grateful. In the hospital there was this amazing 'I Spy" display of all kinds of pirate things. Reo LOVED LOVED LOVED the fishing net of all things. Today I gave him a real fishing net to tell him just how proud we were of him. You would have thought I had captured the moon and handed it to him. He is such a sensitive little guy. "Look everyone! Look at my beautiful net! Oh, Mama...I just love you!" He said these things with his whole heart too. Rianna is Rianna...Can't say much more than that. She is so easy going but also has this baby orangutan thing going on. Ijust can't put her down and when I do she bends her legs up trying to wrap them around me. It is the cutest thing. She is also WAY into giving me hugs, which melts me every time!
On a much different note I had an observation today that was striking. I haven't prayed. Not once. Not even to light a candle. Not even tosend up a thought. Nothing...I'm amazed.
I want to be very clear that I don't hold God accountable for any of this. Some have shared their wonderment with me, "Why does God do these things?" at the same time they share with me the mystery of God's way that is inherent in the question. Biblical passages typically follow as some kind of "proof". Uncle Seamus, I think of you whenever I think of Proof and God in the same sentence. Makes me laugh! I've heard a lot lately that God does what He does and we don't understand it. Forgive me, but that thought has not resonated with me at all. I don't think God had any hand in this nor do I think God has had any hand in the process so far. Reo's teacher said, "Praise the Lord!" when I told her that Aria was responding so well. At the time it struck a nerve and bugged me to no end but it wasn't until the next day that I figured out why. As Aria was responding well, it never occurred to me to thank God, but instead to thank the miracle of modern medicine, as well as her amazing doctors! I feel completely indebted to them. I have not found myself bargaining with God saying things like, "God, if you spare Aria this pain and agony, I will......." It’s so weird. For me, God hasn't been in the picture at all. I don't blame Him for doing this and I don't praise Him for how things are working. I have viewed this experience as nothing more than the human experience. It is a part of being a human being. This isn't to say, however, that God doesn't exist for me but it has seriously put into question what that looks like. Mimi and Papa, (my parents) I have some guilt in admitting this but my understanding and relationship to Christianity is changing. Therefore, my view of God and what God is or isn't is also changing. This may not come as a surprise for it has been changing for the past 2 decades, but this experience has been the first real tangible examination of what God actually means to me. God has been very present in the way in which people have responded to us. That spirit, that generosity, that collective energy that forces people to connect and reflect. It is this LIFE energy that has been the most God-like for me. Do I have Faith in God's will? That is some question and the answer for me is that I have tremendous faith in Life. God is no longer this outsider looking in, this separate entity, a heavenly Father. God has become a tangible force that has connected me to Life and to all the goodness of Life because of the tremendous love people express and their shared desire to minimize suffering and maximize kindness, sincerity and truth. I am very grateful for your prayers and thoughts...I firmly believe it creates power that is beyond our understanding. Is this God? For some the answer is an unwavering , "yes" but for me, I'm very comfortable in my uncertainty for I know that whatever "it" is, it is good...
With that, I'll say goodnight and I'll let you know about the day tomorrow and all the incredible things we learned.
All my love, ~j
This photograph was taken with a cell phone in the car on the way home. Aria couldn't stand the sun in her face, which is why she's hiding under her hat!
This photograph was taken with Doc's cell phone in Aria's room the first morning of her being home. She had just woken up from a good night's sleep. I find this picture rather haunting in an exquisitely beautiful way.
Thursday, May 21, 2009
Our 8 day hospital stay
Before I launch into telling you about our hospital stay, I think it is important to let you know that I had forgotten much of what happened. The details were erased from my memory and even after looking through some photographs, I couldn’t bring into light the specifics of what I was thinking, feeling or seeing. I remembered things like Aria being in pain but I couldn’t recall what exactly that looked like or how it played out. I remember Rianna, who was 13 months old at the time, being into everything but try as I may I couldn’t remember any examples. I remember being on automatic pilot and going through motions of things I had to do and face.
If I had to describe it now I would be left using words like numb, overwhelmed, scared, sorrowful, and dread but I wouldn’t be able to tell you why I felt that way other than stating the obvious.
I have no idea what possessed me to sit down and write all the details of our days. I suppose I felt compelled to let friends and family know and didn’t want to feel like I was repeating the story dozens of times while on the phone. I also think it enabled me to process it and take it all into my being on some deeper level.
To say that it was overwhelming is such a gross understatement even though it is entirely true. I had forgotten that up until Aria’s diagnosis, she had never been to a doctor for any kind of illness. She had never taken any medicine for so much as a sniffle. She was always in perfect health. But, in the span of 3 days, she experienced a spinal tap, a bone marrow biopsy, surgery with general anesthesia so a port could be placed where she would receive all of her medication and where blood would be drawn, chest x-rays, chemotherapy, IV fluids, and narcotics for pain to name just a few. Our world was upside down in an instant and there was absolutely no time to make sense of any of it. Suddenly we were thrust in motion down a path that was not of our design or making. Everything about our life, everything, came to a grinding halt. Life as we knew it was no more and yet there was this uncontrollable urge to hang on to it with all my might because I didn’t want to embrace what we were dealt. Who would? I had to, mind you, but I didn’t want to and I thought for a brief moment that I could maintain some semblance of our old life. It didn’t take me long to realize the impossibility of that and God that pissed me off!
I spent days in the hospital with Aria and the kids reading everything that was given to me. I felt like I was in some kind of crash course where the final exam and graduation was only days away. I had to learn a lot and fast.
It is no small thing to say that I don’t know what I would have done without Doc. He was able to interpret and translate virtually everything people were telling me. Doc has an understanding of medicine that most of us don’t. He’s a physician for heaven’s sake so having him around was my life-line. My mind was like a computer processing new data and my actions were robotic trying to find a sense of routine. There was little time for reflection and self-examination. That came later and it swept me like a tsunami.
I have made a few changes to the original emails I sent including correcting typographical and some grammatical errors, but the main body of the text remains intact. When I read these emails now they have no flow to them, which depicts so perfectly what those days were like. Even though time seemed suspended and reality was creating itself anew, I felt constantly bombarded by people, information, fears, thoughts, worries, stressors and the seemingly infinite realm of ‘unknowns’. These emails were sent to give people close to us some idea of what was happening and they reflect my understanding of everything I was told at that time. I read these now and it is all so vivid and yet muddled, too.
January 18, 2008
Subject: Aria Update
Hi everyone! I thought you'd appreciate an update from me personally. Your cards have been received and are taped on the door in Aria’s room. THANK YOU so much and PLEASE keep them coming. The opening of letters is a very big boost to Aria and Reo's day. Your emails and phone messages are HUGE for me. They have offered a great distraction and have given me a little sense of "normal" as we work to define our "New Normal" mode for the next few years. Activities for Reo are a bit of a challenge right now since he is getting to watch as much television as he wants and he's become an addict as a result. Tina gave me a great idea though and that is to save all these things, activities, coloring books, puzzles and what not and will keep them in a big box and pull something special out for either Reo or Aria whenever. They will all come in so handy down the road when things get really, really hard. That brings me to updating you on Aria.
Today January 18, we got some good news and that is that her spinal tap yesterday revealed NO trace of leukemia cells in her spinal fluid. This is huge and is one less hurdle to jump and it also contributes to favoring a good prognosis. Aria had a really good day today. (this is all relative mind you) She had a rough night and was up every hour or two in pain. Some of it is post surgical stuff and her bones ache. She is on IV fluids, which fill her bladder, giving her a painful urgent sense of needing to pee. So when she wakes up she's in a panic. Once she does, she is calm again. We’re learning how to move her around to minimize her discomfort but her bone pain is severe and is now in her legs. Today she tearfully told Doc, "I've lost my might" referring to the fact that she feels weak. I'll add that she hadn't eaten much since Tuesday so it’s no wonder. This morning was a little sketchy, since she was still coming out of the fog from yesterday’s surgery to put a port in her chest where she will receive all her current and future treatments and the spinal tap she had. By the way, the spinal taps and the bone marrow biopsies are now done with her completely asleep. It isn't general anesthesia but something else they call ‘conscious sedation.’ They also add a numbing cream to any place where she's going to get poked so she doesn't feel anything at all. VERY nice!
By afternoon she was starting to perk up. She had morphine in the morning to manage her pain but had gone the entire day without any pain meds...At 5pm we had a pizza party with rootbeer. She ate and drank and was able to keep everything down. By 5 30 she needed pain meds but tolerated that process well. She also got her first chemotherapy treatment this evening. It consisted of one med that begins with a V and a steriod "Decadron", which I was told was worse than the chemo med. Apparently, it makes kids very grumpy toward the end of the overall treatment session, which in her case is daily for the next month!
She's taking other medications too to help balance side effects; stool softeners for constipation and another med to help break down acids that build up in the process of the leukemia cells dying off. All very straightforward and Aria took it all in stride. No problems. The good thing about this regime of chemo is they are not zapping her with the big gun chemo drugs. There may be some nausea but the steroid really helps boost the appetite so they don't typically see nausea until much later. Fatigue is often not a huge issue either. The steroid is a problem because of mood swings and irritability especially on procedure days, when she'll have to have a spinal tap and won't be able to eat but will be voraciously hungry. She'll be pissed. But now that we know that we can anticipate it and use all of our creative juices to distract her. In any case, I took a picture of her first of many chemo treatments and it was very, very simple. We then played in the playroom and had many visitors. When we left at 8pm she was calling me a "poop head and a butt tree" so I say she was in good spirits!
