What Leukemia looks like now: Day 287 Part One

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Today Beaudin is 287 days post-diagnosis. He has 508 days until the end of his treatment and 1,204 days before the medical model will consider him “cured”, 5 years post diagnosis. He is on day 43 of his first cycle of Maintenance. He will have 7 cycles culminating in March of 2021.

Appointments:

Beaudin has once monthly appointments on Tuesdays. At those appointments, his port is accessed, labs are drawn to check his blood levels, and then his port is flushed. The port is accessed to ensure it’s still working, flushed out with saline, and then the reservoir at the base of the port is filled with heparin to ensure it doesn’t clot off before the next access. The whole process takes under 5 minutes, but in good medical establishment form the appointment is never under 1.5 hours. We also have time to chat with his primary Nurse, primary Attending and overseeing Fellow. Depending on where his blood levels fall, they may choose to adjust chemo dosages to keep his immune system in a semi-suppressed state (ANC between 500-1500). They do not start these adjustments, however, until Cycle 2 of Maintenance which, for us, will be in December, so in the meantime the they keep an eye on his liver and kidney function, and ensure he is not neutropenic (ANC <500) which would keep him out of school.

Every third month Beaudin has a lumbar puncture that administers Methotrexate chemo into his spinal fluid, and also takes a sample of spinal fluid to ensure there is no relapse. At that quarterly appointment he also get an IV push of Vincristine chemotherapy. For the 5 days following that appointment, he takes Dexamethasone steroids.

Beau has been a rockstar with his port access and continues to be unphased by the 2-inch needle plunged into his chest. He has grown weary of the smell of the face mask that he has to wear during the flush so we’ve come up with a combination of applying a drop of essential oil to the top corner of the mask (Not the middle, too strong, too strong! more crying….) coupled with drinking a Sprite through a straw that is carefully shoved into his mouth while the mask remains “on”. This helps with the smell of the mask and the sensation caused by the saline and heparin flush, where something weird and scientific happens, but basically he cries that he can “Taste it [the heparin] is my stomach!”

Sprite and essential oils have gotten this whole situation under control. Praise God.

Pharmaceuticals:

Every day Beaudin takes oral chemotherapy. 7 days a week he takes Mercaptopurine (6-MP), and then once weekly, on Tuesdays, he takes Methotrexate. Currently, the 6-MP is 1.5 tablets, and the Methotrexate is 7 tablets. This could, and likely will, change down the road based on his counts. We are lucky in that Beau is well adjusted to taking pills after years of random supplements, vitamins, etc.

On Saturday and Sunday, Beaudin takes an antibiotic called Septra that is a mix of the Sulfamethoxazole and the Trimethoprim antibiotics. He takes 8ml morning and night, for 2 consecutive days and that gives him coverage for the week. This is a prophylactic medicne (that means it prevents the possibility of something, rather than curing a diagnosis) to protect against many bacterias that he is more susceptible to during chemo induced immunosuppression, the main of which being Pneumocystis pneumonia.

Supplements:

Beaudin also takes a host of supplements each night: L-Glutamine, Lauricidin, Alpha Lipoic Acid, CoQ10, Chlorella and an electrolyte powder. L-Glutamine, Alpha Lipoic Acid, CoQ10 supplements are targeted to support the liver and kidneys which are working extra hard processing/filtering the chemotherapy. The Lauricidin is a natural, plant-based medium chain fat derived from lauric acid that is said to support a healthy balance of gut bacteria and maintain healthy levels of yeast. The latter of which being of importance because at the beginning of each 12-week maintenance cycle, Beaudin has a 5-day steroid pulse. One of the potential side effects of steroids is yeast overgrowth and so he is prescribed an anti-fungal medicne. We try to limit prophylactic meds as often as we feel comfortable and this is an example of that- prevent with natural supplements to avoid another pharmaceutical. The Chlorella helps with detox, or something, and it’s green and feels right, so he takes some of those most nights. The electrolytes are to help replenish what is lost in the sauna, and a general addition because we have highly filtered water that while filtering out all the junk, also filters our some trace minerals.

A couple nights each week, really whenever I think of it, we take Melatonin. Oh Melatonin, where to begin? There is a host of research out there on melatonin and cancer, specifically if melatonin can help fight (dare I say “cure”? I would never, the internet trolls would have my head!) cancer because (how I understand it) it triggers the body to REM sleep where regenerative cell growth can take place. In modern society, where we stare at a light source until the moment we go to bed, and then make sure each of our kids has a night light and a sound machine, our bodies spent a lot less time in REM sleep and as such have less time for regenerative cell growth. So, to help Beau’s recovery, and really just to ensure we are all getting good sleep- we use blackout curtains and melatonin and make our kids sleep in silence. You can read more about optimal sleep here: https://wellnessmama.com/55821/perfect-sleep-environment/\

This post was getting too long for my liking, so I’ll finish up in Part 2 soon.

Post Script:

I shy away from detailing these things because many of them I cannot explain in words with the same passion and accuracy that I understand them. I research a ton, daily I read medical journals and peer reviewed articles, I compare my notes against my doctor’s recommendations, we consult with a naturopathic oncologist in Arizona, I listen to podcasts, I read books, you.name.it. I have taken in the info, I have digested it, I have distilled out what is right for me and my family. BUT, I have no gift for scientific writing and in the end am not a doctor. But I am my kids mother and will continue to give my intuition a seat at the table. Each topic, whether it’s rebounding or melatonin, why we have decided to prophylactically dose antibiotics but not prophylactically dose antifungal has been thought through, a lot. We’ve landed here, I am comfortable with where we are at, but I can’t unwind the countless hours of decision making in a blog post. Take my word for it, or research it yourself!

It should go without saying, none of this information is meant to stand in place of sound medical advice. I would strongly suggest you consult your medical team with any changes that you are looking to make in your care plan. And if they don’t listen, find a care team who will! If you ever want to know more in-depth details on the things we do, and why we do them, I am glad to chat about them. Reach out.

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