JA Anniversary: 2 years later

So yesterday was Bella's 2 year anniversary of being diagnosed with JA. I'd be lying if I said it was an easy journey, because it has been the biggest roller coaster ride of my life. Bella's summer two years ago was spent practicing for the upcoming basketball season and taking tumbling lessons. All that came to a quick halt when she was diagnosed. Instead our first week of school was spent going to doctor appointment, getting blood work done, and setting a plan to get Bella's progressing disease under control. It has been two years full of educating ourselves and learning so much from her doctors. We have always kept an open line of communication open with Bella and we like her to be able to have input on her treatment choices (where appropriate). The last 6 months have been a struggle for Bella and she finally realized that her JA is here to stay. I'm not sure what finally made the reality set it, but Bella is talking more about her disease to me and her close friends. But hearing how defeated your daughter feels is heart breaking. Bella has openly told us that she feels like she will never feel pain free, she feels like she will always be different, she feels like no one really understands what she is going through (except for her other JA friends), she is frustrated because she doesn't feel good most of the time, and she is upset that can't play basketball and do gymnastics. Yesterday she asked me to proof read an essay for school and she wrote openly about her disease. A piece of my heart broke reading her words. Everyday I wish I could take this disease from Bella. I always tell her that the challenges in life make us stronger and one day she will she will do great things. I feel like her desire to be a doctor became stronger after she was diagnosed, so that may be her silver lining. On the medical side of things, Bella will be seeing a new doctor to help get her rashes under control. She is still having issues with her knee giving out on her daily. So she is also seeing an Ortho surgeon. So we have been pushing her to wear her knee braces everyday to help keep her stable (the struggle that comes along with getting a pre-teen to wear braces to school is awful!). She still is getting her monthly infusions and they help for 2-3 weeks and then it wears off. The doctor has decided to put her on additional steroids to help keep her symptoms at bay. Steroids come with all the things Bella hates; weight gain, trouble sleeping, and anger. But they help her feel better, so we just chug along and make the best of it. She still does weekly chemo injections and takes 9 pills a day. Though Bella doesn't feel 100%, this regimen has made improvements in her health. Some weeks she does feel awesome and we love seeing the old goofy Bella running around. We have had to cancel plans because she was having too much pain, but we always tried to find something just as fun to do with her friends. Bella had a great summer and is enjoying the first days of school. I can't believe that she is in 7th grade!!! Bella has set her goals higher this year because she wants to make Junior National Honor Society. I told her if she gets Distinguished honors each marking period like last year, she will have no worries! Thanks for checking in! HERE IS A PICTURE OF BELLA ON HER FIRST DAY OF PRESCHOOL AND 7TH GRADE!