We met today with one of her Oncologists Dr. Angela (I can’t seem to be able to remember her last name!) and the other is Dr. Judy, with whom Doc interned at Children's Hospital in Seattle 11 years ago. It’s been an amazing reunion with her. Dr. Angela very gently and tenderly walked us through what our lives are going to look like for the next 2 1/2 years but more specifically the next 3 months. It is going to be nothing short of RIGOROUS! LOTS AND LOTS of appointments and procedures and treatments that will all take place on an outpatient basis. I've decided that one of my purposes in this experience is to somehow define the psychology of waiting. It will be a lot of waiting. Our patience will be tested, our creativity and our use of time to generate goodness will be tested regularly, too, but I'm certain we are equal to the task. Dr. Angela mapped it all out for us and it is very straightforward, very easy, very manageable...on paper! We are in a place right now where we are truly living one day at a time and that will have to be perfected in some sense in order to stay focused on what we have to do for months to come. It is so completely reassuring that Dr. Angela and Dr. Judy are both so positive about Aria's prognosis. I can fully admit that I'm in complete denial about the fact that she is fighting a fiercely deadly disease. So fierce and so wicked that only 50 years ago or less 100% of the kids who had it died. Now we're talking 80 - 90% cure rate. This kind of cancer is the kind that so often brings a success story to their experience as physicians. I know that a horrific outcome is out there but I refuse to go there...
Aria has several major challenges to face throughout. Her biggest challenge will be keeping infection at bay. When a fever sets in, it means she's hospitalized with IV antibiotics and we can just count on that happening. The other challenge for her will be muscle fatigue and weakness, which is temporary but can be really hard on her psyche. We'll simply have to cross that bridge when we get there. There are many, many more challenges but so often those are the unknown things that crop up as a result of what she's experiencing.
We are planning to be in the hospital for another 7 to 10 days. It could be longer depending on how well she does with her treatments. Her immune system will be suppressed here in the next few days so we'll just have to wait and see. It isn't uncommon for some kids to stay through the first month. We're just going with it. Doc and I are dividing and conquering right now. His job is the hospital front; keeping everyone on their toes, asking the questions, gathering the data, getting the information, supporting Aria medically, and making sure I have a good 3D understanding of what's going on. My job is the home front; Reo and Rianna..going to school, keeping our routines and maintaining some normal time for them. It is working really well for us right now. We have so much support. You just wouldn't believe it. The generosity of people is just beyond the beyond. I've been thinking about the families who come here alone, with limited resources. We are just so lucky!
So right now, I'm feeling pretty good. I'm up and down with my emotions. There are all kinds of new triggers that make me cry or make me laugh. I feel really strong though and confident facing this next week or 2 but when I start thinking beyond that, I get anxious. So I breathe and I come back to today and tomorrow and reflect on yesterday and I'm calm again.
I never imagined I'd be here. This was my greatest fear as I expect it is for all parents. It is so strange to walk the halls and see little bald kids going through whatever they’re going through and know that that will be Aria in the next few months. It’s heart wrenching and very real. Yet, I have great hope. I am simply not allowing any room for negative outcomes and I feel like even if something happens that we didn't want or expect that a Plan B will be put in place and all will be well again. I may be horribly naive or completely in denial but I don't think so. I feel like I'm ready to face this new life and knowing that Aria will be well again makes the journey so much easier. We've come through the really hard part of shock and grief and profound sorrow and fear. Now we have answers, we have a road map and a list of things to expect and things that we'll need to do. We've been empowered by professionals who do this for a living and have expressed nothing but optimism. With all of this, we feel like our new tool belts for coping and dealing with our new life are getting more well equipped. We're going to be ok and you needn't be afraid. That is what I tell myself!
Please keep the letters and emails coming and I certainly hope this has brought you closer to our experience. I will gladly update you when I can and I would encourage you to spread the word by forwarding this email to anyone else who might be interested in knowing about Aria. From the very bottom of our hearts, THANK YOU so much for all the warm wishes and prayers. It has meant everything to us and it is what cushions us and lifts us to face the day.
My love to you all, ~j
This is Aria falling asleep after a very long diagnostic day.
I am so hideously weary I can barely muster an automatic smile for the camera.
Aria perked up and was able to eat and enjoy bites of a giant lollipop. This was a moment to celebrate in a day filled with horrible moments and wonderful moments.
January 20, 2008
Subject: Saturday January 19, 2008
I want to begin this bit of journaling by saying thank you for your understanding when I quickly have to cut you off while on the phone. Doc and I are using our cell phones constantly now and I just don't want to miss a thing. It feels icky being abrupt but I so appreciate your understanding. It often seems like things happen along the way and I don't always get to call back for a quick update and I humbly apologize for that. I know some of you must be on edge waiting to hear from us and I'm sensitive to that and will work to find a better rhythm for giving quick calls to say no news or here's a quick summary, etc. I know information at this point in time is so important. I also realize just how helpless you are feeling and I would too if I were on your end of this spectrum. I want to be fully present to you when you call so it is a matter of getting some finesse to this new routine. At the end of the day, when I come home and after I've tucked in Reo and Rianna this writing has been cathartic and, I hope, helpful to you. I am uninterrupted at this point and I'm in a place where I can truly process the events of the day. There is a website that I may hook into to journal this process it’s kind of like a blog but right now that is not even on the radar of things to do!
Aria had a good day today and she even had some great moments. Doc told me this morning that she had a good bit of rest from about 3 30 am until 7am, which was huge for them both. She ate part of a turkey sandwich for breakfast, which stayed down, watched a movie and was in really good spirits. I called this morning and talked to her and her voice was robust and energetic. It was so uplifting. However, within an hour she crashed a little complaining that her legs hurt, which Doc thought may be a direct result of her chemo. The complaint isn't a fussy whine nor is it an all out scream. Rather Aria has developed this sort of primal squawk and will squawk and squawk with her eyes shut tight and her face grimacing. She rubs her legs and keeps them bent and tucked near her body but is constantly moving them because she's so uncomfortable. So she's squawky, horribly restless and impossible to understand. It is completely disconcerting. When I've experienced this with her she doesn't want to be touched, so soothing her in conventional ways is out of the question. We are challenged to come up with all kinds of new skills here. Doc said they finally got her calmed down with some pain meds and she went to the bathroom and she was much, much better. We arrived on the scene around 10 30 this morning, which was nice. Rianna had a nice nap at home and Reo got some nice play-time here too. I folded laundry and did some other basic chores. Aria was sound asleep when we arrived, which was great. We settled in and within an hour Doc left for a much needed and much deserved break. He was heading to the farm to do chores and catch up on "stuff". The kids and I proceeded to have an amazing day. Aria was in great spirits the entire time...great spirits all things considered...she had a few bumps in the road but nothing over the top at all.
We went to the playroom together, which was a HUGE adventure. Imagine this; I'm carrying Aria in one arm and Rianna in the other while Reo is in front of us pushing Aria's IV pole. It was quite the scene. Unfortunately, our time in the playroom was hard and I don't have the confidence right now to do it again all by myself. The problem is that Rianna is just all over the place. She can climb on these little tables and get stuck. I fear she'll fall off. She gets tangled in Aria's IV cords when she comes around to the activity table where Aria likes to make puzzles. Aria wants to get up and move around as if she isn't tethered to a pole and she can't. I don't have the confidence yet to follow her with the pole and give her more space, not to mention that Aria right now really doesn't have the strength to walk around much. Then there's Reo who is left to amuse himself. It was good for them to get out of the room for 10 minutes or so but I was completely frazzled by the time we left. When we left I picked up Aria, and let Rianna walk, who didn't want me to pick her up. Well that little munchkin has a mind of her own so she didn't want to follow us. I planned it all wrong but simply didn't anticipate that she would want to wander off on her own. As I write that I realize how stupid I am! So anyway, I'm holding Aria trying to encourage Rianna to follow but she wants to go up these little steps. I'm completely stuck. I don't feel comfortable putting Aria down, because she's so weak and I'm afraid that her IV cord isn't long enough if she has to sit on the ground for a minute. I can see Rianna is getting stuck on the stairs (there were only 2). I call to Reo to come help and at the same time I call to a nurse to help and in that instant Rianna climbs down one step but misses the other and SPLAT! Face plant!! Bummer... I took a deep breath. I asked the nurse to take Aria and I picked up Rianna who calmed down quickly. The nurse, meanwhile, asks Aria if she can walk and Aria nods yes and the 2 of them WALK back to the room together! It was wonderful!
I think these are the little things that will add up along the way making this so challenging at times. Another thing that I'll be perfecting that will be easier once we're home is the bathroom scene. Rianna is so fascinated to be in the bathroom with anyone and everyone. So imagine if you can, I am carrying Aria into the bathroom with the IV pole and here's Rianna trailing right behind, the little stinker. Well, she just has to be in the thick of things, so I'm trying to make sure she doesn't get tangled while I watch Aria to make sure she pees in the potty hat at the same time I’m trying to distract Rianna so she doesn't get her hands in the toilet or pull the toilet paper or eat the soap or trip over the shower, so on and so forth. It is a little breathtaking and at the same time, it’s hilarious because it is so REAL!! This is such real life stuff and I find myself sometimes feeling like I'm an outsider looking in and it’s truly amazing!"
Aria also introduced us to one of MANY power struggles today. She had to take some medicine (a stool softener and one other that I can't remember.) The stool softener is mixed in a drink and she can nurse it over several hours. The other medicine is a pill that she keeps under her tongue until it dissolves, which she did yesterday with no problem. Today, she didn't want to do either. Deeeeeeeep breath...because this is going to happen all the time...she will get so sick of this and refuse and refuse and refuse and we are going to have to force her but empower her at the same time. She simply doesn't have a choice and she has no control and that must really, really stink! So, I tried to think of a way to get her to take her drink that would make it seem like she was in control. I decided to give her a butterfly sticker and I asked her to place it somewhere on her cup. She would then have to drink to the top of the butterfly and then she could have a treat. Ice cream was the bribe of choice today. She told me that she'd do the other pill first, which was awesome. She decided and she took control and of course she did it beautifully. Then she placed her butterfly on her cup, which meant that she had to drink about a 1/3 of her drink, which was GREAT! It’s a big drink, let me tell you and for someone on as much IV fluid as she is, she's just not thirsty! I was so proud of her. This is the kind of stuff we are going to be dealing with for a long, long time and it’s coupled with the fact that it’s very hard that it’s happening to this little 4 year old, our daughter. So my focus now is to keep empowering her, keep giving her opportunities of control and decision making and I hope that will be healing for her in some way.
