5.27.2013

Keeping an eye on the silver lining.

My mom is extremely good at finding things to be thankful for in the darkest of times.  This past week has been the darkest of times for me.  If I could take a drug to wipe it from my memory, I would.

My girls and I have been suffering with a GI bug that leaves us running to the bathroom and in Hazel's case, running to the ER for fluids.

This same bug kept my dad in the local hospital last week and after a 2 days at home, we had him flown back to Cleveland Clinic where he remains in very critical condition.  It's no longer just the GI bug, it's a bacteria infection in his blood, it's pneumonia,  it's impaired kidneys, it's scary low blood pressure, it's a rapid heart beat, it's a lot of tests/ questions/ specialist putting the pieces of the puzzle together.

Dad, Jake, Mahlon & I on a recent hike through Oil Creek State Park.  About 2 weeks ago my mom's cousin, Becky (taking the pic) and her husband enjoyed a week-long visit during a massive RV trip around the country.  My dad took many mile-long hikes with them which was so wonderful!

However, through it all, I've noted the silver linings and that is what I want to share with you:

  • I am married to a knowledgeable nurse who is strong enough to stand up to my father and refuse to let me drive him to Cleveland (which dad and I were determined to attempt despite the fact that he couldn't stand and his bp was 60/40).
  • At the local ER when the fabulous (local!) nurse was confirming past medical history details, I got to hear my dad say "I HAD AML {acute myeloid leukemia), but I don't any longer".  I had never heard him or any of us say that, in fact I still struggle to think that way... but what a huge VICTORY he has in that one small sentence.
  • It makes no logical sense, but I had such a sense of pride when the Cleveland Clinic helicopter arrived at our local ER.  The ER staff was a buzz over their impressive bird, it was the largest they'd ever seen.  Clearly I watch too much science fiction, but watching that bird take-off with my barely stable father cocooned inside, I couldn't help but feel comforted with the thought that he was returning to the "mother ship".
    • I shared that thought with him that evening in Cleveland and was rewarded with a small smile.  I think he felt the same way.  We have such trust and confidence in the Cleveland Clinic teams.
  • My mom was in Alaska and for the past week dad and I have encouraged her to stay there as planned helping my sister prepare for her move to Germany.  On Saturday, when it became apparent that he was taking a turn, she was able to be on a plane and with us at the Clinic within about 20 hours.  She was with my sister during her greatest time of need and now is with my dad.  She's super woman and I am so thankful for the perfect timing of how this transpired.
  • My rough estimate is that my dad lived on the leukemia/transplant (G110 & G111) floor of the Cleveland Clinic for about 4 months this past year.  We couldn't wait to be done with that chapter of our life.  Saturday evening- through Sunday afternoon (when they finally intubated & sedated him), were extremely difficult for my dad.  ICU is loud, crowded, busy... miserable.  He and I asked every specialist if they could transfer him "upstairs".  While he's still too critical for that move, I'm thankful now that we have spent so much time "upstairs" because there is a level of familiarity and comfort at the thought that he will be moved there as soon as possible.  Finding a home away from home is a huge deal when you're under stress... just never though I'd consider a hospital wing to be "home".
  • Yesterday morning, a bone marrow Doctor informed us that the preliminary tests show that his "bone marrow looks beautiful".  We're praying that this is not GvH (graft versus host) ie, not symptoms of his body rejecting his stem cell transplant.  We'll know more tomorrow, today I'll rest in the assurance that he has beautiful bone marrow.
  • My family has a huge support network that jumps right in.  I can't tell you how many texts, calls & messages we've received.  People have run errands, watched the kids, stayed with my overwhelmed Grandmother, driven 6+ hours to get us where we need to be, prayed for us, offered housing/cars/meals/ cleaning/ airline tickets...  I literally feel my heart growing with all the support.  God is very near during times like these.


In related news, our friend, Allie Armstrong, who we met at the beginning of my dad's AML journey continues to desperately need a miracle.  Her blog, while heart breaking at times, is such a source of faith and encouragement.  Her friends and family have organized a 5K to assist Allie's family.  If you live near Cuyohoga Falls, OH, please join me at this event!  Here are the details for Rallie for Allie.

1 comment:

  1. SNIFF, SNIFF. I didn't know all of those things. . . Thank you for sharing them. I think I'll go back to packing boxes of sh$t and think about all of these wonderful things. You are awesome, Julie. Thank you for your strength and positive spirit.
    MO

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