Thursday, May 14, 2009

Aria's May Clinic Appointment

May 11 2009, found us back in clinic for a lab check, chemo and an examination with Dr. Trobaugh. It was 8 30 in the morning and already the clinic was busy with a mixture of people I know well and those I don't know at all. My heart is heavy knowing families every single day all over the world are touched by the brutal hand of cancer.

Aria found comfort sitting in a wheelchair that gave her a royal air. Regrettably, she behaved like an entitled little princess, which we promptly addressed and redirected. People couldn't help fawning over her, catering to her every whim and need. It was something about the size of her purple cast contrasted with the size of her wheeled throne that made her appear especially small. She was in great spirits despite the fact that she couldn't do much. Krista brought Aria puppets, a lion and a turtle and they played with those for what seemed like a long time. Krista was so good to play with Aria and didn't skip a beat even when the play was reduced to potty and puke jokes.
Aria (holding the lion): "Oh my! gerrrp blecht!@ urp! I just puked on you!"
Krista (holding the turtle): "What?! you just puked on me?! No way! Not on my shell! I just polished it!
Aria: "That's too bad! Ooops! I just pooped!"
Krista: "Eeew! Gross. Someone get me a towel and quick! I'm ducking in my shell and getting away from you!"
Aria: "Oh no you don't! ppssssss!! I just peed on you!!"
Krista: "EEEEEwwww! somebody help me!!"

I kid you not, this kind of banter went on for 20 minutes or more. Aria never tired of herself and what she considered to be the most hilarious jokes of all time. Krista never wavered and acted as if she was hearing jokes from a pro. She's such a gem.

Aria's port was accessed and her blood flowed with ease and then we began the exhausting process of waiting. I seem to be in a place on this journey where I have a greater capacity for other peoples' stories. I'm still trying to figure out what's behind my curiosity always making certain that it comes from a genuine place that is hopefully compassionate and mindful. I don't want my curiosity to become a barometer that seeks others as means to compare how we're doing. Nor do I want to be a part of the very moronic and unevolved aspect of humanity that is somewhat amused by the oddities found in a vaudeville freak show. I hope I have matured beyond that kind of exploitation that is neither educational nor entertaining.

The hand of fate that touches us all in one way or another never ceases to amaze me. What's even more incredible, however, is the resiliency of those dealing with their lot. Just when I think I hear a story that ought to reduce someone to nothing but the tears they can produce, there's always another side. There's this reserve of strength and endurance that may have appeared hidden or unknown altogether that people uncover and begin utilizing instantly and with little thought. The automatic nature of this survival tactic is within us all and truly requires next to no thought. It is a simple matter of trusting and being. I'm not talking about trusting a Higher power that exists outside of ourselves because I don't believe that's where It resides. Trust, in this regard is nothing more than a matter of reminding yourself, "I can do this. I can do it because I must." There's nothing else that needs to be considered complicating the matter. In some ways it is the easiest thing to do. You have to do something because Life has reminded you that control is not something within your grasp and so you cope by simply doing what you must.

For instance, when Aria broke her leg, my anxiety immediately kicked in and I was concerned about navigating school, clinic and the grocery store, just to name 3 places we go on a regular basis. I don't think my reaction or my concern was exceptionally anxious. It was a daunting task and I was nervous and intimidated by what I didn't yet understand but this is where time is such a gentle healer if one only allows it to works its magic. Aria has not been back to school since her injury and this has been just fine. She hasn't been up to it and has needed every moment of laying in front of the television to rest and heal. This week she had her chemotherapy, which really did a number on her stamina, which made keeping her home from school for another week easy. Her teacher has been terrific to send home activities and things to keep her stimulated, none of which we've done but will when Aria can sit at the table and do a project for more than 5 minutes. She may attend school next week for a few days. We'll take it as it comes. Clinic is easy since Krista told me to call her and she'd meet us with a wheelchair ready to go...problem solved. The grocery store was another matter altogether. You may recall that I mentioned having to run and grab a gallon of milk the other day and I was absolutely dreading it. I kept imagining the cart like some kind of unfinished well that I would slowly have to descend her into knowing I don't have a rope in which to retrieve her. I kept imagining my back bending like a young sappling threatening to snap in an instant. I imagine her sitting there complaining the entire time drooling whiney energy saturating and infecting Rianna. None of these images were inviting so it isn't a wonder I was avoiding the store.