Last night Doc met a family from Bosnia whose 14 year old daughter is here with kidney failure. He gave them some fruit and told them about us. We don't know their whole story but we do know there's a lot of them...big family gathering for sure! This afternoon they were all huddled in the Ronald McDonald community room and I gave them the rest of the fruit basket. One of the women asked me if I was Dr. Layton's wife and she hugged me and told me how sorry she was to hear about Aria and gave me a little gift to give to her with a balloon. I was completely blown away. This complete stranger whose best friend's daughter is sick beyond words has the capacity to give a sick child she's never even met a gift. People are so profoundly good. She gave Aria a glass guardian angel. I know..it's breathtaking isn't it?
I'm learning so much. My spirit is being massaged in ways I could never have imagined and I am stronger and clearer as a result.
Doc called to tell me that Aria is resting well. They've had a good evening so far. She walked back from the bathroom to her bed all by herself.. HUGE! She stayed in good spirits. Let's hope it’s a good night. Doc is living his life right now in 3 hour increments and it’s hard. He has a headache, something he NEVER experiences. He's tired but like Aria, he's a warrior. My world is much different...easier in many respects....but we are still focusing on playing to each other's strengths and talking about what we need and so forth. I'm confident in that realm.
It was a good day and something I will plug into my psyche and draw from when the days are not so good. For now, I head to bed with a gentle smile, a calm mind and a willingness to go at it, head on, tomorrow!
I love you all VERY much! ~j
Henry the blue puppet came with Krista, a Child Life Specialist, to tell Aria and the rest of us all about what it's like to get ready for surgery and have a port placement. He was enchanting!
Henry taught us about surgical masks and hats and gloves. He wanted to make sure Aria wasn't scared by all the new faces she was going to see in different kinds of costumes! He was wonderful fun.
This is Aria shortly after her surgery with her port accessed and covered. She's completely exhausted.
The healing powerful of rest is really quite beautiful.
January 21, 2008
Subject: Aria
Hello everyone! First and foremost we are well. Lots of good news...lots of challenges too, but we're learning and coping as best we can. Let me say that this writing process is extremely therapeutic for me. It is my way of decompressing from the day. I won't always be able to write, but when I can it really does help me wrap my ahead around the things we were able to do and the progress we were able to witness.
Thank you for all the emails, cards and phone calls...keep them coming! They are so incredibly helpful. You have no idea. I know there's some sensitivity about not wanting to intrude, not wanting to bother us in case we're in the middle of something etc. Let me be loud and clear here.. If you want to call, PLEASE DO!! If we can't talk to you, we will either not answer the phone or we'll tell you straight away that we have to go. I think most of you have already experienced some version of that already. Please, don't sit there anxious, wondering about how we are. If you need to connect, feel free!!
Monday January 21: Praise Martin Luther King! His spirit of tenacity and perseverance has been with me all day long. His willingness to stay the course, no matter the consequence gives me a great sense of empowerment and strength.
Aria had a very rough night last night. She has not pooped in 6 days and has been taking a medicine to help with that. We switched the medicine yesterday because the first one was mixed in a big glass of juice, which she simply wasn't able to handle. She's been receiving IV fluids around the clock so she has no sensation of being thirsty since she is so well hydrated. Incidentally, they do this so that the kidneys don't have to work so hard filtering out all the leukemia cells that are dying as a result of the chemo. We call them silly cells and I have mentioned to Aria that they showed up in her body uninvited and they are unwelcome so she is taking lots of medicine to get rid of them! Aria couldn't drink all the juice and get that medicine down. Poor thing. We switched it but one of the side effects is cramping. Soooo around 3 am, she woke up in a panic because she felt like she was going to poop in her pants. Accidents of any kind for Aria are extremely traumatic. She just hates it! So this urge to poop came upon her suddenly and she was cramping and scared and nothing was coming. Doc said she just kept yelling, "I hate this!!" She was very uncomfortable and just had to ride it out. Nurses came in around 4 am to take vitals, give meds give her a good looking over. Aria fell asleep for a short time after that but was awake again around 5 am with the same feeling and same screaming. Doc, of course, was with her and subsequently wasn’t able to go back to sleep, which meant that he got about 2 hours of sleep last night. This is the 7th night in a row, by the way. Aria tried to poop but nothing really happened.
A few hours later she tried again, but this time a Social Worker showed up and wanted to talk to Doc about some information she had left us that he didn't know anything about. We've received at least 5 three ring binders from various organizations! Doc was completely distracted with Aria, while this woman was talking to him. Imagine if you will that he's sleep deprived, so in the process of carrying her to the potty her IV cord got stuck on the bed-rail and her port line plug popped out. It was just one of those things but it’s amazing that this person couldn't read the situation well enough to know that "now wasn't a good time." Aria finally went to the bathroom a little and felt better. She ate some breakfast and settled in and rested watching a movie. We showed up to her room shortly after 9 am. It was my turn now to witness her distress. Again, that urge came on and she was cramping. All this and she had to face an in room sterile procedure to put in a new plug for her port. This is called 'accessing' her. So the nurses are prepping the area while I'm in the bathroom and Doc is playing with Reo and Rianna and keeping them distracted. It is all working amazingly very well. Aria and I are in the bathroom and it is taking every ounce of strength I have not to be in tears. She is in agony. She is screaming at the top of her lungs...just screaming bloody murder and I'm encouraging her to. She’s screaming variations of "HEEEEEEEEELP!!! or HELLLLLLLLLLLLLLLLLLLLLLLP! SOMEBODY PLEASE HELP ME!!" over and over and over and over again. She is trying to catch her breath. She is saying ouch ouch ouch ouch ouch ooooowwwwie!! She's so distraught her eyes are closed and I'm just hugging her while she's sitting there on the potty. Who would ever have known that this would be one of the challenges that would need conquering? FINALLY, we have a little success and I can tell that the cramping has subsided. She just collapses in my arms and we hug and I soothe her with gentle reminders of her strength and her courage. Relief sets in and she's ready to get to her bed. It is at this point that I realize that I am completely calm. My heart is not racing. I am not sweating nor am I shaking. I am completely clear and calm. I have no idea how that came to pass. I put her back on her bed and she had to be accessed. It was here that Doc and I switched. 2 nurses and Doc were holding her down and holding her hands. It is a super quick procedure and a little poke, which she didn't feel because of a numbing cream they use. She was terrified though. The procedure, the newness, the people, everything has this energy of being too much. Fortunately, it was extremely straightforward. However I couldn't help but wonder about the lens of a 4 year old. What is she processing? She was again wailing, "Help me!! Daddy, HELP ME!!" It was here that I left the room with the baby in my arms and burst into tears. I'm in tears writing about it, remembering it. The poor thing! HOWEVER, it was over in about a minute or 2 and there was a nice ice cream sandwich on the other end and it really did help!
A few hours later she had to have BOTH legs poked with a medicine I call it Pegasus I know that's not right and I'm not sure what it is other than part of the chemo regimen. It sucked as you can imagine. She had the numbing cream on both thighs for an hour so she didn't feel a thing. She didn't even flinch when the shots went in, but the process once again, the loss of control for her, the not understanding why this is happening, and the fear. It is all so overwhelming. She was great though and this time Hershey's Kisses were waiting for her. This was the morning ride!
Doc left before the leg pokes for a much needed break, not to mention that we had a snow storm with heavy winds that left huge snowdrifts. Last night Amy buried her car in a drift trying to drive down their lane after Doc had said not to and to wait until after he plowed. He buried the tractor in the process of trying to get her out. She got out but since the tractor got buried the road didn't get plowed. He was so pissed last night but this is life! This kind of thing happens. So today he wanted to get chains for the tractor, dig it out and finish plowing the lane so Tata and another neighbor could get out. Doc was able to do all of this and I think being outside and getting some physical exercise really helped. When he arrived at the hospital this evening he was completely rejuvenated.
After our morning ride, we had an AMAZING day! Aria was pretty much wiped out but her spirits were high and we played and joked and ate and watched movies. Reo and I were even able to do a bunch of school activities while Aria and Rianna took a rest. It was lovely. Just after lunch, our Oncologist arrived for rounds and had nothing but GREAT news. Aria, for the second day now, has no trace of leukemia cells in her blood. We could see some pop up here and there in the next few days but it’s unlikely. Still, it is very good news and means that Aria is responding very well to the chemo. We know that she has to continue with the chemo over the long term because leukemia cells hide and come back with ferocity, if we don't. Furthermore, we know that we don't have equipment sensitive enough to measure the leukemia cells that are lurking still in the body. Hence the long term chemo regimen. Regardless, it is good news. Her blood counts continue to drop as is expected since the chemo attacks all the healthy cells too but they're holding their own. Right now it’s kind of a balancing act where the chemo is wiping out the good and the bad cells and at the same time the body is regenerating healthy cells again. The hope and the goal is that the body will regenerate enough good cells in time for the body to sustain itself and not need a blood transfusion. This would be a very rare thing...NOT to need a blood transfusion. But she is encouraged that Aria may just slide by that little hurdle. We'll see. It all depends on how she's feeling. Aria has been taken off IV fluids and they have stopped a couple of her medications; the stool softener and the medicine that helps reduce uric acid build up as a result of dying leukemia cells. Really good stuff! The other bit of good news is that her doctor is thinking about letting us leave TOMORROW or the next day! I was floored!! Aria is doing that well!
So tomorrow, we are meeting with an outpatient care coordinator who will walk us through exactly what we're supposed to do for the next several weeks, months and years. Aria has a spinal tap and bone marrow biopsy on Friday but it will be done as an outpatient with a full check up then. After that we go home again, obsessively watch her for fevers and bring her back the following week for more procedures and treatment. I’m not sure how often or when all the treatment and procedures will happen after that. I'll learn all that tomorrow. I'll also learn about pain management, and medications and so forth. I think all of her chemo meds and steroids are given to her in clinic and NOT at home but I’m not certain at this point.
