We're first...we're second...we are waiting...because nobody knows! It is an odd situation. We are in a room with two kids who have no idea what's coming, all the while us parents are left to wonder if it is going to be as bad as we've heard, worse or if we are just psyching ourselves out.
It is crazy. For a room that is going to be in such a bad place in a couple of hours, it sure was the loudest most lively room this morning with two happy little boys.
They have pre-medded Clayton with lots of things at this point, but we aren't yet close enough for the dilaudid. Dilaudid is their narcotic of choice for pain management. The child-life specialist has brought in a CD player with a track of what is suppose to be soothing sounds for the kids during this. They have prepared the oxygen masks, and the suction and hung a bag of emergency meds. I also noticed a crash cart outside the door, but that might always be there...not sure.
The actual 3f8 nurses have started coming in and out...everyone was sure we would be first, but it looks like we will be second since pharmacy sent up our roommates meds first...
The way things will go, we will sit here on our side of the curtain while our roommates go through their first dose and immediately after it will be our turn.
God help these babies through this!
Clayton and I are definitely feeling some of our meds. Yes, I took something for me. I probably look stupid trying to eat my salad cause I'm a little...slow right now...there is a lady with a rainmaker here and everything...you know those sticks they use to have at Moonstone in Fairhope. Very soothing...
August 6, 2012
August 5, 2012...the eve of 3f8
We made it to NYC. We even arrived a little early. No woo hoo's here though. This feels more like a "business trip" than ever before. We are here for one reason and one reason only, 3f8. We dont even have a room at RMH right now. There was some confusion about our reservation and the normal neuroblastoma social worker was out all week and the on-call social worker wasn't able to help us any further. So for now- and maybe the whole week- the 9th floor at MSKCC is our only home here in NYC.
George and I have definitely been on edge all day. It is hard to suppress the fear and frustration that comes along with this disease and especially this treatment. Even when I found out it was definitely a go last week, in that moment I had to hold it together. All of the anticipation just wanted to come rushing forward.
We know this is the right thing though. All of the research and the pain have led us here to this hospital and these doctors and in large part, this treatment. While that will not make the week easier, it is what makes it possible for us to get through it even when we have no idea how. This week will be hard for everyone. What we are doing is unimaginable and yet like so many other parents, we have found ourselves in agreement with the doctors here that this is the best thing for Clayton. There was a time when my child having cancer was unimaginable and yet here we are. So we can do this. We will suck it up and we will do it, because it is the difference is Clayton having a 20-40% chance of survival verses a 40-70% chance of survival- rough numbers given by the doctor.
We are here and we are settled in our little nook. Yes, even for 3f8 you have a nook rather than a room to yourself. Our roommates got here a little after us last night and I was excited to see who they were. I had seen them before in the day hospital. They have a little boy near Clayton's age and from what I could hear of his video last night, he is a CARS fan too. Two peas in their little 3f8 pod for the week. This is their first round of the 3f8 as well. I really couldn't be happier about our roommates. Good roommates makes a big difference.
Pain is one of the ways your heart breaks and it is not something you want to experience in front of strangers, however, having cancer forces you to do that on a regular basis. It is a comfort knowing that the pain of the events this week will be shared with a family in a similar place. Because we WILL be sharing everything. We will both be doing the 3f8 here in our rooms rather than on the 3f8 wing. We will both be able to hear everything each other and our children are going through. Every whimper and frantic effort to stop the pain will be shared. The horrible part is that one of us has to go first. Which means the other parents have to sit through it and listen to everything from behind a curtain knowing it is their turn next. Then of course for the ones that go first, when they finally think it is over, they have to relive it listening to the other child go through it. Even if it is not your child I imagine it is heartbreaking listening to any child experience that level of discomfort. It is going to suck and no jokes about being armed with klonopins are going to change that.
Pray hard for whatever will help Clayton get through this.
The room isn't as bad as it looks in the picture. Small, but not bad. We walked through the halls, and even here at MSKCC they are dreaming of 5 o'clock somewhere.
George and I have definitely been on edge all day. It is hard to suppress the fear and frustration that comes along with this disease and especially this treatment. Even when I found out it was definitely a go last week, in that moment I had to hold it together. All of the anticipation just wanted to come rushing forward.
We know this is the right thing though. All of the research and the pain have led us here to this hospital and these doctors and in large part, this treatment. While that will not make the week easier, it is what makes it possible for us to get through it even when we have no idea how. This week will be hard for everyone. What we are doing is unimaginable and yet like so many other parents, we have found ourselves in agreement with the doctors here that this is the best thing for Clayton. There was a time when my child having cancer was unimaginable and yet here we are. So we can do this. We will suck it up and we will do it, because it is the difference is Clayton having a 20-40% chance of survival verses a 40-70% chance of survival- rough numbers given by the doctor.
