Day to Day - Day 14

A routine feels good.  I think it goes beyond just saying we are creatures of habit; it has more to do with the desire to feel comfortable with things that are familiar and those which we love to do.  A routine settles nerves and gives us a little more peace of mind (you hope) of what we can expect a bit down the road.  The challenge, of course, is being able to meet the major moments of adversity and find our way back to a routine that helps us move forward....with proper perspective.

There just isn't time most days right now to be tired and it is remarkable how your body adjusts for the sake of your child.  In the past few days, Ellie has reverted back to a pattern of sleep that is reminiscent of those first three months of the twins lives.  You know those nights where one kid wakes at midnight screaming which then cues the sleeping twin next to him/her to leap by two feet off their own mattress into the air and immediately contend for the right of who can scream louder.  After about 20 minutes of changing diapers and a few soothing words (all be it slightly incomprehensible sentences I've realized when I am half asleep), they both fall back to sleep only to repeat this glorious ritual twice more before the sun comes up.  Ellie's digestive system is all stopped up from a mixture of the only foods she'll agree to eat and the two chemo drugs she gets on Wednesdays.  Her pain is very apparent and about the only thing we can do apart from apply meds to couter act the predicament is to change her as often as we can.  Throw in our damn friend Dexamethasone (the steroid - AKA the annoying friend you are obligated to invite to the party), which is Ellie's currently ingested item that can be summed up as "the cause of and solution to all of life's problems", and we have a very unhappy child that is going through hell right now.  Are we tired?  Of course.  But its the new routine that moves us one step closer to a cure. 

I have to add on a much lighter note that there are moments in the madness late at night that bring a wonderful sense of what life is all about.  For instance, when Timmy wakes due to Ellie's unhappiness and I come in to tend to him while Polly is with Ellie.  I ask him to help me look for his paci  in his bed (which he pretends to do but never finds anything) and then responds immediately to my request to lay down and try to go back to sleep knowing we need to be with Ellie right now.  Moments later, he is snoring face down on his knees with his butt in the air.  Also recently, Chole (our dog) sneezed nearby and we hear Timmy blurt out "Bless YOU CHLOE!" (when did he learn to say "bless you"????  when did he start using a third word in a sentence????)  With all the worry and fatigue that goes along with this ordeal, moments like that are priceless and bring a much needed smile. 

Other daily duties - We have to flush her PICC line twice a day with Heparin to prevent any clots, change the input caps twice a week and keep the line as sterile as we can for chemo days.  The PICC line, by the way, has two inputs that come out her upper right arm and are attached to a major vein near her heart on the other end.  It's like a much more effective (and comfortable) I.V. for her.  She has taken charge of the situation when we do the flushing and been known to tell Timmy to stay away and reminds Polly or I not to forget the "other line" when cleaning.  Incidently, The word "other" seems to play an interesting role right now.  In her crib, she sleeps with two stuffed bunnies so aptly named - "Bubah" and "Other Bubah".  Well, what else would you name them?!

She has gotten very good at verbalizing what food she wants which is a welcome relief to the communication barrier that comes with infants and young toddlers who do desprately want to tell you what they are thinking.  So, at 5am now when she may spend the final hour sleeping with us in bed, we are awakened by the familiar directive of "Baby YOGURT!" to send us on our way to get this day started.  Trial by fire has taught me to bring several yogurts at a time.  2 year old steroid fueled hunger is not to be questioned NOR messed with.  Her active and ever expanding vocabulary gives us quality direction, provides insight into the routine that works for her in this moment, and thus provides us with a small sense of comfort to help her fight.

Tomorrow is another major chemo day at the clinic.  She gets two more heavy doses of the Vincristine and Danorubicin but also gets to stop the steroid, so we hope some of these awful side effects will subside by the weekend.  I did get a smile today when she was laying on the couch before I left for work....a great reminder that our El-Belle is still in there alive and well.  Let's pray all goes smoothly.

Once a year, I go up to St Anthony's in the SF tenderloin to chaperone a class of students who spend the day working at the foundation feeding and helping the most densely populated poverty stricken area of the Bay Area.  Between the morning service hours and lunch in the main dining hall with the homeless folks, we get a chance to sit in the very serene St Boniface chapel for a little while.  This past spring when I went, I sat down in one of the front pews next to three folks who were doing their daily Rosary devotions.  I admired their devout responsibility to the repetition of prayers despite the very obvious hardships they faced outside those walls.  The intent with their voices and the concentrated effort on their faces showed a tremendous commitment to their routine of faith.  Much like the daily routine that is evolving in front of us right now that brings comfort in little parts to Ellie during a troubling day and ultimately helps us move forward to where we want to go.