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!!!

Were making changes as we need to...

Many people have often mentioned to me about changing Bella's diet to help with he arthritis. So, I have mentioned the idea to her doctor and she stated that there is no specific study that proves that a diet change will make a huge difference in child with JA. Doesn't mean it couldn't help, but it isn't a cure all for JA. Bella's arthritis is an auto immune disease and she was born with the gene. It's much different than the typical osteo arthritis most of us know about.
BUT, we as a family have been slowly transitioning to a whole foods diet and we are trying to exclude as many processed foods from our diets as possible. You wouldn't believe some of the chemicals and toxins found in the food we eat each day.....it's scary. I'm not saying we won't enjoy a soft pretzel, meal out, or eat some processed foods at parties. We are choosing to reduce them ad switch our family to a healthier lifestyle. As many of you already know, Chloe is already on a gluten free diet. So, she is pretty much on this plan already since I cook most of her food from scratch.
Each week I have been trying to learn news ways to cook their favorite foods in a healthier/homemade way. I have spent countless hours researching recipes and meal plans. My kids have barely even noticed the changes we have already made. They do grumble at the idea of ditching some of their favorite snacks, but I assured them that we would find yummy snacks.
My husband (who us to be my junk food junkie) has already changed 90% of his diet and has not been sick in about 6 months (which is a record for him). So, if our diet change helps Bella feel better, awesome...if it doesn't than at least we are changing our diets to improve our overall health.

Bella is having a rough week. Normally when you ask Bella how she is feeling she will say, "Good". That is catch all response which to us means that she is not in horrible pain, just manageable pain/exhaustion. The past 2 days she has given us a different(unexpected response) of "Ehhh". This means that she is feeling really crappy. I have noticed that she is getting tired earlier and earlier each night and is 1 second away from a meltdown at all times. The doctor/nurse has told us that it is a side effect of the treatments and the auto immune disease itself. The past 2 mornings I have had to peel her out of bed, literally. It took a lot of persuading to get her to school today. I reminded her that she was leaving early for a doctor's appointment so it was important that she tries to go and at least take her tests and get her homework. One of Bella's biggest complaints is how much school she misses because she feels like she is falling behind. In all honesty, she is missing a lot. Eventually, there will be less appointments and hopefully we get her into remission sooner than later. I try to teach her as much at home as possible when she is too sick to go to school. But it does not replace the instruction she is missing at school. We hope to get this worked out when we have her 504 School disability meeting next month. Bella loves school and she strives for good grades (she is hard on herself), so this will be the most important time for me to be her advocate. I know my child, what she is capable of doing, and how her JA I affecting her school. To some her grades are acceptable if they are B's and C's (honestly they are to me when I know she is trying her best) but to Bella they are not. I am trying my best to help her achieve her goals but also teach her that it's okay to get grades other than an A. I do love her determination and high standards, it will make her dream of being a doctor one day easily achievable. But I really want her to focus on her health right now.
Tonight she takes her next injection and we will teach dad how to administer the shots (just incase I am not here at some point).  With each dose we hope we are another day closer to remission. I would love to see my vivacious little Bella to come back full force, it is the one thing I wish for every day.

Have a wonderful day and try to stay warm.
Here is a picture of her at school yesterday with her friend Emilia's Dad....he came to update the class on Emilia FINALLY being home from the hospital after a long month post surgery. Bella was excited that Emilia got to video message the class.

Week of many victories!

So much has happened since last week, I don't even know where to start. The new chemo injection is showing less side effects (so far) BUT she was exhausted the day after. I can tell that she gets tired quicker each day. The nauseous didn't seem to be an issue and nether did the headaches, so we hope it continues this way. We are planning on gradually moving her injection day to the weekend so that she doesn't miss too much school. Each week we will give it to her a day later until we reach the day we prefer. Bella and I are both confident in getting/receiving the shots that neither one of us is nervous this week....and we will show dad how to administer them this week too. We are up to 5 pills a day (sometimes another medicine if she has a side effect) and one injection a week, crazy that my 10 year old takes more pills than me. 3 of the pills help prevent side effects from chemo.
She is still in pain each day but we haven't seen any extreme swelling in over a week, which is awesome! This morning she had a rough start and was hurting, so she stayed home until she could get those joints warmed up. It gave her a chance to work on homework she missed last week during her hospital visit and recoup time after chemo. In a couple of weeks we start getting blood work drawn to make sure the chemo is not hurting her organs and to make sure her counts are  track.....this will be something Bella will need to do on a regular basis.

