Saturday, January 21, 2012

The PICC That Wouldn't Stay

Once upon a time there was a little PICC Line. It had no name. The PICC Line was born on January 5th, 2012 in a land called MaloriesArm (which had two capital letters in its name for no good reason). That pesky little PICC Line just could not sit still. In fact, every time there was not something holding it down, it tried to leave MaloriesArm and see the light of day. So, when the kind nurses from Children's Hospital tried to change the bandage covering the PICC Line on Thursday, it decided to venture out on its own. As soon as the bandage was off, so was the PICC, racing from MaloriesArm in search of adventure and fresh air. The nurses were not amused, and neither were we. Thus, the little PICC Line without a name was replaced today by surgical procedure. See you later, little PICC Line. The new one is stitched into place to ensure it will not try any shenanigans... and they all lived happily ever after.

OK, I am accustomed to ad-libbing bedtime stories to "cut them short" as Rachel puts it, and help the twins get to bed on time when they pick a longer book to read at bedtime. The story covers the gist of the last few days, as Mal had to have her PICC replaced today because the first one seemed intent on getting out of her arm. Yesterday, during Mal's weekly bandage change and site cleaning, the PICC Line just started to progress out of her arm as soon as the tape holding it down was removed. This was the second week in a row that it migrated. Once the IV line had made it out of the vein, it could not just be shoved back in for risk of infection, so we had no choice but to have it replaced today. So, immediately following Mal's 11th radiation treatment this morning, she was taken over to the same-day surgery center and the IV line was replaced. This would not have been so bad if it didn't entail a second anesthesia within three hours.

Rachel and I were very worried about Mal not being able to follow routine and eat after she awoke from her radiation treatment, but she was great. She snuggled with me, played paper dolls with Rach, and watched Sesame Street in the two hours between her waking up from radiation and her second procedure. She could not eat or drink because she had to be put under again, but she didn't protest much, and seemingly understood every time we told her that she had to wait.

So, two weeks down and four-and-a-half to go. 33.33% of radiation complete. The fatigue is definitely setting in for Mal (and me too), but we have the wonderful respite of a weekend to aid us in getting ready for next week. Five days a week at the hospital, today for almost 8 hours, can tire out even the toughest of kids and parents. Top that with the fact that Mal's blood counts are dipping, meaning that her immune system is lower than it should be, and we could really use some rest. Although the nurse who gave us the blood test results did a great job of assuring us that her counts are in the "normal" range for a cancer patient, it is still alarming to see a test result that has "LOW" in all capital letters alongside every meaningful result. But, as you can read above, the story of The PICC Line That Wouldn't Stay has a happy ending... I mean, it says right there that "they all lived happily ever after." We have seen no major complications from treatment yet, and have faith in Jesus that all will be well for us for the next 22 treatments.

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  1. Hello my dear family, I just sent an email that's totally unnecessary, now. Maybe the PICC Line Protectors I sent can be given to someone else, or maybe they can just be used as a bathtub toy, or maybe they can be hidden till after the next 22 treatments and Mal and Micah can have a "destroying" of the PICC Line Protectors party, along the same line as burning the home loan payments once the home is paid for. 33.33% of the way there. Not a bad batting average to have. And, continuing with the baseball factoids, low counts are going to mean LOW strikeouts, LOW errors, LOW runs allowed by the other teams, etc., etc., etc. GO MAL GO!

  2. I mean low runs SCORED by the other teams. Stupid baseball factoids that I'm ignorant about is not the brightest way to comment when we're talking about your adorable babygirl. I'm learning that drugs that could bring in alot of street money don't bring in the ability to communicate in common sense thought. i hope and pray this stinking rush for fresh air the old PICC Line attempted didn't make for another difficult procedure for little Mal. what a trooper she's being. So much love to you all!

  3. I found you by accident .... I am a mother a a baby diagnosed at age 8 months with ependymoma.

    I have created a support group that was an ongoing support group for 13 years is moved into a website:

    my sons site is

    You sound very new to this world of cancer ... and you are the 2nd twin boy /girl - with this diagnoses in the last 6 months.

    Prayers to your family .. would love to speak with you ...248-242-2583