Follow Up- Liver Enzymes

Got the follow-up call today from CHOC. The lovely NP (I think she's an NP... I hope I'm not totally demoting her.) told me the following:

1. The NUDT15 test has been denied by insurance because, hold on to your hats, Dempsey is caucasian. Yep. See, this test is typically run for other ethnicities because those are the ones with the "higher statistics" of what this test reveals.
   Okay, fine... but what if my son is one of the "few"... the "minority" who also have these genetic issues? Honestly, there is a fear that we're going to spend the $650 for the test and it shows my assumption is wrong. *gasp* Regardless, I need to know more information and that test is ONE WAY I can get more information to protect my baby better.
   
2. If Dempsey's liver enzyme count goes down to the acceptable range (less than 175, I think) then his primary ONC has agreed to re-challenge him at 75% the standard dose. This is a decrease of 25% making his 6MP dose 37mg M-F and 56.25 S-S while his MTX dose would drop to 11mg. We would keep him at a 75% dose until the results of the test come back which would tell us A. he is okay to resume 100% dose and be monitored or B. he needs to drop the % farther because his liver cannot handle a full dose.
   Please be in prayer over this. Currently, I feel okay with this.
   
3. The anesthesiologist who thinks I should lecture/ speak at Grand Rounds will email me more information about that program. So, I wait, but at least I know what the program is called.

So, what's the plan?

I will be contacting the insurance company to obtain the names of those on the board who denied my boy the test. I might wait until the results of the test or in... or maybe not. I'm praying over my next move(s).

Dempsey gets a break from pill taking until at least next Tuesday, maybe longer if his enzymes are still too high.

I am beginning to pray and seek God's guidance about Grand Rounds- speaking to a medical and non-medical audience. "I" want there to be education, empowerment, and a little bit of finger shaking. But above all I want the Holy Spirit to guide my words, posture, and whole being when I speak to whatever audience he brings me to! So, that means I need to pray more. ;-)

So, there's the recap. Thank you for following along and covering it in prayer. Your support is priceless.

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