We are here and we are settled in our little nook. Yes, even for 3f8 you have a nook rather than a room to yourself. Our roommates got here a little after us last night and I was excited to see who they were. I had seen them before in the day hospital. They have a little boy near Clayton's age and from what I could hear of his video last night, he is a CARS fan too. Two peas in their little 3f8 pod for the week. This is their first round of the 3f8 as well. I really couldn't be happier about our roommates. Good roommates makes a big difference.
Pain is one of the ways your heart breaks and it is not something you want to experience in front of strangers, however, having cancer forces you to do that on a regular basis. It is a comfort knowing that the pain of the events this week will be shared with a family in a similar place. Because we WILL be sharing everything. We will both be doing the 3f8 here in our rooms rather than on the 3f8 wing. We will both be able to hear everything each other and our children are going through. Every whimper and frantic effort to stop the pain will be shared. The horrible part is that one of us has to go first. Which means the other parents have to sit through it and listen to everything from behind a curtain knowing it is their turn next. Then of course for the ones that go first, when they finally think it is over, they have to relive it listening to the other child go through it. Even if it is not your child I imagine it is heartbreaking listening to any child experience that level of discomfort. It is going to suck and no jokes about being armed with klonopins are going to change that.
Pray hard for whatever will help Clayton get through this.
The room isn't as bad as it looks in the picture. Small, but not bad. We walked through the halls, and even here at MSKCC they are dreaming of 5 o'clock somewhere.
August 5, 2012
August 4, 2012
I am really at a loss of what to say. I have a bazillion things going through my head. Truthfully, I am not so much at a loss of something to say, as I am finding that there is so much to say, I have no idea where to start.
I guess I'll start with home. It has been so nice to be home. It always is nice; but definitely never dull...I went to the dentist for a filling and walked out with a pricey crown because insurance won't cover it until after January; but what are you suppose to do when your in the chair and you have a huge hole in your tooth and have to make a decision? You make the choice that you think will leave you with the least discomfort. So I traded a hole in my tooth for a hole in my wallet. THEN we noticed the dog was acting funny. Slowly she stopped eating and drinking and even moving much. Come to find out she had pancreatitis. So after an overnight stay at the vet, some IV fluids and some antibiotics later, she is recovering with George's folks. On the flip side, I had an amazing dinner with a dear friend. Getting to relax with good company is rare these days, so that was a real treat. I also got to do more purging! Yay for de-cluttering the house...it feels so good! AND I met with some ladies from the BCBE about Clayton's preschool; starting August 20th he'll go three mornings a week! I'm hoping he can go to the Learning Tree the other two mornings if they have room...?
The question remains what do you do knowing you are about to face one of the toughest weeks of your life? You try not to think about it. You find your self more irritable than normal and trying not to take your frustrations and fears out on every one else. For months you have been trying not to take your frustrations out on others or to project your fears onto other things. It is a battle that sometimes you win and sometimes you lose. You obsess about things- things with work, things with home, personal goals, all kinds of things- all just trying not to think too much about it. At least that's what I do...did...have found myself doing. But now it's time and I can't ignore it or continue to talk about it like it is just another "means to an end". It will be my reality every day this week and in a month I'll have to do it all again...
For now, the kind folks at Dove were sweet enough to give me some inspirational messages throughout the week...
I guess I'll start with home. It has been so nice to be home. It always is nice; but definitely never dull...I went to the dentist for a filling and walked out with a pricey crown because insurance won't cover it until after January; but what are you suppose to do when your in the chair and you have a huge hole in your tooth and have to make a decision? You make the choice that you think will leave you with the least discomfort. So I traded a hole in my tooth for a hole in my wallet. THEN we noticed the dog was acting funny. Slowly she stopped eating and drinking and even moving much. Come to find out she had pancreatitis. So after an overnight stay at the vet, some IV fluids and some antibiotics later, she is recovering with George's folks. On the flip side, I had an amazing dinner with a dear friend. Getting to relax with good company is rare these days, so that was a real treat. I also got to do more purging! Yay for de-cluttering the house...it feels so good! AND I met with some ladies from the BCBE about Clayton's preschool; starting August 20th he'll go three mornings a week! I'm hoping he can go to the Learning Tree the other two mornings if they have room...?
The question remains what do you do knowing you are about to face one of the toughest weeks of your life? You try not to think about it. You find your self more irritable than normal and trying not to take your frustrations and fears out on every one else. For months you have been trying not to take your frustrations out on others or to project your fears onto other things. It is a battle that sometimes you win and sometimes you lose. You obsess about things- things with work, things with home, personal goals, all kinds of things- all just trying not to think too much about it. At least that's what I do...did...have found myself doing. But now it's time and I can't ignore it or continue to talk about it like it is just another "means to an end". It will be my reality every day this week and in a month I'll have to do it all again...
For now, the kind folks at Dove were sweet enough to give me some inspirational messages throughout the week...
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