Naturally people volunteered to help right and left as did Doc who quickly came to my aid and took care of everything. That was last week and yesterday (May 13, 2009) I took all 3 kids to the grocery store and we had a ball. Aria was in super spirits, creating an atmosphere of adventure and fun. The cart was not a deep dark well and putting her in it was simple and easy. I should credit the fact that I've been carrying her for 2 weeks now up and down 2 flights of stairs totally 32 steps in all, so I'm physically stronger and more confident. Although, Aria is beginning to make general complaints about her cast and being confined, "I hate this cast! This cast is No Fair!" she isn't losing herself in a pit of inflexible self-pity and this has made this particular detour that much more bearable. I should also mention that I was in a rather celebratory mood. Aria is already half-way done with this full leg cast and these 2 weeks have flown. I have such a sense of hope and this is also a strengthening force.

But despite my jubilant mood, the clinic this past Monday was sober as it is many times. There was a little 5 year old girl who I'm getting to know fairly well. We see her and her mom regularly and although I remember her diagnosis, which was a neuroblastoma that is in full remission, I couldn't remember why she is now neurologically impaired. She has limited speech and her motor skills are such that she appears as if she has cerebal palsy. She has mild tremors and a drunken kind of gait. She is undeterred, however, fearless and social. She and her mother are probably two of sweetest people I have ever had the privilege of meeting. Her mom told me that during her treatment for the tumor, she had a rare reaction to the chemotherapy that basically left her neurologically impaired. When it first happened 2 years ago, she looked as if she had Parkinson's and her tremors were very difficult to watch. She lost her speech and wasn't able to walk or sit or feed herself. The gains she has made in the last few years are incredible and reflect an innate tenacity as well as an unconditional devotion from her mother. Why they are still coming to clinic since her cancer has been cured was puzzling. It turns out that when she is given low dose chemo that keeps her immune system suppressed, her tremors disappear and she functions better. The problem is that she's immuno-suppressed and her risk for toxicity and secondary cancer as a result of constant chemotherapy is high. There is no end in sight for her treatment. They come to clinic every month or so and will until.......I don't know how to wrap my head around that. They are expecting a baby boy in another month, which shows me that life goes on despite hardship. This is their lot and they are dealing with it with such grace, integrity and genuine interest in the well being of others. I enjoy being in their company immensely. We have this sense of real community. Mom can't run around chasing after her daughter like she used to since she is 8 months pregnant so everyone helps. Her daughter crawled into my lap and we rocked in rocking chair while she snacked on oreos. She even cuddled into Doc for a little while, which was so sweet and tender. She reminds us to be sweet and tender and I'm grateful for her gift.