So yeah, Aria is a champ and is doing well and we are all about to learn what our new lives are going to look like. Doc and I are surprisingly calm about it, scared to death too but calm. You know, you just do what you have to do and I'm convinced the trick is to roll with it. Doc and I have discussed many times how this process will test our patience and our sense of flexibility time and time again.
Reo meanwhile, is also a champ. There is so much advocacy stuff out there for siblings and Doc and I are very aware of Reo..."the shadow survivor". Today, he wanted to play in the playroom and I felt very stuck because I didn't want to leave Aria alone while she was sleeping and wake up alone or with a stranger and at the same time Reo is not allowed to be in the playroom unsupervised. It was hard because Reo needed this time and I so wanted to give it to him. This is a challenge. Suddenly the social worker, who read the morning situation so badly, appeared and we talked. I asked her about how I would go about getting a volunteer to come and take Reo to the playroom. She suggested that he go play in the Big Kid room on the 4th floor, which is a play area for ‘siblings only’ that is also well staffed. They were having some big party up there. The social worker volunteered to bring him there. So I asked Reo if he wanted to go and the next thing I knew, he put his hand in hers and was ready to head out the door! "Uh, excuse me!! But you'll need your slippers on and you need to hug and kiss your mama!" I reminded him. So he did and away he went. He came back an hour later with a couple of volunteers and a mini marshmallow igloo he had made, a cookie and a HUGE smile on his face. He spent the rest of the day playing with balloons and toys. It was great. Reo has many gentle hands wrapped around him. We are also enrolling him in programs for siblings too so that he never gets left out. It is very, very nice.
Rianna is a total disaster area. My God!! She has been having so much fun playing in the garbage. It is just her height and she gets into all kinds of things. UGH!! She is our comic relief. She is adorable, flexible and sweet. She's just great.
We are truly living one day at a time, sometimes hour to hour as you can appreciate by this morning's description. I don't know nor do I fully understand how it is working, but it is. Doc and I are working like a well oiled machine. Our life has simplified itself and it has only one focus right now and everything else follows along. We expect each day to bring ups and downs. I find myself in the evening taking stock of the day, reflecting on what went well and what needs some tweaking. It gives me such comfort to face the next day with freshness and clarity.
I hope this brings you all up-to-date on our lives. it is so, so hard and yet here we are doing it! I can tell you right now, it would be that much harder without all of you! So, thank you again for all the prayers, thoughts, well wishes....
All my love, ~j
Reo playing with Rianna, which is something they did for hours each day.
I feel obliged to say that in light of how tragic and shattering this experience was even in those first few days, we knew we were lucky. We could already grasp that ‘things’ could have been a whole lot worse and they weren’t. The threats were ever present and the anxiety that is partnered with what isn’t fully known and understood was also constant but we were able to find solace in knowing that there was a spectrum of severity in this new world of cancer and we were in a safer zone than a lot of other people. Still, we were strangely consumed by this new world, our view narrowing with every passing day. It was lonely and daunting despite how people reached out to us. It was hard to know how to feel and where to go with those feelings.
It would take me several days to find that place where I felt safe to pour out my heart and look at myself in the mirror and say, “This is life for you now. What are going to do?”
If I had to describe it now I would be left using words like numb, overwhelmed, scared, sorrowful, and dread but I wouldn’t be able to tell you why I felt that way other than stating the obvious.
I have no idea what possessed me to sit down and write all the details of our days. I suppose I felt compelled to let friends and family know and didn’t want to feel like I was repeating the story dozens of times while on the phone. I also think it enabled me to process it and take it all into my being on some deeper level.
To say that it was overwhelming is such a gross understatement even though it is entirely true. I had forgotten that up until Aria’s diagnosis, she had never been to a doctor for any kind of illness. She had never taken any medicine for so much as a sniffle. She was always in perfect health. But, in the span of 3 days, she experienced a spinal tap, a bone marrow biopsy, surgery with general anesthesia so a port could be placed where she would receive all of her medication and where blood would be drawn, chest x-rays, chemotherapy, IV fluids, and narcotics for pain to name just a few. Our world was upside down in an instant and there was absolutely no time to make sense of any of it. Suddenly we were thrust in motion down a path that was not of our design or making. Everything about our life, everything, came to a grinding halt. Life as we knew it was no more and yet there was this uncontrollable urge to hang on to it with all my might because I didn’t want to embrace what we were dealt. Who would? I had to, mind you, but I didn’t want to and I thought for a brief moment that I could maintain some semblance of our old life. It didn’t take me long to realize the impossibility of that and God that pissed me off!
I spent days in the hospital with Aria and the kids reading everything that was given to me. I felt like I was in some kind of crash course where the final exam and graduation was only days away. I had to learn a lot and fast.
It is no small thing to say that I don’t know what I would have done without Doc. He was able to interpret and translate virtually everything people were telling me. Doc has an understanding of medicine that most of us don’t. He’s a physician for heaven’s sake so having him around was my life-line. My mind was like a computer processing new data and my actions were robotic trying to find a sense of routine. There was little time for reflection and self-examination. That came later and it swept me like a tsunami.
I have made a few changes to the original emails I sent including correcting typographical and some grammatical errors, but the main body of the text remains intact. When I read these emails now they have no flow to them, which depicts so perfectly what those days were like. Even though time seemed suspended and reality was creating itself anew, I felt constantly bombarded by people, information, fears, thoughts, worries, stressors and the seemingly infinite realm of ‘unknowns’. These emails were sent to give people close to us some idea of what was happening and they reflect my understanding of everything I was told at that time. I read these now and it is all so vivid and yet muddled, too.
January 18, 2008
Subject: Aria Update
Hi everyone! I thought you'd appreciate an update from me personally. Your cards have been received and are taped on the door in Aria’s room. THANK YOU so much and PLEASE keep them coming. The opening of letters is a very big boost to Aria and Reo's day. Your emails and phone messages are HUGE for me. They have offered a great distraction and have given me a little sense of "normal" as we work to define our "New Normal" mode for the next few years. Activities for Reo are a bit of a challenge right now since he is getting to watch as much television as he wants and he's become an addict as a result. Tina gave me a great idea though and that is to save all these things, activities, coloring books, puzzles and what not and will keep them in a big box and pull something special out for either Reo or Aria whenever. They will all come in so handy down the road when things get really, really hard. That brings me to updating you on Aria.
Today January 18, we got some good news and that is that her spinal tap yesterday revealed NO trace of leukemia cells in her spinal fluid. This is huge and is one less hurdle to jump and it also contributes to favoring a good prognosis. Aria had a really good day today. (this is all relative mind you) She had a rough night and was up every hour or two in pain. Some of it is post surgical stuff and her bones ache. She is on IV fluids, which fill her bladder, giving her a painful urgent sense of needing to pee. So when she wakes up she's in a panic. Once she does, she is calm again. We’re learning how to move her around to minimize her discomfort but her bone pain is severe and is now in her legs. Today she tearfully told Doc, "I've lost my might" referring to the fact that she feels weak. I'll add that she hadn't eaten much since Tuesday so it’s no wonder. This morning was a little sketchy, since she was still coming out of the fog from yesterday’s surgery to put a port in her chest where she will receive all her current and future treatments and the spinal tap she had. By the way, the spinal taps and the bone marrow biopsies are now done with her completely asleep. It isn't general anesthesia but something else they call ‘conscious sedation.’ They also add a numbing cream to any place where she's going to get poked so she doesn't feel anything at all. VERY nice!
By afternoon she was starting to perk up. She had morphine in the morning to manage her pain but had gone the entire day without any pain meds...At 5pm we had a pizza party with rootbeer. She ate and drank and was able to keep everything down. By 5 30 she needed pain meds but tolerated that process well. She also got her first chemotherapy treatment this evening. It consisted of one med that begins with a V and a steriod "Decadron", which I was told was worse than the chemo med. Apparently, it makes kids very grumpy toward the end of the overall treatment session, which in her case is daily for the next month!
She's taking other medications too to help balance side effects; stool softeners for constipation and another med to help break down acids that build up in the process of the leukemia cells dying off. All very straightforward and Aria took it all in stride. No problems. The good thing about this regime of chemo is they are not zapping her with the big gun chemo drugs. There may be some nausea but the steroid really helps boost the appetite so they don't typically see nausea until much later. Fatigue is often not a huge issue either. The steroid is a problem because of mood swings and irritability especially on procedure days, when she'll have to have a spinal tap and won't be able to eat but will be voraciously hungry. She'll be pissed. But now that we know that we can anticipate it and use all of our creative juices to distract her. In any case, I took a picture of her first of many chemo treatments and it was very, very simple. We then played in the playroom and had many visitors. When we left at 8pm she was calling me a "poop head and a butt tree" so I say she was in good spirits!
We met today with one of her Oncologists Dr. Angela (I can’t seem to be able to remember her last name!) and the other is Dr. Judy, with whom Doc interned at Children's Hospital in Seattle 11 years ago. It’s been an amazing reunion with her. Dr. Angela very gently and tenderly walked us through what our lives are going to look like for the next 2 1/2 years but more specifically the next 3 months. It is going to be nothing short of RIGOROUS! LOTS AND LOTS of appointments and procedures and treatments that will all take place on an outpatient basis. I've decided that one of my purposes in this experience is to somehow define the psychology of waiting. It will be a lot of waiting. Our patience will be tested, our creativity and our use of time to generate goodness will be tested regularly, too, but I'm certain we are equal to the task. Dr. Angela mapped it all out for us and it is very straightforward, very easy, very manageable...on paper! We are in a place right now where we are truly living one day at a time and that will have to be perfected in some sense in order to stay focused on what we have to do for months to come. It is so completely reassuring that Dr. Angela and Dr. Judy are both so positive about Aria's prognosis. I can fully admit that I'm in complete denial about the fact that she is fighting a fiercely deadly disease. So fierce and so wicked that only 50 years ago or less 100% of the kids who had it died. Now we're talking 80 - 90% cure rate. This kind of cancer is the kind that so often brings a success story to their experience as physicians. I know that a horrific outcome is out there but I refuse to go there...
