Thursday, January 19, 2012

Dynamic Routine

Routines are nice. They help you to plan your day by knowing what to expect to happen at any given time. But, when you get too stuck in a routine, you find yourself in a rut, challenged to break the inertia of a routine that has become a habit. On the other hand, people who say they like to have every day be completely different from the last are liars. No one wants everyday to be completely different – because if you ever found something that you loved to do, you would have to dismiss it and just move along the next day. So, we all find some niche somewhere between being a slave to a routine and complete unpredictability in our lives. Therefore, it is not surprising that the past week has brought some new structure to our lives, but at the same time a level of volatility that certainly is keeping life interesting.

All of the doctors and nurses told us that eventually we would find our rhythm in regards to getting Mal to radiation in the mornings, and they we right. Our new routine may not be comfortable, but it will work for the next month and a week. Rachel wakes up just after five to get through the shower, with me waking up about 20 minutes later to get through the wash. We wake Mal to leave for treatment at around 6:15 and are out the door by 6:30 on days where Micah stays home with a sitter. On the days where Micah has to go to another person’s house for care, we back up the schedule by 15 minutes. Mal gets to watch a movie on the way to the hospital, and very rarely makes a peep during the ride. Once we arrive at the Siteman Cancer Center, we go to the small children’s waiting area to await our nurse. Mal gets her vitals taken, and then is anesthetized for treatment by about 7:30. Typically Mal wakes up about 30-40 minutes later, and we turn the radiation recovery room into our breakfast nook for 20 or so minutes after that. Mal Pal’s breakfasts now consist of Pop-Tarts and flavored applesauce, with the occasional Cheetos or Chex Mix thrown in to keep her from throwing a fit while recovering from the anesthesia. Another movie on the ride home (I now have the entire Princess Stories DVD memorized) and most days we’re back to the house by 10.

As I said, there are the occasional curveballs that make each day a little different. Yesterday, Mal did not want to get up in the morning, and actually threw a fit as I got her dressed, crying “I want to sleep, Daddy. I want to sleep.” We are starting to notice a gradual slip into the decreased energy that the doctors told us would come for Malorie. Tonight, for instance, Micah and Rachel wrestled and read books for 20 minutes in the family room. Usually Malorie would be all over that event, but instead she got out her sleeping bag, asked me to go get her “friends” (toddler code word for the four Elmo’s, the Cookie Monster, assorted beanie babies and other hangers-on and cronies that compromise Mal’s night-time entourage) and then sing her songs. I spent that 20 minutes on the floor trying not to sound too much like Peter Brady while cranking out hits such as "ABC's" and "Holly Jolly Christmas.". One day Mal decided not to take a nap and then was in a terrible mood all night. Micah also helps to break the routine with his daily antics and general silliness. He has been a real trouper through all the shuffling between baby-sitters and shifting routines.

Only one day last week was our loosely defined routine majorly disturbed, and that was Thursday. Thursdays are the dedicated day for changing the dressing on Mal’s PICC line, and when that was being done, the nurses realized that 7 cm of IV tube was dangling from Malorie’s arm. This was a bad thing, since only 4 cm were left exposed following her surgery. So, somehow, 3 cm worth of IV tubing got dislodged and pulled out from inside her body. Immediately following her radiation treatment, Mal had to go get an X-ray taken to ensure the IV line was still all the way into her central artery in her chest. If it was no longer in there, she would need to be put-under again to undergo a procedure to replace the PICC line. When she woke up from anesthesia that day, she was still not allowed to eat in case she needed to be anesthetized for another surgery. Mal was whisked away from the recovery room/breakfast nook and taken up to radiology and was not a fan of this break in routine. Luckily, the x-ray showed that her PICC line was still in her artery, although not as deep as it once had been. However, the nurses also discovered at this time that Mal’s PICC was not drawing blood back (although it still could administer medicine). Mal was then taken from radiology to the hematology/oncology clinic, where the nurses studied her PICC and contemplated giving her a de-clotting medicine to clear any potential blood clots on the end of the tube. Just the mention of a blood clot so near to my daughter’s heart sent me into a tizzy, and I began studying the faces of the team of nurses attending to Mal to try to gauge the danger she was in. However, somehow through their prodding, Mal’s IV line began drawing blood again, and the de-clotter was not needed. The common theory as to why the IV just started working without intervention was that it had been stuck against the wall of her artery, and then just adjusted. I don’t pretend to be an IV expert, so I bought the explanation, but certainly don’t want to go through that experience again.

The only other big break from routine was Saturday morning, when the twins transformed for the first time into Super Micah and Super Mal. If you have not yet read our friend Nicole’s account of procuring the new outfits for the twins, stop reading my blather right now and go to this link: and then come back. The pictures will mean a lot more to you if you read her heartfelt and well written blog entry (and watched the video). Thanks, Nic.

Finally, as I prepare to post this blog and then return to my ever-changing daily routine, I wanted to figure out a way to make a graph or something to show how far into treatment we have made it (27.27%, but who’s counting?) but was too lazy to learn the coding to do so on this blog, so here is the laziest graph ever. When you see 33 X’s and 0 –‘s, you will know we are done.
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  1. I love seeing the joy on Mals face with the tutu on! I'm sitting her at 4am with a sick Kaileb in my lap as he's fighting off a stomach bug, and crying to see Ms Mal so happy. Thank you Nicole for getting the tutu and cape made and bringing so much joy to a 2yr olds heart. I'm glad she's fighting her way thru and she will continue to beat this cause she's a fighter intrude Klug fashion! Us Klug girls have alot of moxi and strength in us and Mal pro es that every day she gets up and fights. I love you all stay strong Bill and Rach and know we are praying for you all I'm sending lots of love you way.

  2. Love y'all so damn much. It pains us to be far from you right now as we would all give ANYTHING for some hang out time and hugs. Whatever your "normal" and routine becomes, and however it may change in the coming weeks, this is your journey. You and Rachel are so strong and steadfast on this path. You're simply amazing. (And thanks for the shout-out. I'd send those kiddos tutus and capes everyday if I needed to.) xoxoxoxoxo