We did get some great news last Friday; the insurance company has agreed to pay for the chemo injections(minus a co-pay) and they allotted Bella 8 more physical therapy visits. Bella's physical therapy visits are really important for her joints, it helps to reduce damage that could result in future surgeries. The insurance company isn't too keen about paying for them for some reason. We will celebrate these 2 victories...they may be small to some people, the are HUGE for us. I don't want to jinx ourselves, but I think there will be a huge insurance victory in the mail today or tomorrow.

Over the weekend we got to visit with family and attend or cousin's baby shower. It was a nice break from reality and we really enjoyed the much needed family time.

Last night Bella was presented an award through the organization she cheers for. We attended a banquet and Bella was presented a HUGE trophy called the Spirit of football/cheer award. This award is given to a player that is dealing with a disability and still toughed it out and participated. They gave Bella a wonderful speech, a standing ovation, and a gift certificate to Dick's Sporting Goods. Talk about an emotional night for mom, no one warned me that I would need tissues!

Through all of this going on with Bella, she was still able to get straight A's on her report card last week. She is truly a rock star! So proud of her!

Thanks for checking in on us........

In Hershey all day ~Bella

       Today I had to go to the hospital. I had to get my chemotherapy shot and learn how to do my shots. At first I was really nervous. My mom and I had to learn how to give me the shots at home. We practiced on a pretend circle that was skin colored. First, we had to wash our hands. Then, we had to take the tube of medicine and clean it with alcohol wipes. Then we had to put the needle into the tube of medicine. We had to suck the medicine into the needle without bubbles. Next, we had to wipe my arm with alcohol wipes. Then my mom pinched my arm and put the needle in. Then she had to push the medicine into my arm. Then when she was done she took it out and threw it away. We have to throw it into a hard plastic bottle for safety. I got the choice to put the needle in my arm, leg, or stomach and I chose my arm. I was most nervous when my mom put the needle in my arm because I thought she didn't know what she was doing. After I was done I got to pick from a goody bag.

Then I got to visit my friend Emilia who was also at the same hospital as me. We had lunch together and got to talk about what she is missing at school because she has been in the hospital for 29 days. She just had surgery to remove cancer from her leg.
(To Emilia):  I THINK EMILIA IS THE STRONGEST PERSON EVER!

Then I had another appointment with a special eye doctor who needed to make sure the arthritis was not in my eyes. Guess what, it is not in my eyes! That is really good news. But I have to go back once a year to keep getting checked. If my eyes bother me at all I have to go back right away.
My eyes were so blurry after I left and the sun made them hurt so bad.

Today my knee and ankles hurt me and my back hurts a little too. I am so tired right now.

GUESS WHAT? Today I am started my food drive. I have been doing it for 5 years in a row. I want to get 2000 pounds of food. PLEASE DONATE! Help the needy.

BYE!

 

 

 

Like we don't have enough going on right now.............

I wish the insurance company could see the fear in my daughter's eyes when she realized she couldn't straighten her leg because her knee was too swollen and painful. Or see the disappointment in her eyes when she could not bend over to dress herself because the pain was too bad. Maybe then they would realize that the medicine they are denying to pay for is really necessary. Do they think the doctor's office would prescribe a chemotherapy treatment for a child if it were not necessary? Why would they pay for the needles if the injectable medicine was not going to be covered?
I am beyond frustrated with the insurance company.

I don't get it.

I am knee deep in paperwork for my child because I have to write 500 different ways that my daughter has Juvenile Arthritis. I have to write 500 different ways that she is now disabled. I have to be reminded over and over again that life is different for her. I have to jump through hoops that shouldn't be there.

All I want is for my daughter to be able to not worry about pain and side effects every day.


I will fight for my daughter every day or go broke paying for her treatments. I will not let the insurance company stop her from getting the treatments she deserves.

One word that can bring me to tears............

