About two months ago Myla started a new drug called CycloSporine. We switched her off Prograf, a drug she had been on for years because all the sudden it was becoming toxic in her body and stopped working. So far, we have yet to see CycloSporine working but that does not mean it won't, it just has not yet. This year alone, Myla has relapsed 5 times. That means that since October she has been on high dose steroids just about non-stop. Before that she had a few months break on and off from steroids but really it has been a hard 4 years of heavy drugs.
The thing with any drug is the side effects. Some are worse then others and most the time you have to take another drug or two just to help with the side effects of the first one. Well CycloSporine is a beast all its own. This drug has some of the same side effects of Prograf, some we will find out as we go, some we will not know until Myla is much older but the worst is the hair. We were told that she would have facial hair and gum overgrowth. What a understatement. Facial hair? No, how about full body hair. Myla at the age of 7 and only being on the drug two months has a lot of black leg hair, black arm hair, black back and neck hair, and full facial hair.
Being sick for years has really taken it's toll on Myla but I think the hair has been putting her over the edge. We are looking into getting her involved in chronic illness counselling. Her doctor thinks she is struggling with depression and just not coping well. I really don't blame her. I can not image how hard it is to be her right now.
Now if hearing this does not make you hate the disease, this will. Myla is actually doing "ok". There are sooooo many children that are REALLY sick. Children that are in the hospital for months at a time, going through kidney failure, kidney transplants, transplant rejection, and heart breaking... death. We need to find a cure for this disease!
Wednesday, July 17, 2013
There is such a helpless feeling with kidney disease. I watch my daughter sick and struggling and there is very little I can do. Until now! I have been working with an amazing organization called Nephcure.org for a few years now. Nephcure's whole goal is to find a cure for two kinds of kideny diseases, FSGS and Nephrotic Syndrome. My daughter has Nephrotic Syndrome but it could turn into FSGS at anytime with no warning (I pray this never happens).
Right now Nephcure is really big back East but not very strong in the West but not in Utah at all. So my goal has been to bring Nephcure to Utah. I would love to build a support system out here where kids can get together and parents can talk. Myla would love to find friends like her. I think she needs it.
With that said, I decided to host my first 5k and 10k race. Completely crazy since I have a new baby due in a week and a half. And well, I have never hosted one before or really anything like it.
This race really means a lot to Myla. She is so excited! Please help support her race and help find a cure for her horrible disease.
If you would like to sign up for the race. You can do it here. Or if you would like a make a donation to the race, click here. Any amount of money helps!