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Wednesday, August 24, 2011

Better Days - Day 57

I am trying to wrap my head around how I feel this week and am struggling to find exact words for a quality description.  It has been exhausting to say the least. Ironic too, I suppose, because I should probably be heading to bed now instead of typing but what usually happens is that too many thoughts swirl around once the lights go out and so staying up a bit with this blog offers some closure to the day.  Anything that helps provide some extra strength for tomorrow is invaluable. So, here we are.

School started for me this week and the jump (more like leap) from our version of the gentle summer swagger to sprinting on the weekly treadmill has begun.  In the midst of all of this craziness, I've had these brief yet very poignant moments occur much more frequently in the last couple of months.  IMaybe even as much as once per day.  These are moments when you hear or see something that stops you in your tracks because it grabs your full attention for a brief moment in time.  In that moment, it either speaks to you or provides tremendous meaning.  Today it was a song on the radio that came on exactly when I turned my car on to drive home from work.  Every word was crystal clear and my emotions were stirred almost like I was hearing it for the first time.  I've probably heard it 1000 times over and likely changed the channel a few times when not in the mood in the past....but today it provided a little bit of clarity, a little bit of relief, and a sentiment of "Don't worry" I think I need to remind myself of more often.

Ellie has had a rough week.  Three straight days of out-patient visits with our shortest one being 4 hours which was today.  I'm not sure we're done quite yet either with potential labs to do on Friday.  We knew heading into last weekend that her blood counts were starting to go way down.  Her Hemoglobin was just above 8 on Friday and platelets had fallen from 300 to 150 in just three days.  Nice to know the Chemo is working, I suppose.  So, come Monday she was below 8 for Hemoglobin and required a transfusion.  The routine is tough to anticipate on days like this because you head into the lab not knowing quite what to expect from her blood counts, do the labs, wait for results, and then if she needs a transfusion it sets off this paperwork process of ordering the blood, delivering the blood and then transfusing....all in all about an 8 hour day.  Tuesday was our weekly chemo day which El started with an LP procedure for a spinal shot of Methotrexate (this was #3 of 4 for Consolidation).  After she was in recovery and ready for her two shots of PEG-A and IV push of Vincristine, there was more waiting for it to be correctly ordered and delivered.  The PEG-A shots are done through her legs and thus require a 2 hour post shot observation because of the high chance of an allergic reaction.  Today she had to go back for a platelet transfusion as that had dropped all the way from 150 on Friday to 7 this morning.  On top of this, she has had Timmy's cold all week with a not-so-nice cough and a low grade fever of about 99.7 (just barely below the limit to head over to the ER).  To say we are on pins and needles about possibly rushing to the hospital for a fever spike is putting it mildly.  This part of the journey, dealing with regular cold bugs in the midst of all the chemo, has been the worst part for me thus far.

The Saint in all of this outside of Ellie being her usually brave self has been Polly.  She has persevered through the long days at LPCH to allow me to teach the first few days of the new school year and kept up her strength to endure the accumulation of paperwork setbacks at the hospital.  She is my rock and my teammate and every show of strength I see from her fills me with faith that we both will eventually see Better Days.  I think we both feel sometimes like we're dodging bullets around here (like today where this mild fever is thankfully staying 0.7 degrees lower than the ER cutoff line), but at the end of this day....Ellie is sleeping soundly and we were able to get through another step of treatment.

Just as a refresher (I get asked this alot), Ellie's treatment of about 2.5 years has three phases - Induction (1 month), Consolidation (6-9 months), and Long Term Maintenance (2 years).  She has completed Induction and now is in Consolidation.  The Consolidation phase has three sub phases - Consolidation (I know the sub phase name is the same as the general phase name) (8 weeks), Interim Maintenance (8 weeks), and Delayed Intensification (8 weeks).  We are currently in week 3 of Consolidation.  She has one more day of Chemo for the first half of Consolidation next Tuesday and then we will have to make blood counts before moving on to the second four weeks of the sub phase.  Her nausea levels have increased tremendously but luckily the Zofran we have to give her acts quickly.  While we wait for the Zofran

Tomorrow is Thursday and a brief 24 hr break from the hospital.  If it is even a slightly better day than today....that will be enough for me.  We are praying this cough goes away very soon.  Her ANC levels will likely be neutropenic by the weekend and we all have no desire to go in-patient for an entire week.  We shall see.  Time now to rest and recharge.  I'll leave you with the song lyrics from my car ride home today as my prayer tonight for Better Days in the hopefully not so distant future.  Please keep praying for my little girl - she means everything to us.

"Better Days" by The Goo Goo Dolls

And you asked me what I want this year
and I try to make this kind and clear
just a chance that maybe we'll find better days
'cause I don't need boxes wrapped in strings
and designer love and empty things
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I need some place simple where we could live
and something only you can give
and that's faith and trust and peace while we're alive
and the one poor child who saved this world
and there's ten million more who probably could
if we all just stopped and said a prayer for them

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

I wish everyone was loved tonight
and somehow stop this endless fight
just a chance that maybe we'll find better days

So take these words and sing out loud
'cause everyone is forgiven now
'cause tonight's the night the world begins again

'cause tonight's the night the world begins again 


**UPDATE (Thurs Morning) - Ellie was admitted to the hospital this morning with a higher fever.  Please pray this is a quick stay....

2 comments:

  1. All our good thoughts and prayers are going your way.

    Love,
    Aunt Jeanne

    ReplyDelete
  2. Jeff and Polly we are praying for Ellie and better days for all of you. Keep the faith, there is so much love being sent your way.

    Love, Dixie Lee and Ralph

    ReplyDelete