Call it not paranoia, but caution
Last week we had a bit of a scare in our house with the Kenedi bug. We got a call from daycare that Kenedi had blood coming out of her left ear. Although her left ear has always been her problem ear, and she has had many ear infections in the past, as well as 2 sets of tubes, I immediately went into panic mode. Thankfully, Aaron was home and ran to get her and we headed into our pediatrician right away.
I know what you’re thinking. Multiple ear infections, multiple sets of tubes, probably no reason at all to worry about some blood coming out of her ear. Especially since she hadn’t had a fever or any significant sickness besides an annoying cold in the last two weeks. However, as we were pulling out of the driveway, I looked over at Aaron and I said “you remember the last time we had a kid with what everyone thought was just a virus and a ruptured ear drum?” He didn’t need to respond. We both were already thinking it. Last year in February, Kendal’s ear drum ruptured on the way back to the hospital just before we knew she relapsed.
That’s the thing with paranoia. Once you start thinking about the super negative what-if’s, it’s hard to come back out and see the light of “it’s probably just an ear infection”. But for us, and probably for most cancer families or families of children with complex medical issues, a simple ear infection isn’t always just a simple ear infection.
The week leading up to Kendal’s relapse last year, her eye was swelling. We initially thought it was that she caught a cold in her eye. Then we thought that she scratched her eye. Then we thought she had a virus. Finally, 5 days after the swelling began, we talked our team into testing her blood and that’s when we learned she was neutropenic. But still, the team insisted she just had a virus. At that point, as a parent, you know. You know in your gut something is wrong with your child. We decided to drive back to Mayo and on that drive is when her ear drum ruptured. After another day we learned she had a staph infection in her eye and in her ear. How quickly things went downhill after that. So when Kenedi has anything happen that can be explained away easily, we still get worried. We still get panicked.
We visited with our pediatrician last week and he checked Kenedi over. We both agreed that we didn’t think blood work was needed at that time (although we knew it would put us at ease – it’s also a double edge sword. Sometimes if there’s no reason to check, just don’t check). The bleeding had stopped and Kenedi has her 4 month labs coming up soon. We started an antibiotic as well as some ear drops, and a week later, Kenedi is feeling well.
But that bubbling feeling of paranoia never goes away.
When we see a bruise.
When we see a red mark.
When a bruise takes just a little too long to go away.
When she sleeps an hour longer than normal.
When she won’t sleep as long as she normally does.
When she’s not hungry.
When she’s fussy for no reason.
We have the unfortunate luck to be living in a unique hell where one of our children was killed by this monster called AML, and the other, the exact replica, is still living and doing well. How can we not be worried or a little paranoid?
But here’s the thing. Kenedi IS doing well. She is in remission. She is thriving. She is a typical almost 3-year-old-sweet-and-cuddly-monster that we love so much. And, as our team has always told us, there’s nothing wrong with being a little extra cautious. Especially when it comes to Kenedi.
So that’s what we do. We continue on navigating the world of child loss due to childhood cancer concurrently with the world of long term survivorship for our other child. Being mostly cautious with a dash or understandable paranoia.
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