Disabled
I have finally taken the steps to apply for Medicaid benefits for Bella, which is one of those steps that was hard for me to take. I personally didn't feel right using these benefits because we can support our family and I didn't want to accept the fact that my daughter is now considered disabled. It's a hard realization to wrap your mind around. The doctor's and many others have urged me to take this step to help pay for these ongoing medical costs that are starting to pile up. So, I have spent most of this morning filling out MORE paperwork. Thankfully, you can do most of the work online, but it does involve a ton of information. I was trucking right along until the last page popped up telling me that Isabella was eligible for other benefits due to her disability. I don't think I will ever be able to get use to reading that word. I know what the disease is capable of doing to her, BUT we are doing everything possible to prevent long term damage. We are fighting everyday to get Bella into remission. We are trying everything the doctor suggests without a fight. But there is no guarantee to any of this. There is no specific combination of medicines or therapies that will make it happen. Everything is a gamble at this point.
Last night proved that anything can happen at any time. Bella called me into her room after she went to bed to tell me that her knee hurt really bad and she couldn't straighten it. I checked it out and noticed that Bella's knee was swollen and she couldn't straighten out. We did as the doctor instructed and we applied heat to her joint and wrapped her up in her heated blanket. She woke this AM in pain and limping around but she wanted to go to school. She is one tough chick!!
This means that she will have to sit out of competition cheer practice again tonight, which will make her pretty upset. Even though she hurts she still tries to do things.......she will often hide her pain so that she can still do things. But what Bella doesn't understand is that she causes more damage to herself when she pushes through her pain.
She is 10 and use to being an active kid........slowing this kid down is hard.

She was excited to go vote this morning with me.

Frustartion from a 10 year old.....

We had a busy but awesome weekend that included our 5K Fun Run/ Walk and After Party that was benefiting Bella's friend, Emilia. Emilia is the one battling Ewing's Sarcoma, a rare form of bone cancer. Bella and our family volunteered at the events this weekend and had such a blast. We love you Emilia!!!!!
As Saturday evening approached and it was almost time for Bella to start round 2 of chemo she brought on her skills of persuasion in hopes that we would post-pone her treatment. At one point she almost had us, but we help strong and began the treatment as planned with the new medicine to help with side effects.
The first part of Sunday she was not feeling so great and laid in bed reading. Though the new medicine helped with her nausea, it did nothing to stop her headache and exhaustion. We decided around lunch time to peel Bella out of bed and take her to visit Grammy and Pappy in hopes that it would take her mind off of feeling crappy. Half way through the visit she actually perked up and was being her usual sassy self. Which was quite a relief.
But then later that evening she had one of the biggest meltdowns I have ever witnessed. She was upset about school work and mad that she had to clean her room.  Bella just had enough and totally exploded with frustration.
When I woke up this morning I realized that I often forget my daughter is "sick" and going through a lot and I shouldn't pile on the tough love too thick. I need find a happy medium for her until she gets use to all of this. Honestly, I forget she has JA because Bella doesn't spend her days complaining because she wants to try to be as normal as possible. Don't get me wrong, I can see it in her tired eyes and her limp down the hall each morning.
Honestly, I have been quite cranky myself lately because this is A LOT to deal with. My friends have actually brought it to my attention and I feel horrible. I'm not trying to be miserable, I am overwhelmed right now. Here is my public apology to my friends and family for not being myself, I am sorry. I am aware and trying to fix it, so please bear with me. It is hard to feel so helpless and know that your daughter's health/well being is in the hands of doctor's/insurance companies.
The mounds of paper work for insurance, school, and doctors are overwhelming. The insurance company has been the biggest headache for us right now. I got a bill in the mail for one physical therapy visit for $170 because the insurance company denied it, after they approved the visits. IT IS FRUSTRATING!!!!  She attends these appointments 2-3 days a week. I am sure I will get it sorted out BUT not without a struggle and a huge headache first. What makes me so mad is that the physical therapy is one of the things that will truly help my daughter from spending most of her life in a wheel chair (which could cost the insurance a ton of money) and they want to deny the preventative care.  I actually dread getting my mail each day, thank you health insurance! ;)
So, we've updated the doctor as they asked and we wait to hear back from them. I sent Bella to school for a half day in hopes that her friends would help make her feels a little better.
Thanks for checking in on us......we are surviving, just a little crazy right now. =)

I know it will get better, BUT.....

This has been a tough week in the Anderson house. I'm sure it has a lot to do with the holiday because even for a healthy family it adds additional stress to the mix. Since the start of the week was consumed with Bella feeling pretty crappy from the chemo, it lead to a chaotic end of the week. I spent a couple of days going back and forth with her doctors trying to find a plan of attack for this weekend's round of chemo. We are trying to make it so that Bella does not miss too much school but also still have the ability to have a social life (it is one of the most important parts over her overall wellness). We could give her the chemo Friday and allow the weekends to be consumed with all the side effect issues but then she would probably start feeling left out and miserable from lack of social interactions. So, we have decided to make Saturdays the chemo days for Bella and if she has side effects the worst will be on Sundays and maybe Monday. It seems as if the first 2 1/2 days after she takes the dose she feels the worst. She was tired all week and by last night she was totally wiped out. But they say that her body could get use to it, hopefully.
But the doctor also wants us to consider switching Bella to injections instead of the pills. They are going to add one more preventative medications to the list this week to help with side effects. They are willing to give the pills one more week. They will teach us how to give the shots and from what I heard, after the first time it is no big deal. So we will see.

