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?”

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.

Early Signs

It was Friday, December 21, 2007. The kids and I had gone to a jumping castle gym where they bounced and frolicked for a few hours. Naturally, they all took a tumble that brought some temporary tears but for the most part, they had a wonderful time. We went out to lunch and then ran a few errands that would finish off the last of our Christmas ‘to do’s’. It was an extraordinarily ordinary day until…

I was unbuckling Aria’s car-seat seat belt and pulling her toward me to get her out of the car when she shrieked, “OW! Mama, you just bent my arm!” I was horrified thinking that I had caught her arm in the seatbelt and yank on her in some odd way. She was in tears and I was checking her arm to make sure I hadn’t done something. She recovered quickly and we went into a store and that was that. I thought it was over.

She didn’t complain about her right arm and shoulder again until later in the evening. She was walking around holding her arm bent on her chest as if in an invisible cast, protecting it. Doc checked her thoroughly for a dislocation, a broken bone or swelling of some kind to give us a hint as to what was happening. Naturally, I was devastated and completely confused to think that I might have used a force capable of causing a serious injury. It didn’t seem possible to me because I had pulled her out of the car no different than the hundreds of other times I’ve pulled of the car. It was so strange and unnerving.

Aria is a sunny beautiful little girl full of bounding energy and creativity. Seeing her in tears, whining and complaining was a real departure and it was a little scary because we couldn’t find any obvious cause for her pain. We thought it must be a muscle pull of some kind and that her arm was in an odd angle in the seatbelt when I pulled her out of the car. We gave her a little motrin to ease the pain and that helped tremendously.

The following day, Aria’s arm was sort of limp. She wasn’t using it and it was slightly tender to the touch. We had convinced ourselves that it was some kind of kid bonk and it would take a few days to heal. By the end the day she was moving her arm and showing us that she could lift it above her head without any pain. We were encouraged and optimistic that it wasn’t going to amount to anything serious. The next day, however, we were outside playing when the dogs knocked her down on the hard packed snow smack dab on her sore arm. The pain was excruciating and it took longer to comfort her.

Over the next day, Aria had periods in the day when her arm was very painful and we gave her motrin and it helped. It was strange though because she just wasn’t herself. She was more sensitive and fussy. In the middle of the night she would whimper and moan in pain but it would resolve with comforting and medicine. Still, we couldn’t escape the nagging thought that something was off and we just couldn’t put our finger on it.

It was Christmas Eve and Aria was excited about Santa coming but subdued. She lacked the sparkle and brightness that defines her so completely. Doc and I discussed maybe taking her to the ER just to check what was going on. It is very hard for me to admit that the last place I wanted to be was in the ER on Christmas Eve while it was snowing with my daughter whose arm ached and we didn’t know why. I just groaned thinking of having to spend hours and hours waiting and kept hoping that her arm would just get better. On top of feeling horrible that Aria was so uncomfortable with her arm, I felt the added shame of not wanting to take the necessary steps to figure out what was going on. Doc really wanted to give her a few more days of rest and healing before we took her in to be seen. He really didn’t worry too much about it. I took comfort in that.

It is difficult for me to look at pictures of Aria from Christmas morning knowing now what I didn’t know then. I still haven’t been able to watch the video we made and I cry every time I look at these photographs.




Despite that, we had a wonderful Christmas and Aria seemed to be improving. Her pain was still prevalent but her range of motion was increasing and she seemed less irritable. We decided to go ahead and call our doctor the day after Christmas to have her seen. We wanted an objective opinion of what might be the cause of her pain and discomfort. We wanted make sure we weren’t missing anything and that she was in fact getting better. We were able to get an appointment for the following morning, December 27, 2007. The physician’s assistant gave Aria a thorough examination and concluded that it was more than likely a muscle strain. Although he gave us a referral for x-rays, he didn’t think anything would show up so we didn’t pursue that and instead went home. Over the next several days, Aria continued to improve until finally she didn’t seem to have any pain whatsoever. It was great and she was back to herself again, until…

Friday, January 11, 2008 Aria out of nowhere started complaining that her left arm and shoulder hurt. I could think of no reason for this pain and it was weird. I was worried and exercising a bit of denial that it could be something really serious. Regardless, I wrote an email to 3 of my nearest and dearest friends, whom I call “My goddesses.”


January 12, 2008
We didn't go sledding yesterday, which was a huge bummer. I was totally looking forward to it. I don't know if Aria is going through some kind of growing pains or something. She's complaining that her "arms are bent". This time I have no idea what the matter is.. I can't trace back to any incident or injury that may have tweaked her arms. She says its both her arms..When I touch her shoulders, they hurt..when I touch her elbows, they hurt..when I pick her up under her arms, that hurts. She's all over the map with her emotions related to it too..I find this really challenging...how do I address it and take her seriously without feeding into it if it’s partially a 4 year old attention getting thing and how do I downplay it without ignoring her because something definitely is off. She can be a whiney 4 year old but she's not a manipulative 14 year old! She's just not herself and that is the indicator to me. Poor thing woke up yesterday in tears and she was like that most of the day! poor thing.. icecream helped and watching the wizard of oz..also playing ponies with her and a nice hot bath but other than that she was a puddle!
Here's hoping for a much better day!!
~qg



Over the weekend it was the same old story. Aria had moments when she seemed as if everything was fine and others when she would wake up in the middle of the night screaming. I told Doc that come Monday morning, if she wasn’t better, I was taking her back in and having her seen by our regular doctor.

Monday morning rolled around and Aria had not improved enough for me to let it go. Once again she was more irritable and fussy. She just wasn’t herself at all. I called our doctor’s office and was told that our doctor could see her on Thursday and just as I was about to arrange that appointment I said, “You know what. That’s actually not going to work for me. I’m really worried about Aria and I need her seen today. Is there any other physician available today to evaluate her?” I remember my heart pounding in my ears and suppressing tears as I said that. I was told that another doctor could see Aria later in the afternoon. I took the appointment and later that evening I wrote an email to my sister Sue.