After about 2 hours of waiting another family appeared in the playroom; a mother, a grandmother and 2 little girls who were, I'm guessing, 5 and almost 3 years old. All four of them were like various sized angels walking around with a sort of hallowed mystic about them. They were playful and joyful and I was certain this was probably the end of treatment for them. The little girls were full of energy and looked terrific. I was so happy to see them and couldn't wait to find out about them. I was sitting in a rocking chair beside the grandmother and the mother who was holding the younger girl when I noticed that her little eyes were shaded on the inside of her nose as if she'd painted purple streaks beginning at the top of her nose to just beneath her eyes. It was an odd kind of black eye. Then I saw her arm and it was speckled with red dots and brown-green bruising. Then I noticed her hand and her little knuckles were brown as if a mini chocolate chip had melted perfectly upon each knuckle perch. I was so tempted to blurt out, "What on earth is going on with this little sweetheart?" Instead, I took a breath and gently said something like, "I haven't seen you folks before. I'm Julia and this is my family. We're here for treatment for my daughter Aria who has leukemia. What brings you here?" The grandmother beamed the most brilliant smile and told me her name. She told me that just last week her little almost 3 year old granddaughter was admitted for a rare blood disorder where she's not producing platelets, which is why she is covered head to toe in bruises. They basically only touch her skin and a bruise is left reminding them that something is very wrong. They were told that it would be easier to treat her if she 'just had leukemia.' When I heard her say that, an explosion went off in my mind. "It would be BETTER if she had leukemia?" I took a deep breath and look right into her eyes and said, "I have a take a moment and process that." I closed my eyes and breathed while she watched me. Her smile faded slightly. I told her I was sorry, so sorry that leukemia would be better than what they face now since I know intimately how difficult leukemia is. I asked her, "Are you ok?" It is so tempting at this stage to deflect the seeming simplicity of this question with some kind bravado that rings, "Oh sure! Yeah! We're fine. We'll get through this. She's a tough little cookie. No, yeah, we're good." It isn't a lie to say this but it is a layer of truth that acts as a protective shield to the deeper truth that lies just beneath. The real truth that screams, "I'm freaking out! I don't want to appear weak! I can't cry in front of these kids! I don't know what to do! I don't understand what's happening! I've never really had to be vulnerable before and I'm so uncomfortable with it!! I have to be brave and being brave means being happy and positive and smiley all the time! Right? Cause if I cry and show I'm scared, then I'm being negative and not courageous! Right?!" I know this very well.

Her initial reaction to my question was the predictable, "Oh yeah, we're ok." but then she said, " We just don't know." and her eyes looked distant and her voice became a whisper. They don't know. Her grand-daughter is doing well and they are committed to figuring out what to do but the unknowns they face are enormous. I wanted to shoulder some of their burden but I can't. I could only tell them how long we'd been coming and how well we've been treated. I told them how confident I was in the care Aria was receiving. I think she appreciated it and felt a degree of comfort. We ended our conversation with the classic shoulder shrug and head shake, "What-are-ya-gonna-do?" We left them at that and went to meet with Dr. Trobaugh.

Dr. Trobaugh took one look Aria in that wheelchair with her big purple cast and she was immediately a mother and not a doctor. She scrunched up her face and pouted, "Oh, dear! Bummer." I thought I heard a little boo-hoo but I can't be certain. It was wonderful seeing her relate to Aria in this way. Quickly she transformed back into her doctor self and reassured us that she didn't think her break had anything to do with leukemia nor did she think the healing process would be hindered in any way. Once again I was completely taken with by her confidence. She then told us that Aria's counts have significantly dropped to 830! This came as a bit of shock I must say. Just 2 weeks ago Aria's ANC was 2961 and 2 weeks before that we had increased her chemo just slightly because her ANC was 1911. Dr. Trobaugh didn't want to increase the chemo when her ANC was 2961 because Aria was dealing with the sniffles and a cold sore and wanted to keep her immune system up a little to fight whatever virus was threatening to take charge. An ANC of 830 is a significant drop and somewhat worrisome. Remember than an ANC of 500 or less gets Aria a hospital stay with no fresh fruit, vegetables, flowers or outdoor activities. Dr. Trobaugh wasn't alarmed. She considered the trauma of a broken leg and her body in healing over-drive definitely a contributing factor. The current chemo level could be adding to the problem. But the real concern is that she doesn't want Aria's counts to bottom out so we've backed off on her chemo a little and we'll recheck her counts in 2 weeks. Hopefully in the interim, Aria can avoid getting sick with such a low ANC. She really shouldn't go to school with an ANC below 1000 so I don't know if I'll be sending her to school next week. We'll just have to wait and see how she feels.

