More FAQ
I have posted a few sets of frequently asked questions. One here. One here. And one here.
Here are the latest.
What does Eliot eat now? Anything special?
They encourage us to let Eliot keep living his normal Eliot life. They also let us know that chemo therapy can sometimes change your taste in food - some foods that used to taste good won't anymore for example. The chemo therapy can also constipate you. Basically Eliot is eating the same food he always did with mommy's extra special attention to fiber. The steroids make him snacky so we're eating the same old yummy foods a few more times during the day.
Is Eliot on a whole ton of drugs?
We do have several drugs we give Eliot. My sister saw the basket of them and I saw her eyes pop out of her head. The basket makes it look a lot worse than it is because we have practically all of the medicine in the house in that basket.
Eliot is taking some medicine to help prevent pneumonia. He is also taking the steroids. He is taking some heart burn medication and when he needs it a laxative. He is also taking another drug that has the weirdest directions I've ever read 'take twice daily by mouth every week on Monday and Tuesday.' Very odd. I don't even know what that drug is for either.
The medicine giving is going much better than it was the other night. No more throwing up, now just some crying and complaining.
Why can't Eliot go out in crowds and what do we need to do to help him be safe?
They don't want him exposed to lots of colds and stuff because his immune system is taking a double whammy right now. Not only is he not producing the 'fighting white cells' the chemo is knocking his system for a major loop. So we're just supposed to keep him away from as many cold germs as possible. We're being very vigilant hand washers and hand sanitisers and asking all of our guests to do the same. We also can't have guests who have runny noses, coughs, fevers, diarrhea or the chicken pox. We also can't hang around with people who have recently received live vaccines and we'll end up goofing with Naomi's vaccines a bit so she doesn't end up getting Eliot sick.
Does he throw up a lot?
He threw up the other night mostly from being upset we think. Otherwise he hasn't thrown up a bit. We have some super expensive anti-nausea medicine here in case we need it. They say its really good stuff.
How is he doing?
Eliot seems to be doing well. He limps a little - probably from the medicine making his feet tingle a bit or some other drug making him achy. He is clingy and wants to be held a lot. He is moody and decisively indecisive. He also sleeps a bit extra and asks to go lie in his bed at least once a day. The doctors say this is all completely normal and that he is doing quite well and continues to be delightfully unexceptional (well he isn't unexceptional, his cancer is and his body's response to the cancer is) just as we like him.
Sara are you okay? You've been swearing an awful lot lately.
I am okay. I am tired. I am very, very tired. Life as mom just got really physically demanding. Both children want to be held. Both children just recently gained some weight. Both children are feeling some stress and need some special attention. I'm still positive about the outlook and Eliot's prognosis. I still feel lucky. We're dealing with the 'good' leukemia. We have an incredibly supportive and wide net of support. I still feel literally held up in prayer.
I feel very clear that there is a lot about life I can't control now and that trying to control it is futile. I feel very clear that there are things I can control (how I am around my kids, how I treat them, the kind of time we spend together) and I need to take care of myself so those things are positive. My fuse is fairly short right now in some ways and also in other ways I'm finding my fuse seems to have a never ending length to it. I'm hungry for fun and laughter and adult time. I'm also hungry for a real, healing massage and a great walk and a warm meal. I'm also ravenous about the idea of full nights sleep while at the same time feeling resigned to not having one. A lot of the spiritual practices I've been struggling with for some time have 'clicked in' and I'm feeling centered and clear and real. Really. Really. Real. I would trade this back for my life of a month ago if it meant Eliot could be healthy and not be going through what he's going through and at the same time this feels like what life is right now and its okay. Its really okay.
Here are the latest.
What does Eliot eat now? Anything special?
They encourage us to let Eliot keep living his normal Eliot life. They also let us know that chemo therapy can sometimes change your taste in food - some foods that used to taste good won't anymore for example. The chemo therapy can also constipate you. Basically Eliot is eating the same food he always did with mommy's extra special attention to fiber. The steroids make him snacky so we're eating the same old yummy foods a few more times during the day.
Is Eliot on a whole ton of drugs?
We do have several drugs we give Eliot. My sister saw the basket of them and I saw her eyes pop out of her head. The basket makes it look a lot worse than it is because we have practically all of the medicine in the house in that basket.
Eliot is taking some medicine to help prevent pneumonia. He is also taking the steroids. He is taking some heart burn medication and when he needs it a laxative. He is also taking another drug that has the weirdest directions I've ever read 'take twice daily by mouth every week on Monday and Tuesday.' Very odd. I don't even know what that drug is for either.
The medicine giving is going much better than it was the other night. No more throwing up, now just some crying and complaining.
Why can't Eliot go out in crowds and what do we need to do to help him be safe?
They don't want him exposed to lots of colds and stuff because his immune system is taking a double whammy right now. Not only is he not producing the 'fighting white cells' the chemo is knocking his system for a major loop. So we're just supposed to keep him away from as many cold germs as possible. We're being very vigilant hand washers and hand sanitisers and asking all of our guests to do the same. We also can't have guests who have runny noses, coughs, fevers, diarrhea or the chicken pox. We also can't hang around with people who have recently received live vaccines and we'll end up goofing with Naomi's vaccines a bit so she doesn't end up getting Eliot sick.
Does he throw up a lot?
He threw up the other night mostly from being upset we think. Otherwise he hasn't thrown up a bit. We have some super expensive anti-nausea medicine here in case we need it. They say its really good stuff.
How is he doing?
Eliot seems to be doing well. He limps a little - probably from the medicine making his feet tingle a bit or some other drug making him achy. He is clingy and wants to be held a lot. He is moody and decisively indecisive. He also sleeps a bit extra and asks to go lie in his bed at least once a day. The doctors say this is all completely normal and that he is doing quite well and continues to be delightfully unexceptional (well he isn't unexceptional, his cancer is and his body's response to the cancer is) just as we like him.
Sara are you okay? You've been swearing an awful lot lately.
I am okay. I am tired. I am very, very tired. Life as mom just got really physically demanding. Both children want to be held. Both children just recently gained some weight. Both children are feeling some stress and need some special attention. I'm still positive about the outlook and Eliot's prognosis. I still feel lucky. We're dealing with the 'good' leukemia. We have an incredibly supportive and wide net of support. I still feel literally held up in prayer.
I feel very clear that there is a lot about life I can't control now and that trying to control it is futile. I feel very clear that there are things I can control (how I am around my kids, how I treat them, the kind of time we spend together) and I need to take care of myself so those things are positive. My fuse is fairly short right now in some ways and also in other ways I'm finding my fuse seems to have a never ending length to it. I'm hungry for fun and laughter and adult time. I'm also hungry for a real, healing massage and a great walk and a warm meal. I'm also ravenous about the idea of full nights sleep while at the same time feeling resigned to not having one. A lot of the spiritual practices I've been struggling with for some time have 'clicked in' and I'm feeling centered and clear and real. Really. Really. Real. I would trade this back for my life of a month ago if it meant Eliot could be healthy and not be going through what he's going through and at the same time this feels like what life is right now and its okay. Its really okay.
posted by Sara at 9:15 PM
0 Comments:
Post a Comment
<< Home