January 14, 2008
Things here are just ok. Poor sweet Aria is dealing with something.
At Christmas time, her right shoulder was really bothering her as you
well know but Friday she started complaining that her left shoulder
hurt. She is now walking around with her left arm bent as if it’s in a
cast..she is totally protecting that arm and shoulder. Poor thing.
She is SUPER sensitive...can hardly pick her up without her
crying..We went to the doctor today..of course during the exam she is
able to straighten her arm..put it over her head etc.etc..doctor and
I agreed it was a bravado thing..a few times she flinched so the
doctor knew something was up but at least ruled out a dislocation,
bone spur etc..Sooooo, we had some lab work done...she had to be
poked 3 times in order for them to find a vein. Poor thing...Then, we
had x-rays done of her shoulder.. I am so trying not to worry about
the really scary shit like bone cancer or rheumatoid arthritis but
there it is in my worry center! We're hoping it is just a weird
manifestation of growing pains...joint swelling etc...but still, poor
thing.. the kids were amazing..true champs...all of them. We were
doing the doctor thing for over 3 hours! They were wiped by the time
we got home but still I could not be more proud of them. It is such a
stressful thing because one minute she is fine playing "jokes" (this
is a little game she and I play..this is her idea of telling me a
joke; Hey mom, "I'm going to eat the poop!" to which I die of fake
laughter and respond, "Aria, I'm going to eat the pee snow!" It
deteriorates from there!!!) So, one minute we're telling jokes and
then the next minute she's whimpering and crying in pain and the next
minute she's playing with Rianna..Up and Down and Up and Down!! Dr.
Robinson, a colleague of our doctor was actually reassured by
that..She took that as a sign that something is very real but isn't
so consuming that she can't distract herself. I was reassured with
that perspective. So, basically the work we had done today was all
the Rule out stuff..Please keep her in the light! I arrived home and
was consumed with thoughts of the millions of unknown mothers the
world over who are dealing with very real tragedy at this very
moment...very real illnesses..very real injuries..very real
injustices..that are happening to their children. I feel so deeply
for them and at the same time feel so incredibly grateful for our
health and well being. I feel incredibly humbled too.. Life is such a
fragile, fragile, fragile gift!

I'm chilling with a glass of wine, waiting for Doc to get home. He
drove over to Seattle today and should be home soon. There's weather
going on out there so as soon as he's home, I will breathe a huge
sigh of relief!

I'm still processing our conversation.. I have to say, that I am just
so amazed by you and Jim. Truly, Doc and I admire you so very much
and look to you as our mentors in so may respects and for so many
reasons!

Love to you! ~j


The following morning, Tuesday January 15, 2008 at approximately 10:45 am, Doc called me with news that in an instant shattered life as I knew it. I was no longer the same person and I was thrown upon a foreign path that left behind everything I thought was real and forced me into a new world of “What Is.”

Before it all began..

These are some pictures of our life before the road took a turn that we never dreamed possible.

In the beginning...

I don’t think it is an exaggeration to say that every parent worries about ‘something’ happening to their kids. I know I did and still do even after something actually happened! I can’t tell you from where this voice of anxiety comes but I’m becoming more and more certain that its origin is fear. I can’t think of a single time when I felt stressed and anxious that I wasn’t also afraid of something. That may appear obvious to you reading it since it appears obvious to me having just written it but if fear is such a transparent foe, why then does it remain so formidable? I’ve often wondered, why is it that I know I’m afraid and actually despise feeling afraid and yet don’t do much to understand the cause of my fear, its birthplace within me and its ever expanding root system? Why am I so comfortable accepting my fear as a state of being? I’m beginning to develop answers to those questions but not because of any serene soul searching accomplished beside a babbling brook with tinkling bells in the distant wind. No, my search has been the result of sifting through the embers and shards of an old life while being forced to accept a new one that is ironically fragile and fortified.

You see, I’m on a journey that has forced me to face fear and I never realized just how many I had. My path is not a straight one and there has often been a new fear discovered at every turn. I’ve never been so frightened in my life but there’s a miracle that is also entangled in mystery that has become tangible. I have the strength and the power to face virtually anything. I might have told you at one time that I knew this about myself. I might have said something brave like, “Well, I’d do it if I had to. I suppose I could face my fear. I’m tough enough!” But these words were always uttered in the comfort of only being intellectually afraid, never having to actually confront a fear head on, figure out how to disassemble it and then smash it to smithereens. I’ve had to do that countless times now and every single time, every single fear is daunting and intimidating but I’m doing it. I’m facing what scares me to my very core. But the weird and curious thing is that I’m not getting rid of my fears once and for all even after I’ve identified one and played cat and mouse with it a while. I’m not quite able to banish them completely but I am able to tackle them and keep them down for a while. Will I ever be free from fear? Now that is a question!

The light of this journey has shone me glimpses of what that might be like. I’ve come to believe that facing a fear and naming it is certainly the first step to ending its choke hold but I haven’t quite figured out the rest. I’m still searching. My journey hasn’t ended.

It was December 21, 2007 when the very first hint of something wrong came into view. It was 3 weeks later in January 2008, my daughter, Aria, was diagnosed with leukemia. Cancer happening to one of my kids was my greatest fear and it remains a powerful source of fear for me to this day. Every time I saw a bald kid, who I assumed was going through some kind of chemotherapy my heart sank into the pit of horrid anxiety and wonderment. “How do those families cope?” “God, what’s happening to that kid?” What would I do if one of my kids was dealt a life threatening illness?” “What would happen if one of my kids died?” “What on earth would I do?” “How would I carry on?” “How do those people carry on?”

I’m one of those people now and all of those questions and more haunt me still even though I live, eat, breathe, sleep and smell cancer every moment of every day and have been doing so for quite some time.

