So, for those of you that have never experienced high dose steroids (and I hope not many have), here’s a view into our lives on steroids. Maddie is currently in the thick of a 21-day stretch of high dose steroids that she takes orally twice a day. The steroid, dexamethasone, helps to rid the body of the leukemia, but has several undesirable side effects, such as excessive hunger, labile emotions, and sleep disturbances. This stretch is Maddie’s second lengthy period of steroids, and, when she first started the steroids, the folks at the clinic told us to expect her “to eat like a truck driver” (no offense to any truck drivers out there). We could never have imagined what they truly meant until we went through it the first time.
Now, armed with some experience, we are better prepared to deal with the challenges of the steroids. Just to give you a sense of this “excessive hunger”, here is what Maddie ate throughout the day on Saturday:
Before breakfast: 1 piece of banana bread, half a tuna sandwich, half a peanut butter sandwich, pretzels, and a bowl of cereal.
Breakfast: half a bagel, egg, bacon and cheese sandwich.
Between breakfast and lunch: half a quesadilla, chips with queso dip, and a hot dog.
Lunch: half a peanut butter sandwich, bowl of mac ‘n cheese, and grapes.
Between lunch and dinner: peanut butter sandwich, chips and queso dip, half a peanut butter sandwich, and sliced cheese.
Dinner: one small piece of pizza
Food cravings are also a piece of this puzzle. During first phase of steroids, she craved lobster stew, which was getting a little pricey. This time, luckily enough, peanut butter sandwiches are food product of choice, and we have honed our short-order cook skills to produce any other highly sought after foods, such as scrambled eggs, grilled cheese, quesadillas, and hot dogs. You don’t want to cross a steroid crazed 4-year-old, if you know what’s good for you, so we do our best to oblige.
She tends to gain a lot of weight during this time, and, as the days progress, she becomes increasingly uncomfortable. Her belly is distended and she looks like she is about 9 months pregnant. Her sleep is erratic, a side effect of the steroid and the fact that she is constantly hungry. She’s up several times in the night, sometimes to eat and sometimes just because she cannot sleep. She gets easily frustrated, too, during this time by the simplest thing that usually would cause her to say “it’s no big deal.”
Sounds like fun, huh? It’s completely heart-breaking to see her go through this time and we do our best to support her with patience and love. We are encouraged by her positive spirit even in light of her struggles with the medicine. We are bolstered by the fact that we only have 7 more days of steroids; we figure we can do anything for 7 days. This is not the way I originally envisioned my taper toward the Olympic Trials, but we gotta play with the cards we’ve been dealt, right?