The adrenal glands are pretty amazing organs. These lumpy glands perched on top of each kidney like a floppy little stocking cap are responsible for producing hormones that control the body's use of carbohydrates, fats, and proteins, that suppress inflammatory responses, maintain blood volume, blood pressure, balances of salt and potassium and all the processes associated with epinephine(adrenaline). Fortunately these steroids and hormones have been manufactured by humans and are a decent substitute when adrenal function goes awry.
4 years ago this week, we reached the end of Lily's chemo routine. The in-patient admissions found us facing many of the ups and downs of these alternately life saving and life threatening treatments. During chemo- patients are routinely given megadoses of steroids to try and counteract some of the dreadfully stressful physical responses to the toxic chemicals being administered. We knew going in that she was going to lose her adrenal function- that was the exact purpose. As in many chemo regimens- the hope is to kill off the bad cells before the good ones quit. Concurrently and then after the in patient program- we gave Lily mitotane- a chalky bitter white pill that promised both to kill her cancer and her adrenal gland. Within months it succeeded- although it was difficult to tell which symptoms were from the new adrenal insufficiency and which were from chemo. So in addition to giving her that- we then started her on corticosteroids.
When the chemo stopped, we found our routine. Her platinum blonde spikey streaks coiled back into the brown ringlets we loved. Her cheeks filled out again, her belly rounded. She gained energy and some new emotional ups and downs we worked through- always wondering- is the dose right? Blood tests give you a ballpark- but I learned from a support group online- all of our kiddos experienced many similar emotional ups and downs that correllated with their need or overage of corticosteroid substitution. Experienced doctors looked at us puzzled- that wasn't in the literature. As much as I respect a good scientific read- it neither lives, breathes or screams how much it hates you and that you are the worst mommy ever while stomping upstairs and continue with a gutteral moan for hours. You'd expect this from a 2 year old- but not a 6 year old. At least not a 6 year old in my house- this type of outburst is not tolerated. Life can deal you some sucky hands and no 3 year old should have to face what burdens were placed on her little body- but tantrums are neither productive or healthy in this crazy healing process. Her doses of Hydrocortisone have gone up and down and back up- based mostly on her weight with consideration of how her bloodwork panels look. During sickness- she has no adrenals to signal a need for balance fluid levels- conserve energy or regulate blood pressure- she can go from sick to crisis in a matter of hours. We've seen a couple. Fevers and flu land us in the hospital to be on the safe side. We've come too far to go down like that. She also take fludrocortisone- it is responsible for the mineral hormone functions. It is this tiny little pill that she takes half of- sometimes in summer we up it to a whole pill to account for the stress on the body induced by heat and sweating.
Every 3 months or so we do bloodwork. Usually it looks good. A few months back there was a blip. A normal appointment became a team conference with Oncology to gameplan an approach to this issue that could be endocrine or oncologic. Neither option was rosy- if it was endocrine- it meant that Lily was starting puberty at the ripe old age of 8. The household 12 year old is not yet equipped for this change- the thought of going over these issues with a younger kid is a little daunting until you consider the life threatening and dismal option that cancer may be back. Boobs and a period seem like good trade overall- regardless of age. Scans were had, more tests, more bloodwork, 24 hour urine collection and then another to compare- good times had by all. None of the results pointed at oncology- sigh of relief- although given our propensity to sprout malignancies and our astute, thorough team- that is not good enough. We considered the possibility that her left adrenal gland was trying to work- against all odds- against bombardment by toxic chemicals and then 4 years of supressive replacement therapy. The organs are pretty smart- they have lots of checks and balances to make sure they aren't doing extra work. If you plug in a bunch of hydrocortisone- the adrenals might just go on vacation. You then run the risk that they will like the vacation and grow too lazy to go back to working. For someone like Lily- the replacement steroids are because we were pretty certain her adrenals were not going to work again, ever. After a conference- our endo asks a few specialists what their thoughts are. She hears that it isn't unheard of for adrenals to come back- the body is amazing. You just never know. And we never do.
SO the call came last night- our endo would like to cease the fludrocortisone immediately- we need to do a corticosteroid stimulation test to see if her adrenals are really up to the challenge. It will involve bloodwork, injecting ACTH- which stimulates the adrenal to produce cortisol. After an hour, her blood will be drawn again to see if it's trying. It's a wonderful and scary proposition all at once. It's a rare gift I never really considered- it wasn't really on the table. I'm not sure how to approach it. I am excited at the possibility of a more normal day to day routine- I don't think we'd be out of the proverbial woods with illnesses. I am elated that she might not have to be dependent on these exogenous man made chemicals- with her already taxed and mutation prone system. I am hesitant to get my hopes up and then have them shattered. I worry that she's headed towards early puberty which means a lot of extra hormones that could potentially bring more cancers. But then I remember this gift is just that- an opportunity for more. It is an opportunity I didn't think we'd ever see as I laid by a sick little monkey just cherishing every moment we had. Each day is a gift and each challenge is an opportunity for something we didn't consider but could be amazing. I've never been much of an adrenaline junkie- but it looks like we can't rule out Lily monkey's chance at being one quite yet!
Messages for the Mallorys
8 years ago