I can’t tell you how many times people have said to me what I used to wonder about others in silence, and that is, “I don’t know how you do it!” I’ve learned to interpret that comment as both a genuine question as well as a sincere expression of admiration that is also enmeshed with a pretty good dollop of fear. When I hear people say that I go back in time to all the times I saw someone dealing with the ravages of cancer, for example, and I would spiral into a dark place of worry wondering, “What if that was me? What would I do?” So when people voice their wonderment and awe over how I’m doing it, I can’t help but hear whispered in the background, “Julia, I want to know everything you’re going through but at the same time I don’t want to know.” This is the voice of fear saying, “You don’t want to know because it is beyond your wildest imagination. It is beyond me -fear and well within some other realm that has no name. You want to know because you think by knowing you’ll feel more prepared and less afraid. You’ll create a list of ‘here’s what I’d do if something happened’ scenarios that you can keep tucked in your pocket at all times…just in case.” I remember doing that and thinking that. I think it is a perfectly normal thing to do and something we all do from time to time. Don’t we? The real question, however, is why we continue to do it when it isn’t a successful strategy for squelching fear and empowering the mind-body spirit to face what it must. I’ve learned that to continue engaging in the exercise of ‘if I worry about this enough I can make it real to my mind and therefore convince myself that I’m prepared and fearless,” is a complete waste of time and energy.

There’s nothing wrong with learning about other peoples’ experiences. Stories of trial and triumph are inspirational and that plays an important role in empowering our psyches. The capacity of the human spirit is infinite and we do well by learning and watching others show us just that. However, the problem is that sometimes we think about what other people are having to endure and how that would affect our own lives if the tables were turned that we ignore what’s happening in our own lives. Maybe it’s because we’re too scared of our own circumstances or perhaps we’re too bored or uninspired that we find other peoples’ lives so interesting to watch and unfold. I find that tragic because it doesn’t enable one to acquire the tools necessary for the transition that happens when fate comes knocking with a wretched hand.

Let me tell you something. It, whatever it is, will never be what you think it will be. Life is so incredible that way. The good or the bad that you imagine will always pale in comparison to what actually happens, so I’ve found that paying attention to what is actually going on infinitely more helpful than trying to conjure what could happen based on someone else’s experience.

Still, there are lessons to be learned from another’s experience that may not be perfectly applicable, but there are pieces of similarity that can be incredibly helpful. What’s often lacking however is direction and explanation. It’s one thing to say, “We ought to let go of our fears.” It’s something else entirely to demonstrate how that’s done.

It was never my intention to write in sometimes gruesome detail about my process of discovery and conquest while facing the Goliath of fear that resides deep within me. That sort of just happened. My focus was very simple. I had to tell a number of people the same information about what was happening to Aria and to my family. I accidentally discovered that through emails I could share the details of a horrific medical experience with ease and peculiar healing. My parents, Doc’s parents, my brothers and sisters, Doc’s brother and sisters, friends and extended family were every bit as blind sided with the news of Aria’s leukemia as we were. Suddenly these people were hurled into this horrible well of fear, worry, dread, wonder, shock and helplessness. They craved information. Sending emails was an easy way to target a number of people while simultaneously keeping the phone lines open, which was critical during those early days. But in a matter of a few weeks, writing emails became a sort of therapy for me. I was given a number of journals upon which to pen my thoughts but my hand couldn’t write nearly as fast as my fingers could type so the emails transformed into a journal.

Initially it was scary to be revealing and vulnerable until suddenly I ceased to be afraid. I can’t tell you when that happened exactly. It simply became a matter of preservation. I had so many thoughts swirling and buzzing in my head that they became a real threat to my sense of peace and calm. I found that the more I allowed them to marinate, the more chaotic and anxious I felt. When I began weaving my thoughts into the emails about Aria, suddenly they lost their power over me. I was less anxious, less worried and felt more able to face the fear of the day. Hitting the send button was like releasing the stress and fatigue never to be owned by it again…at least for that moment. I felt emptied and cleansed ready to face a new day and fill my head with new thoughts and discoveries.

These are some of those stories, those thoughts and fears. Although this is grand sweeping statement, I’ve come to discover that even though this is a tale about journeying through pediatric cancer, it is really a story about you and me and what it means to discover who we are and how we are all connected in the spirit of our humanity.

A Weighted Spirit

I know that this blog has sort of sprung out of nowhere. You are reading about my journey after 16 months has already been traveled. You are starting in the middle and so I'm going to add some stories that I wrote along the way these past months and perhaps slowly draw you up to where you find me now. The one I've included here was written just a short time ago on April 29, 2009. I had been in a lengthy reflective period and had not been writing for a few weeks. This is the culmination of that quiet contemplation, which is why it is so lengthy.

"A Weighted Spirit"
2 weeks ago (April 13th and 14th 2009) Aria had her monthly examination with Dr. Trobaugh followed by a spinal tap. The exam happened on a Monday and the spinal tap was the following day. It seems like ages ago. Yesterday (Monday April 27, 2009) Aria returned to clinic for a lab check to see if the increase in her chemo had created any significant shifts in her counts. Everything is fine. She's doing so well.

You know, for a lot of people this is all that ever gets reported. To say that Aria continues to do well is enough. I completely understand why this happens and let me say that what follows here may be entirely projection on my part but I doubt it. You see, the truth is, I've reached a new place on this journey. Exhaustion. For the past 2 weeks I feel like I've been sitting on this very smooth rock in a beautiful valley meadow trying to gather strength. I've been sitting here searching, thinking, wondering, day-dreaming finding myself completely quiet. The scenery has been beautiful and bright. I've noticed how green things are and there are small tender flowers sprouting everywhere. There are bits of pink, purple, yellow and blue in my gaze. The sun is warming and the air is fresh. I, on the hand, have been dark, introspective, and cold. My spirit feels laden with a burden I don't fully recognize. Some of it is the same old thing but there is something new that has forced me to pause. I told a friend that my normally verbose mind has been silent. Instead, what's been going on before my mind's eye has been much like the pictures on those circular cards inserted into a toy view finder. For days and days one image has been followed by an audible spring-like click and then another image appears. Thoughts associated with these images have only just come to me recently and it is those thoughts I'm writing now. I share this with you to offer you another view into our experience that I've only recently fully understood is not ours alone.

