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Wednesday, January 25, 2017

Liver Enzymes Follow Up 2

So, yesterday (Tuesday 1/24), Dempsey had follow-up labs AGAIN to check his liver enzymes. He also had a vial drawn for the NUDT15 test I've been pushing for.

Liver enzymes are still too high at 432.
     They need to be less than 175.
          He is still on "chemo hold".
               Follow up labs again on Tuesday, Jan 31.

NUDT15 test sample drawn and paid for- out of our own pockets.
     Will send sample to CHOP (Children's Hospital of Philadelphia).
          We will have results within two weeks (Feb 8).

IF Dempsey's liver enzymes are in the acceptable range (less than 175) next Tuesday (1/31), he will resume his nightly chemo at 75% dose. His primary ONC knows that his dosage is an issue for me and she has graciously agreed to lower his dose until we receive the results of the NUDT15 test. There is a part of me that KNOWS I am right about Dempsey's liver being compromised because of his MTHFR mutation (and various SNPs that I'm still figuring out). However, now that we have had to fork over so much cash (Thank you Mom and Dad for helping with this part!) of our own, there is a small part of me that is worried I'm wasting the money. Stupid, I know... but, alas, welcome to the inner working of my ever-warping brain.

I will also be calling our insurance company again, this time with better verbage to use, to attain the name(s) of those who denied the request for this NUDT15 test and to press them for an answer as to WHY they denied him and on WHAT GROUNDS they denied him. Uphill battle worth fighting! Sword worth falling on! Pray for me to keep a cool head and that the Lord grants me favor.

Here is an image that will help you see what I do... every day. You can call me a lot of things, but uneducated and uninvolved is not among them.
This photo is just a sliver of the evidence out in the world regarding the connection between MTHFR mutations, the drugs MTX & 6MP, and toxicity issues. One or two of the files shown are not so much genetics-based, but still provide information on how to help kiddos in this mess. I want to shout out to and thank other cancer parents who have done this research before me and were willing enough to share their findings/ articles with me. A handful of these links came from those parents. As I read through these studies/ documents my head starts spinning... the letters and numbers all start swimming together after awhile. So, today, I rest... sort of. My brain is on overload and cannot function like I need it to in order to be efficient and productive.

Meanwhile, in the Land of Homeopathy...
I have met an incredible woman named, Britt. She lives on the other side of the country and I am determined to meet her face-to-face one day soon. Anyway, she is studying an area of alternative health that I am now fascinated with. The information she provided has given me a MUCH BETTER, much deeper look into Dempsey's biology. We are implementing another therapy for him over the next 3 days (5 in total) to see if we can help his body even more. I am eager to see what information we get after the 5 days! The therapy involves none of the following: drugs, nutrition, supplements, oils, touch, play, exercise, heat, prayer, sight, smell... Suffice it to say our bodies are incredible and capable of much more than we even realize! God is so good!

I think I might just be headed toward my Doctor of Naturopathy credentials. We'll see where the Lord leads.

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