October 2, 2022: Current Question: what is the right balance between sleep and staying ahead of the nausea?

Sunday, October 2, 2022 · by kathy howe

Right now the plan that we’ve been following is to take anti-nausea meds before bed and then let Sam sleep through the night and then wake up when he wakes up and take the next round of anti-nausea meds as soon as he can.  The problem with this plan is he wakes up …………..nauseous.  And then can’t take the medicine for a bit until his stomach settles.

He’s not wanting to try waking up in the middle of the night though to see if that might change things as he values a full night’s sleep (and hates napping — is this kid MY kid?!?!? I ***love*** napping 💤).  And I appreciate the good night’s sleep motivation.  And, for better or worse, he’s a very strong minded, unconventional young man.  Which is great most of the time…..except when it’s not.

hmmmmmm…….

I think I may have just gotten through a bit. My argument: “Feeling like you do sucks. And if we try something new, it may still suck and you may be tired too. But there’s some chance it will make things better.  And there’s some chance it makes things somewhat better *and* you go back to sleep like Rip Van Winkle. If we just stay the course, we know the suckage level and we know that it’s not fun. I *think* it’s better to try something new and take a risk — at least we will have tried to make a change towards less suckage.” 

🤞🏼

#stopthenauseasuckage

#FULeukemia

#TeamSam

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7 comments

Bryan Rollins · Sunday, October 2, 2022
I'm on board! You may be able to wake him up without him fully waking up! 🤞
Amy Neighbor · Sunday, October 2, 2022
It may help to know that many people have four hour sleep cycles, so it is common to wake up at the end of the first sleep cycle . When I am super stressed, I tend to wake up 2-3 am. Then I would stress about being awake when I truly needed to sleep. Once I realized that it matched the end of the first sleep cycle, I was able to stay calm, and fall back asleep for the next four hours. And feel fine the next morning. I read that pre-industrial, agricultural communities actually had a midnight meal because they were working so hard, they could not make it through a full night without getting hungry. Hope this little trivia helps -- I am not a medical person at all! But sometimes thinking about not sleeping prevents actually sleeping.
kathy howe · Monday, October 3, 2022
Very helpful and makes sense. Thanks Amy!
Erin Lavik · Sunday, October 2, 2022
You all are amazing parents, and Sam is really incredible. Hope things get better on the nausea front very soon.
kathy howe · Monday, October 3, 2022
Thank you for your words of encouragement Erin. I really appreciate it ❤️
joelle kaufman · Sunday, October 2, 2022
Hi Kathy - when my sister was going through chemo, Emend was the wonder drug that relieved her nausea. I believe its called aprepitant (Emend). Perhaps Sam could have an IV throughout the night that was providing a low dose of antiemetic so that he can sleep soundly and wake up without feeling sick? I seem to recall that Emend lasts for a while (not just one night) so maybe its something that can be infused and he can feel as normal as possible. We had to lobby/argue for Emend because the infusion centers (and insurers) prefer cheaper, other drugs (this was 19 years ago...might have changed, new meds might be better). Hope it's helpful and that he (and you) are able to rest.
kathy howe · Monday, October 3, 2022
Thank you Joelle. I am so sorry your sister went through chemo and bad nausea too. Before this round (continuation phase is what it’s called), he had only thrown up 3 separate times throughout the first 50 or so days. So we were coming into this phase without much nausea experience. We are at home now. They gave him Emend and Alloxy via IV at the clinic on Friday and he didn’t throw up again until last night after coming home from HoCo. I know those 2 antiemetics last 3-5 days and was just reading about Emend online: it doesn’t help nausea you already have (which I didn’t know), so not sure if we are now just in an awful 8 week cycle that he will just have to suffer through. Or if we’re just going to have to go into clinic every 3 days while he’s home between methotrexate doses so he a)doesn’t get dehydrated and b) has a chance at even getting even with the nausea, not to mention ahead of it.

Having mucositis in his esophagus doesn’t help either.