The exhaustion I speak of is intense and came like an unannounced storm catching me off guard and unprepared. I've weathered it though and although it was never frightening it was an unyielding presence that I simply had to recognize and learn to understand. Aria has been a master at this all along. She has shown me exactly how to take care. Aria plays when she feels playful. She sleeps when she's tired. She eats when she's hungry. She cries when she's sad. She giggles when delight tickles her. She is always fully present to herself and it is something I admire and hope to claim more of as my own.

After our clinic appointments 2 weeks ago, I was wiped out, I had to simply stop, sit and rest. I had to welcome quiet and seek solitude in the middle of my life that is full of interruption and distraction. I had to turn inward to understand what was happening. It is possible; moments of solitude, intense reflection and quiet can happen in the midst of chaos and kids and it did.

It is so easy in this state of fatigue to give you the truthful but abbreviated version; Everything is fine. Aria is doing so well. I've convinced myself, however, that you want to know more, that you don't mind me giving you all the nitty-gritty details and I'm certain that processing this journey with you this way is healing for me. But I have to tell you, it is numbing sometimes. Step after step after step on the same path of worry, wonder, fear, acceptance, surrender, battle, triumph and redefinition takes a toll. I can see myself trudging along not knowing what to say, feeling like I'm repeating myself because it's the same old view day after day. So I see myself waving my hand at you as I pass by mouthing, "Everything is fine! Aria's doing great!" and as I walk away tears stream down my face. How is this possible? I wonder. How can I feel so heavy in light of Aria doing so well? How is it that I can't acquire enough strength from her wellness to carry on with a lighter step? Why I have reached this place where the view is so large and I'm not able to see all the wonderful details? These are just some of the questions clinging to my spirit weighing it down demanding answers.

The process of discovering answers required me to sit for several days and retrace my steps and consider deeply what had been happening. I needed only to go back about a month to Aria's brief hospitalization in mid March to know that that's where the load began to get heavier and heavier making me feel like my feet were dragging with every step I took bringing me to where I am now. Aria is doing so well but every now and then she's hospitalized which creates this red alert state in which we live for several days before during and after. In this instance, our entire family dealt with a virus that went round and round for weeks constantly threatening another ER trip. We're still dealing with it by the way. Aria got a cold sore the other day and is now on a new antibiotic for 10 days. It is no big deal by itself, but that's the thing. It is another thing on what sometimes feels like a mountain of no-big-deal things. Aria is home from school today because she is tired. I picked her up early from school yesterday because during activity time she put her head on the table and closed her eyes. Is something going to happen? Is she going to suddenly get a fever? Should I prepare my mind-set for another brief hospital stay? Is it too cold for her to play outside? She seems fine but is she? This is the kind of thing that keeps me teetering on a knife's edge and it is so tiring sometimes.

It's worth saying that for the past several weeks, there were many moments when things felt truly relaxed and easy going and I could take in the awesome view but by and large my focus was narrow and edgy. The many threats that circle Aria are never out of my sight. Never. I have moments when I want nothing more than to forget for just a moment.... to simply abandon the reality that she has cancer, that she takes chemo every single day as well as several other drugs to address side effects of her chemo. She has so many more moments during the day when she's just like everyone else but there's always this little invisible tag attached to her that reads, "except." Yeah. Aria is so much like everyone else, except she has this and that and this and that. Step, step, step, I go. It's like looking upon something so pristine and sacred while being constantly stung at the same time. It's painful to look at, to notice and revere but it is equally painful not to look and notice and revere. So I stopped right in my tracks. I stepped off the path, sat upon a rock, closed my eyes and took a look around.

It is hard to accept that I'm tired, that I'm burned out and that I'm sick of this routine that has come to define us. Specifically, I'm sick of having to go clinic every other week and go through the same ritual we do every single time. It's the same drive to the hospital, into the parking garage, passing car after car with God only knows what kind story inside. It's the same elevator ride and race to the clinic door colored with the same loud primary royal blue and red. It's the same attempt to contain Rianna at the same time keeping things fun and light. It's the same intensity and seriousness that grips me and smears my smile. It's the same stress that Aria endures to have her finger poked and blood milked into a tiny vial. It's the same band-aid. It's the same routine to make another appointment. It's the same stagnant air that I seem to gasp for. It's the same sorrow I feel that Aria has to endure this at all. It's the same gratitude I have knowing it could be so much worse. It's burn-out and a sensitivity that others are burned out too. It's a chronic state of worry despite my constant soul searching. It's encountering people who say all the wrong the things but have such good intentions and wonderful hearts. It's having the humility to admit that the burden is heavy and I'm tired of carrying it but knowing full well that I must continue on. It's knowing that I can carry on but I don't want to. It's wanting to pause for just one more minute and not being able to. It's wanting a pity party and feeling sick about it as if I've over-indulged on my own chocolate-woe-is-me cake. It's wanting to deny that I feel sad because I'm still hung up thinking that strength is void of sorrow. It's hearing, seeing and knowing what others are having to endure and encounter. It's absolutely nothing specific but everything in general.

I've been trying to find a sort of balance, which seems to be the trendy word these days. It doesn't really describe what I've been seeking but it will do for now. It is important to go back now to those clinic days a few weeks ago and tell you what happened so you can understand the existential storm that rained upon me afterward.

Monday April 13, 2009 mid-morning, Rianna, Aria and I entered the clinic. There were a few families in the main waiting area and no one in the play room. The kids made a bee-line to the treat basket and then the playroom where we began our lengthy waiting session. I felt almost entirely like myself while I was there. The total stress-fatigue that I had come to know so well was gone. The worry about what Dr. Trobaugh might tell us was no where in sight. I had a real desire to play and color. I wanted to interact with other people and their kids. This was a tangible first for me. Up until this time, play was strained and almost fake, which is not something I want to subscribe to because the kids know when I'm not being genuine despite what I think is an oscar winning performance. I tend to want to sit and talk with other mothers and fathers. I want to learn their stories and know what they are having to endure. I want to understand what their experience has been and how it compares to my own. I want to share experiences and feelings. I want to know and feel that I'm not alone and I've thought about that a lot. It isn't that I'm searching for validation, or even someone who understands this experience because of their own. I've said before that I've met several families with kids who have leukemia and we are as different as night and day. We all come to the table of cancer with totally different life experiences, coping skills and needs. What I'm after isn't similarity per se but companionship. Someone who has been forced on this path as I have and who has had to learn to see what I see. Someone who knows the smell of the clinic despite the fact that there's no way to describe it. Someone who knows what it feels like to have your heart skip a beat whenever the machine that slowly dispenses the chemo goes into a beeping spasm. Someone who is comfortable with the complexity of sorrow that resides beside overwhelming joy. I've met several mothers with whom I feel completely at ease in this regard and I'm so grateful for that. None of those mothers were there that day. That was just fine. I had Doc with me who was so playful with the girls and we had fun. We are so familiar with the clinic. It really has become a home away from home as sad as that is.