When we get crazy busy in our lives it is easy to forget that Bella has an auto-immune disease because she doesn't always look like something is wrong with her.....but last night was a quick reminder of what we are up against. When my 10 year old asked to go home to bed less than a hour into trick or treat, I quickly was reminded how the auto-immune disease if effecting her life. Not many kids would bail on one the most exciting days of the year mid way through. What kid doesn't want to come home with bragging rights to the largest sack of candy collected? Halloween is one of our favorite holidays because we normally host a party and haunted house for the kids and this year it wasn't possible. All because we were consumed with doctor appointments, therapy appointments, and mounds of paperwork we have to fill out for insurance, doctors, and the school. Plus the increased cost of medical care for Bella, left us with surprise bills and copays. I know eventually we will sort it all out because we always do. For now, we have to make a lot of changes in our lives. So, please don't be offended if we start saying no and attend less activities.....we just have to refocus our time and energy until we can fully adjust to dealing with a life long auto-immune disease.
The one thing that Bella wanted this week when she felt crappy from the chemo was for mom to lay next to her and snuggle. All she wanted was my undivided attention and I was thankful that I was able to give it to her. So, I am taking this cue from Bella and realizing that the Anderson's need to slow down and make extra time for each other as a family.
Wish us luck on this week's round of chemo and pray that Bella's body will be more accepting to the treatments.

Yesterday and today~Bella

Today and yesterday I stayed home and laid in my moms bed. My stomach hurts and my right knee. I feel like I have to throw up. I also have a rash that is so itchy. I kept waking up last night and itching it. I feel so tired.
My friend Maggie made me a bracelet for Juvenile Arthritis it is cool. Thank you Maggie!

Wonderful Weekend and our new journey.......

We wanted to make sure that Bella had a great weekend before she started her Methotrexate (chemotherapy) because we were not sure which side effects she would get from it.
Friday night she got to go visit her friend Emilia, who is in the hospital recovering from a surgery she had to remove cancer in her leg. Emilia was diagnosed over the summer with Ewing's Sarcoma, a rare bone cancer. So, it really meant a lot to Bella to finally get to see her because she has been in the hospital for a couple of weeks now and wasn't well enough to have visitors. Keep on fighting Emilia, we are thinking of you everyday, and can't wait until you come back home!!!! <3<3<3

Saturday we had a relaxing start to our day and then we went to root on her friend, Anthony at his final baseball game of the season. In the last inning he hit a double which was really awesome to see his excitement. Bella thinks he will be a famous baseball player when he grows up.


 

Anthony & Bella

 Later that evening we got to spend time with friends/family carving pumpkins and sitting by a bonfire. Which was a great distraction for all of us.

Sunday, Bella got to participate in her friend Noelle's walk for Diabetes and go to Hershey Park with a bunch of her friends that also did the walk with Noelle. Bella's friend Noelle was just diagnosed this past year with Type 1 Diabetes and has worked hard at raising almost $11,000 to help fund research for Diabetes. AWESOME job Noelle, we are so proud of you!!!!!

 

So after a weekend full of fun we had to slide back into reality and begin our next step in our journey with her Juvenile Arthritis and Psoriasis. We had to begin our first round of Methotrexate (chemo drug). As soon as we pulled up to our house Bella was in tears telling me she was wanted to go hang out with her friends more and it wasn't fair that we had to come home. I really knew that Bella was nervous about beginning her new medicine (we all were quite nervous to be honest) and she even tried to convince me to post-pone her first dose. NO CAN DO, Miss Bella.

She took her 5 pills like a champ and asked to go hang out at her friend Anthony's house for a bit before bedtime, how could I say no!?!?! =) We also noticed a new rash developed yesterday on Bella's legs and stomach. More than likely it is the Psoriasis.

