Jan 15th Update

So, last Tuesday he had another lumbar puncture and infusion of vincristine. They also drew labs. His labs came back showing his liver enzymes were 40x higher than they should be (they should be around 45). This is not good! To me, this proves what I have been saying for weeks- that his MTHFR mutation requires him to have a lesser dose of methotrexate. The doctors and insurance STILL HAVE NOT ORDERED THE NUDT15 TEST I REQUESTED. Why? "Because it's not 'medically necessary'." Um, it's flippin' necessary because I SAY IT'S NECESSARY! It's necessary because if you don't do the test and your first test was actually a false negative the dose you're giving my son is TOXIC AND DANGEROUS (beyond the normal amount of toxic and dangerous).

Regardless, Dempsey's liver enzymes are too high. He, thankfully, is showing NO SYMPTOMS that this is problematic- praise God. Want to know what's even more crazy? I was gently accused (okay, maybe they were just doing their due diligence) of being the cause for his liver acting this way. SAY WHAT?!?!?! I'm the one protecting his little body from the toxic onslaught the doctors are providing. He has had NO concerning labs before... why is it me now? The doctor told me "I know you do alternative things... supplements and oils... have you done anything different?" Nope. Jackass. But I'm gonna have to do something different now to PROTECT HIS LIVER until they can get their heads out of their butts and order the darn test he needs!

Seriously! What the hell is wrong with our doctors and their ridiculous system?! Why can't they see that something needs to be looked at further? Why are they accusing me when he's not had questionable labs before. When I know more than 5 families who have had false-negative test results, I don't trust the test the docs are using. Just because my son is caucasian, that doesn't mean he doesn't have the same issues as these other non-caucasian patients I know!!! Just because "statistically speaking" my son doesn't fall into the majority category regarding this issues, doesn't mean he doesn't belong or that there isn't something in him worth checking into. I HATE INSURANCE COMPANIES!!! Last time I checked, insurance companies didn't go to medical school YET they are the ones dictating what doctors can and cannot do?? Man, money is powerful!

Please pray over this situation. Pray that the Lord will open doors all while continuing to protect Dempsey's body. Pray for wisdom and right words. Pray for teachable doctors. Pray for humble attitudes. Pray for an increased awareness for the medical community. Pray that the Lord uses our family to bring about massive changes that will protect and aid future patients/ families. Pray for this situation as you feel led.