As Aria, Rianna and I were coloring I noticed that suddenly the clinic was bustling. People were everywhere it seemed. Not an empty seat was to be seen and kids were all over the place. What struck me like the point of arrow forcing me to cringe in a desperate kind of pain was that not one of these faces were familiar. There were dozens of people and I knew no one. Suddenly the scope of cancer in general became enormous and I felt very small. We are one family out of millions and millions of families who are touched by cancer in one way or another. I remember sitting at table with Rianna and just shaking my head at that reality and not knowing what do with it. It was such a helpless feeling. Then, suddenly, she came into the playroom with her son. She caught my eye immediately because she was unlike many of the people I typically see in clinic. She was extremely stylish wearing these funky horn-rimmed glasses and looked like she has waltzed right out of the 50's all the while swirling so every decade that came after clothed her and the end result came walking into the playroom with all the confidence in the world. I liked her immediately. She had an enthusiasm about her that was completely contagious. She sat on the floor with her son and started to make a puzzle. I was having a conversation with someone else when she unapologetically interrupted and chimed in with her own story. I thought, "Who is this woman? I love her!" I just smiled at her and continued to wonder and marvel. "Could it be that I've met someone with a personality as large as my own?" It was like someone had opened a window and finally some fresh air came into the room. Suddenly, she and I were in the throws of discussing what was happening. I don't know what happened to the person to whom I was speaking just minutes before and I barely remember what happened to the kids so engrossed was I with this new found person clearly of my tribe. Her confidence and cheer were breath-taking to me and I kept wondering where she is on the journey. She seemed like such a seasoned pro but it was odd to think that we'd never crossed paths until this day. Just as I was about to ask her what her story was, Sherri, the family advocate came into the room and sat down beside me. She said, "Oh good, I'm glad you two have met. I just knew you would like each other!" We laughed because we hadn't met. I didn't know her name, her son's name or anything about her really.

Formal introductions were made and she began to tell me her story. She isn't a seasoned pro. Her son was diagnosed with a rare form of leukemia only 2 months ago. His only treatment option is a bone marrow transplant and at the time of our conversation they were in the throws of searching for a match. They have since found a perfect match and she and her son will be moving to Seattle in a few days where their lives will be nothing but clinic, hospital treatment, medicine, healing, sickness, praying, worrying, moments, etc..etc.. for several months. Her son's prognosis is 50/50. She said very candidly, "I'm well aware that this bone marrow transplant with either cure him or kill him." How does someone so new to this journey have that kind of confidence and pragmatic zeal? I was stunned by her in the best of ways. She told me that her son was ill with flu like symptoms for a few days before he was diagnosed and wasn't getting better. Their doctor did some testing and sure enough they were immediately admitted. He, like Aria, had a very short hospital stay initially and since the end of February has had several blood transfusions but everything else has been on hold until they could find a bone marrow match. Her son is 3 years old.

She told me this as if she's told this story a hundred times already. She was guarded void of emotion as if she was issuing a status report. I understoodd her armor and why it was there and at the same I could see that there's so much more. I noticed that the puzzle her son had selected was too advanced for him and so they were shuffling pieces around as opposed to assembling them. I understood this kind of distracted play and desire to be present but not really being able to. I asked her, "So, how are you?" She sat very quietly and although I couldn't see her tears I know they were pooling. Sherri put her hand on her shoulder and told her that it was ok. She responded with such grace and sincerity. It was very clear to me that she is chief of her village so this happening to her has been completely disruptive to her entire tribe. I understand why she needs to be so strong and I admired her tremendously for knowing after such a short time that she's safe in the clinic. She can put aside her armor and just be and she was.

What she faces is so immense. It is a nightmare that I hope I never have to know despite the fact that I want to know every moment of her journey. She showed cards she printed about her son. She's already arranged for a city-wide blood drive and bone marrow donor sight. She's the type of woman who knows how to rally the troops and I can only imagine the throngs of people ready to offer their aid. At the same time, there is no mistake that when she leaves, life as she knew it will be but a shadow. She has 2 older children who will remain here with her husband. This kind of separation...I just can not imagine.

I sat there listening to her, ingesting every word and image of her and her story. I felt so helpless. I wanted to offer her something; some kind of comfort and understanding but I have no idea what life is like for her and going to be like for her, so I felt empty-handed. I gave her my sincerity and my honesty. I told her that I don't understand what she's going to have to experience but that I want to and would encourage her to share it with me if she was so inclined. I told her that I was sorry life handed her this fate. I told her that what she is facing frightens me but seeing her courage and strength empowers me. She looked at me with complete understanding and asked, "Are you a Leo or something?" Did I mention that I immediately fell in love with this woman? I grinned from ear to ear and told her, "No, I'm a Scorpio." "Oh, that explains it!" she exclaimed and together we laughed and laughed and laughed. It was one of the most healing moments for me. I have met a kindred spirit and even though I won't really be able to get to know her well over the coming months I sense that I will always know her. I feel safer on my own journey with that in my pocket.