Aria has several major challenges to face throughout. Her biggest challenge will be keeping infection at bay. When a fever sets in, it means she's hospitalized with IV antibiotics and we can just count on that happening. The other challenge for her will be muscle fatigue and weakness, which is temporary but can be really hard on her psyche. We'll simply have to cross that bridge when we get there. There are many, many more challenges but so often those are the unknown things that crop up as a result of what she's experiencing.
We are planning to be in the hospital for another 7 to 10 days. It could be longer depending on how well she does with her treatments. Her immune system will be suppressed here in the next few days so we'll just have to wait and see. It isn't uncommon for some kids to stay through the first month. We're just going with it. Doc and I are dividing and conquering right now. His job is the hospital front; keeping everyone on their toes, asking the questions, gathering the data, getting the information, supporting Aria medically, and making sure I have a good 3D understanding of what's going on. My job is the home front; Reo and Rianna..going to school, keeping our routines and maintaining some normal time for them. It is working really well for us right now. We have so much support. You just wouldn't believe it. The generosity of people is just beyond the beyond. I've been thinking about the families who come here alone, with limited resources. We are just so lucky!
So right now, I'm feeling pretty good. I'm up and down with my emotions. There are all kinds of new triggers that make me cry or make me laugh. I feel really strong though and confident facing this next week or 2 but when I start thinking beyond that, I get anxious. So I breathe and I come back to today and tomorrow and reflect on yesterday and I'm calm again.
I never imagined I'd be here. This was my greatest fear as I expect it is for all parents. It is so strange to walk the halls and see little bald kids going through whatever they’re going through and know that that will be Aria in the next few months. It’s heart wrenching and very real. Yet, I have great hope. I am simply not allowing any room for negative outcomes and I feel like even if something happens that we didn't want or expect that a Plan B will be put in place and all will be well again. I may be horribly naive or completely in denial but I don't think so. I feel like I'm ready to face this new life and knowing that Aria will be well again makes the journey so much easier. We've come through the really hard part of shock and grief and profound sorrow and fear. Now we have answers, we have a road map and a list of things to expect and things that we'll need to do. We've been empowered by professionals who do this for a living and have expressed nothing but optimism. With all of this, we feel like our new tool belts for coping and dealing with our new life are getting more well equipped. We're going to be ok and you needn't be afraid. That is what I tell myself!
Please keep the letters and emails coming and I certainly hope this has brought you closer to our experience. I will gladly update you when I can and I would encourage you to spread the word by forwarding this email to anyone else who might be interested in knowing about Aria. From the very bottom of our hearts, THANK YOU so much for all the warm wishes and prayers. It has meant everything to us and it is what cushions us and lifts us to face the day.
My love to you all, ~j
This is Aria falling asleep after a very long diagnostic day.
I am so hideously weary I can barely muster an automatic smile for the camera.
Aria perked up and was able to eat and enjoy bites of a giant lollipop. This was a moment to celebrate in a day filled with horrible moments and wonderful moments.
January 20, 2008
Subject: Saturday January 19, 2008
I want to begin this bit of journaling by saying thank you for your understanding when I quickly have to cut you off while on the phone. Doc and I are using our cell phones constantly now and I just don't want to miss a thing. It feels icky being abrupt but I so appreciate your understanding. It often seems like things happen along the way and I don't always get to call back for a quick update and I humbly apologize for that. I know some of you must be on edge waiting to hear from us and I'm sensitive to that and will work to find a better rhythm for giving quick calls to say no news or here's a quick summary, etc. I know information at this point in time is so important. I also realize just how helpless you are feeling and I would too if I were on your end of this spectrum. I want to be fully present to you when you call so it is a matter of getting some finesse to this new routine. At the end of the day, when I come home and after I've tucked in Reo and Rianna this writing has been cathartic and, I hope, helpful to you. I am uninterrupted at this point and I'm in a place where I can truly process the events of the day. There is a website that I may hook into to journal this process it’s kind of like a blog but right now that is not even on the radar of things to do!
Aria had a good day today and she even had some great moments. Doc told me this morning that she had a good bit of rest from about 3 30 am until 7am, which was huge for them both. She ate part of a turkey sandwich for breakfast, which stayed down, watched a movie and was in really good spirits. I called this morning and talked to her and her voice was robust and energetic. It was so uplifting. However, within an hour she crashed a little complaining that her legs hurt, which Doc thought may be a direct result of her chemo. The complaint isn't a fussy whine nor is it an all out scream. Rather Aria has developed this sort of primal squawk and will squawk and squawk with her eyes shut tight and her face grimacing. She rubs her legs and keeps them bent and tucked near her body but is constantly moving them because she's so uncomfortable. So she's squawky, horribly restless and impossible to understand. It is completely disconcerting. When I've experienced this with her she doesn't want to be touched, so soothing her in conventional ways is out of the question. We are challenged to come up with all kinds of new skills here. Doc said they finally got her calmed down with some pain meds and she went to the bathroom and she was much, much better. We arrived on the scene around 10 30 this morning, which was nice. Rianna had a nice nap at home and Reo got some nice play-time here too. I folded laundry and did some other basic chores. Aria was sound asleep when we arrived, which was great. We settled in and within an hour Doc left for a much needed and much deserved break. He was heading to the farm to do chores and catch up on "stuff". The kids and I proceeded to have an amazing day. Aria was in great spirits the entire time...great spirits all things considered...she had a few bumps in the road but nothing over the top at all.
We went to the playroom together, which was a HUGE adventure. Imagine this; I'm carrying Aria in one arm and Rianna in the other while Reo is in front of us pushing Aria's IV pole. It was quite the scene. Unfortunately, our time in the playroom was hard and I don't have the confidence right now to do it again all by myself. The problem is that Rianna is just all over the place. She can climb on these little tables and get stuck. I fear she'll fall off. She gets tangled in Aria's IV cords when she comes around to the activity table where Aria likes to make puzzles. Aria wants to get up and move around as if she isn't tethered to a pole and she can't. I don't have the confidence yet to follow her with the pole and give her more space, not to mention that Aria right now really doesn't have the strength to walk around much. Then there's Reo who is left to amuse himself. It was good for them to get out of the room for 10 minutes or so but I was completely frazzled by the time we left. When we left I picked up Aria, and let Rianna walk, who didn't want me to pick her up. Well that little munchkin has a mind of her own so she didn't want to follow us. I planned it all wrong but simply didn't anticipate that she would want to wander off on her own. As I write that I realize how stupid I am! So anyway, I'm holding Aria trying to encourage Rianna to follow but she wants to go up these little steps. I'm completely stuck. I don't feel comfortable putting Aria down, because she's so weak and I'm afraid that her IV cord isn't long enough if she has to sit on the ground for a minute. I can see Rianna is getting stuck on the stairs (there were only 2). I call to Reo to come help and at the same time I call to a nurse to help and in that instant Rianna climbs down one step but misses the other and SPLAT! Face plant!! Bummer... I took a deep breath. I asked the nurse to take Aria and I picked up Rianna who calmed down quickly. The nurse, meanwhile, asks Aria if she can walk and Aria nods yes and the 2 of them WALK back to the room together! It was wonderful!
I think these are the little things that will add up along the way making this so challenging at times. Another thing that I'll be perfecting that will be easier once we're home is the bathroom scene. Rianna is so fascinated to be in the bathroom with anyone and everyone. So imagine if you can, I am carrying Aria into the bathroom with the IV pole and here's Rianna trailing right behind, the little stinker. Well, she just has to be in the thick of things, so I'm trying to make sure she doesn't get tangled while I watch Aria to make sure she pees in the potty hat at the same time I’m trying to distract Rianna so she doesn't get her hands in the toilet or pull the toilet paper or eat the soap or trip over the shower, so on and so forth. It is a little breathtaking and at the same time, it’s hilarious because it is so REAL!! This is such real life stuff and I find myself sometimes feeling like I'm an outsider looking in and it’s truly amazing!"
Aria also introduced us to one of MANY power struggles today. She had to take some medicine (a stool softener and one other that I can't remember.) The stool softener is mixed in a drink and she can nurse it over several hours. The other medicine is a pill that she keeps under her tongue until it dissolves, which she did yesterday with no problem. Today, she didn't want to do either. Deeeeeeeep breath...because this is going to happen all the time...she will get so sick of this and refuse and refuse and refuse and we are going to have to force her but empower her at the same time. She simply doesn't have a choice and she has no control and that must really, really stink! So, I tried to think of a way to get her to take her drink that would make it seem like she was in control. I decided to give her a butterfly sticker and I asked her to place it somewhere on her cup. She would then have to drink to the top of the butterfly and then she could have a treat. Ice cream was the bribe of choice today. She told me that she'd do the other pill first, which was awesome. She decided and she took control and of course she did it beautifully. Then she placed her butterfly on her cup, which meant that she had to drink about a 1/3 of her drink, which was GREAT! It’s a big drink, let me tell you and for someone on as much IV fluid as she is, she's just not thirsty! I was so proud of her. This is the kind of stuff we are going to be dealing with for a long, long time and it’s coupled with the fact that it’s very hard that it’s happening to this little 4 year old, our daughter. So my focus now is to keep empowering her, keep giving her opportunities of control and decision making and I hope that will be healing for her in some way.
Last night Doc met a family from Bosnia whose 14 year old daughter is here with kidney failure. He gave them some fruit and told them about us. We don't know their whole story but we do know there's a lot of them...big family gathering for sure! This afternoon they were all huddled in the Ronald McDonald community room and I gave them the rest of the fruit basket. One of the women asked me if I was Dr. Layton's wife and she hugged me and told me how sorry she was to hear about Aria and gave me a little gift to give to her with a balloon. I was completely blown away. This complete stranger whose best friend's daughter is sick beyond words has the capacity to give a sick child she's never even met a gift. People are so profoundly good. She gave Aria a glass guardian angel. I know..it's breathtaking isn't it?
