Sunday, January 11, 2009

Murphy Murphy Murphy

When it rains, it pours- and it seems to be doing a lot of it the past couple of days. I still look for the rainbows- they're my sign that it will get better. There was a beautiful rainbow yesterday as we came home from Tripler, for the second time, that day. But really my story begins on Thursday.

By about the 3rd day of treatment we start getting run down. Phil looks forward to just being home, and some aspects of being home are great- others are a lot of work. I don't sleep as well because I'm waiting for a beep or a little voice to call out to me or another little person to hop into bed with me. Plus I don't have a call button to push when the poo starts hitting the fan or if I'm tired of playing Barbies with Lily.....But I digress. On Thursday, by the time Phil and the kids got there for swap out- I was just ready to go home and get some sleep. Lil Phillip was happy to play and Bella was trying to take a nap again in the room. I finally get everyone situated, got Phil some rations and we are out the door. I get the kids loaded in Phil's car since Lily requires air conditioned transport and she would be coming home later. Bella, the stroller, diaper bag and overnight bag packed in too. I turn the key in the ignition. click click click. NOOOOOOOOO. Not click click click -It should go vrooom. I try again. and again. End result being Phil calling Jackie and Stewart to pick us up and take us home. One of the only good things about Grandma Sandy being in Iraq is that her car is lonely and will be coming to visit with us until we get Phil's car situation figured out. It's time for the beater to go. I've been saying this since we got the thing. I'm shooting for a beater that has air conditioning this time! We have less than stellar luck in the vehicle arena.

So Jackie and Stew kindly hang with the kiddos so that I could have a nice warm shower. Really it was for everyone's benefit. I start the laundry and picking up the house and finally get to bed. Fast forward to Saturday morning. Phil has drill and heads into work and Jackie and Stew come over to hang with the kids. Phillip goes with the Turners, but it was a tough choice for him. Hang and play Rock band- hang with Pono...tough choices for the 9 year old. I get everything in order to take Lily back to the hospital for her last treatment of this cycle. They didn't even discharge her the night before- just sent her home on an overnight pass. Lily requires a bag of toys, the portable DVD player with Aladdin and I pack the diaper bag with the necessary items. We head to Tripler. Relatively painless, an hour of chemo, discharge, we go home. We get home and the girls are napping, Jackie and Stew have picked up the house, folded laundry and all is well. And then I give Lily her meds. In her feeding tube. And that is when it fell apart.

The doc had given us liquid meds for the feeding tube. The only one that does not come in liquid form is the mitotane, which is the chemo drug that kills the adrenal cancer and she HAS to take. The famous mitotane that we've tried putting in peanut butter, ice cream, pudding, hidden in various meals ...and eventually taught Lily to swallow. The bane of our existence for the past 3 months- yet it is the 1 thing that could cure her- so we do it. So much discussion has occurred over the past few weeks about the best plan of attack to get the mitotane into the feeding tube. It does not dissolve. In anything. Ever. Under any conditions. Ok that's a slight exaggeration, it is fat soluble. But I don't think they generally advise shooting oil into feeding tubes. We experimented at home trying to find an acceptable medium- and really nothing worked. The best advice was hot water or milk. Since it is fat soluble, it doesn't have to be administered in a fatty liquid, there just has to be something fatty in lily's tummy at the same time. We were having luck with warm whole milk. Then my mom made some calls to St. Jude's and they said soak the pills in hot water. So I ground up the pill as fine as I could and started soaking it in hot water. I get the rest of the meds in line and the tubing and an hour later we are ready to start the process. I plug her tube in, flush it, give her the first round of meds, flush and start giving the mitotane. It's going well. Until the end of the tube- some of the pill has settled at the bottom of the syringe. Jackie grabs me some warm water- we dilute and mix the remaining dregs and I start pushing it into the tube, and it stops. I try to suck back, nothing, push again, nothing, suck nothing, suck, push,suck,push, nothing. I switch tubes. Nothing. I prime a new tube with coke and try, nothing. I call Phil who asks me to check this, that, the other. Everything checks out with a big fat nothing. I call our neighbor who is a nurse- she gives it a shot, nothing. We let the coke sit- I mean- it digests metal- surely it can handle a little mitotane. Nothing. It's time to call the doc. Ugh. We've done everything she would suggest- time to go back to Tripler. I grab the associated bags again- and off we go, again. Fortunately we go right back to peds ward-they try everything we tried, nothing. They call Dr. E the surgeon. Since Lily has an MRI and CT scan on Monday, she will look at it while Lily is sedated and try to change out the button. If that doesn't fix it, she'll have to go back into surgery. Ugh, and hopefully we can get this all taken care of before Lily's white cells drop. She's eating bites here and there and we have her on extra anti nausea meds so she hasn't been throwing up too much. Fortunately we can still do IV fluids so she is well hydrated. All the while Lily keeps informing me that I broke her button and it's all my fault- Like I don't feel bad enough.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)