It was Aria's turn for her lab draw and so we departed. By the time we came back she was gone busy with her own examination and lab tests for her son. Rianna needed her diaper changed and so I left to take care of that. When I came back there were several staff members, Doc and Aria among other families and patients surrounding a teenaged girl and her mother. Krista was playing the guitar and everyone was singing and applauding. This was her last day of treatment and this was her celebration. I walked in beaming knowing how profound this moment was for this girl and her mom. I looked over at Doc, who sat on the built in ship in the main waiting area with tears streaming down his face. It was such a moving moment. Several people came up to me with tears in their eyes saying, "This will be you some day." Naturally the tears came for me as well. Someday. Indeed, someday that will be Aria.

I approached this mother and her daughter and expressed my deepest congratulations and joy. I told her daughter, "I am so proud of you. You are my hero! What an amazing young woman you are! Well done..good for you!! Today is about celebrating you!" They beamed at me and nodded wiping their tears. We were silent a moment staring at this beautiful young girl with purple streaks in her hair when I asked, "So now what?" Her mother looked at me with that unique mix of joy and sorrow I'm coming to know so well and said, "Well, we'll be coming back to clinic about every 3 months for the next 10 years and then after that..." she paused and looked at her daughter who smiled, "who knows." This was yet another moment for me when I felt like I was falling down. I'm pretty sure I didn't say what was screaming in my head, "10 Years? I'm sorry..d-d-d-did you just say 10 years?" I think I was able to stutter and spit something like, "Wow. I-I-I don't know what to say." I remember the mother looking at me and shrugging her shoulders, "Yeah, what-are-ya-gonna-do?" I know that entanglement of acceptance and surrender. I know how one minute it feels choking and the next, like life line. As I left them the mother and I exchanged a knowing glanced, smiled at one another and with a small bow to them I sent a blessing acknowledging their sacredness.

I returned to the playroom with the kids and played. The others that were in the room were so private, guarded and tired. I knew they didn't want to be engaged or didn't know how so I left them alone with their thoughts. Finally it was our turn to see Dr. Trobaugh. Aria's ANC was 1911 and all of her other blood work looked terrific. Dr. Trobaugh decided to increase her chemotherapy just slightly. "Baby steps." she said. We told her that there was nothing significant to report because Aria was doing so well. Dr. Trobaugh smiled from the top of her head to the tips of her toes. I could just sense it happening. She was focused as she always is but a little less playful and I figured that was reflective of the number of new cases mingling in the waiting area. She apologized that we had to wait so long but we reminded her of how unnecessary that was. We told her that we recognized that she was, unfortunately, very busy. She let out a deep sigh, something I'm not sure she aware of and nodded 'yes.' That was all she revealed and all she needed to.

We mentioned that our only real concern for Aria at this point is her barrel shaped tummy, her appetite and her weight. We know that children on prolonged steroid use are at a greater risk for obesity and subsequent Type 2 diabetes. Aria's appetite is sometimes off the charts especially when she's on steroids. She could eat all day long if I allowed it and I'm not talking about grazing a carrot here and there. I'm talking about eating a full sandwich and apple and then mentioning being hungry for McDonalds. Once she's denied that she'll mention her list of favorite foods; shrimp circles, purple shell noodles, King Yen noodles, pizza, did I forget to mention purple shell noodles and then there's the purple shell noodles and oh we mustn't forget the purple shell noodles. This goes on all day long for a good 10 days in a row. It is so exhausting and tests my patience to the very limits. Trust me, it is awful to admit that I often don't have the patience necessary to deal with this kind of persistence day in and day out despite how easy and transparent it all is. This is just one of the things that adds to my sorrow. Don't worry, I don't expect myself to be super-human. I give myself plenty of latitude but the truth is, it hurts to be cross with her and to be sick of her constant demands when the reason behind what motivates her behavior is beyond her control. It is beyond her entirely and acts as a glaring reminder of what's happening. The weight of that and sometime my inability to carry it properly hurts. It just plain hurts.

Dr. Trobaugh mentioned that looking Aria does not raise any red flags for her but she took a moment to plot her growth chart. Aria is now in the 95th % for her height/weight ratio which is a significant increase from the 50th% when she started treatment. It is a trend that we don't want to see continue so we discussed the things that we've already started to implement at home. We are restricting the number of treats she has and we are watching her portion sizes. Trust me, it is a challenge because when Aria is on steroids she really does feel as if she's starving. Food is such a comfort for her and it seems to me that she's only had a few months where she's truly and fully resembled her old self. I know that once the weather improves, we'll be outside playing and running around. Summer will be here and she'll be swimming so I'm not overly concerned but it is one more thing to think of though. One more thing to confront and consider. It is another thing I carry in my bulging pocket.

After being in clinic for 3 hours we finally went home. I was completely exhausted feeling as if I had experienced the full spectrum of emotion in this world of cancer we now call our own. Later in the evening after the kids had gone to bed I talked to Doc about it. I mentioned to him how nervous I felt about the spinal tap the following morning. I said, "You know, no matter how many of these she's already had, I'll never get used to it. " Doc looked at me sort of
incredulously and said, "Well, I certainly hope not!" This made me feel validated. I don't know what it is folks but I put myself in this frame of mind where I think I need to be more go-with-the-flow, shrug my shoulders what-are-ya-gonna-do, not think about it too much. The truth is, I'm not wired that way and I don't know that anyone is. I don't know. Is it possible to watch your child go under sedation and have a giant needle inserted into her spinal column injecting chemotherapy and not be disturbed, dismayed and completely uncomfortable? I don't know. Maybe there's a desensitization process that happens but I certainly haven't experienced it yet. The thought of her spinal tap worried me up one side and down the other. The thought of being in clinic another day for hours and hours surrounded by people and their horror stories. It feels like it's too much and yet it is what it is. I started thinking of how much time we were going to spend in the clinic yet again and I asked Doc, "Honey, why don't they just give her the vincristine (her big gun monthly chemo) while she's accessed and sedated in the procedure room. That way we wouldn't have to wait for the vincristine to be ordered, received and administered." Doc looked at me and paused. He said very slowly and simply, "Honey, intrathecal (meaning in the spinal fluid) vincristine is fatal." What happened next, I don't know. It was the strangest blow I felt. It was like a cross between being punch in the stomach, falling and having the wind knocked out of me and having a load or rocks fall upon my shoulders all at once. His voice rang in my head. "Intrathecal vincristine is fatal."