So, how will the chemotherapy effect Bella????.......the question that had me awake numerous times last night and even got Bella a special bed in Mom & Dad's room so that we could keep a watchful eye over her. It is almost lunch time and Bella is sound asleep beside me snuggled up to one of our dogs. Her complaints are stomach ache, headache, fatigue, and hot/cold flashes. These are all normal side effects to the medicine. She has changed her outfit three times already this AM to adapt to the changing body temperatures, took a hot bath, and turned on/off the fan. We were told to expect this and a few other side effects. The thing is with this type of medicine, no one reacts exactly the same so we had to wait to see how her body will react. She is also in a lot of pain today from all the walking she did yesterday, which reminds us why Methotrexate is needed.

I have planned my day to hang at home to work on the upcoming classroom Halloween parties, get last minute details worked out for our Helping Hands for Emilia 5K this weekend, and begin planning my holiday open house for my own business.

Bella has just woke up and asked me to paint her nails......so I need to go pamper my princess. Thanks for checking in on Bella! <3 

 



At my doctor! ~Bella

  Today at my doctor I told my doctor that my medicine was not work. So she said I am going to take a different medicine. The medicine is called chemo. I might eventually have to take shots every week. I only have to take 5 tables of medicine a week. So I probably will take 5 pills on every Monday.
   Also at my appointment we talked about my foot being flat footed. Flat foot is your foot being flat that makes my feet curve in and It makes my ankle, knee, and hip hurts. Today my ankle, and the bottom of my foot hurts.

  

I just can't believe it........

Up until yesterday I was still in denial of Bella being diagnosed with an auto immune disease. I was always hoping that the next appointment would be the one where they tell me they were mistaken and they had the diagnosis wrong. Guess what, it's real and not going anywhere. I told my daughter's principal yesterday that I finally have accepted it (kind of) and let's move forward with her 504 plan (disability paperwork for school). It took me 2 months to finally accept the diagnosis. I don't like it and I don't want it.....BUT it is here.......time to put my big girl panties on and deal with it, right?!?!?

Well, until the doctor made it really REAL today. The moment I realized there is no turning back is when the doctor stated that Bella needed to start on  medication called Methotrexate a chemotherapy drug. Yes, chemotherapy is used in Arthritis patients, shocking to me too! I'm going to try and explain it to you as it was explained to me because I am having a hard time wrapping my mind around it. Chemotherapy is used for children with juvenile arthritis to slow the progression of the disease. They want to slow down the damage the JA is doing to her body. Right now her body is fighting itself and causing more issues that could lead to irreversible problems. So, we are "tricking" her body into believing that her immune system isn't the enemy anymore. CONFUSING, I know!!!!
So Bella will have to take 5 pills once a week and will likely be transitioned to the shots(because they are truly more effective). They will also have her on folic acid to reduce the side effects of chemo. , So, she is on Methotrexate once a week, Folic Acid once a day, Naprosyn twice a day, daily vitamin daily, and Tylenol. Quite a pill box for such a little girl. This is another attempt at trying to slow down the progression of her disease in hopes that one day soon she will be in remission.

The doctor also told us that she has Psoriasis too. She had these pin marks in her nails and a rash. I forget all the technical details, that is why I took Dan along(he gets the technical stuff). Dan will also remember the stuff I forgot. So, now we have that to add Psoriasis to the list of problems.

The doctor noticed that her back now has a slight curve in it and will monitor the back for any changes. Her fingers are now being effected and the doctor noticed changes since the last appointment two months ago. She also stated that some of Bella's pain in her ankle and knees may be from her being flat footed. The arthritis and being flat footed aren't a good combo. She also noticed that Bella's left shoulder and hip are higher than the right side......so we will work with the physical therapist to hopefully straighten her our a bit.
We got the same lecture about keeping her active, but not too active. If she is in pain to rest. The doctor doesn't want her running because it is too rough on her joints. But wants her to enjoy some sports.....it's so confusing!!!
I'm sure I forgot some of the other details the doctor explained....but for now this is all I could wrap my brain around.
We asked all the questions we could think of and got the details we need for now. So now we start the next part of this journey (thanks for that word Anjie). We are nervous, scared, and confused. But WE ARE IN THIS TOGETHER(my favorite phrase for our family and the 4 other families dealing with medical issues right now) and we will fight along side Bella!

About the week

On Monday my therapist said I could do the Diabetes walk for my friend Noelle if I would ride on my electric scooter part of the time. If I hurt I have to stop. Then afterwards we are going to Hershey Park with them.
When I woke up this morning my back was in pain and my knee and ankle.
Tomorrow is my next appointment and I don't want to go because I hate talking about my arthritis.
Thank you for reading, BYE!

Anxious for tomorrow.......

