Immunocompromised 1/22/19

I have spent many hours and late nights reading stories and blogs of others’ struggling with lupus, mostly adults and older teens. At times this has become very discouraging to read how so many people are suffering and do not have the best quality of life. Scarlett is currently on mycophenolate which suppresses her immune system and keeps it from overreacting and attacking itself. The mycophenolate replaced her cyclophosphamide chemotherapy. There are many people with lupus that require cyclophosphamide for an even longer period than Scarlett to control their lupus. Scarlett had six rounds. It seems that any and all germs that she is exposed to she will get. She had pneumonia at the end of December which required 10 days of antibiotics then a double ear infection this month which also required another 10 days of antibiotics and now she has another upper respiratory infection which is causing her to have a lot of drainage out of her eyes. One of the biggest threats to lupus sufferers is infection and sadly many with lupus will die from infection complications. With four children it seems almost impossible to keep them from sharing germs even though I regularly use bleach to sanitize surfaces in our home. Our family is affectionate, we hug and kiss each other and I don’t ever want to tell my kids not to. I have started to tell them no kisses on the mouth or face this respiratory season. I just want Scarlett to be healthy. I am already starting to worry about Scarlett starting preschool this fall. Most of the stories I’ve read about younger children with lupus is that a good majority of them are home schooled due to them missing too much school and the exposure to others. I do not want Scarlett to be home schooled. Even before she got sick she always said how she wanted to ride the bus with her big sister Stella and when she was in the intensive care unit I clung to the hope that one day she would get on that bus and ride to school with her sister like any other normal child. I want her to have the same experiences as any other child, but I am currently struggling with the reality of how fragile she is. We are still working on this delicate balance of letting her have normal experiences, but staying away from those that may be sick. I really do hope she can ride the bus this fall to preschool with her big sister. There are so many every day experiences that I have taken for granted in the past. Every healthy day with Scarlett is a gift. She will always be my miracle baby even when she’s sick. She has already proven to us that she’s a determined little fighter.

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