Saturday, June 29, 2013

"No, get the beer."

Yesterday I almost wrote a post that would've been titled "Worst. Dressing. Change. Ever." It would've been sad and emotional. Instead a crazy storm came through Ft. Collins, and somehow running around like a maniac in the sideways rain and hail to rescue my potted flowers lightened my mood.

That's kinda how the last couple of weeks have been, a bit of an emotional roller coaster. I think it's what happens in these and other situations of loss and grief. You just go along and then all of a sudden something happens that brings it all back. Looking at beautiful pictures my friend, Sarah took last winter before Esther's stem cell transplant, at a beautiful little bald girl and I can't believe that was ever our real life.

Yesterday with the worst. dressing. change. ever. After it was finished I had to leave and go for a drive because I was just so mad and sad and angry and exhausted from a week with a sick kiddo. Frannie came down with something that put her in bed for three days with a fever, vomit, and a ton of Netflix. She's currently going through iPad withdrawal, but I think she'll be okay. Praying no one else gets sick, so far so good. Now that I said that, if I was superstitious, I would ask you all to knock on wood. Go ahead, if you want.

Esther is doing pretty well. She's still tired, but her appetite is picking up, so hopefully that will help with her energy levels. Tonight she was quite the comedian...


Now, about that dressing change...we could use some prayer for healing and no infection there. Part of Esther's regime right now is Accutane. It's really amazing how this whole antibody therapy works together. One of the roles of Accutane is to mature new cells. Neuroblastoma is a cancer that develops when baby nerve cells don't mature. Accutane helps the nerve cells in her body to mature. Anything that doesn't mature properly is targeted by her own immune system during her inpatient antibody therapy. Cool huh?!

A side effect of Accutane is dry skin. Esther's skin is horribly dry. The first three rounds of Accutane only left her face/lips dry, but this time her whole body is effected. Add in the heat we've had the last week and a house with no central air, it's a sweaty, dried out skin mess. One area that is most effected is her Broviac site. The Broviac is a central line, she has two tubes that come out of her chest that are covered by a big, sticky, clear bandaid...the dressing. This dressing is changed once a week and if pulling the super, sticky tape off of dry, irritated skin isn't torture enough, the skin needs to be cleaned with a stinging, alcohol based cleaner called chloroprep. This usually happens on Mondays. So, last Monday, I changed the dressing, and her skin was very irritated. She's really good about not itching it in the traditional sense, but she'll rub the dressing with the palm of her hand all day. She rubbed that dressing up THREE TIMES in less than 24 hours. That means peeling it the rest of the way off three times and then cleaning her now open wounds with the most stinging liquid you can imagine.

Yesterday I talked with nurses in the clinic three different times, trying to figure out if she needed to be seen and if there were any other options or ideas to aid in the healing and ease the burn of the dressing change. We came up with a plan using some of the supplies we had at home, one of which was iodine. The idodine was great, it didn't burn, kills all the germs, yippie, right!? Nope. Iodine can't stay on the skin, it needs to be cleaned off. Because we couldn't get sterile water without a prescription (not kidding), I had to use a different alcohol swab. Iodine doesn't wipe off all that easily, so I ended up needing to wipe over and over and over. On open wounds. I should've just used the chloroprep again. She did so well, but it was heartbreaking. It has become normal for my little girl to just sit still, not move away, shake and scream in pain. Then her tears dripped down on the skin, and I had to clean it again. It was horrible. After it was over, shaken and tearful myself, I told Anthony I needed to get out. He made dinner for the kids, and I left for a drive.

I picked up some Chipotle and was on my way home when I saw the low, swirling clouds below the thick blanket of black, stormy sky. I drove as fast as I could and called Anthony on the way. Our conversation went something like this....

"I'm almost home. The weather is crazy out here. There are branches flying everywhere. It's going to hail."

"I know I'm watching it. It's still clear here," Anthony replied.

"I am racing the storm, it's coming fast. We need to cover the garden. I can come home and help you cover the garden, or I can stop and get the beer."

"No, get the beer."

Anthony got the garden covered, and I pulled in the driveway as the hail began to fall. I dropped the burritos and 90 Shilling on the counter and started running after my flower and herb pots. It was crazy and kind of fun. Our garden and flowers all survived. The beer and burritos were good.



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