Finally, we have made it, we are here, we are done with it... Good bye prednisone!! You have done your job, so now it is time to go! And well, sorry but we don't ever want to see you again! It has been 4+ long years for McClain taking prednisone. On it off it, back up on the dose, going down on the dose. It's job was to first battle McClain's HLH and suppress his immune system (the HLH) until transplant time, then it was used to help McClain go through transplant and suppress his immune system to battle the GVH (graft vs. host disease). So in the past 4+ years the goal has to been to get McClain off of this medicine, but it is so difficult to do. First because we have to worry about the up rise of any GVH, and second well because you can only go down on the dose a very little at a time and it takes quite some time to get all the way off. The worst part of the whole thing is each time he is tapered down, he gets sick. I don't mean like cold of flu sick, I mean he just feels crummy! Tummy aches, nausea, loss of appetite, potty problems the whole thing. It is plain miserable for him and stressful for me, because I worry about him so much. And of course there are so many side effects with this medicine, a suppressed immune system is just the beginning. But long term it cause weakened bones, and the the one that I am so familiar with (because people, and I mean strangers) are always telling me how little he is for his age (like I didn't know) it can stunt growth. Which then means the possibility of growth hormones (crossing our fingers, please no), but hopefully he will have a growth spurt. But those really are only a couple of the reasons, it is so important for McClain to get off the prednisone, after he is done with the prednisone he can also get off up to 3 or 4 medicines right away. Then hopefully the rest by the end of the year. So any how, we have been at this game for a while now, and well today, was the day. The very last dose. He is done! So now we have to get through a tough week maybe two, its hard to tell. We just have to get him though it. He is so tough, it's just amazing the things he has gone though, and he just gets through it, better than any adult would. Sometimes, to this day if I think about it to much, I will just start to cry, because it breaks my heart, I still hurt for him, knowing what he has gone through, what he has overcome. And he is here, he is amazing, sweet, funny, smart, loving, silly, funny, tough, curious, stubborn, strong willed, playful, imaginative, energetic and so much more. All the things a little boy should be. And he is here, he may be small but he is strong. And he is our 'little-big boy"
Saturday, February 19, 2011
February 18
Finally, we have made it, we are here, we are done with it... Good bye prednisone!! You have done your job, so now it is time to go! And well, sorry but we don't ever want to see you again! It has been 4+ long years for McClain taking prednisone. On it off it, back up on the dose, going down on the dose. It's job was to first battle McClain's HLH and suppress his immune system (the HLH) until transplant time, then it was used to help McClain go through transplant and suppress his immune system to battle the GVH (graft vs. host disease). So in the past 4+ years the goal has to been to get McClain off of this medicine, but it is so difficult to do. First because we have to worry about the up rise of any GVH, and second well because you can only go down on the dose a very little at a time and it takes quite some time to get all the way off. The worst part of the whole thing is each time he is tapered down, he gets sick. I don't mean like cold of flu sick, I mean he just feels crummy! Tummy aches, nausea, loss of appetite, potty problems the whole thing. It is plain miserable for him and stressful for me, because I worry about him so much. And of course there are so many side effects with this medicine, a suppressed immune system is just the beginning. But long term it cause weakened bones, and the the one that I am so familiar with (because people, and I mean strangers) are always telling me how little he is for his age (like I didn't know) it can stunt growth. Which then means the possibility of growth hormones (crossing our fingers, please no), but hopefully he will have a growth spurt. But those really are only a couple of the reasons, it is so important for McClain to get off the prednisone, after he is done with the prednisone he can also get off up to 3 or 4 medicines right away. Then hopefully the rest by the end of the year. So any how, we have been at this game for a while now, and well today, was the day. The very last dose. He is done! So now we have to get through a tough week maybe two, its hard to tell. We just have to get him though it. He is so tough, it's just amazing the things he has gone though, and he just gets through it, better than any adult would. Sometimes, to this day if I think about it to much, I will just start to cry, because it breaks my heart, I still hurt for him, knowing what he has gone through, what he has overcome. And he is here, he is amazing, sweet, funny, smart, loving, silly, funny, tough, curious, stubborn, strong willed, playful, imaginative, energetic and so much more. All the things a little boy should be. And he is here, he may be small but he is strong. And he is our 'little-big boy"
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