This is why this journey is so hard. There are turns and steps and hills and moments when things are truly life threatening and they are constantly there. Sometimes they are almost invisible. Almost. Sometimes they are small and easy to stomp upon, which makes me feel so strong and powerful. Sometimes they are large and scary, making me feel weak and sad. This is my view. This is our journey. Aria takes chemotherapy to treat a life threatening disease that if given in the wrong place would kill her almost instantly. I said to Doc, "God! I had no idea! So they don't even keep vincristine in the room or something? It has to kept separate?" Doc said, "Absolutely. They don't keep that kind of drug anywhere near the procedure room. The process of bringing that kind of chemo onto the hospital floor has to be strictly followed so no mistakes are made." I wanted to cut corners to save a little time, maybe 15 or 30 minutes but in this environment time is precious, moments are savored because the surroundings are so extreme. Doc gave me a big hug and said that he's nervous too. He told me that he feels stressed and tired and sad. He told me, "Honey, living with chronic illness is a stress like no other. We're doing it! Every day we're doing it! We're facing it and we're dealing with it! Every day she's getting better and closer to the end and then every day after that...well, we'll just see." I let myself cry a little and then went to the computer one last time to check for new emails. I needed a distraction to end this day.

She had found me on Facebook and asked to be friends, which I replied to immediately! I knew she and I were tribe! I've thought about that recently and I've decided that she is most definitely the chief and I'm the witch doctor!

The following morning, Tuesday April 14th, we entered the clinic around 7 30 am. We decided to keep Reo out of school so he could be with Aria. He talked about it a lot and knew what clinic meant for her this day and he wanted to be involved. There were 2 families in the clinic already. One family, a man, woman, an infant kept to themselves in the main waiting area. They appeared by their dress to be Eastern European and when their interpreter showed up I was pretty certain my hunch was correct. In the playroom, there was a dad and his twin sons. His boys were 10, I think, but they may have been older. One of the boys has lymphoma and today was his last day of treatment! Dad was thrilled and overjoyed and so were we. What a day for them. They were planning on being in clinic for the entire day for a host of lab tests, cat scans and so forth but still no more chemo after today. We talked and talked about their journey and what it has been like for them. They travel a few hours to get to clinic and have been doing that for about 2 years. He commented on how tiring it is, how exhausting it is to see so many little kids so sick and their families...His voiced trailed. He mentioned that it's hard being in clinic because sometimes he just doesn't want to know what others are having to deal with. I laughed because I understand that completely. I mentioned, "Yeah, it's like wanting to stick your fingers in your ears and say la-la-la-la-la all the while wearing blinders so you don't have to see. " He gave me an enormous grin and said, "exactly!" We laughed knowing how futile that is but the desire to do it is nevertheless there. We talked about steroids, chemotherapy in general and how life takes on a new normal. We talked about the temptation of wanting to go back to the way life 'used to be' and how impossible that is. We talked about how hard it sometimes is to embrace life as it is now. He said, "I feel like I can't let my guard down. We're always worrying and wondering." I sighed knowing exactly what he meant. We talked about farming, gardening, raising chickens and the weather. It was snowing outside and we mentioned how long the winter was this year. We both agreed that we'd all feel so much better when we could be outside playing! His boys were quiet reading books. One had hidden himself among the different shaped gym mats that he'd built into a sort of fort. I thought that was such clever way of blocking out what he didn't want to see.

It was nearly 8 30am and the clinic was bustling once again with faces I'd never seen before. Aria and Doc left for her procedure and the kids and I played. I didn't talk to a single family. I can't remember what I did exactly. I played with Reo and Rianna. We wandered the halls, snacked on crap food and waited. The environment felt overwhelming. Suddenly cancer in general felt bigger than ever and it was rather crushing. Fortunately, Aria's procedure was over before we knew it and we were ready to see her. When I walked into the procedure room with Reo and Rianna, the strangest thing happened. We came in a different door than the one we were used to and when the door open this rush of intensity came like a deluge. I was scared and immediately thought, "Oh my God! What's happened?!" The room was warm. The light was bright. There were dozens of nurses and support staff all over the place. They seemed to be moving quickly and at the same time in slow motion. It was the oddest thing. The three procedure spaces were occupied; the little infant from the early morning in the first one, a little girl who I'd never seen in the middle and Aria, who was still sound asleep in the last one. Reo and Rianna were thrilled to see Aria and Doc but were a little too noisy and wiggly for the intensity in the room. There wasn't anything playful about this space and these perfectly healthy vibrant kids were completely out of place. Doc took them so they could get Aria something to eat while I went to Aria's side. The oxygen tube was next to her face making a loud low pitch hissing sound. I hated it immediately. I don't know why. It's scary, loud, weird, not something a 5 year old should have in their face and another reminder of why we're there. Something so trivial, so everyday for the people who work in this world was something big for me. Aria kept sleeping. I was getting nervous. The energy of the room wasn't right. Something was wrong. I looked over at the other kids and the bed with the infant and her Eastern European parents was surrounded by people. Everyone was wearing a mask and gown moving deliberately and with great focus. I didn't like watching them and yet couldn't take my eyes off of them. The mother looked over at me and we locked eyes for what seemed like a long time. Her brown eyes were enormous and bewildered, almost angry in their intensity like a lioness protecting her cub. I couldn't tell if she was trying to tell me to quit looking at her or what. Regardless I couldn't pull my gaze from her. I tried to return a look that was soft and gentle and I remember thinking, "Bless this family!" She gave me a piercing glance and then turned to her baby. My heart ached for her and I wondered what they were dealing with. I met the mother of the little girl in the middle. They are just about to begin maintenance for her daughter's ALL and she asked me how that was going for us. I briefly told her that in so many ways it is better but it's still really hard. I said, "Here we are again and we've been doing this for over a year already." She took a deep breath and we both said almost simultaneously, "This is such long road!" As her daughter's bed was being wheeled away we laughed and waved. "See you around!" I turned to Aria, who was STILL sleeping. I didn't like that at all. It seemed to me that she needed to be waking up so the minute her nurse left I started poking her. I know. I was totally reacting to my stress but I did it anyway. Don't worry, I didn't pinch her but I did rub her head and say, "Aria, it's time to wake up! Come on. Wake up!" Finally she started to stir. Phew! What a relief. Within minutes, she was sitting up chatting away wondering where her food was. She wanted the electrodes taken off her immediately so she began peeling those away. Her nursed helped her and as soon as those were off, so were we.

