final steroids

Dayssi took her last dose of steroids yesterday.  Hallelujah.  She's had two 30-day courses and 2 and a half years of 5-day courses, once per month.  They make her depressed, angry, whiney, physically aggressive (pushy, punchy, slappy), unable to sleep through the night and, as you'll recall from our early posts, hungry all the time but only for very particular things.  We are wondering how much the new, steroid-free Dayssi will resemble Dayssi on steroids.  Whether she is really that demanding, that stubborn, that picky, that physical.  I assume her charm, her affection, her drive and sense of humor, and her tendency to ponder the big questions in life are not drug induced. We are about to find out.

I actually cried as I was getting the last dose together, realizing how much I absolutely hate this drug in particular, not to mention the relentless regimen of remembering to administer all of these medicines, how much energy I have spent over the past two and a half years bracing myself for the steroid week, which coincides with the vincristine week and, every third month, the spinal methotrexate week, wondering how I was going to remember to give her all of her medicines at the right times and when the side effects would manifest, whether Dayssi would go to school or not, whether her legs would ache, her tummy would hurt, or her bowels would shut down, and the guilt: of caring or at least acting like I cared about anything else, of leaving her at home when she felt under the weather, to do anything but especially, to go to work.   These are things I am not going to miss.

Jim and I tried to rally some excitement around the last dose of steroids.  The girls looked shell-shocked.  Dayssi did not want us to document the final dose taking on camera -- in fact she refused to take the medicine until the camera had been put away (remember, she had been on steroids for five days at that point). She does not remember that they were awful for her in the beginning, and for many months -- before she learned how to take a pill, when she had to choke them down in disgusting liquid form.  She doesn't know about the AVN that can be a very serious side effect (especially in older kids) -- the steroids actually block blood flow to the joints, and the bones just die and disintegrate, never to grow back.  I don't think she associates any of the side effects she has visibly experienced with the drugs, although she has learned to make quite a sport of asking for special foods at special times "because I am on steroids."  She knows, I am sure, that this source of her current power is eroding with the end of her treatment.  This is not a happy thing.  India, meanwhile, is I imagine sick and tired of us making such a big deal about Dayssi's dumb treatments.  When I am looking for reasons to feel guilty, India provides plenty.  She has tolerated SO MUCH, on account of the steroids in particular. Endless crying jags, relentless pestering, watching us tolerate things that she would never have gotten away with.  It is not fair, as she reminds us often, what has happened to her over the last 2 1/2 years.  And as much as I look forward to trying to restore the balance in our family, I have no idea how we are going to do it.