The drug that Daniel begins tomorrow will begin to knock out his T-cells. The T-cells are responsible for his immune system basically and this is what is keeping him from catching all viruses and infections right now. We have been told that this is going to be really tough, especially the first days of it because it wipes the greatest amount out first. They said they can back off if needed but try their best to just get him through it hard and heavy to get through it and move on. They describe it as the worst whole body flu possible all at once, because it drops his whole immune system at once. We have been so fortunate with our boys that they have never really had the flu so we don’t even know from them being sick really. They assure us they will keep him as comfortable as possible but I am terrified. I don’t anticipate pain like he had back in June, more like whole body aches and fever and just miserable. I hope they can give him something to let him sleep through it all. Sure enough Daniel has asked if they can time it so he can still be okay to watch the football games throughout the days. This kid is relentless. Doc said unfortunately no, but maybe the games will serve as a distraction and let him work through the discomfort. I know I need to sleep tonight to be ready for a big few days ahead but I already anticipate a sleepless night. I think he is anxious too and I am starting to see signs of it. The unknown is daunting. I think he is missing home more than usual and the rules and restrictions are weighing on him. I think we don’t have as much sunlight in our room either. This makes a big difference too. But as of now we will keep up our energy as much as we can and do what we can as much as we can. The doctors are pleased with his progress and response so far. They are happy with his eating (even though he isn’t) and happy he is still walking in the hall as much as he is. I am happy with how strong he is. He amazes me every hour of every day. Like I keep saying, we are here and in it for the long haul, so we will take it as it comes.
So things are slowly slowing down. Daniel has been nauseous a bit and doctors say that it is the chemotherapy drug just catching up with him. The nausea medicine is making him sleepy so he has napped the past to mornings away. This really makes the days drag for me. I am catching up on many tv shows I haven’t watched in a long time. I have no attention for reading. I barely make it through a one hour show most of the time. Even though Daniel is nauseous he is still eating, except with all the food restrictions of which there are so many, he is very upset and frustrated already. I got a huge sense of this already when he is already refusing to eat off of the BMT special room service menu. It is boring and slim choices. I feel so bad for him and especially because he likes his food so much, I know how hard this is for him. Aunty Debbie is working hard with all the rules to make things to keep him happy but it is not easy. The doctors suspect after tomorrow’s drug kicks in, the eating and appetite will decrease significantly or stop all together. I am optimistic that he will want to continue eating but not sure how I will keep him happy with all the food restrictions we have. He has done such a great job getting his weight back up and ultimately is okay with the idea of possibly needing an NG tube if needed but of course we will try to avoid this as long as possible. Whatever is needed. He really wants my home cooking but right now I can’t give that to him so we will have to make due. This really is the worst diet ever. You really do want everything when you can’t have it.
The drug that Daniel begins tomorrow will begin to knock out his T-cells. The T-cells are responsible for his immune system basically and this is what is keeping him from catching all viruses and infections right now. We have been told that this is going to be really tough, especially the first days of it because it wipes the greatest amount out first. They said they can back off if needed but try their best to just get him through it hard and heavy to get through it and move on. They describe it as the worst whole body flu possible all at once, because it drops his whole immune system at once. We have been so fortunate with our boys that they have never really had the flu so we don’t even know from them being sick really. They assure us they will keep him as comfortable as possible but I am terrified. I don’t anticipate pain like he had back in June, more like whole body aches and fever and just miserable. I hope they can give him something to let him sleep through it all. Sure enough Daniel has asked if they can time it so he can still be okay to watch the football games throughout the days. This kid is relentless. Doc said unfortunately no, but maybe the games will serve as a distraction and let him work through the discomfort. I know I need to sleep tonight to be ready for a big few days ahead but I already anticipate a sleepless night. I think he is anxious too and I am starting to see signs of it. The unknown is daunting. I think he is missing home more than usual and the rules and restrictions are weighing on him. I think we don’t have as much sunlight in our room either. This makes a big difference too. But as of now we will keep up our energy as much as we can and do what we can as much as we can. The doctors are pleased with his progress and response so far. They are happy with his eating (even though he isn’t) and happy he is still walking in the hall as much as he is. I am happy with how strong he is. He amazes me every hour of every day. Like I keep saying, we are here and in it for the long haul, so we will take it as it comes.
2 Comments
Mom
11/8/2014 08:18:44 am
Nadine our hearts and prayers are with all of you. This is the strongest time of your life. You all will come out of this fine. Positive thinking all the way. We love you. And wish we could be there at this time.
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Mandy
11/8/2014 10:58:44 pm
Sending Love and Light where it's needed most
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