You are in my prayers…

October 21, 2009 at 9:25 pm

Good luck with everything! Please keep us posted! You are all in my prayers!

You are in my prayers

November 27, 2008 at 2:28 am

You and your family are in my prayers. It sounds like a worrying time, but it is great news that this is not a relapse. I see a lot in the kids with autoimmune disease what I call “a temporary setback” with infection or stresses like surgery. It seems like this is different than a relapse because it is short and can improve without change in treatment when the infection is better. It may be on a continuum with relapse, but the difference also seems that there is not severe ongoing damage that happens and that could build up. I think a badly infected toe could definitely send one’s immune system into overdrive. This is one point that I thought was stated wrong at the symposium. Someone said that they did not believe that there is non-specific effects of an infection (rev’ing up of the immune system). I do believe this. The immune system is not perfect and cytokines to stimulate the immune response to one thing will also affect other lymphocytes.

I also wanted to say that you are by no means a dummy. You know your child really, really well and you know something was wrong and he was not flourishing. Also you know a tremendous amount about these illnesses and what is important. A lot of doctors out there think that if one cannot detect weakness on a neurologic exam, it is not there. This causes a lot of people on this site to have ongoing damage because it is not severe–but persistent accumulation of damage still can make significant damage. You know I am not doctor bashing, I am just saying not to undersestimate what you know or the rightness of it.

Regarding your Mother-in-law. I wish for her peace and that she is surrounded by love and loved ones in this time. I also wanted to say that often pneumonias in lung cancer are due to blockage of the airway and collapse of part of the lung and this can cause fever–it does not always mean infection. People can get a secondary infection, though, so it can happen. If in your heart, you think she and Kevie should see each other to say good-bye, it may not have as much risk as just the word pneumonia sounds like. Think about and maybe ask Kevie if he would feel better to say goodbye (wearing a mask and maybe not even getting right next to her if she is coughing) or calling her on the phone if she is still okay enough to hear. There is just so much going on and there are ways that he is mature over his years, that somethings it can help both Grandma and child, especially a child who also fights a significant illness. You have a great heart and one that is very sensitive to Kevie, so follow your heart.