No catchy title this week. Unless I think of one while I write. I mentioned on my Facebook page a few days ago that my next entry would be about the evils of Dexamethasone, but that I would have to wait because we are currently experiencing the evils of Dexamthasone.
So what is Dexamethasone, and why is it such a problem? Dexamethasone is a Corticosteroid commonly used as part of Leukemia protocols. It destroys white blood cells, and it increases the effectiveness of other chemotherapy agents. Unfortunately, Dexamethasone interferes with the absorption of Potassium. Several things happen when Potassium is depleted in your body: Serotonin is not processed effectively, cramping and general body aches may occur, and your immune system is further compromised. Appetite changes and food jags often accompany Dex pulses.
So what does this look like? Once a month, Ryan takes 3 mg of Dex each morning and each evening for 5 days. Ryan clears medication at a slower than normal rate, which, while the oncologists may disagree, is evidenced by the fact that his ANC remains elevated as long as a week to 10 days after his first dose, and some times longer than that. This shows that the medication is still being metabolized, rather than clearing quickly, so the side effects are often extended.
We call the side effects ‘roid rage. Children on Dexamethadone can experience anything from mild irritability to steroid induced psychosis. They may eat everything in sight, or they may eat nothing. Food in general may sound good, or they may go on a food jag. They may be completely revved, going 100 miles an hour, or they may sleep 18 hours a day. Ryan has done it all.
I can recall one Dex pulse that occurred inpatient. Ryan went through this phase where EVERYTHING sounded good, but once it was in front of him, he didn’t want it, and I had to go make or buy the next request. The object of the game was for me to procure the desired food before he decided he didn’t want it after all. One day, it started at breakfast. He wanted a burrito. That was NOT what was on his breakfast tray. So the nurse ordered it. By the time it got there, he wanted eggs and bacon. I ran down to the cafeteria to get that. He ate a few bites, then said he was not hungry. About half an hour later, he wanted chicken rice, which I make at home before inpatient stays because it’s a staple. Ran to the kitchen, fixed a small bowl of that. 2 bites and “I can’t do it. I not hungry”. 20 minutes later it was pizza. We always keep pizza up there. Off I went. Nope. Not gonna eat that. Wants a cheeseburger and fries. It’s nearly lunchtime, so the nurse orders that. It got there, he ate a little of that. It went on all day like that. And you can’t say no. He can’t help it. The frustrating part, along with being run ragged, is seeing his face when I put the food in front of him and he can’t choke it down. It’s not that he isn’t hungry, he is. It’s just that nothing is appetizing.
On the other hand, we have had pulses where he ate pizza for breakfast, lunch and dinner the entire pulse. Some kiddos fixate on bacon. Some kids it’s fast food. And there is just no getting out of it. People accuse us of letting our child control us. This is not the case. The Dex is ruling, and I challenge anyone who disagrees to take my child for a few days on a Dex week and try it their way. BECAUSE I WAS THEM. I DID TRY IT. AND I LOST, AND SO DID RYAN.
He started this current pulse Tuesday night. He ate nothing for me except goldfish crackers until yesterday afternoon, when he ate 6 pieces of pizza in one sitting.
But worse than food issues is the mood swings. When Ryan was first diagnosed when he was 2, he was on Dexamethasone for 29 days straight. He spent a large amount of that time curled up in a fetal position in the corner of his crib, crying and moaning in pain. The worst of this is that as a parent, you are still reeling from the diagnosis itself. You are only able to do what you are told, the doctors are running the show. You don’t know enough to even advocate yet, you don’t yet know what’s normal and what’s not, you are barely keeping your head above the water. You don’t have a support system yet. I remember being so distraught about his clear discomfort, but not knowing how to approach this man who now held my baby’s life in his hands. All I could do was trust him.
We got through that time, and at relapse, were placed on a protocol which, while Dex was a major component, only required pulses, not a continuous 29 days.
Now we are in Maintenance, doing it once a month. Last month was bad. Ryan cried off and on the first couple days, lots of stomach pain, refused to be away from me, insisted on laying in bed with me, all day, with at least half of his body touching mine. On that Friday, he cried for 2 hours because of some tiny, insignificant (to me) thing that happened. Saturday, I looked at him, I just LOOKED at him, and he cried for 4 hours. FOUR SOLID HOURS. Finally he cried himself to sleep. The next day I called the attending and told him either he was going to allow me to sedate Ryan if it happened again or he was going to have to sedate ME. Although the doctors don’t really comprehend the severity of the whole thing, we came to an agreement, which our primary oncologist is also on board with. For the last 48 hours of that pulse, Ryan slept 37 of them.
This time has been easier. I was able to increase his Potassium intake. I added in nausea meds and Ativan. He has not been as clingy, has kept to his regular routine. The only thing is that his “GO” button is stuck, and he has chattered incessantly all week long. Our internet went down for 12 minutes, and that set him off a bit but it got fixed.
I used to try to manage a regular life around Dex pulses. I have found it much easier to just ease up on life during these times lately. He is not going to starve to death. We don’t HAVE to go to the party. Errands can wait. Pizza can be delivered. It is better for Ryan, and for me, if we stay home with the air conditioner on and the lights low and eat pizza and snuggle and listen to music. We go at his pace now, and the Ativan really helps.
But it is heart-wrenching to see the medication take control of his little body. It’s tough to be locked down, however self-imposed it may be. He wants his mother. So I try to be here. If he picks up something to perseverate on, I do the best I can. He spent Wednesday night with his dad, and last night at my parents’, and is back with his dad now for another couple hours. He will be tired when he gets home, and cranky. But he took his last dose this morning,and tonight, well, tonight we will snuggle because I’ve missed him.