How quickly things change
It's amazing to me how quickly I can change my mind. How quickly my energy can go from octane levels to mostly empty.
I was all ready to get going on some of these appointments for the kids Sam is late in getting his bone marrow biopsy done, his lung function tests done and another check up on the scarring on his retina. I was going to have that all set up for this week since it's potato harvest and they are out for school.
This weekend, I was going to work on Shelbie's stuff for our Seattle appointment.
None of that happened...no energy! Since I am the queen of denial...putting it off seems like a perfectly rational thing to do!
My friend, whose little girl has Dyskeratosis Congenita or at lease a clinical version of it, had a bone marrow biopsy nearly 3 months ago. She is not doing well at all. From what I have read, she hasn't really had a decent day since the transplant. Her organs are having such a hard time, I guess from the chemo regimens. It freaks me out.
I think that is why I am all of a sudden dragging my feet on the bone marrow biopsy. Sometimes, not knowing how things are progressing can be a blessing because you don't have to make hard choices. My friend had to make a hard choice. Her daughter's telomeres were getting dangerously short and that makes for a very tough transplant situation. Transplanting would give her a shot at a longer life, without it, she would surely die. They weren't given much time as the window for transplant success was closing. There wasn't a good option.
I like good options. I like clear cut answers. The thought of someday having to decide to transplant my kids makes me sick. I'm glad they are old enough to shoulder in the decision. Then, there is the part that they have no literature on the course of the disease since there are only three kids in the entire world with our mutation! My boys and one other young man. It's a lot to digest so I take it in little bite size pieces...like a fancy appetizer I stab with a toothpick.
The truth is, no matter what the future holds for my kids, They will live out their numbered days. Spencer said in a letter just a couple of weeks ago that he knows that the only reason he can get up every day and do his work is because he is being sustained by Heavenly Father. He knows he should be feeling much worse than he is. That is reassuring to me and that his work will get done despite what a bone marrow biopsy says. The same goes for Shelbie and Sam.
So, it all comes down to faith and hope. I have set Wednesday as my goal to have all our appointments set up for Sam. I will return and report!
I was all ready to get going on some of these appointments for the kids Sam is late in getting his bone marrow biopsy done, his lung function tests done and another check up on the scarring on his retina. I was going to have that all set up for this week since it's potato harvest and they are out for school.
This weekend, I was going to work on Shelbie's stuff for our Seattle appointment.
None of that happened...no energy! Since I am the queen of denial...putting it off seems like a perfectly rational thing to do!
My friend, whose little girl has Dyskeratosis Congenita or at lease a clinical version of it, had a bone marrow biopsy nearly 3 months ago. She is not doing well at all. From what I have read, she hasn't really had a decent day since the transplant. Her organs are having such a hard time, I guess from the chemo regimens. It freaks me out.
I think that is why I am all of a sudden dragging my feet on the bone marrow biopsy. Sometimes, not knowing how things are progressing can be a blessing because you don't have to make hard choices. My friend had to make a hard choice. Her daughter's telomeres were getting dangerously short and that makes for a very tough transplant situation. Transplanting would give her a shot at a longer life, without it, she would surely die. They weren't given much time as the window for transplant success was closing. There wasn't a good option.
I like good options. I like clear cut answers. The thought of someday having to decide to transplant my kids makes me sick. I'm glad they are old enough to shoulder in the decision. Then, there is the part that they have no literature on the course of the disease since there are only three kids in the entire world with our mutation! My boys and one other young man. It's a lot to digest so I take it in little bite size pieces...like a fancy appetizer I stab with a toothpick.
The truth is, no matter what the future holds for my kids, They will live out their numbered days. Spencer said in a letter just a couple of weeks ago that he knows that the only reason he can get up every day and do his work is because he is being sustained by Heavenly Father. He knows he should be feeling much worse than he is. That is reassuring to me and that his work will get done despite what a bone marrow biopsy says. The same goes for Shelbie and Sam.
So, it all comes down to faith and hope. I have set Wednesday as my goal to have all our appointments set up for Sam. I will return and report!
Comments
Post a Comment