Today was completely med-free!
With the successful completion of induction (the initial four week phase of treatment) we've had a weekend off from our twice daily meds routine. Yet, at least a couple of times a day, Mags has required Tylenol to relieve pain in her lower back. But today - nothing!
Today also saw her designing clothes with Veronica, coloring pictures for Christmas gifts, playing peek-a-boo with Ellie, crawling upstairs to watch movies with her brothers and sisters (she's a bit weak due to loss of muscle mass), and making up jokes. The joke of the day? "Why did Sally take a construction worker to school? Because she wanted to go to HIGH school."
This is huge. Until last Friday, we had been giving her dexamethasone (a steroid) twice a day to kill off lymphocytes. We'd been warned that it would make her extremely emotionally labile, but instead of the irritability and rage that we expected, we ended up with what looked like severe depression. Apparently, Maggie tends toward the "steroid blues" end of the spectrum.
We made a comfy bed for her on the living room couch, and that's where she has spent the majority of the past four weeks. Despite our best efforts, all she wanted was to lay there and pick at the peeling skin on her hands.
The only way we were able to engage her was with food. Up until now, Mags has - by choice - lived a pretty carb heavy existence. And the sweeter the better. Furthermore, she has been a sloooooow eater. I kid you not, I have watched two hours tick by as she has worked on half a bagel.
As soon as she had a couple of doses of dexamethasone on board, she became consumed (pun totally intentional) with food. Weekly meal planning (the bane of my existence) has taken no more than five minutes; Maggie has let me know exactly what she wants and when she wants to have it. And what she wants is typically protein-rich and rather salty; we've become frequent visitors to the local Chinese restaurant. One order of fried potstickers will see Mags through a day and night. The kid eats 24 hours a day. As Gus already mentioned, she visits our bedroom at least a couple times a night with requests. And when she has food in front of her, her whole being is focused on getting it into her body; she's a machine.
When she's not eating, she's thinking about eating. She recalls, in great detail, the favorite meals of her short existence. She considers how the less savory meals could be made better. We catch her making little mmmm mmmm sounds as she muses. After waking from anesthesia, her primary concerns are whether she should have sushi or cheese ravioli. Gus and I were discussing buying Ellie a high chair, and Maggie was completely taken with the idea of a pie chair. "So would this chair be made out of pie, or made for eating pie?" I queried. "Whatever," she replied. Pie was just the operative word.
A few days off steroids and we can already see her transitioning back. Her curiosity was piqued by a television advertisement for Lindt chocolates. Four of yesterday's order of potstickers remain in the fridge. Tonight at dinner, she ate twice as many bites of egg noodles than pot roast.
In the future, we'll be having short bursts of steroids as opposed to 30 day jags. We are grateful.
(During the writing of this post, I had to wake Maggie to eat, as she is NPO after midnight due to a spinal tap tomorrow. As she ate her spaghetti (with real parmesan, please), the pain in her lower back became more than she could stand. She received Tylenol with codeine at 11:57. And that's okay.)