Being Here - Day 41

Remember in a post about a week ago, I said meeting blood counts to trigger the start of Consolidation would be a mere "formality"?  Yeah, that phrase has now been eliminated from the blogging (and general verbal communication for that matter) repertoire.  There are no expected outcomes here, especially with schedules, that cannot be changed in every which way last minute with cancer.  I really should know that by now.  I think I can say this about other things in my life as well (definitely in this case), I am trying to shake the NEWBIE tag long before proven it should come off.  Today, at long last, after a fantastically energetic weekend Ellie went in for her 7:15am blood draw, gave the nurse her arm with a smile, and promptly put up a solid 820 on the ANC chart and 300+ on the platelet count, so we be good now to begin Consolidation tomorrow.  Yes, officially.  Good thing El is on top of things, she certainly never seemed worried her counts wouldn't eventually come up for 5 days straight AND she put 5 words together yesterday in a sentence for the first time.  Who is teaching who here?!

Tomorrow starts at about 5:30am.  Once the kids are up and ready to go, we head to LPCH for a 7am check in.  Ellie will have the LP (lumbar puncture in her spine for a shot of Methotrexate) and what should be her last dressing change on her PICC line while she is asleep.  There will not be a PICC line after her Port is put in next week.  Procedure is at 8:30am and she'll be done somewhere after 9 where she'll be transferred to recovery.  After recovery (30 min or so), we head to a room for the rest of the day where she'll get 2-3 hours of hydration followed by her chemo injections given through her PICC line followed by 4 more hours of hydration.  Long - yes.  Enjoyable - we'll see.  Doable - Absolutely.  With tomorrow, we are one step and one day closer to a cure.

This past weekend was filled with sidewalk chalk drawing, riding bikes, running in the park, kicking soccer balls, mini stroller hallway races, locking/unlocking the car, making play-dough noodles, eating an INCREDIBLE french toast casserole, and watching Elmo sing about how lovely the number "4" is (about 38 times, I'd say).  This is how weekends should be.  It makes you forget for a longer than usual amount of time that she is still in fact sick.  So, the sobering reminder that pops in your head come Monday morning preparing to head out for blood labs was a but tougher than usual this morning.  Consolidation will knock her immune system way down within the next few days so we may not have the energy in her for a while.  We're hopeful she can buck that trend as they tell us some do.

Day by day is the best way to go about this for us.  It is a relatively brand new way to look at things for me and it has taken a little getting used to but to truly understand the moment without a thought of too much down the road has actually been refreshing on many occasions.  We are focused on tomorrow, making the best of a long day at the hospital and making sure she is comfortable, happy, and gets everything she needs (including a fourth serving of yogurt should the request be made).  Obviously the casualty can and has been the inability to make any long term plans (meaning a week from now to a month to anything longer than that).  Quite honestly September and October are a complete unknown right now in terms of where we'll be.  We, unfortunately, made the decision to cancel the twins first year of pre-school after being welcomed so warmly by the school we had chosen here in Redwood City.  The risk of cold and flu bugs getting to Ellie (or Timmy bringing them home for her) is just too big right now.  We hope to rejoin in a year with the 3 year olds.  No plans are really being made for anything more than, as I said, a few days from now.  Interestingly enough, while living day by day can be tough with an unknown future ahead (and believe me our family plans with the best of them at times), a small sense of freedom has definitely set in for me from letting all these plans go for now.  Especially any burdens of those not yet made.  I'm sure they will present themselves when its time and in realizing this, all I want to do is be "here" for today in every sense of the word.  I sincerely believe (and HOPE) this train of thought, however hard it will be to maintain, will be a major key to bringing us closer to what Polly and I want the most - many more smile filled weekends, like the one we just had.