Ashley Update 4/27

Wednesday of last week (4/22), Ashley began her meds. Three days of high dose steroids, about a two hour process per day along with a single dose of Gamma Globulin on Thursday, about a 6 hour process. During treatment she watched the typical daytime TV game shows, noting she was pretty good at “Family Feud,” but was awful at “The Price Is Right.” She will continue on high dose steroids for three months, then will continue with some form of treatment for a minimum of two years. She got through that well, started to feel a little better, although still tired. She is still very weak and cannot even twist open a bottle. This is hard to think about since she has always been a strong athletic person. She has just totally lost her muscle mass.

Friday afternoon did bring great news though. They tested her blood and she responded well to the IV treatment. Her CPK ( Creatine Phosphokinase) level had dropped from 2600 to 800; about 200 is normal. CPK is an enzyme found mainly in the heart, brain and skeletal muscle. A high CPK level indicates serious muscle injury. At that level she obviously had some!

On Saturday she began oral meds (10 pills per day), so the IVs are behind us for now. She is taking Prednisone; Ranitidine to keep her from getting sick and some Calcium supplements since she is not a milk drinker. She had a good weekend, still hurting a little but that is to be expected. She is now trying to catch up on the homework she has... at least as much as she can stand... her arms still hurt when she uses then.

She will go back to see the doctor on Friday and they’ll test her CPK level again. Hopefully we will see more improvement and she won’t be hurting at all. She went to school this morning and we’ll see how she feels by the end of the day. She has about two weeks left. We are lucky the school year is almost over. It would have been more difficult to have gone through this early in the year. Summer will be here soon and homework will be one thing she won’t have to worry about. Oh, and her teachers have all been great in working with Ashley to get through her junior year!

It’s just hard to believe how quickly things can change. A month ago, who would have thought all this would be happening? But we are so thankful, as there are so many other children in Vanderbilt Children’s whose parents would give anything to hear slightest mention of a positive outcome. We should keep those families in our prayers, too.

I told a friend that God has allowed Ashley to have this and be healed from it because I firmly believe that one day when she is in the medical field she will be the one (when others may not know) to diagnose someone who has dermatomyositis since she knows the symptoms firsthand. She will be there to save that life.  

Thanks again to all of you for thinking of Ash.