Today, we moved back in to start all of this. It is so different now. Although comforting to see our friends up on the 7th floor it is a whole different ballgame in BMT. There are so many different rules on the other side of the double doors. When we got here we passed by room 750 and by all the other rooms. Every room is full here right now. Not a good thing. Our new room is room 765 and it is so small compared to our old room. But it is just us from now on, so we will be fine. I got everything put away and we had all our new rules reviewed and consents signed. Daniel watched football through all of it and I listened in shock to what his new regimen entails from here on out. We started premedicating tonight but tomorrow at 6 am Daniel starts the hard road of chemotherapy 4 times a day, and about 17 other medications along with it. They are starting to aggressively clear out his bone marrow of his own cells and then will totally deplete his immune system by next week. He will quickly will start to feel terrible but in the meantime he will have to do many routine preventative measures as well, like mouthwashes many times a day, exercises several times a day, respiratory exercises to help keep all systems strong. All will occupy every minute of the day along with homework and his radio show that he intends to continue by phone from his room. We are in isolation which means no visitors anymore so this will be difficult. Plus Rob will be gone several days this week because of a work conflict. I hope the first part of this week isn’t too bad. We will abide by the rules. We will do our chores, we will take our meds and we will be strong and get through it day by day. Daniel is taking it all in stride and is a total champ. I am so proud of him. I swear he will get me through this whole thing.
It’s gonna be brief tonight. Too long and emotional of a day today to write for long. Didn’t sleep well last night with terrible thoughts of it being the last night that it could be the four of us in our house together. As I pulled away from the house alone in the car (Daniel with Rob in the other car) I sobbed the entire way to the hospital. Probably one of my worst moments yet. I guess I am realizing just how big this all is. I know how great Daniel is doing right now going into this, but it doesn’t change the fact how big of a deal this really is. When most people think of a transplant, they think of an organ, like a kidney or a heart. We think of it like we see it on t.v. The organ works or it doesn’t at the time basically. This is different. I am not saying it is bigger or worse than someone else’s experience. Not at all. It is just different and it is ours, so well yes I guess it is bigger, and worse, at least to us. The difference for Daniel is, his organ being transplanted is his blood. Actually not his blood, it is the stem cells that make the blood that makes everything work. And to do that they have to take everything out first and then we have to wait for a very long time to make sure that it makes everything else work properly and that it doesn’t have more worse effects that good effects. It is all so very complicated. And it all starts in just a couple hours.
Today, we moved back in to start all of this. It is so different now. Although comforting to see our friends up on the 7th floor it is a whole different ballgame in BMT. There are so many different rules on the other side of the double doors. When we got here we passed by room 750 and by all the other rooms. Every room is full here right now. Not a good thing. Our new room is room 765 and it is so small compared to our old room. But it is just us from now on, so we will be fine. I got everything put away and we had all our new rules reviewed and consents signed. Daniel watched football through all of it and I listened in shock to what his new regimen entails from here on out. We started premedicating tonight but tomorrow at 6 am Daniel starts the hard road of chemotherapy 4 times a day, and about 17 other medications along with it. They are starting to aggressively clear out his bone marrow of his own cells and then will totally deplete his immune system by next week. He will quickly will start to feel terrible but in the meantime he will have to do many routine preventative measures as well, like mouthwashes many times a day, exercises several times a day, respiratory exercises to help keep all systems strong. All will occupy every minute of the day along with homework and his radio show that he intends to continue by phone from his room. We are in isolation which means no visitors anymore so this will be difficult. Plus Rob will be gone several days this week because of a work conflict. I hope the first part of this week isn’t too bad. We will abide by the rules. We will do our chores, we will take our meds and we will be strong and get through it day by day. Daniel is taking it all in stride and is a total champ. I am so proud of him. I swear he will get me through this whole thing.
3 Comments
baba
11/2/2014 08:37:56 pm
We on our way home from Toronto. Dad and mom are with you as much as we can this way.
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Mandy
11/2/2014 11:19:03 pm
A rising Tide lifts all ships! Daniels strength is in ALL those that are caring for him. Doctors.. Nurses... and all those that have been here before paving the way. Stay Strong and keep your eye on the prize. A beautiful HEALTHY long life on the horizon. I Believe In YOU DANIEL <3 today tomorrow and always
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Anna
11/3/2014 08:18:58 am
It sounds like a long and hard climb ahead, but you and Daniel will get there, one day, one hour or one step at a time and be all the stronger for it, if that's possible. Don't be afraid to ask for help - you know that there's a mass of people this side of the door that are here for you.
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