I'm learning so much. My spirit is being massaged in ways I could never have imagined and I am stronger and clearer as a result.
Doc called to tell me that Aria is resting well. They've had a good evening so far. She walked back from the bathroom to her bed all by herself.. HUGE! She stayed in good spirits. Let's hope it’s a good night. Doc is living his life right now in 3 hour increments and it’s hard. He has a headache, something he NEVER experiences. He's tired but like Aria, he's a warrior. My world is much different...easier in many respects....but we are still focusing on playing to each other's strengths and talking about what we need and so forth. I'm confident in that realm.
It was a good day and something I will plug into my psyche and draw from when the days are not so good. For now, I head to bed with a gentle smile, a calm mind and a willingness to go at it, head on, tomorrow!
I love you all VERY much! ~j
Henry the blue puppet came with Krista, a Child Life Specialist, to tell Aria and the rest of us all about what it's like to get ready for surgery and have a port placement. He was enchanting!
Henry taught us about surgical masks and hats and gloves. He wanted to make sure Aria wasn't scared by all the new faces she was going to see in different kinds of costumes! He was wonderful fun.
This is Aria shortly after her surgery with her port accessed and covered. She's completely exhausted.
The healing powerful of rest is really quite beautiful.
January 21, 2008
Subject: Aria
Hello everyone! First and foremost we are well. Lots of good news...lots of challenges too, but we're learning and coping as best we can. Let me say that this writing process is extremely therapeutic for me. It is my way of decompressing from the day. I won't always be able to write, but when I can it really does help me wrap my ahead around the things we were able to do and the progress we were able to witness.
Thank you for all the emails, cards and phone calls...keep them coming! They are so incredibly helpful. You have no idea. I know there's some sensitivity about not wanting to intrude, not wanting to bother us in case we're in the middle of something etc. Let me be loud and clear here.. If you want to call, PLEASE DO!! If we can't talk to you, we will either not answer the phone or we'll tell you straight away that we have to go. I think most of you have already experienced some version of that already. Please, don't sit there anxious, wondering about how we are. If you need to connect, feel free!!
Monday January 21: Praise Martin Luther King! His spirit of tenacity and perseverance has been with me all day long. His willingness to stay the course, no matter the consequence gives me a great sense of empowerment and strength.
Aria had a very rough night last night. She has not pooped in 6 days and has been taking a medicine to help with that. We switched the medicine yesterday because the first one was mixed in a big glass of juice, which she simply wasn't able to handle. She's been receiving IV fluids around the clock so she has no sensation of being thirsty since she is so well hydrated. Incidentally, they do this so that the kidneys don't have to work so hard filtering out all the leukemia cells that are dying as a result of the chemo. We call them silly cells and I have mentioned to Aria that they showed up in her body uninvited and they are unwelcome so she is taking lots of medicine to get rid of them! Aria couldn't drink all the juice and get that medicine down. Poor thing. We switched it but one of the side effects is cramping. Soooo around 3 am, she woke up in a panic because she felt like she was going to poop in her pants. Accidents of any kind for Aria are extremely traumatic. She just hates it! So this urge to poop came upon her suddenly and she was cramping and scared and nothing was coming. Doc said she just kept yelling, "I hate this!!" She was very uncomfortable and just had to ride it out. Nurses came in around 4 am to take vitals, give meds give her a good looking over. Aria fell asleep for a short time after that but was awake again around 5 am with the same feeling and same screaming. Doc, of course, was with her and subsequently wasn’t able to go back to sleep, which meant that he got about 2 hours of sleep last night. This is the 7th night in a row, by the way. Aria tried to poop but nothing really happened.
A few hours later she tried again, but this time a Social Worker showed up and wanted to talk to Doc about some information she had left us that he didn't know anything about. We've received at least 5 three ring binders from various organizations! Doc was completely distracted with Aria, while this woman was talking to him. Imagine if you will that he's sleep deprived, so in the process of carrying her to the potty her IV cord got stuck on the bed-rail and her port line plug popped out. It was just one of those things but it’s amazing that this person couldn't read the situation well enough to know that "now wasn't a good time." Aria finally went to the bathroom a little and felt better. She ate some breakfast and settled in and rested watching a movie. We showed up to her room shortly after 9 am. It was my turn now to witness her distress. Again, that urge came on and she was cramping. All this and she had to face an in room sterile procedure to put in a new plug for her port. This is called 'accessing' her. So the nurses are prepping the area while I'm in the bathroom and Doc is playing with Reo and Rianna and keeping them distracted. It is all working amazingly very well. Aria and I are in the bathroom and it is taking every ounce of strength I have not to be in tears. She is in agony. She is screaming at the top of her lungs...just screaming bloody murder and I'm encouraging her to. She’s screaming variations of "HEEEEEEEEELP!!! or HELLLLLLLLLLLLLLLLLLLLLLLP! SOMEBODY PLEASE HELP ME!!" over and over and over and over again. She is trying to catch her breath. She is saying ouch ouch ouch ouch ouch ooooowwwwie!! She's so distraught her eyes are closed and I'm just hugging her while she's sitting there on the potty. Who would ever have known that this would be one of the challenges that would need conquering? FINALLY, we have a little success and I can tell that the cramping has subsided. She just collapses in my arms and we hug and I soothe her with gentle reminders of her strength and her courage. Relief sets in and she's ready to get to her bed. It is at this point that I realize that I am completely calm. My heart is not racing. I am not sweating nor am I shaking. I am completely clear and calm. I have no idea how that came to pass. I put her back on her bed and she had to be accessed. It was here that Doc and I switched. 2 nurses and Doc were holding her down and holding her hands. It is a super quick procedure and a little poke, which she didn't feel because of a numbing cream they use. She was terrified though. The procedure, the newness, the people, everything has this energy of being too much. Fortunately, it was extremely straightforward. However I couldn't help but wonder about the lens of a 4 year old. What is she processing? She was again wailing, "Help me!! Daddy, HELP ME!!" It was here that I left the room with the baby in my arms and burst into tears. I'm in tears writing about it, remembering it. The poor thing! HOWEVER, it was over in about a minute or 2 and there was a nice ice cream sandwich on the other end and it really did help!
A few hours later she had to have BOTH legs poked with a medicine I call it Pegasus I know that's not right and I'm not sure what it is other than part of the chemo regimen. It sucked as you can imagine. She had the numbing cream on both thighs for an hour so she didn't feel a thing. She didn't even flinch when the shots went in, but the process once again, the loss of control for her, the not understanding why this is happening, and the fear. It is all so overwhelming. She was great though and this time Hershey's Kisses were waiting for her. This was the morning ride!
Doc left before the leg pokes for a much needed break, not to mention that we had a snow storm with heavy winds that left huge snowdrifts. Last night Amy buried her car in a drift trying to drive down their lane after Doc had said not to and to wait until after he plowed. He buried the tractor in the process of trying to get her out. She got out but since the tractor got buried the road didn't get plowed. He was so pissed last night but this is life! This kind of thing happens. So today he wanted to get chains for the tractor, dig it out and finish plowing the lane so Tata and another neighbor could get out. Doc was able to do all of this and I think being outside and getting some physical exercise really helped. When he arrived at the hospital this evening he was completely rejuvenated.
After our morning ride, we had an AMAZING day! Aria was pretty much wiped out but her spirits were high and we played and joked and ate and watched movies. Reo and I were even able to do a bunch of school activities while Aria and Rianna took a rest. It was lovely. Just after lunch, our Oncologist arrived for rounds and had nothing but GREAT news. Aria, for the second day now, has no trace of leukemia cells in her blood. We could see some pop up here and there in the next few days but it’s unlikely. Still, it is very good news and means that Aria is responding very well to the chemo. We know that she has to continue with the chemo over the long term because leukemia cells hide and come back with ferocity, if we don't. Furthermore, we know that we don't have equipment sensitive enough to measure the leukemia cells that are lurking still in the body. Hence the long term chemo regimen. Regardless, it is good news. Her blood counts continue to drop as is expected since the chemo attacks all the healthy cells too but they're holding their own. Right now it’s kind of a balancing act where the chemo is wiping out the good and the bad cells and at the same time the body is regenerating healthy cells again. The hope and the goal is that the body will regenerate enough good cells in time for the body to sustain itself and not need a blood transfusion. This would be a very rare thing...NOT to need a blood transfusion. But she is encouraged that Aria may just slide by that little hurdle. We'll see. It all depends on how she's feeling. Aria has been taken off IV fluids and they have stopped a couple of her medications; the stool softener and the medicine that helps reduce uric acid build up as a result of dying leukemia cells. Really good stuff! The other bit of good news is that her doctor is thinking about letting us leave TOMORROW or the next day! I was floored!! Aria is doing that well!
So tomorrow, we are meeting with an outpatient care coordinator who will walk us through exactly what we're supposed to do for the next several weeks, months and years. Aria has a spinal tap and bone marrow biopsy on Friday but it will be done as an outpatient with a full check up then. After that we go home again, obsessively watch her for fevers and bring her back the following week for more procedures and treatment. I’m not sure how often or when all the treatment and procedures will happen after that. I'll learn all that tomorrow. I'll also learn about pain management, and medications and so forth. I think all of her chemo meds and steroids are given to her in clinic and NOT at home but I’m not certain at this point.
So yeah, Aria is a champ and is doing well and we are all about to learn what our new lives are going to look like. Doc and I are surprisingly calm about it, scared to death too but calm. You know, you just do what you have to do and I'm convinced the trick is to roll with it. Doc and I have discussed many times how this process will test our patience and our sense of flexibility time and time again.
