Today's appointment brought on the tears....

It's so hard to watch your child cry, especially when it is something you have very little control over. JA is that thing that we have little control over at this point. We are working with the doctors to try and find that plateau for Bella where we don't have so many up and down days. It is tricky to find the right combination of medicines and therapies. Bella has done very little crying since she was diagnosed because she is a rock when it comes to expressing her emotions. She would rather let everyone else think she is "good" than to admit to being sad or in pain. It was almost a relief to finally see Bella let go of those emotions today. So what made Bella cry?
The doctor told her she had to go back to physical therapy 2-3 days a week. She has to increase her steroids, and we will be considering adding another injection (Enbrel) in February. She will have 2 injections and the usual medications to help counter act the side effects of chemo. The doctor also wants her to journal her symptoms each day. Bella really wants a quick fix and unfortunately with JA you have to go through many trial and errors before you get to that "GREAT" place. It's hard to see her disappointed and hard to hear her say that she feels like nothing works and she so tired of hurting. But this afternoon she had great mobility with the doctor, which made the doctor to believe that she may have her worst symptoms in the A.M. and after being active (VERY TRUE). So, our next appointment will be first thing in the morning so that she can see how stiff she is when she starts her days.
So, I will research the new injection the doctor wants to start and see if it is a good fit for Bella. We will start at a new PT place next week (her new insurance is not accepted at the old PT office) and keeping fighting towards a day with no pain.

Bella was excited to get to visit with her friend Emilia today, it was so nice to listen to them giggle at the silliest things. Those are the moments that you realize that these girls are still just 10 year old kids that love to gossip, laugh, and play but have been given a tough medical challenge. I know that they have become strong girls, but I often wonder why it had to be this way. I know that they both will never forget their 5th grade year because it brought on the most challenging times, but I also think it made their friendship stronger and even more special. I know Bella can't wait to have Emilia back in school, but not a much as Emilia wants to be back. Every time we leave a visit with Emilia, Bella has a cute little smile on her face and she loves to share her favorite moments with me. So, thank you for brightening her spirits today, Emilia! We love you little mama and we are so excited that you are almost out of your brace and walking around more!!!! xoxox