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!

Waiting is so hard!!!!

Last week Bella had her procedure at Hershey's Children's Hospital and they took biopsies to test for a few things. Let me tell you, I am not a very patient person. It seems like it has been months...ha ha
Every time my phone rings I rush to see if it is the doctor calling...........not yet.
No matter what the results are we will be pursuing the next step in her treatment. We need to take another step because the MTX injections are not working. They are good for slowing down the progression of the disease but do not stop the pain and inflammation. Of course the MTX comes with it's own list of side effects that vary in severity each week. The fatigue is Bella's biggest complaint from the MTX. She also has slight nauseous and the taste of food changes. She has a bit of hair thinning, but I told her that no one but her and I would ever notice. I have never seen my daughter sleep as much as she does, she is the first to bed and the last one out of bed. Given the chance, she sleeps in between or chills out on her bed reading or playing on her Ipod. It's weird to see her lounging so much because she was so active and usually following me around trying to listen to every phone conversation or offering to help make dinner  ( I lost my little shadow).

Her last round of blood work showed that her WBC is low, so we have to be careful not to expose her (unknowingly) to people with contagious diseases. So, if you come to visit we will ask you to use hand sanitizer. If you are sick, please don't come visit. If Bella gets sick we will have to stop her treatments and it means that her JA symptoms will be worse. I know it is hard to keep kids from getting sick, but we sure can do our best to try. There are a few contagious diseases that will be really bad for Bella to get, like chicken pox or shingles (just to name a few). Two of her other counts came back high as well. At her next appointment we will discuss what steps to take next to get these counts under control. She did loose 3 pounds in one week, so they will keep an eye on that as well....but I'm sure the holiday snacks helped that...he he

Lately her biggest pain complaint has been her knee and ankles. Her newest joint pain is in her wrists, it keeps swelling and turning bright red. She has been limping a lot more and dragging her one leg, which we have noticed on and off for about 3 years, but recently we see it happening more often.

We did have a wonderful Christmas. We got to visit our family in Delaware where Bella grew foundly attached to the newest addition to our family, SJ. Bella snuggled that baby and took care of him every moment she could, it was adorable!!!!! She got to hang out with all of our cousins and my Aunt & Uncle. It was so nice! We got to spend time with friends when we came home and of course got spoiled by Grammy & Pappy on Christmas day!

She got her normal round of MTX injection last night and now she is feeling exhausted today. We will be having another Christmas celebration tonight and we leave for NY tomorrow to visit Grandma & Grandpa. Daddy bought all of us tickets to see the Christmas Spectacular(Rockettes) in NYC on Sunday. Let me tell you, we can not wait!!! Hoping Bella is feeling good that day and is able to twirl around the city a bit with us. If not, we'll be doing a lot of piggy back riding with Bella.

Hope you all had a wonderful holiday just as we did in the Anderson house. As we bring in the new year, we are hoping for a cure for JA or at least some relief for Bella's symptoms!!! But most of all, I hoping my phone rings soon with the results to Bella's tests...he he

It's been a busy 2 weeks....

Over the past couple of weeks we have been busy starting Bella's 5th annual food drive, shopping for Christmas, and attending holiday events. Bella went to her first JA Holiday party and got to hang out with other kids with JA. We ate a yummy lunch, sang Christmas songs, learned about JA, and did crafts. Unfortunately we had to leave early because Bella was not feeling well from her last dose of MTX(chemo) and was fatigued. But we were glad to go and meet new JA families. The Arthritis Foundation is a wonderful organization and has been a great support system for our family.

I had the 504 disability hearing at Bella's school this past week. It was emotional but we got everything needed to help Bella be successful at school for many years to come. The ladies from the school district were so kind and helpful in their suggestions for additional accommodations.

