These folks need bathed in prayer! Let’s do it! Lonnie
From Whitney Kasinger about Ella:
First of all, life is heavy. If you are overwhelmed with bad news right now, don’t read my post. It ends good, but it’s a lot of information that you may or may not want to read based on your current mental status. I don’t want to add to your normal stress load. Having said that, proceed at your own risk.
There’s Vincristine – a drug that she’s gotten from day 1 of chemo, and she’ll get it until the end of her treatment journey. It can cause foot drop, which is why walking is a struggle. It can cause nerve issues/neuropathy, which has been and is an issue. It kills Leukemia blasts but is far from benign regarding side effects.
Doxorubicin was a new chemo to her last month. She had its close relative, Daunorubicin, during Phase 1. Doxorubicin is one of the most powerful chemotherapies approved by the FDA. It is amazing in that it can kill cancer cells at any point in their life cycle. It also stops the cells from being able to reproduce. Although fascinating, it’s called Red Devil because of its potential to damage the heart. Doxorubicin is a necessary part of her treatment that is a double-edged sword. My prayer from the beginning of all of this has been that God will allow the drugs to do their job and then leave her body without a trace left behind. I’m clinging to this.
Then there’s Dexamethasone. Steroids. So good for getting rid of cancer and so bad for literally everything else. Ugh. Dexamethasone (also known as Decadron) is considerably more potent than Prednisone. It took away her muscle during Phase 1, and though she only took it for two weeks in January, it brought on more weakness, insomnia, moodiness, flushed cheeks, and really, just an overall feeling of hopelessness. I hate Dexamethasone. I hate it for what it has done to my baby girl. And oddly enough, I’m thankful for it. It’s like 99% hate it and 1% am thankful for it.
In my gut, I feel like her severe nerve pain, which initially brought us into the hospital, was brought about by a combo of all three of these drugs.
And that is the long explanation that kind-of gets us to the end of Josh’s post from Thursday.
It wasn’t even ten minutes after he posted that Ella went downhill fast. I went home while Ella was in clinic to pack an overnight bag and take a quick nap. Josh was with her and we knew she’d be admitted to 4K (the Hem/Onc floor at ACH) soon. When I woke up from my nap, I had a text from Josh that said, “come back when you can.” Next thing I know, Josh is calling me and telling me that he is giving his phone to Dr. Honhar so she can explain to me what is going on. Not good. As Ella was being wheeled from the clinic to 4K, she got lethargic and pale. By the time she got into the room she said she couldn’t see anything…that the lights were too bright. Her heart rate was in the 170s, her temp spiked to 102, and her blood pressure was in the 70s/30s. The Medical Emergency Team was called in immediately to care for her. (The MET is a team of highly trained and skilled ICU staff members. They respond within 10 minutes of an emergency call within the hospital.) By the time I got up to her room, she couldn’t keep her eyes open, and her color was gray. Gray. That’s not a color a human is supposed to be. Although I was reeling inside, I was trying to hold my tears back so that I could be with her and not scare her more than she already was. Dr. Bishop and John, the doctor and MET nurse who saved her life, were not visibly frazzled. That (and Jesus) was the only thing that kept me from falling to the floor. They were doing what they knew they needed to do to help her body. They are trained for this. It’s what they’ve devoted their life to. I praise God for that.
The 4K nurses and MET got her to the PICU as quickly and safely as they could. The ride from 4K to the PICU was terrible, but she made it and within an hour looked alive again. Thank you, Jesus, for genius medical professionals, IV antibiotics and fluids, and the way You fearfully and wonderfully made her body. (I’d love to explain the emergency fluid giving process. It’s just too much to add to this already too-long post, but I was in absolute awe.)
From there, the blood draws started – there’s got to be an infection. Dozens of cultures later, she was and still is negative. It’s what’s called a culture-negative infection. Is that good or bad? Well, I don’t really know, but for right now, we’re hanging onto good because even though the source is unknown, she’s responding well to the treatments they’re giving her.
From what I was told yesterday, they believe she went into septic shock from “showering.” This is how showering happens:
1. Bad bacteria starts multiplying in her body.
2. All of those cells decide to congregate around her port, since it’s a foreign object.
3. Her port was accessed.
4. The port was flushed, showering/spraying the infection straight into her blood stream.
5. Instant septic shock.
Two days in the PICU, with the most incredible nurses on the planet, was what she needed to get out of the woods. She received Epinephrine to help stabilize her heart rate and blood pressure, among several other medicines. Her port and an IV in each hand were simultaneously used the whole time in the PICU.
Now that we’re back on 4K, with equally incredible nurses, she’s continuing the two very strong broad spectrum antibiotics, Vancomycin and Cefepime, and a morphine button and Oxycodone are keeping her pain under control for now. She will obviously have to be off all IVs before we can head home. So…..we’ll be here for at least five more days. It’s a bummer, but we have a beautiful room with a beautiful view.
I’m happy to answer any questions you have. From day one of her Leukemia diagnosis, Ella and I agreed to spend the rest of our lives helping others going through this awful disease. I don’t know it all, but I’m always happy to share our story.
I’ll wrap this up for now. We thank you for your love, support, and prayers.
-w
