Another month of steroids are done for Ally. She does a five day pulse of them every month. There is a love/hate relationship with these little pills. Well, more hate than love. The pills are arguably a medical miracle drug for lots of kids and adults. Not just cancer patients either, they use them for lots of things. Amazingly, Dr B told me he could put 3o % of his cancer kids into remission with steroids alone. So I like to hear that. And prednisone, the steroid she takes now, is waaaay easier on her than the Decadron that we took the whole first year. The decadron caused our girl to lose her personality and I HATED that. She also slept terribly while on it. With the prednisone, she sleeps better and she doesn't get withdrawn.
But she does get HUNGRY. Really hungry. She eats about every two hours. Not just snacks..she eats meals and everything. She woke up at 5 am today and was hungry. I do try to keep it healthy...she is not allowed to gorge on chocolate cake or anything crazy. It is so hard because the steroids make her cheeks really round and her belly really round and one of the hardest things is to find clothes that fit her. Just yet another side effect of this disease...we have to shop really carefully. I have listened to countless other "cancer moms" complaining about the same thing...their girls can't find dresses, etc. I just hate it. But we will live with it. As long as our daughter is here and healthy how can we really complain?
On the drive to swim practice the other night, Ally says to me: Mom, will swimming make me skinny? And how was I supposed to answer that??? Yes, I guess it could, but you are taking medicine that will make skinny be very hard for you. The swimming should certainly help matters and her medical team thought it was one of the best things we could do.
Darn steroids. They also make her more likely to break her bones. Something as simple as stubbing her toe could cause a break. We have already had three xrays because of it. And they make her cheeks annoyingly rosy to the point that I check her for fevers every five minutes.
Such is our life. On steroids. For the next year. We'll take it, for better or worse. Anything to keep our girl safe.
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Skinny is overrated anyway! Owen is so skinny we have trouble finding pants for him. But I do wish it didn't matter to her, since it does, I hope she finds happiness with her beautiful self.
ReplyDeleteMatthew too has to take prednisone on and off. It never use to affect him, but in the last couple of years, it does increase his appetite somewhat (about 3 years ago he gained 6 pounds in 3 days). It also chubbs up his cheeks and his belly. He just did a 5 day burst about 2 weeks ago. The chubby cheeks are gone, but not the belly yet. It does go away for him after a little while. He just rubs it and laughs. Tell Ally to hang in there, there are many other kids who will understand how she feels. And for the swimming - Yea Ally.
ReplyDeleteI know exactly what you're talking about! Boy, do the steroids ever make kids very round in the tummy and cheeks. Our daughter is hardly recognizable. She hasn't tried prednisone yet, but I agree that the decadron made her withdrawn and very irritable. You're right though, anything to keep your girl safe and ours too!
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