Then this past Saturday we had the Jingle Bella Run that benefits the Arthritis Foundation. Dan formed a team and we called it Team Bella Mia. Val, her 2 friends, Mitch, Mike, Anthony, and Duane formed the team. Thank you to you all for supporting Bella....it means a lot. We also had a bunch of friends on the side lines with Bella, Chloe, and I. Thank you to everyone who came out to support Bella. I surprised Bella and all the team members with Team Bella Mia drawstring bags. What made them extra special was the design was a picture that her little sister drew in school. So Bella & Chloe were so excited! It was such a fun morning, snow and all! THANK YOU, THANK YOU, THANK YOU!!!!!!

Last night we began to prep Bella for her procedure on Monday. Poor kid is hating life right now because of the bowel prep. Anyone that has gone through this knows what I mean. Bella and the bathroom will become best friends later today....he he POOR KID!

I'm asking for lots of prayers and good vibes tomorrow as we venture off to Hershey Children's Hospital for Bella's procedure. They said she will be under for about an hour and will need to be monitored for 24 hours afterwards. Bella is quite nervous and actually asked me what happens if they can't wake her back up. I assured her that would not be a problem and she shouldn't worry. 
Hopefully we get the results quickly and we can move forward with the next round of treatments.......which we hope leads to a REMISSION.                

Holidays equal the perfect distraction! Back to reality this week.

I have to say that the past week and a half has been a breath of fresh air for our family. The time off school and visits with family and friends over the holidays was the perfect distraction for ALL of us. Bella was feeling okay and had no HUGE complaints until this past Saturday night when she woke me up in the middle of the night with ankle pain. If you have a child with JA or an auto immune disease you know that they have pain/side effects everyday but get use to dealing with most of it. Which is why I find my daughter to be strong in ways I could never image. But as my one friend said, "You never know how strong you are until strong is the only choice." Let me tell you, it is so true. Bella and our family has had to really step up and take on changes and obstacles we were never ready for or expected. Yesterday I normally would have planned a fun activity day for all the girls but we had to spend the day at the hospital while her sisters stayed at home watching movies on their last day of school vacation. I was just telling a friend the other night that I thought we were cursed with this stuff with Bella. It has truly been so tough to deal with, I know it could be worse, but let me tell you some days I feel like throwing in the towel. I try to believe that we are only given what we can truly handle in life. I still ask everyday, "Why Bella?" The reason I feel she was cursed is because she loves gymnastics and is insanely flexible but now has a disease that is attacking the joints that allow her to participate in gymnastics/cheerleading. She is double jointed and can hyper extend her joints too. But if she continues to participate in what she loves, it sets her up for disaster in the future......if that isn't a curse I don't know what else is? To avoid surgery and the possibility of a life in a wheel chair we have stopped gymnastics and do cheerleading with restrictions. I see the heartache in her eyes when her friends are doing the things she loves, it's hard. When her friends started basketball this season and she couldn't because they can't get her JA under control, I watched her heart break again.


Last week Bella developed a new rash, which is a part of the JA and the doctors are monitoring it. She also had started to have pain in a new area of her body, chest. We learned that you can have arthritis in the cartilage that connects the breast and rib bones, which is called costochondritis. We also had Bella start journaling about her JA last week, that way we can keep track of her symptoms. She is keeping a log of pain, symptoms, and new changes in her journal. That way she doesn't have to talk about it all the time because she hates to talk about it.

To my surprise Monday morning on our way to Hershey Medical Center to get tests done, her Rheumatologist called to check in on Bella (reminds me how AWESOME her doctor is)and let us know of changes she wants to make. They want to add another medicine to the mix that helps reduce side effects from the chemo drug and wanted to get Bella in to see a GI specialist sooner than later. Another part of JA is the damage it does to the GI system, so we also had a consult with a GI doctor yesterday afternoon in Hershey (they seriously got us in the same day they suggested a visit, AMAZING). Bella is now scheduled for Upper Endoscopy and colonoscopy for the 19th of December. Bella is quite nervous about being put under anesthesia because she is afraid they won't be able to wake her back up. I assured her that this is a common procedure and she will be fine. The doctors are testing her for Chrone's Disease and Inflammatory bowel disease, both are common with kids with JA. We are nervous and anxious all at the same time. The sooner we get answers, the sooner we can plan our next round of treatment.....all of this is to work towards remission.

