Kirk wanted me to post an update on Myla for our friends and family that keep asking.
So here is a quick update.
Myla started Cytoxin (chemo) last Saturday. It took a lot longer than we thought for her to start since we could not get her into remission. Most of this week she has been acting soooo crazy almost like she is on speed. She has been doing laps around the house and bouncing off the walls. Not at all what we expected. I talked to a friend that her husband and mom both went on chemo and they both had crazy energy at first also. From what I understand is that it takes a few weeks to build up in their system before they get the real side effects of the drug.
So currently Myla is still on high dose steroids and Cytoxin. Each week I will lower her dose of steroids but they will keep her on a low dose while she is on Cytoxin. They plan to have her on the drugs for three months and then take her off and see if she will stay in remission.
If she does not stay in remission then we have some choices to make. There are three different drugs for us to try next. The first one is really high dose of steroids by IV three days a week. There is a lot of long term side effects from steroids and long term damage. The other two are drugs that will have to taken until she magically grows of this (so for many years). Both are known to case kidney damage and other long term problems. What a great choice. What would you chose?
So for now we are praying that these meds will work and that she can stay in remission for at least six months.
On another note because Myla has been taking meds for the past nine months it has caused a lot of teeth damage. For kids her age they give meds in liquid form FULL of sugar so the kids will take it. No one ever told me about how it could effect her teeth. Well now she has a mouth full of cavities. Nice! Because there was so many we had to go to a pediatric dental specialist. Now on Monday she has to go and get all her cavities fixed but to do so they have to put her out. Everything should be fine and the anesthesiologist is aware of her medical concerns and all the drugs she is on. I'm still a little nervous about them putting her out and praying that it will not cause her to relapse from all the stress it will put her little body under.
With all things considered we are doing really well. Myla is a strong little girl and never really complains. We are grateful for such wonderful family and friends that are so supportive to us.
Sorry I guess it did not turn out so quick....