Aria is back on her steroids and if you're groaning reading that just consider for a moment that she's back on steroids AND she's in a full length cast that is beginning to itch. I have to laugh. She's actually doing really well. She has only 4 more doses to go and I'm really impressed with this round of steroid treatment. She's not as starving as she normally is and she isn't incessantly begging me for junk food or sweets. She's also not as moody as she has been in the past and this is enormous for me. She's getting a lot more rest and this seems to be helping stabilize her mood. Like I said, we still have 2 more days and a lot can happen in that time frame! I made sure to buy extra boxes of noodles just in case!

We're going to Priest Lake in Idaho this weekend for an over-nighter. This will be my first time away from home over-night since that infamous and horrible weekend trip to Seattle more than a year ago. I can't tell you how excited we are. We've rented a cabin on the lake and it ought to be really fun hanging out on the beach, having a campfire and just enjoying the views. Aria won't be able to do much but we'll try to keep her entertained as best we can. It will be nice just to get away for a short time.

This recent detour has simplified our lives in several respects and I'm learning to perfect the art of flexibility and acceptance. It isn't always easy and what's makes it infinitely more difficult is intellectual rigidity. "I - want - what - I - want - when - I - want - it" mentality isn't conducive to this path and I've unfortunately had to learn that the hard way once in a while. I am learning though and even though my path seems narrower my balance is getting better. I'm finding a new stride. I seem to have to a new walking staff, although I can't yet describe what it looks like. My backpack feel lighter. Could that be possible? I'm in the sunshine surrounded by a meadow on this path but I can see trees ahead. Some shade? Some respite? I don't know. I don't care. It is what it is and whatever it is, whatever comes, I'll be fine and you will too. ~j


  1. Julia,
    This is a wonderful thing you are doing. Wouldn't is be great if you could put this in book form? How you are dealing with this and with the progress as well as set backs would be so helpful to others.For someone to pick this up in the waiting room and read would be such a help.Maybe what you write here could be put into a plactic sleeve book and left in the waiting
    room. You really dso have a way with words.
    Have fun on your trip.
    Nancy Jo {mj farmgirl}

  2. Julia....How wonderful! I see an awesome book in your future. Best of luck on your latest venture.
    Best wishes and success!


  3. Jushie,
    You are on the right track with sharing your story in this blog format. Good for you for getting this started! I hope lots of people read your entries and are moved by them as I am every single time. I love you.

  4. "In some ways it is the easiest thing to do."

    Yes. I don't even remember "the moment" where it began. You just leap into this vast unknown and make it work. YOU DO NOT HAVE A CHOICE, nor the time to consider the alternative.

    I'm so stinkin' proud of you. This is huge. Now we need to get the word out. When you are ready, let me know. I can advocate and promote like there's no tomorrow.

    Love you, tribeswomyn.

  5. This is a great thing, Julia. I know so many lives can be touched by this blog. You and little Aria are an inspiration.

    I pray you have a wonderful little trip this weekend and enjoy every minute of it.


  6. Julia this is such a blessed opportunity for other parents of children with Cancer to follow! I think you were put on this path for a purpose and your writing helps so many through such a painful experience!

    Love and Kisses to my favorite Goddess!
    Miss ya,

  7. I find myself feeling so very familiar with you, and yet I could be no more different, though i too am a mother, have one child with a significant ongoing illness, and have always had those same feelings you did "
    What would I do? How would I deal with having one of my children struck with a life threatening illness?

    I guess, fifteen years down the road, it is a journey, but it only needs to be taken one day at a time, though I remember the first few months of feeling completely swamped with terror, almost never sleeping, finding myself halfway downstairs in the middle of the night, sure I had forgotten to give my daughter her medicine, or did my son need medicine too? One night I went right outside in the snow, I was positive I was supposed to be taking care of soeone's dog and had completely forgotten about it....

    I am so impressed by your family, your supportive friends, and by the fact you have chosen to share your travels down a path you never expected. The immediacy of our children's needs, particularly when they are ill, takes its place by grounding us in the moment. Thank you for letting us share the voyage.


  8. Wow. I am just amazed at your strength, and your way with words. You (and Aria!) are awesome. Thanks so much for sharing. I plan to be very very very thankful for every single healthy day all my kids have!