Reo meanwhile, is also a champ. There is so much advocacy stuff out there for siblings and Doc and I are very aware of Reo..."the shadow survivor". Today, he wanted to play in the playroom and I felt very stuck because I didn't want to leave Aria alone while she was sleeping and wake up alone or with a stranger and at the same time Reo is not allowed to be in the playroom unsupervised. It was hard because Reo needed this time and I so wanted to give it to him. This is a challenge. Suddenly the social worker, who read the morning situation so badly, appeared and we talked. I asked her about how I would go about getting a volunteer to come and take Reo to the playroom. She suggested that he go play in the Big Kid room on the 4th floor, which is a play area for ‘siblings only’ that is also well staffed. They were having some big party up there. The social worker volunteered to bring him there. So I asked Reo if he wanted to go and the next thing I knew, he put his hand in hers and was ready to head out the door! "Uh, excuse me!! But you'll need your slippers on and you need to hug and kiss your mama!" I reminded him. So he did and away he went. He came back an hour later with a couple of volunteers and a mini marshmallow igloo he had made, a cookie and a HUGE smile on his face. He spent the rest of the day playing with balloons and toys. It was great. Reo has many gentle hands wrapped around him. We are also enrolling him in programs for siblings too so that he never gets left out. It is very, very nice.
Rianna is a total disaster area. My God!! She has been having so much fun playing in the garbage. It is just her height and she gets into all kinds of things. UGH!! She is our comic relief. She is adorable, flexible and sweet. She's just great.
We are truly living one day at a time, sometimes hour to hour as you can appreciate by this morning's description. I don't know nor do I fully understand how it is working, but it is. Doc and I are working like a well oiled machine. Our life has simplified itself and it has only one focus right now and everything else follows along. We expect each day to bring ups and downs. I find myself in the evening taking stock of the day, reflecting on what went well and what needs some tweaking. It gives me such comfort to face the next day with freshness and clarity.
I hope this brings you all up-to-date on our lives. it is so, so hard and yet here we are doing it! I can tell you right now, it would be that much harder without all of you! So, thank you again for all the prayers, thoughts, well wishes....
All my love, ~j
Reo playing with Rianna, which is something they did for hours each day.
I feel obliged to say that in light of how tragic and shattering this experience was even in those first few days, we knew we were lucky. We could already grasp that ‘things’ could have been a whole lot worse and they weren’t. The threats were ever present and the anxiety that is partnered with what isn’t fully known and understood was also constant but we were able to find solace in knowing that there was a spectrum of severity in this new world of cancer and we were in a safer zone than a lot of other people. Still, we were strangely consumed by this new world, our view narrowing with every passing day. It was lonely and daunting despite how people reached out to us. It was hard to know how to feel and where to go with those feelings.
It would take me several days to find that place where I felt safe to pour out my heart and look at myself in the mirror and say, “This is life for you now. What are going to do?”
Wednesday, May 20, 2009
Those first few days
Tuesday January 15, 2008 will remain a vivid memory for me for some time I suspect. It isn’t something I dwell upon but it is something I keep rather close to me. It is a part of me whether I want it to be or not and by keeping it close I feel as if I can honor the journey we have been forced upon. When I adopt that perspective it helps me remain open to the many, many people on similar journeys and thus I can honor them, too.
Still, it took me several days to sit down and document the sequence of events of that day so consumed was I with trying to find ground beneath my feet.
As we prepared to take Aria to the hospital and confront head-on such an enormous fear I remember having this image of playing the game “chicken” and riding in some kind of vehicle knowing full well that I was not going to be able to turn away at the last minute. It was this constant gut wrenching feeling driving closer and closer to the hospital knowing impact was imminent. I remember coming off the elevator and seeing the sign “oncology” and just wanting to run away and vomit somewhere. But I couldn’t. I had to stay and go in. It was as simple as that. I had no choice but to face the enormity of what I didn’t yet understand and in a very perverted way, this made moving forward and going through those doors easier somehow. I didn’t think about what would happen if I didn’t go. I simply knew I had to and so I did.
I suppose that moment offered my first lesson in dichotomy, opposites. Opening those doors to the clinic in an instant symbolized opening a new world for me. When I heard the click and clatter of the metal on the doors it boomed in my head and I knew the crash had happened. I was devastated and crushed with the impact but at the same time I was well. Going through those doors was the hardest thing I have ever had to do in my life and it was also the easiest thing to do. My mind was reeling with thoughts and worry. I was terrified. My mind was also completely void and open to whatever was going to happen and I was calm in an eerie ‘the storm’s-a-comin’ kind of way. There was no stopping this train and I was on for the ride.
When we were admitted, I called my parents. I told my mom that we were in the hospital because, “Mom, they think Aria has leukemia.” ‘They’, nurses, doctors, specialists and support staff, were still these suspicious people I didn’t know but sort of trusted. I wanted to be surrounded by them and at the same time left alone. I wanted to hear what they had to say but at the same couldn’t help but think, “If one more person comes in here with pity and understanding, I think I’m going to scream!” The teetering emotions I had were like nothing I had experienced before.
My mom was in tears and I could imagine her fumbling for a place to sit. The shock of it is like flipping a switch. One minute the light is on bright and then ‘flip’ darkness pervades. One minute, life for her was full of purpose and direction and in an instant she was helpless, scared, sad, and just plain horrified.
I remember feeling sick to my stomach for the entire day. I was thirsty and yet a drop of water in my mouth was always threatening to turn my gut into a heaving eruption. As I sit here remembering I can’t escape my mind, which is saying, “God, I hope I never have to experience ANYTHING like that again!” I feel compelled to remind my mind that if I had to, I would, and regardless of circumstance or outcome, I would be fine. I know that now. I’m reminding myself but at the same time, I hope I’m reminding you, too.
We arrived at the oncology clinic for a 1 30 appointment and I didn’t leave the hospital until 8pm that evening. I took Reo and Rianna straight to bed and joined them. It wasn’t until the morning that I wrote to a few people before heading to the hospital to tell them what was happening. My emails then lack the narrative they have now. I was in a place of disseminating information and didn’t have a real grasp of its weave. So I sent out threads here and there describing what we were doing.
The first email I sent was to my Goddesses. I had asked my parents the day before to call my brothers and sisters and anyone else they could think of. It was so overwhelming that I hardly knew where to begin.
January 16, 2008
Subject: My Aria…it is bad news
Goddesses, forgive me for writing this news in an email but I'm so numb right now... It looks like my Aria has leukemia. After some blood work that was done on Monday, we got a call yesterday that she needed to be admitted to the hospital immediately...had an appointment with an Oncologist yesterday too. She thinks, but the tests are not definitive yet that Aria has the most common kind of pediatric leukemia, A.L.L. it is treatable and in most cases cure-able. You have no idea how I am just hanging on to that right now. Today, at 1 30 she goes in for a bone marrow biopsy. She will be under for that procedure and we should have the results soon..later today, tmw, I don't know...then she will begin rigorous treatments....We will be staying in the hospital for at least 2 weeks, maybe less if everything goes exceptionally well but longer if she starts to develop a fever, which is very common. I came home with Reo and Rianna last night and slept here. Doc stayed with Aria..Tonight, we'll see what we do. We are staying in a room where we could all be there.. I don't know..one day at a time. I'm trying to maintain the homefront and give Reo a little sense of normal by keeping his routine and going to school and so forth. The pit in my stomach is so huge..I am so sick to my stomach. I'm trying very hard to find some courage here but right now I am absolutely reeling! Please keep us in your thoughts and I will keep you posted when I can.
Much love, ~qg
Once the news about Aria got out, it spread like wild fire. Suddenly emails were flooding in and the phone rang and cards came in the mail. It was incredible and the diversion it offered was immensely healing. The expression of love, prayer, hope, perseverance, understanding and the like was all tremendously powerful.
January 16, 2008 (from my mother-in-law)
I don't know what to say except that we are very, very sad and know that your hearts are breaking for our precious little girl. Already many people are praying. We're praying for Reo and Rianna too. They must be very stressed in their own way.
We'll be waiting for further news today. Wish we could be there with hugs and shoulders to lean on. As I said last night, if and when we can be of help, there is no reason we can't come and quickly.
Love,
Mom/GB
January 16, 2008 (from my twin brother and his family)
Julie and Doc – Papa gave us the news about Aria. We are sure you know this, but we love you guys and are sending our warm wishes, prayers, and love to all of you. We are here for help and support with whatever you need. We would love to come see all of you and help out in any way we can. But we understand a bit of space may be what you prefer right now. We will call this weekend when I return from Wake Island and am back in Anchorage so Tina and I can both be on the phone. We love you guys so much I can’t even begin to express our anguish over this news and the depth of our hope that Aria will receive the treatment she needs for a recovery. If you need anything, absolutely anything, no matter how big or small, please let us know. We love you and will do anything at all to help in any way.
January 16, 2008 (from one of my Goddesses)
Queen! Im holding you... Much much much love, I’m at a loss for words and am so relieved they caught it. Jeannie will call you because she knows someone who totally recovered from this. I know the process is HELL right now because no feeling, just the hanging on..and that's what you can do. Surrounding you with light.
It’s strange but very early on I felt this weird kind of heightened awareness. People would say things or do things that didn’t feel right and rather than cringe in silence I tried to let them know how things affected me either positively or negatively. It was my way of encouraging people NOT to second-guess themselves and to simply say and do whatever came from their hearts. One of my goddesses sent me this picture and it was too much for me. This is an email I wrote to her about it.
January 16, 2008
Dear Goddesses!! Thank you for sending this picture..this beautiful reminder of joy and delight!! It is a little too much for me right now and makes me incredibly sad..so I'm going to delete the message...PLEASE don't take any offense..that's just my gut reaction right now.. I have this picture too and will one day very soon want to look at it again..for now, I'm in such a foreign place and learning all kinds of new triggers. PLEASE don't hesitate sending me more pictures, thoughts, words, poems etc..etc..anything that strikes you at the moment...don't worry about how you think anything will make me feel...it all feels wonderful and horribly sad at the same time..the last thing I need is any hesitation on your part for fear of my feelings, which are all over the place right now. I rest so comfortably knowing how much you love us and care for us and keep us close so I know that anything and everything you do comes from such a pure and wonderful place. I am SO SO grateful for it!!
