So good to have her back :)

Can I just tell you how happy I am to have my HAPPY, FUN, LIFE LOVING, POSITIVE Decota back. It seemed like we were seeing less and less of that outgoing girl we knew as she withdrew further and further into her shell over the last year. There have been many issues that played into her retreat, and any teenager would have had some sorrow and dark days because of them, but I know that she was struggling just to deal with life at times simply because she just plain old felt horrible. It is so much harder to be able to handle anything when you are fighting either being nauseous and throwing up, massive headaches, or being in a daze and tired everyday of the week. Decota's medicines over the last year have just really taken a toll on her poor little body. Things that she would normally be able to just brush off became mountains she didn't know if she could climb. She felt so sick that she would fight her way through school, and then come home and retreat to her room where she would just pull her covers over her head and hide. Her zest for life was slipping away and my social butterfly became more and more content to be alone. It finally got to the point where Decota was throwing up before she took her meds and could not get them down. We were back to spending hours trying to get the meds down, if we could at all. She was miserable, I was miserable. I was not sure what we were going to do, but I knew we could not continue down this path any longer. I had told her rheumatologist over and over that she was not tolerating the medicine well, but they basically felt like those were things you just had to live with when you were taking chemo. They tried to make it better by prescribing nausea meds, but they just brought on whole new problems of their own. Finally I felt like we had had enough, and I didn't know what to do anymore. We walked into her eye specialist and Decota and I told him our concerns- and what do you know, he did something about it.

On April 9th, after over 4 years of being on Methotrexate (8 if you count the other years she was on it), Dr. Calannan took her off of it and started her on Cellcept. Instant miracle in our home. Within a week the nausea stopped and Decota quickly started to reblossom into herself again. Her confidence came back, her smile reappeared, she started hanging out in the living room with family again, she wanted to be with friends again, and life was once again a beautiful thing. There has been some underlying worry that the medicine would not work, and that her health might start to regress, but for the most part we have not dwelt on that.

The days seem to continue to get better and better, but today was a great day! We went to Scottish Rite today for her first visit since the medicine change and everything looked GREAT! Not only that, but she no longer has to come in for blood work between the quarterly checkups, and only has to do it on appointment days. That may not seem like a lot, but it is 4 less trips to the hospital a year, and that much closer to having a normal teenage life. She was in such a spectacular mood all day. We celebrated and did a little shopping after the hospital visit. We had a great lunch. We joked around, danced goofy with each other, and just had fun. It really was wonderful.

And all day I just kept thinking, "There you are Decota! I have missed you so much. I have wished for your return so many times. I have prayed about the return of these moments. I have longed to hear the freeness in you laugh. I have waited for that weight to be lifted off your a shoulders that I just could not manage to lift. I have wished to see that love of life back in your eyes. I have missed our 2 way conversations. I knew you would come back, and I would have waited as long as it took, but I am so glad to see your return now. And just like always, your smile still lights up the room- but now your matching eyes light up the world! Welcome back!"