We thought we had escaped most of the side effects of the chemo injections until yesterday. When Bella informed the doctor of her mouth hurting and we found out that she is developing sores in her mouth(common side effect) and her hair is thinning. Not a happy 10 year old yesterday.

This week we have a total of 6 appointments for Bella and it will keep us quite busy. We are also preparing for the Christmas holiday by decorating our house, baking cookies, and wrapping gifts. Of course Bella has her list for Santa which includes the wish for a laptop or Kindle Fire, clothes, shoes, board games, hair dryer, gift cards, and jewelry. All the typical pre-teen wants.

We will have lots of updates over the next few weeks as we plow through the upcoming pile of appointments.  Hope you all had a wonderful Thanksgiving holiday, the Anderson family did!!

Stylish gown

Beach visit with her sisters

Santa visit at the beach

First round of tests

A visit with her friend Emilia between appointments

Next round of tests to begin soon.........

It feels like no improvement is being made in Bella with the change in medicine. I know it often takes time but it stinks to watch my daughter complain of pain and discomfort so much. I hate seeing her so tired and cranky. Those moments when I see her giggling and laughing with her friends make me feel like things are changing.....but at the end of the day we still get the same complaints from Bella (now with a couple new issues). Anyone that has a child with an auto immune disease or any type of chronic illness knows how exhausting it is for their child and the entire family. I just wish we could run away from it and have a break, even for one day. All I ask for is one day where I/we don't worry, have to give medicine, research, and fight with the insurance. I feel like my close friends now are the nurses at Hershey Medical Center because I talk to them on a daily basis.....ha ha

This week Bella has a few new complaints to add to the list, because we don't have enough going on already! Sunday night she started to complain of chest pains, we thought it must be acid reflux(common side effect of a couple of her meds). We gave her tums and sent her to bed. The next morning same complaint. All along she has been complaining of stomach aches/pains (she always had stomach issues). After 4 days of the complaint I contacted the doctor and they have actually decided to make some more changes. First, the doctor is putting in a call to the Gastro doctors at Hershey trying to get Bella in to their office sooner than later because she suspects that Bella has Chrone's Disease or Inflammatory Bowel Disease. Which both of these are common with children that have JA. They will be doing a full panel of tests ranging from blood work to colonoscopy. It is very common for children with JA to get overlapping auto immune diseases, which makes it quite tricky for the doctors. Many of them require the same medicines and treatments, but not always.
So they are taking her off of the Naproxyn for now, just in case it is causing stomach upset. Which now drops us down to 2 pills a day, pretty exciting. BUT, Monday we are to call back and discuss putting her on Prednisone steroids to help with some of the issues she is having. The doctor thinks she may also have Costochondritis. Costochondritis is inflammation of the cartilage that attaches the ribs to the breast bone. Also, another condition common in patients with JA. I never knew there were so many things that could get inflamed in one person's body.
The doctor wants to make one change at a time to see the outcome of each change individually.
She did tell me that Bella should be seeing improvement with the Methotrexate already and feels that she is getting worse in symptoms so she told me the next option would be the Biologic drugs. Which they give in addition to the Methotrexate and is also an injection or infusion. The doctor said her disease is progressing ever with the treatments and wants to move fast with tests.
I am very happy that the doctor is moving quickly to help Bella and find the right treatments to improve her quality of life.
Most people would never notice a change in Bella at school or activities because she tries to hide it from everyone. Bella hates having JA and tells me she does not want to talk about it with anyone. I asked her why she tells everyone else that she feels good all the time when they ask how she is feeling and she told me that is because she doesn't want to explain what is wrong to everyone all the time. She doesn't want people to think she is weird. Kinda breaks my heart that she feels the need to cover up just to feel normal.
So, hopefully by the end of day today we will have our next round of appointments set up and we can move forward with helping to reduce her discomfort. 
I have to say that I have never been more happy with a doctor and staff ever. Bella's Rheumatoid doctor and her nurses are amazing. They have helped us so much and call after hours to help us and have never doubted a pain or concern. Love, love, love her doctor/nurses!!!