You know how people tell you "Don't go on the internet" or "Don't Google it... you'll make yourself crazy"? Well, I'm down the rabbit hole.
Why am I down the rabbit hole? Excellent question! I'm down here, in the dark, using God-given senses to figure out how the hell I can best protect my baby from the people who are employed (mandated, even) to protect and cure my baby!
Why does he need protecting from them? Another excellent question! He needs protecting because they don't know enough about him or these drugs! They don't know how his homozygous MTHFR A1298C mutation puts him at risk for clotting issues with the drugs Methotrexate and 6MP he'll be getting EVERY SINGLE DAY until August 5th 2019. Now I'm learning that this same mutation puts him at an increased risk for toxicities of the various drugs he'll be receiving. Great. *sarcasm*
So, I am on the internet researching, reading, learning, compiling data so that I can deliver an educated, fact-filled case when his primary asks me to give a reason for the tests I'm requesting.
I emailed our case coordinator stating I want two tests ordered. #1 is TPMT and #2 is NUDT15. These are bother genetic tests. Turns our Dempsey has already had the TPMT test and results were negative. That would be comforting EXCEPT that I know a few families who children tested negative only for that to be false! Hello! So, with the assumption that there is a flaw in this test, I am requesting the NUDT15. The coordinator stated "we don't really order the NUDT15". That's nice, we're going to order it for my kid. *Mama Bear is unleashed*
See, if Dempsey is actually "positive" for TPMT, he will need a REDUCED dose of chemo!! Wouldn't that be fabulous? My boy getting to finish out his treatment with a reduced dose of chemo. I am betting that this will be the reality. Back to why he would need a reduced dose if he's positive TPMT... because his body can't metabolize the drug efficiently, thus it stays in his body and builds up. You know what happens then? TOXICITY! My son would become dangerously toxic, sent to the ER, admitted to the hospital, given steroids and antibiotics. Um, NOT ON MY WATCH, folks!!
I am so grateful God is giving me this information NOW. I know that the test will take 4-5 wks to get the results and while I don't like that, God just gave me this information now and he is in this process with us. So, HE knows what I need for this journey and he has just served me up another helping of knowledge. He is so good.
BIG QUESTION: Why the hell am I, the not-a-medical-student/ doctor, having to work this hard to protect my baby from the very people that should know all about this stuff already?!?!?!
I have already requested a list of doctors who make up Dempsey's "team". Dollars to donuts there's not a geneticist on his team. I'm willing to bet his team is entirely oncologists... as if my son is ONLY cancer. Not like he has genes that could effect his treatment, right? *snark* Not like a nutritionist would be important. *snark* Not like an endocrinologist would be important. *snark* Not like an osteopath would be helpful. *snark* Neurology? Ophthalmology? Audiology? Dentist? Gostroenterology? Etc, etc, etc.
Now, to be fair-er, these doctors are contracted and available at CHOC... but why aren't the part of the "team" from the beginning? Why aren't ALL SPECIALTIES included in diagnosing, caring, managing, and watching each patient? Why aren't all specialties constantly communicating about the WHOLE CHILD, my child? Why do I have to get referrals to the other specialties? Why do I have to ask for these genetic tests to PROTECT my child and help treatment be effective?
Another thing I requested from our coordinator- a list of ALL the medications Dempsey has received in the last 8 months. Don't care about the doses, just the names. I need to start researching what long-term side effects we could be up against. I'll be damned if any part of Dempsey will be compromised because of this journey! No! I say NO!
Okay, I'm wiped. This is an angry post and I'm kinda sorry about that. However, this is a real look at a real cancer journey, from the eyes of a real mom with a really deep devotion to her child.
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