DeeEast
11-09-2009, 12:45 AM
I've googled and find message boards for parents of children who have been diagnosed with cancer. Frankly, I would like to read what they have to say but the rules say that they are only for parents of children with cancer and in addition to feeling like I would be jinxing things, I don't want to intrude.
But there has to be some on-line support group for people in our situation. If not, someone should create one. Its been almost two months and we are still in limbo. I couldn't wait until Monday and got DS's blood tested on Friday. The results are still the same (not good). I have done a lot more reading and have a slightly better understanding of the fact that they are waiting for the reticulocyte count to go up, which not only has it not gone up, it has actually gone down since two months ago when this all began.
So I am reading about pediatric myelodysplastic syndrome and waiting until the next blood test, either this Tuesday or Wednesday. I finally bit the bullet and went back to church today and did exactly what I feared I would do. I sat there and cried the entire time, feeling so vulnerable and so crazy. I can only equate the feeling of crying like that in public in this situation (we don't even know if its the worst possible case scenario) to being at a crowded basketball game and having to use a toilet that is in the middle of the basketball court. UGH. I just HATE it!
But the people in our church have been so supportive that I hate to not attend and then keep emailing and calling, asking for prayers, especially when we can attend, but I am just a basket case. Oh well, now everyone will now understand why I don't attend anymore?
But there has to be some on-line support group for people in our situation. If not, someone should create one. Its been almost two months and we are still in limbo. I couldn't wait until Monday and got DS's blood tested on Friday. The results are still the same (not good). I have done a lot more reading and have a slightly better understanding of the fact that they are waiting for the reticulocyte count to go up, which not only has it not gone up, it has actually gone down since two months ago when this all began.
So I am reading about pediatric myelodysplastic syndrome and waiting until the next blood test, either this Tuesday or Wednesday. I finally bit the bullet and went back to church today and did exactly what I feared I would do. I sat there and cried the entire time, feeling so vulnerable and so crazy. I can only equate the feeling of crying like that in public in this situation (we don't even know if its the worst possible case scenario) to being at a crowded basketball game and having to use a toilet that is in the middle of the basketball court. UGH. I just HATE it!
But the people in our church have been so supportive that I hate to not attend and then keep emailing and calling, asking for prayers, especially when we can attend, but I am just a basket case. Oh well, now everyone will now understand why I don't attend anymore?