What Leukemia looks like now: Day 287 Part Two

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Continued from this post: https://summerofsilence.com/2019/11/05/what-leukemia-looks-like-now-day-287-part-one/

Lifestyle:

Sauna: 3-4 times a week Beaudin (And Jude) take a 20 minute, 130 deg sauna. We found a like-new, but priced-used (win!) Near-infrared sauna on Craigslist this summer and although it’s not the most feng shui piece in our house, neither is cancer.

The reasons to sauna are endless and you can spend as much time as you word like on Le Google understanding more about it. But the BASIC idea is that you create a fever in your body, it kills the weakest cells. Turns out, although prolific, cancer cells are weak. The sauna also makes you sweat a ton, and the sweat is filled with the things that your body is detoxing- nasty for anyone, but particularly for Beau who is detoxing some chemo. We use the sauna in the evening, which is ~23 hours from his previous daily dose of chemo. By that time, the chemo has been fully absorbed and used, and anything remaining should kindly find it’s way out, the sauna helps that process. The boys shower immediately following the sauna to ensure the dirty sweat does down the drain and isn’t reabsorbed or rubbed off on bed sheets.

There is a rabbit trail to go down here, one I feel 99.9% incompetent to explain, but there is a theory that relapse can be caused (not IS, but CAN) by leftover chemotherapy in the body, that is not detoxed correctly. Chemo is a nasty, powerful chemical combination and the liver and kidneys are the filter that detoxes what is left over. If the liver or kidneys are not working optimally, the chemo is not filtered out. And somewhere, thanks Le Google, I spent many hours down the rabbit trail of reading medical journals on if this lack of detox can cause instances of relapse. Really, I have not other info than that, so don’t come at me with “Where are your sources?!” The only source is a vague memory of a fear-induced rabbit trail where my take away was, “Ok, got it, support the liver and other detox pathways.” Send me the peer reviewed medical journals that show this to be disproven and I will gladly update this post- and sleep easier at night too.

Play: I encourage the boys, now more than ever, to go outside. I think that a healthy dose of sunshine and free-play is just as important as any medicne or supplement that goes in their body. I nudge them towards the trampoline daily. Rebounding, known to the layman as “jumping on a trampoline”, has a host of benefits to the lymphatic system and is just a great workout! Unfortunately, Beau does not really lie the trampoline. He says it makes his head hurt, and I am not sure what thats about. When we first got the trampoline, he had chronically low hemoglobin, which would absolutely make for a headache if you jumped on it. Now his hemoglobin is fine, but he still doesn’t prefer it. Jude on the other hand, would jump from dawn until dusk if I’d would agree to go with him.

Although he doesn’t prefer the trampoline, Beau would catch football passes from Josh without end if Josh wasn’t limited by things like, you know, work. Whether it’s playing cul-de-sac baseball or walking to the park, in all the most corny “we realize life’s short” kind of ways, we just try to be: together…in the sunshine…more often.

Worth noting for transparency, my kids have had more screen time over winter break than I would have thought humanly possible. So, this whole outdoor theory is alive and well, and so is the reality that it’s cold and Christmas made me real angsty this year, saying “yes” to basically any request for anything.

The play thing is not always easy. Mainly because after 12 months of pediatric cancer coupled with winter weather, I kind of just want to lay on the couch and watch as much Netflix as possible, forever. I’m still working on finding the enthusiasm to be outside, although like with most good things, once I am there- I am glad I did it.

Mental Health:

The other day in the car Beau asked me, “Even after I am done taking the chemo medicne, will I still have the cancer forever?” Wow. It struck me hard that he has very little idea what is going on. In many ways he knows more than any child around him, but in other ways he is as unaware as the masses. Ugh, the pride and sorrow to know that he is waking-up each day not even sure if it will EVER end, and yet just casually inquires.

It was a good opportunity to talk about relapse and how if the chemo stopped working, we would find another chemo. I don’t want to scare him with that, but I also want him to know where things stand. The chance of relapse is small, but it’s there. And the last thing I want is to make promises like, “You’re good bubba,” because that feels easier in the moment and then have to explain he’d relapsed.

Soccer- Beau was able to play on a soccer team during the fall season and it was a beautiful thing to watch! He seemed to keep up just fine with the rest of the kids, and most importantly, he loved it.

Days after the Beau’s diagnosis, I remember laying in bed at the hospital and searching instagram for connection to this whole cancer thing. It was late, Beau was fast asleep. The world felt small in all the scary ways you’d imagine. This was early enough that we still weren’t even sure Beau would live for the month, much less for another season of soccer. If he did live, would Beau ever be able to feel like a “normal kid” again? Then I came across a picture of a little boy playing soccer 1 year after he had been diagnosed with Leukemia. I texted Josh, “Babe, look at this.” It was 1am, I was sure Josh would be asleep. “Oh wow. I needed this.” He replied immediately. I laid in the hospital bed and cried. The tears you cry only when your kids aren’t watching. Maybe there was a chance that we’d survive this hell, and inside that small hope, and even smaller wish that Beau may be healthy enough on the other side to play a sport. You can imagine all the fierce, hot tears that fell when Beau went out onto the field for his first soccer game in September.

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