We returned to the playroom where she feasted on left-over pizza and coke, which is what she wanted. The playroom was packed and fortunately Aria had just barely sat down to eat before it was time for her to get her vincristine and be de-accessed. In the meantime, a new family appeared. Again, by their appearance alone, I assume they were mennonites. There were 3 girls all dressed alike along with their parents and grandparents. They looked completely overwhelmed and out of place. I thought to myself, "Holy cow, if I'm overwhelmed, imagine what these people are dealing with!" Their middle daughter who has Down's syndrome also has ALL. So imagine that on top of being in an environment that is overflowing with things that are outside the realm of their values. The grandmother sat in the playroom absolutely wide eyed. I sat across from her and just smiled and introduced myself. She was so sweet and her smile was so genuine. Her daughter was in the hallway speaking German to her husband while she and I had the nicest conversation. Her 3 grandchildren, meanwhile, were glued to the television. Someone had started a Dora tape and the girls were enchanted. GrandMa just rolled her eyes. I wondered how many other things like this they are simply going to have to accept as a part of this experience.

Finally, we were ready to head for home. We'd been in clinic for 3 hours! I felt like another hurdle had been jumped and we were well. What a relief!!

Later in the afternoon, she called on the phone and said, "Julia, I just couldn't resist. I feel like I have just found my newest very bestest friend that I can't get enough of!" I laughed and laughed. Oh, the stress of the day was washing away with her voice of understanding and friendship. We talked for well over an hour solidifying what we already knew. We can trust each other. We are friends.

Aria has been able to attend school every single day. She naps every afternoon but is playful and full of life. She's had the sniffles for about 2 weeks straight and a productive cough but nothing more. We've all had variations of the sniffles, a cough and sore throat. I can't tell you how ready I am to open the windows and get some fresh air circulating but that is still a few weeks away. I can sense it though and so I'm excited and hopeful.

Yesterday's lab work and clinic visit was just terrific. Aria's ANC has risen to 2961, which is outside the target range but Dr. Trobaugh doesn't want to increase her chemotherapy just yet. With Aria's cold sore and her chronic sniffles, Dr. Trobaugh would prefer to be a little more conservative keeping her immune system a little higher while she deals with whatever virus is trying to take hold. We return to clinic in another 2 weeks for her vincristine, lab and examination. We'll discuss increasing her chemo then. For now, we're just plugging right along.

I'm getting ready to leave my rock-perch but here's the thing; I've reached this place along this part of the journey where I feel compelled to tell you that it must be o.k. that I've been here. What I mean by being here is being exhausted, being dark and a little sad, being somewhat overwhelmed, being heavy. You may be reading that and thinking, "Well, of course it is Julia! I can't imagine! You must be exhausted. Anyone in your shoes would be!" But I'd challenge you to recognize that this is merely an intellectual acknowledgment. Time and time again people say to me, "Oh, you must be so tired of this! I just can't imagine." This is spoken on an exaggerated exhale as if the one speaking is about to collapse. Not surprisingly however, it is quickly followed by a gasping inhale that resounds with something like, "But Aria is doing so well! You must be so happy!" I am happy that Aria is doing so well but her wellness isn't enough to restore my energy reserves and keep me in a place of joy. That's the emotional reality right now. Her doing so well ought to be thoroughly uplifting keeping me care-free and light. However, it is more complicated than that. Aria's cancer is not happening in isolation. I am constantly surrounded by others and their stories and experiences. I could try to ignore them and not allow them in but I think that would take a great deal more effort and leave me with a life less rich. It's difficult to teeter on the edge of 'everything is so great' and 'not so great'. It doesn't make it easier having to support others who are grappling with their inability to cope with the struggle they see in me. Forgive me if that sounds a bit harsh, but it is a dark truth. It's a bitter pill to know that we still have a year of treatment to go and then yearS of follow-up after that. Even then, I'm not sure it's really 'over'. I'm beginning to understand that cure isn't the destination. The destination is the journey itself. They are one in the same. The journey for the last few weeks has been coming to a realization and acceptance that it isn't a matter of being either happy or sad, tired or energized, doubtful or hopeful. I've been able to recognize that it is the presence of this duality that has worn me down and caused me to pause. On one hand I'm told that I am justified in feeling burned out but on the other hand, I ought to be rejoicing in wellness. This back and forth thing has been going on for a long time and I don't know which way to go. It is only since I've paused to look around that I realize it isn't really a crossroads that I'm facing. I don't have to go one way or the other. It isn't an either/or I'm presented. Aria isn't either well or sick. I'm not either happy or sad about her situation. I'm not functioning in a state of being either tired or energized to carry on. I'm a little bit of both and I'm learning how to travel with this 'bothness.' It is a union of these light and dark aspects and I have to tell you, I'm not very good at walking it yet. It's so weird. It seems like the path under my feet has narrowed to a single file step and I keep wanting to step off the path onto one side or the other. But those places are really pokey and they scratch my chins! It isn't like I'm trying to avoid either side but rather I'm trying to improve my balance so I can walk a narrower path with a steady step. What's even more amazing is the view is even bigger and beginning to be clearer once again. The details are coming back in to focus.

The rest I've had has been so healing. I needed every bit of it. I'm now taking a deep deep breath. If you can see me, I'm still sitting on my rock but I have my pack on with all my tools and I'm ready to go. My pockets are full and weighted but balanced. It is with a slap of my hands upon my thighs that I rise and step upon my narrow path. There's a small smile on my face and a twinkle in my eye. I'm off once again. Everything is fine. Aria is doing so well. ~j