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Saturday, November 15, 2008

Connecting the Dots

November 15, 2008

My updates have fallen short on detail and cleverness lately, so I'll try to connect the dots a little.

The first week of November, Erin spent most of her time feeling like she had drank a hefty dose of paint thinner. We still don't know how to parcel out the blame: stomach virus, seasonal allergies, or chemo side effects, but the cumulative effect was awful. The second week of November (this past week), Erin has fared much better and has slowly, but surely, regained energy and cut back on pain meds.

This leads me to the next observation: it doesn't seem fair that cancer patients have to do the chemo dance on the days they feel the best. Doesn't it seem more logical to let them feel well and save the chemo for when they wouldn't feel like doing anything anyway? Sigh.

Thursday was a typical scan day at a major metropolitan children's hospital with a patient population a wee bit larger than it was designed to handle on a day with only one CT scanner working. Oh, and make sure you don't start bright and early, so there is barely enough time to fit everything in. For fun, order a zealous tech who needs at least four extra, unordered views of the bone scan, just because she might get a bonus if she spots something no one else can see [sidenote: did you realize that a tiny bit of spilled radioactive tracer can get on your PICC line cover, and if it does it will smear around on your head when you raise your arms above your head during the scan, thus requiring a head washing and more scans to make sure you don't have a skull tumor?]. I guess the best part was watching the doctor stitch Erin's PICC line back into her skin with just a lidocaine appetizer.

Ultimately, the day prepared us to hear that the pemetrexed hadn't done the work we'd hoped for. Erin's tumors are slightly bigger, though perhaps more necrotic looking.

Friday was better, timingwise. Erin has an overnight fieldtrip to Austin scheduled for next Friday and Saturday, so if we were going to get a round of chemo in, we needed to start yesterday. That's what we did, and we got started early enough and things ran smoothly enough that we beat the traffic out of town and got home in plenty of time to have Teddy time.

On Thursday, when we found out we needed to be in Houston for several days, we sent out a call for help. On short notice, the amazing Benson family dropped all their weekend plans in favor of driving down to the Houston area, just so Clayton Sue could participate in "Fun with Chemo." Her parents met us this morning at the Barnes and Noble near the hospital, and she shooed them away before we had much of a chance to visit. Since then, CS and Erin have been shoulder to shoulder, chitchatting, watching movies, playing computer games, beading lanyards, and (I hope you are reading Ellen) doing homework.

Lara and Elle Weberling also drove in from The Woodlands to act as our beading supplier and also provide us with mirth, humor, and companionship!

I have to say that the chemo schedule got pretty disrupted by the 5:00 p.m. start, but we're almost done post-hydrating and will head out to the Marriott for the evening shortly. Since we can't start tomrrow until 3:00, I think we'll try to get in to see Madagascar before hand, or do whatever two wild eleven-year-olds want.

4 comments:

  1. Hi. I just wanted to leave you a note to let you know that I am praying for you, Erin, and your entire family, tonight! Erin you are SOOoOO strong girlfriend. -Superwoman Strong.

    Peace & Love to you.

    Reese
    Dallas, Texas.

    ReplyDelete
  2. Hi there,

    Wanted to stop by and invite you to join us in the fight for more awareness of childhood cancers.

    www.curechildhoodcancer.ning.com

    Thank you.
    Kathi
    www.caringbridge.org/visit/kelsiemckune

    ReplyDelete
  3. I hate it Erin has been having a bad time...love it that you have such wonderful friends. Hope things will get better and better from here on out!

    Shea
    My contribution to the Erin Project coming soon!

    ReplyDelete
  4. Sorry the scans didn't show what we all wanted. Saying prayers that the tumors are dying and you get some new evidence of that soon. HOpe her energy levels stay up and she feels good. stay strong! Love, Missy Morgan superRyan's mom

    ReplyDelete