Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma



Monday, March 5, 2012

The New Normal

We're here.  We're back home.  We made it.  Three exhausting days of driving finally over.  Now the fun begins!  We've spent the better half of the day driving around Winchester, filling prescriptions, returning the rental car, and trying to find a lab to do Adam's thrice-weekly bloodwork.  Thank God for Winchester Medical Center.  I never thought I'd be putting those words together in one sentence.  But, the people at the Diagnostic center were great this morning.  I can draw Adam's blood at home myself, and just drop in the tubes every Monday, Wednesday and Friday.  Labcorp wouldn't do it.  Some crap about liability, yadda-yadda-yadda.  But, WMC... no problem.  And they set up an account for us, so we just get a bill once a month.  Fantastic.  Unfortunately with all the hubbub this morning, I had forgotten that Adam needed to be off his pump for at least 1 1/2 hours before drawing blood.  So we disconnected, ran some errands, had some lunch (so not easy to do when one is on a sodium-free/gluten-free diet), and went back to the hospital.  Then I realized that I'd left the house without a single syringe, so they had to stick Adam anyway to draw blood.  Poor Adam.  At least they gave me a bag of vials and urine containers, so from now on we just get samples in the privacy of our own home.  I know this will be easy once we get the hang of things, but man this is a steep learning curve.  This morning's bag change was a debacle.  I got everything out to start prepping bags, but couldn't find any flushes, so I ran upstairs to hunt through the massive box of supplies that now takes up the entirety of Adam's office.  I found a flush, ran downstairs, and the medicine bags were missing off the dining table.  Finlay had decided to "help" and had put the bags back into the box in the living room.  I found him methodically taking bags from one box, transferring them into another box, and back again with absolute serious precision.  My big helper.  We finally got the bags prepped, Adam bathed, pump programmed, and hooked back up again an hour later than scheduled.  Oh well.  He also had to miss a dose because of the bloodwork adventure, so his treatment dose will be a bit off today.  Adam's been wearing his Camelbak today for convenience, and safety as it keeps all the tubing on his back instead of hanging down by his side where little children could run past and get tangled up.  Ali thinks Adam is now Ironman and insisted on having an Ironman pack like Daddy.  So, he's been running around with his Toy Story backpack on, complete with extension cord hanging out the side.  I love it.

Thankfully, Adam's parents are hanging around for a few extra days before going back to London.  I haven't been able to prepare food, give Ali his medications, clothe the children, nothing.  I'm terrified of what it's going to be like when they leave us at the end of the week.  You may find my children roaming the streets of Berryville in tattered clothing, dirty faces, and searching dumpsters for food.  If you see them, please only give them grass-fed meat or organic produce.  We must keep up our standards, you know.

2 comments:

  1. Welcome home!! You are going to ROCK this! I am so proud of you guys!

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