Jan 13 - updated

Connor had an uneventful day yesterday. Kirk stayed up with him on Monday night until about 12:30 watching movies. Kirk came back again in the morning and spent the day while I got some work done. The MTX dripped over 24 hours without incident until about 7:15 pm. They did blood work right away.
His MTX needed to be less than 120 at 24 hours, and it was 66! 
Unfortunately, it is taking a hit on his kidneys. His creatinine level was low to normal when he was admitted (68) it jumped to 100 overnight, and was 130 this morning. Going in the wrong direction. 

Of course the major thing now is to expel all the MTX and if his kidneys aren't functioning properly it makes that harder. 
They did an additional MTX level at 36 hours to see if they should be changing anything. The MTX is down to 30, so still elevated, but on track, so we are still in the watch and wait phase.
At 42 hours they start Leucovorin to aid in the excretion.  They considered starting early but decided we weren't there yet.

Hopefully things will continue as planned for discharge tomorrow evening. 
Connor is tired, not sleeping great, and no real appetite, but otherwise fine. No nausea etc. He's thirsty and drinking on top of the IV fluids so fingers crossed it all works!
I'll update if we get any additional information.
UPDATE: MTX at 42 hours is 9. Supposed to be under 1, so not quite where it needs to be. Creatinine has plateaued though, so that is positive. Unlikely to get out on time, but he's heading in the right direction. Connor puked for the first time. He held out for 105 days of treatment 😔.

Comments

  1. An uneventful evening is good. Sounds as though everything is starting to go in the right direction. Fingers cross for that to continue. Our thoughts are with you. Hope Connor gets a good night sleep tonight. 🤞💕K/C/M/L

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  2. Good luck with the kidney issue and Phase 3 in general 💪❤🙏

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  3. Hope those kidneys do their work and that Connor will get home tomorrow!🤞❤

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