poggie Posted December 10, 2003 Share Posted December 10, 2003 In addition to dealing with the issues of cancer, we (my husband and I) also have a daughter with a very rare, progressive disease. As a result, she has MANY medical problems as well as being non-verbal and delayed in all areas ( cognitive and physical). We are constantly going somewhere (therapy, theraputic horseback riding, dealing with school issues, doctor appointments...) with her. We also live daily knowing that there is no cure for her disease and that it really is a miracle that she is still alive (until recently children with Alpha Mannosidosis had a life expectancy of 5 years) . Now, all of this happening with my inlaws it is getting us to our breaking point. Everyone calls us to cry on our shoulders but I'm not sure that we can take much more. They don't understand that we may put up a strong front but it's just that, a front. We have been living with heart-wrenching pain for 9 years since our daughter's problems started. I don't want to sound harsh or uncaring because I am not. I love my mother in law as if she were my own mom. I just know that somehow, we need to keep our sanity also for our girls. I would appreciate any advice that is offered. Here's a cut/paste of my post on the StageIII/IV board about what's going on. My mother in law has been diagnosed with NSCLC Stage IIIB. Since the thorasic surgeon said that she is no longer a canidate for surgery, we met with the oncologists last week to decide a course of treatment. She decided to enroll in a clinical trial being done at the U of Chicago with the NCI. Part of this trial required that she have a bone scan. (She's already had two CTs and a PET scan with in the last 6 weeks). They told us that this was just a matter of procedure and we shouldn't expect anything to be found. The doctors seemed pretty possitive. The test was last Friday and yesterday, the nurse called and said that there are spots on her leg and spine that they don't like. She had to go this AM to have X-rays done. The nurse said that it could be arthritis or tumors but they won't know until after the X-rays. With all of the other tests that she's had done, shouldn't someone be able to tell cancer from arthritis? It's just so frustrating! She was scheduled to meet with the radiation oncologist today but they cancelled that appointment. If the X-rays show that it's not cancer, she will see him tomorrow. We don't know what the next step will be if it does show cancer. I guess that I'm thinking the worst since she doesn't have any pain anywhere! If it were arthritis, I would expect that she would be in some pain. Now, we have no idea what if anything they will be able to do to treat her. Up until this point, she has had a possitive attitude. It's getting hard to stay focused and possitive. It seems that with every test, we get more bad news. This has been going on since Sept when her chest X-ray came back abnormal. Things were going so slowly with her doctors in the suburbs that she switched to U of Chicago last month. Where do we go from here? Mother in law~~71yo non-smoker diagnosed Nov'03 NSCLC Stage IIIB Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.