I'm off to run to the grocery store and then pick up Reo..will let you know more when I know more. Doc was visiting with a family support person this morning to talk to us about hair loss, balding and so forth. I'm so sick with sorrow, I don't even know where to begin. One voice is telling me to be strong..and another is saying "release...let it out." I'm thinking very deeply about balance, which you know is so key to my very existence...I'm also thinking about letting go in terms of control and my illusion of it...trust is another thought.....I can't wait to see Aria and hold her..so I'll go now with that thought!
I love you all so very much and you have no idea the kind of life line you hold for me!
~qg
My goddess’s response to me was, naturally, of complete understanding! She reminded me that she needed and wanted the picture for herself as a daily reminder of healing and well-being. She just sent me the picture again so I could include it here. This is the first time I’ve looked at it since and it fills me with such overwhelming joy. The promise and the hope that I sense are immense!
The next few days were a blur and I remember just flowing with it. Whatever I was told to do, I did. It was a deluge of information and newness and I was simply trying to stay afloat. I began writing in earnest the moment I felt like I had found a foot-hold. How people come to that place of security, I’m sure varies. When people find that place also varies, so there’s no advice I can offer in that regard. What I can tell you with complete confidence is that you will find that place. You will feel as if the ground is beneath you once again. You will see your direction. You may not want to go, but you will because you must. You may stumble and you may falter but you will continue on. You will have significant times of doubt and insecurity coupled with many moments of confidence and assurance. This is all part of the journey, whatever that journey is. For me the journey was just the beginning.
Still, it took me several days to sit down and document the sequence of events of that day so consumed was I with trying to find ground beneath my feet.
As we prepared to take Aria to the hospital and confront head-on such an enormous fear I remember having this image of playing the game “chicken” and riding in some kind of vehicle knowing full well that I was not going to be able to turn away at the last minute. It was this constant gut wrenching feeling driving closer and closer to the hospital knowing impact was imminent. I remember coming off the elevator and seeing the sign “oncology” and just wanting to run away and vomit somewhere. But I couldn’t. I had to stay and go in. It was as simple as that. I had no choice but to face the enormity of what I didn’t yet understand and in a very perverted way, this made moving forward and going through those doors easier somehow. I didn’t think about what would happen if I didn’t go. I simply knew I had to and so I did.
I suppose that moment offered my first lesson in dichotomy, opposites. Opening those doors to the clinic in an instant symbolized opening a new world for me. When I heard the click and clatter of the metal on the doors it boomed in my head and I knew the crash had happened. I was devastated and crushed with the impact but at the same time I was well. Going through those doors was the hardest thing I have ever had to do in my life and it was also the easiest thing to do. My mind was reeling with thoughts and worry. I was terrified. My mind was also completely void and open to whatever was going to happen and I was calm in an eerie ‘the storm’s-a-comin’ kind of way. There was no stopping this train and I was on for the ride.
When we were admitted, I called my parents. I told my mom that we were in the hospital because, “Mom, they think Aria has leukemia.” ‘They’, nurses, doctors, specialists and support staff, were still these suspicious people I didn’t know but sort of trusted. I wanted to be surrounded by them and at the same time left alone. I wanted to hear what they had to say but at the same couldn’t help but think, “If one more person comes in here with pity and understanding, I think I’m going to scream!” The teetering emotions I had were like nothing I had experienced before.
My mom was in tears and I could imagine her fumbling for a place to sit. The shock of it is like flipping a switch. One minute the light is on bright and then ‘flip’ darkness pervades. One minute, life for her was full of purpose and direction and in an instant she was helpless, scared, sad, and just plain horrified.
I remember feeling sick to my stomach for the entire day. I was thirsty and yet a drop of water in my mouth was always threatening to turn my gut into a heaving eruption. As I sit here remembering I can’t escape my mind, which is saying, “God, I hope I never have to experience ANYTHING like that again!” I feel compelled to remind my mind that if I had to, I would, and regardless of circumstance or outcome, I would be fine. I know that now. I’m reminding myself but at the same time, I hope I’m reminding you, too.
We arrived at the oncology clinic for a 1 30 appointment and I didn’t leave the hospital until 8pm that evening. I took Reo and Rianna straight to bed and joined them. It wasn’t until the morning that I wrote to a few people before heading to the hospital to tell them what was happening. My emails then lack the narrative they have now. I was in a place of disseminating information and didn’t have a real grasp of its weave. So I sent out threads here and there describing what we were doing.
The first email I sent was to my Goddesses. I had asked my parents the day before to call my brothers and sisters and anyone else they could think of. It was so overwhelming that I hardly knew where to begin.
January 16, 2008
Subject: My Aria…it is bad news
Goddesses, forgive me for writing this news in an email but I'm so numb right now... It looks like my Aria has leukemia. After some blood work that was done on Monday, we got a call yesterday that she needed to be admitted to the hospital immediately...had an appointment with an Oncologist yesterday too. She thinks, but the tests are not definitive yet that Aria has the most common kind of pediatric leukemia, A.L.L. it is treatable and in most cases cure-able. You have no idea how I am just hanging on to that right now. Today, at 1 30 she goes in for a bone marrow biopsy. She will be under for that procedure and we should have the results soon..later today, tmw, I don't know...then she will begin rigorous treatments....We will be staying in the hospital for at least 2 weeks, maybe less if everything goes exceptionally well but longer if she starts to develop a fever, which is very common. I came home with Reo and Rianna last night and slept here. Doc stayed with Aria..Tonight, we'll see what we do. We are staying in a room where we could all be there.. I don't know..one day at a time. I'm trying to maintain the homefront and give Reo a little sense of normal by keeping his routine and going to school and so forth. The pit in my stomach is so huge..I am so sick to my stomach. I'm trying very hard to find some courage here but right now I am absolutely reeling! Please keep us in your thoughts and I will keep you posted when I can.
Much love, ~qg
Once the news about Aria got out, it spread like wild fire. Suddenly emails were flooding in and the phone rang and cards came in the mail. It was incredible and the diversion it offered was immensely healing. The expression of love, prayer, hope, perseverance, understanding and the like was all tremendously powerful.
January 16, 2008 (from my mother-in-law)
I don't know what to say except that we are very, very sad and know that your hearts are breaking for our precious little girl. Already many people are praying. We're praying for Reo and Rianna too. They must be very stressed in their own way.
We'll be waiting for further news today. Wish we could be there with hugs and shoulders to lean on. As I said last night, if and when we can be of help, there is no reason we can't come and quickly.
Love,
Mom/GB
January 16, 2008 (from my twin brother and his family)
Julie and Doc – Papa gave us the news about Aria. We are sure you know this, but we love you guys and are sending our warm wishes, prayers, and love to all of you. We are here for help and support with whatever you need. We would love to come see all of you and help out in any way we can. But we understand a bit of space may be what you prefer right now. We will call this weekend when I return from Wake Island and am back in Anchorage so Tina and I can both be on the phone. We love you guys so much I can’t even begin to express our anguish over this news and the depth of our hope that Aria will receive the treatment she needs for a recovery. If you need anything, absolutely anything, no matter how big or small, please let us know. We love you and will do anything at all to help in any way.
January 16, 2008 (from one of my Goddesses)
Queen! Im holding you... Much much much love, I’m at a loss for words and am so relieved they caught it. Jeannie will call you because she knows someone who totally recovered from this. I know the process is HELL right now because no feeling, just the hanging on..and that's what you can do. Surrounding you with light.
It’s strange but very early on I felt this weird kind of heightened awareness. People would say things or do things that didn’t feel right and rather than cringe in silence I tried to let them know how things affected me either positively or negatively. It was my way of encouraging people NOT to second-guess themselves and to simply say and do whatever came from their hearts. One of my goddesses sent me this picture and it was too much for me. This is an email I wrote to her about it.
January 16, 2008
Dear Goddesses!! Thank you for sending this picture..this beautiful reminder of joy and delight!! It is a little too much for me right now and makes me incredibly sad..so I'm going to delete the message...PLEASE don't take any offense..that's just my gut reaction right now.. I have this picture too and will one day very soon want to look at it again..for now, I'm in such a foreign place and learning all kinds of new triggers. PLEASE don't hesitate sending me more pictures, thoughts, words, poems etc..etc..anything that strikes you at the moment...don't worry about how you think anything will make me feel...it all feels wonderful and horribly sad at the same time..the last thing I need is any hesitation on your part for fear of my feelings, which are all over the place right now. I rest so comfortably knowing how much you love us and care for us and keep us close so I know that anything and everything you do comes from such a pure and wonderful place. I am SO SO grateful for it!!
I'm off to run to the grocery store and then pick up Reo..will let you know more when I know more. Doc was visiting with a family support person this morning to talk to us about hair loss, balding and so forth. I'm so sick with sorrow, I don't even know where to begin. One voice is telling me to be strong..and another is saying "release...let it out." I'm thinking very deeply about balance, which you know is so key to my very existence...I'm also thinking about letting go in terms of control and my illusion of it...trust is another thought.....I can't wait to see Aria and hold her..so I'll go now with that thought!
I love you all so very much and you have no idea the kind of life line you hold for me!
~qg
My goddess’s response to me was, naturally, of complete understanding! She reminded me that she needed and wanted the picture for herself as a daily reminder of healing and well-being. She just sent me the picture again so I could include it here. This is the first time I’ve looked at it since and it fills me with such overwhelming joy. The promise and the hope that I sense are immense!
The next few days were a blur and I remember just flowing with it. Whatever I was told to do, I did. It was a deluge of information and newness and I was simply trying to stay afloat. I began writing in earnest the moment I felt like I had found a foot-hold. How people come to that place of security, I’m sure varies. When people find that place also varies, so there’s no advice I can offer in that regard. What I can tell you with complete confidence is that you will find that place. You will feel as if the ground is beneath you once again. You will see your direction. You may not want to go, but you will because you must. You may stumble and you may falter but you will continue on. You will have significant times of doubt and insecurity coupled with many moments of confidence and assurance. This is all part of the journey, whatever that journey is. For me the journey was just the beginning.
Subscribe to:
Posts (Atom)