Sunday, February 14, 2010

Myla

It has been eight months since Myla was diagnosed with Nephrotic Syndrome. She has been on Steroids for the whole time all but two weeks. She is considered steroid dependent, which means that as soon as we start to taper down her steroids she relapses. This time around is no different. Myla just relapsed on Friday. Kirk and I spent the day crying because we knew what that meant.

Since steroids are no longer working for her they are switching her to low dose steroids and Cytoxan which is a chemotherapy drug.

When I was talking to her doctor in Friday she said well some parents want to give steroids one more try. At this point they know steroids, they know the side effects by now and they are scared of the unknown. So she gave us the option of trying steroids one more time and told us the long term effects of her being on steroids this long. Or we could try Cytoxan and listed all the immediate side effects along with all the long term side effects. It is so hard to decide what to give her and knowing what ever our choice is there are so many side effects that will affect her.

We decided to give Cytoxan a try since the steroids are not keeping her from relapsing. As with steroids it will affect her immune system but cytoxan lowers her white and red blood cells which increase her risk for infection and also she has to continue to stay away from anyone that is sick. Let me tell you how hard it is to stay in the house all the time. I do not mind so much but I know the girls need to get out more and play with others kids.

The other most common side effects are stomach pain, nausea, vomiting, and hair loss.

We are just praying that her body will respond well with the Cytoxan and hope that she will stay in remission longer than she is now. I would LOVE to have her off all drugs and give her body a rest for at least a few months.

4 comments:

Katie said...

OH Tiffany....so hard. I know as a parent its so hard to see your child suffering in any way and trying your best and not seeing the results you want. I can only imagine how stressful this must be. I'm so sorry. I don't know what else to say.

You and your family are amazing...I look up to you in so many ways. I know you can get through this relying on the Lord. Little Myla is such an amazing girl and such a fighter already at such a young age.

We'll keep you in our prayers.

We love you!

Lisa said...

I am so sorry. This must be such a hard thing for you to go through on top of preparing for a new baby. Don't hesitate to ask for help! I'm sure we would all understand if you called for a meal to be brought in or help around the house. Your situation more than warrants it.

Nikki said...

Oh my little Myla. I'm sorry you guys are going through this. Perhaps we could do a ward fast, like we did for Kylee H. We'll keep praying for her! Hang in there and of course...ASK FOR HELP!!

howellblog said...

I am so sorry Tiffany. What a bad time for you! Hang in there. You are not alone... By the way, I told Kirk how cute she was Sunday. I ended up helping her in the potty. While waiting for her outside the stall, she was singing at the top of her lungs some potty song. SO CUTE! Her darling smile and lit up eyes made my day! We'll keep her in our prayers.

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