Here’s where things get tricky… it’s very common for cancer patients to hold a lot of iron if they’ve received multiple transfusions and it usually is not a cause for concern because it doesn’t cause damage to most people in a short period of time (like a year or two) while it’s in the body…. However once again Jade’s the exception… because of the amount of transfusions she’s had and the genetic mutation Jade is in a different category. So rare actually, that her team of doctors has never ran into this dilemma, none of them. They have never had to start chelation therapy on a person during active treatment… EVER! They are reaching out across the nation to see if they can find another case. 

This issue of not having any data or research on how different medications can interact with her chemo, is, well, terrifying… to put it lightly. 

We obviously want to protect her liver and all of her organs but we don’t want to mess with the chemo by adding something that there is no data on how it interacts with the chemo. 

Thankfully the liver biopsy showed no significant damage, so that buys her team time to reach out to other hospitals and colleagues to hopefully get more answers and come up with the best decision on how to treat Jade. Thankfully we didn’t have to rush and just start her on the chelation therapy like we thought we would. 

Jades bloodwork also revealed that her ANC is too high so we need to adjust her chemo to get that down to a suppressed level. The goal for her ANC is 750-1500 and hers was 3700. 

Im going to include an email I sent to her team because the complexity of her care requires so much attention, I often feel unqualified to be her advocate, but her care matters so much to me I research and read constantly. I ask questions repeatedly. When I get an answer from one provider, I verify it with another. It’s a constant mind battle, trying to know the right questions to ask when you don’t have a medical background. 

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“Hey. I figured out how to word the question I had about the mercaptopurian. Are you able to call back and explain it to me. If you look back on the notes we dosed Jade at 1.8 of the mercaptopurian on 3/31 on 4/7 we did the metabolite study on her and her 6-Methylmercaptopurine number was over 10,945  and I though that showed us that even with the allopurinol (which we added on 3/28)that dose was too high for her liver.  So I’m assuming that’s the main reason we wouldn’t go back to the 1.8 but try to see if we can dose a little more to knock the ANC down a bit more, but I guess what I’m asking is that if we see her liver enzymes creep up again with this new dosing of the mercaptopurian will be able to do another metabolite study to make sure it’s not in the toxic range for her body/liver? The 0.9ml dose had a really high therapeutic range 540 and 6-Methylmercaptopurine was below 5700 but I also know we need to add more chemo because her ANC is too high. 

 

I hope I never come off as annoying or questioning you guys. I ask these questions so I know and if I don’t they keep me up at night making sure I am being the best advocate for Jade. I appreciate everything you guys do for Jade and know she is in the best hands!”

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Please keep praying! We feel them. We need them. We appreciate them more than you know!