The appointment: By Bella

     Today at my appointment my doctor told me bad news, that I have to change my medicine. I have to get another shot every week, so now I will have two shots each week. The new medicine is called Enbrel and it could be the medicine that puts me into remission. The good news is the doctor is going start to take me off steroids. That will make my puffy face go away. YEAH!! But it will take two months until I am off steroids.
The doctor also said that the rash that I keep getting on my face could be from Lupus which I have no idea what that is. But the doctor is going to do tests and find out.
I have to get a bunch of tests done in the next few days so that I can start my new medicine.
Today I am really tired and my fingers hurt really bad. My doctor said my fingers and toes were swollen today. She also said my face was really swollen.

    Today two of my friends had important doctor appointments and I am waiting to find out if they got good news. Stay strong Emilia and Noelle!

 

Tomorrow I am going to be n the talent show! I am so excited because teachers from my school are doing the talent show! Last year they did the talent show also. The teachers asked a bunch of teachers to do the talent show. I think last year they had like 14 teachers do it! The exciting part about them doing the talent show is if any of my teachers are doing it and what teachers are doing it! It would be really funny to see my teacher from this year doing the talent show because I could never imagine my teacher doing the talent show with a bunch of girl teachers in short dresses and short skirts. LOL!!!!!

Any way what I am doing for the talent show is I am dancing in 2 acts. My first one that I will be doing is dancing with lemmie sticks! My friend's mom taught and made the whole entire routine. I love my whole entire routine. I think it looks really cool and sounds really cool! My second thing that I am doing for the talent show is dancing with the fifth graders! If you think I am dancing with the all of the fifth graders than you are crazy! I am dancing with the fifth graders that want to dance in the talent show! I also love the dance that I am dancing to with the fifth graders! I really love the song that we are dancing to! If you want to see the talent show it is on 2-21-2014. there is one every year but not on the same days. But next year I will not be able to do the talent show because... I AM GOING TO SIXTH GRADE!!!!!

 

 

THE END

Bella is struggling.......

Juggling life with a kid that has a chronic illness has become quite a task for us. There are so many ups and downs and you are never prepared. Just as you think you have it all figured out, there is a wrench thrown into the plans. Just as I think Bella is doing great emotionally, we get knocked down by a moment of anger/sadness.
As many of you know, Bella is one tough cookie. She doesn't like to show her pain or let anyone know she is upset...EVER! At home we see her frustration/sadness via angry out lashes.
Usually aimed at me, which is really hard some days. I don't allow her to mistreat me because she has Juvenile Arthritis and I stand strong against her angry fits. But when she is done having her meltdown I know we need to talk because this is a sign of frustration from Bella.
If you are on Facebook, you have seen my posts about Bella being sick for the past 2 weeks on and off. It is hard because if she is sick they have to take her off of her MTX injection and that is the medicine that helps control the pain/inflammation. The injections already weaken her immune system so we can't give it to her until she is back to 100% health. So, not only is she feeling sick, now she is back in pain ALL the time again. Plus, her psoriasis starts to flare up as well.
I was waiting for Bella to notice her "puffy" face (her words), that Dan and I noticed a few weeks ago.

Left is current/Right is 6 months ago

It is one of the sad side effects of using steroids to help treat her JA symptoms, facial swelling. Bella is what we call a fashion diva because she loves to dress up, do her hair, and look cute all the time. I knew it was a matter of time before she noticed this change. Boy, did she notice on one of the worst days ever. Her swelling made her lips look(amazing in my book) and her face was very full and flush. Let's just say it did not go over well when she said it out loud and made it a realization.
Last night she totally freaked, which meant Bella verbally went off on me. I should be flattered because kids only mistreat the ones they really love because they know they will keep loving them.
It was a mountain of emotions charging through our house last night. Sorry to anyone walking through our town, you probably heard us yelling at each other...ha ha!!
So on Thursday when we meet with her Rheumatologist we will discuss changing the medicine(which was already brought to the table last visit) and hopefully start her on another injection called Enbrel. Enbrel is supposed to be an amazing medicine for people with arthritis and Bella is finally accepting this path (she refused the idea at the last appt). Keeping my fingers crossed that we get her on the right medicine, therapy, and diet to help get her into remission.

Rough couple of weeks for Bella but some great moments too!

We haven't posted much because I feel like a broken record when it comes to Bella's symptoms and weekly issues. I don't want to be "Debbie Downer" because it's just not my style and we are trying to find all the positives for Bella right now. So we are focusing less on what is wrong and proclaiming the positive achievements in her health care. BUT as anyone with a child with an ongoing medical issues knows that sometimes it is hard to not feel overwhelmed and defeated some days.

This week Bella came down with whatever her Dad had last week(fever, sore throat, exhaustion). Even though we tried to keep Dad away from her and sanitized everything, it still wasn't enough.  It really has shown us that her immune system is so much weaker while on the MTX injections and we need to be as cautious as possible. We do know that the chemo has dropped her white blood count a bit but not to alarming levels. Since she is sick the doctor has taken her off her MTX injection until she is 100%. This is the tough part because this is the medicine that helps reduce her pain/symptoms and now we can't give it to her.  Once we can start again it will be like starting all over from square one. BUT, Bella was quite excited to not have to be stabbed this week. :)

Bella is having many mood swings that are giving us whip lash (the doctor warned us about this steroid side effect) BUT the steroids are doing a great job at keeping most of her inflammation down and her rashes are minimal. So, we think the positives are out weighing the negatives in this situation, so we will ride it out a bit longer and ask the doctor at her visit in a couple of weeks.

Bella is back in physical therapy 2 days a week, which she hated the idea of going back. BUT she loves the new physical therapist because he is funny and makes the work out fun. So we are pretty excited for her. The only downside was this place does not do water therapy which is a great way to work out the joints and not cause strain. So, we decided to join the local YMCA gain and do our own water therapy with Bella, boy is the Y expensive!!!  Plus, Bella and her friend Emilia are going to take swim classes together at the Y as soon as she is recovered from her surgery and battle with cancer (almost over YEAH).

Bella has her good days and bad, but we are starting to get use to the ups and downs. We are finally at a point where we are accepting the "new normal". It's not the life I would want for my daughter (or anyone for that matter) but we are finding the positives as they come and holding on to them tightly!

SOME AWESOME NEWS:
~Bella got an awesome report card, even with missing 10 days of school, leaving early over a dozen times, and coming in late a hand full of time (pretty freaking amazing if you ask this proud mama)!!!
~Bella also got her bronze award in Girl Scouts for her successful Food Drive (over 1600 pound of food collected)!!
~Bella is going to be in the school talent show and dance to the song Brave with her fellow classmates(was asked to hold  sign at the end bc she was one of the kids going through a tough time this year) and doing another number with some of her fellow cheerleaders. If you are free the night of February 21st come see her perform at New Cumberland Middle school at 7pm.

We will have another exciting announcement soon too, so keep watching!!!!

Have a great week and keep warm!!!

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

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????

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!!!

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!