Thursday, January 16, 2014

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

Tuesday, January 14, 2014

Emotions are flying this week......

Having JA is not only physically draining, but emotionally draining too. Bella has a tough time expressing her feelings and often turns to anger to express herself. It is hard to listen to her talk mean to her sisters and equally hard to get the same treatment. Bella goes through these waves of emotions and we can always tell when she is in a lot of pain (but not telling us) because the tween attitude starts flying in full effect. I seriously feel like her eyes are going to roll out of her head this week...ha ha
Bella is usually such a sweet kid, sassy, but sweet. She is usually giggly, carefree, and full of life. When something is "off" everyone in the Anderson house knows it because we become the punching bag for her feelings.
So, we got to the bottom of the issue this week (after an emotional 2 days of drama mama moments and calling Bella out on treating a friend a little crappy). We found out that Bella is being made fun of at school for the way she walks (when in pain she drags her one leg and limps a bit). Both of her legs are turned inward and cause a slight limp from time to time too. Bella tries to cover it up but sometimes the pain/exhaustion get the better of her and she can't control it. Bella works hard at trying to look normal so that no one looks at her differently. Bella hates being the girl with JA.
Of course the mama bear in me wants to march up to the school and yell at these kids, but I know that won't solve our problem. So I contacted the school and have left it in their hands to help my daughter.

At the end of the day we all know that Bella really doesn't think we are ruining her life like she tells us and her sisters know she really doesn't hate them.........but in the moment it s so hard to hear such hateful feelings come from your child.

We are meeting with her JA doctor Thursday and I will be asking for counseling recommendations and hoping Bella will find comfort in talking to someone about her feelings.  I can't stand to see the emotional toll it I having on her....the physical aspect of JA is trying enough.

One thing that I keep thinking is that JA is forever and I can't allow her to feel so angry for the rest of her life. So, my goal is to find a happy medium for Bella or at least a way to cope with these feelings.

Also, find the perfect combination of medication............I'm not asking for to much am I????

Sunday, January 5, 2014

Fingers Crossed.....

The doctor decided to put Bella on Prednisone(steroid) pills to help reduce the inflammation from arthritis.  I have to say it is doing an AWESOME job!! She has very few pains and her mobility in her neck is back. Now, the tricky part is that they start her on 3 days of a high dose and gradually drop it down over a 2 week period to see what dosage level is most effective. I don't quite get the concept, but it seems as if it is common. There are also some crazy side effects to taking this medication; mood swings (tween hormones on top of it), weight gain, and a few other concerns. This is not a long term fix but we were looking for a quick fix until we get to the next appointment.

But Bella got to play in the snow and goof around like a 10 year old girl with minimal complaint this weekend....it was awesome. The mood swings are a little irritating but gave Dan & I quite the chuckle the other night. No really, she went from giggles to psycho in 2 seconds.........I laughed until I cried. I really thought her head was going to spin like in the movie Exorcist. Then 10 minutes later she was back to normal........fun ride.......NOT!!!

I do feel bad for her because these meds, tests, and appointments are enough to make anyone crazy. She goes through a lot and is so sad about not being able to play sports right now. She feels left out because she can't go play basketball and her other favorite sports with her friends. Until we can get her pain/inflammation under control, we can't do any high impact sports. The hidden danger most people don't think of is the long term effect it has on her joints & organs. Though most of us don't "see" the problem, inside her body is attacking itself and trying to ruin her joints and organs......that is our everyday reality.

When she hurts, swells, or looses mobility she is to rest the body to reduce long term damage.....it's hard keeping an active 10 year old down.

Hoping 2014 brings a cure!!!

Thursday, January 2, 2014

Good news to start the new year

We finally got all of Bella's biopsies back and we are happy to announce that they ALL came back negative. I don't think I have seen my daughter so excited over something in a long time. She jumped for joy and screamed at the top of her lungs....... her excitement brought me to tears. Of course, tears of happiness! She was so excited to tell her dad when he got home, it was cute! After months of never ending bad news, we welcomed this with open arms and celebrated the good news.
So, what does this all mean now? We move forward full force with treatments for her JA and psoriasis. We can be more aggressive with her treatments and focus on what we know she has. Last night she got her MTX injection, which she was not happy about. The injection hurt and she cried which is so heartbreaking.
Bella actually spent most of last night up in pain, I actually felt like I had a newborn baby. Finally after 2am she was able to get comfortable and fall asleep. She woke up in pain this AM, so she is home from school.
We put a message in to her doctor, so we wait to hear from her to see what we can do next. We did all the things the doctor said in the past to relieve her pain and nothing worked.
Her JA doctor is great and I know they will find some relief for her and make a plan.

Hope you all had a wonderful holiday!
Thanks for checking in!