The Clinic - Day 8

Very draining day.  Several parts where Polly had to hold me up and others where I held her.  This is alot.  I was thinking today in the waiting room about how this is a little like the hike to half dome in Yosemite.  Polly and I made the trek almost a year to the day before the twins were born.  It is a marathon 18 miles round trip and the first 2 miles are just a whole lot of "steep".  With 17 miles left to go, your chest is already pounding, your legs have yet to fully warm up, your breakfast is doing somersaults in your belly, and you start to wonder why in god's good name did you decide to actually do this today.  If you've never done the hike before, you cannot see half dome until you are just about at the base so you are heading "up" with only faith that yer going in the right direction.  And there is very little than can prepare you for how difficult it is (especially that cable climb the last 500 feet to the top).  That being said, half dome pales in comparison to this and we're still in that awful first two mile stretch.

We took Ellie back to LPCH at 7am this morning for a full 6 hours.  She was in pre-op for an hour to get her injection sites numbed and then Polly and I sat with her in the procedure room (not quite an O.R. but close) until she went to sleep.  She had a sample of bone marrow taken for her Day 8 data point and an intrathecal injection (streight into her spine) of Methotrexate.  I don't care how simple the procedure might have been according to the doctor....to see your child laying on a table with 10 machines around her while she worriedly looks up as things are being attached to her is awful.  Damn this disease....

The procedure took about 45 min and then Polly and I met her in recovery.  The nice thing about recovery is that we know our daughter's tendencies now and can easily provide the one thing that makes her feel better - food.  She's eating Yo Baby Plain yogurt now like it is going out of style.  Seriously, Whole Foods should let us bypass the store now and just let us back the car up to the loading dock upon arrival.  Prior to her getting out of surgery, we were able to meet briefly with one of the attending docs who gave us the cytogenetic report we had been waiting for.  Everything came back as expected on the chromosomes for the basic form of ALL.  This was good news because there were no adverse or strange mutations that they look for which could worsen her prognosis.

The hardest thing right now is that we, of course, are looking for reassurance which no doctor can give 100%.  I've felt like patience was a virtue I had attained long ago.  It is just tough to hear half answers that are not completely definitive and so being patient is very difficult.  While we get tidbits of what is supposed to be good news, I hope you'll excuse us for not leaping out of our seats with joy.

After she came fully out of anethesia, we were taken to a small room for her Day 8 chemo treatments.  She recieves both Vincristine and Daunorubicin through her PICC line on these four major outpatient days (seemingly every Wednesday at this point) during the Induction phase.  She handles stuff through her PICC line now quite well but the pain from the bone marrow poke not so much.  I would say my patience wears thin here because as soon as you ask for pain meds, it takes an hour of paperwork for it to get to her.  It isn't the nurses' fault.  Their patience with us is incredible, certainly alot better than some of the 2nd year resident docs we've seen both with Timmy and on a couple of occasions last week with Ellie.  Its part of being at a research hospital, but its still my daughter screaming at length in front of us.  I am praying that this pattern of discomfort gets easier the more we visit the clinic.

We were fully introduced to the clinic lifestyle today.  The place where we will be going now twice a week for close to the next 9 months.  Its one of those incredible crossovers you do walking through those double doors for the first time as a patient after spending countless times walking by it on the outside or noticing the clinic's sign from afar.  Inside is a large waiting room of families going through the same things we are though perhaps at different stages.  Several of the kids there know the staff by their first names so it felt like a place we could be very comfortable at somewhere down the line.  Its a place nobody asks to be a part of and at least for us today was a place for tears.  Deep down, I know they work their fair share of miracles, so for Ellie's sake, I will embrace it and do as I'm told.

Polly made the very difficult decision to have Ellie's hair cut tomorrow by her stylist.  We're told it will begin falling out in about a week and so we're going to do this now to save ourselves some grief.  Never imagined her first haircut would be like this.  But this way, we get to do it on our own family's terms instead of cancer's terms.  I'm so thankful that she won't remember most of this.

Polly and I made it to the top of half dome eventually.  It was my second time climbing that trail so it was more enjoyable to see Polly get the rush of accomplishment than anything else.  We hiked down the hill after 12 hours round trip only to find our car had a flat tire.  It's never straight forward with us, haven't you figured that out by now?  We had control of our feet on that day and when all was said and done, we handled what was thrown at us.  After our tears in the waiting room today, I had to remind myself that though it isn't tangible, I must keep control of my faith.  Its damn hard, but with no 100% reassurances, faith is all we have.
 
Thankyou for listening to me think out loud tonight.  Please keep praying for my little girl.