I have never been one to wish my life away, but right now I want it to be tomorrow so that we can get to Bella's appointment with her Rheumatologist. Having a couple of months to read all the information given to us and do some research on my own, I have questions I need to ask. I know that auto immune diseases aren't cut and dry, which means there will be a lot of possibilities......but I want the doctor to help us understand these possibilities. I just read that Bella only has a 17% - 37% chance of reaching remission......SIGH
Bella is still struggling with daily pain, taking all her meds without a fight, attending physical therapy 2-3 days a week, and has tailored her activities to help her aching joints. BUT, nothing is working right now. Each week she is missing school either because she hurts too much when she woke up, couldn't make it through a full day of school because of the pain, had bad stomach aches from the medicine,  or just felt overly exhausted. That doesn't include the appointments she has to go to each week. I hate that she misses so much school and so does Bella. More than anything, I hate to see the emotional toll it is taking on her right now. She has changed a lot over the last couple of months and I feel like she is angry at the world. Who wouldn't be angry when they feel as if all the work they are doing is producing no positive results? Bella tells us that she doesn't think the medicine and physical therapy are helping and she is disappointed. Eventually they will find a medicine that works for her, unfortunately it is a trial and error system that needs to be used. We let her know that the PT is meant to help keep her joints mobile and without the therapy she could end up not being able to walk. The PT is not meant to cure the disease, just make it more manageable. This week at therapy we asked if Bella could walk an upcoming Diabetes Walk we are doing with her friend, Noelle, who was just diagnosed with Type 1 Diabetes. The therapist doesn't like the idea because they are worried about her causing more damage and increasing pain. But, those cute, little, disappointed eyes got a compromise; she can walk some and use her electric scooter for part of the walk. But was warned that if she is hurting she needs to stop and rest her joints. We are so excited to support Noelle and spend the day with her family. It's so nice that the therapists and doctors understand that it is still important for Bella to enjoy her life and find ways to make these things happen even when the disease is winning. I feel like so much is being taken away from Bella right now and all we want is to provide her with the most normal childhood, but now our "new normal" is different. We have gotten very creative with Bella and we are now exploring different avenues for entertainment/activities for her (and our family). I never imagined that I would be thinking about changing plans because we already have an event that will require a great deal of walking and could possibly keep her from doing much the rest of the week. Unfortunately, that is the nature of this disease. Every day is a mystery and each day she wakes up I wonder what the day will bring for her. Yesterday she had a very mild pain day and only complained about arm pains, but woke up today with a lot of pain in her back. I am glad now that I decided to keep Bella home from the local parade (which brought on a huge fight with Bella), because today could have been much worse if she was out in the cold and pushing her joints. One day Bella will thank me for protecting her but for now I am the mom that is ruining her life (yes, her exact words). Tough love sucks, especially when your kid is fighting a battle like this....a forever battle.
P.S. Bella hasn't been on her blog much this past week, I am sure once she logs on herself she will respond to all your comments. The blog is here for her to use when she wants to talk about JA.

No basketball for Bella this year....sigh.......

OH, I forgot to thank all of you that wore blue on Arthritis Awareness Day, Bella was so excited to receive all of your photos boasting your blue attire all day long! I am still trying to figure out a way to get it on her blog......it will happen!!!!
A week from today we have our next appointment with Bella's Rheumatologist, where we will discuss the next plan of action for Bella. Since the first step hasn't helped Bella, they will move us on to the next step. The doctor had given us a packet of information during her first visit that outlined what to expect and the steps each newly diagnosed patient takes. We are all nervous to find out what exact step will be taken and which tests we will do next. Will she get pills or injections....more therapy, less therapy? During the last phone conversation with the doctor's nurse they pointed out that they wanted to x-ray her back because of the increased pain levels. They have already taken x-rays of her ankles and upper legs. So, I assume they will want to do comparison x-rays to check for changes. Bella has added more complaints about her wrist and fingers hurting this week and I assume the doctor will look into that as well.
I have researched a lot about the HLA-B27 that she tested positive for and have found that it is an indicator for another type of arthritis and other immune diseases. The other type is called Ankylosing Spondylitis. Which our doctor briefly mentioned at our first appointment but decided to go with an umbrella diagnosis for her until more tests were completed and we saw how she progressed with her disease. I like this route because it gives them time to fully evaluate her and make sure that we don't jump to conclusions prematurely.
What is Ankylosing Spondylitis? 
Juvenile ankylosing spondylitis is a type of arthritis that affects the spine and the places where the muscles, tendons, and ligaments attach to bone. The disease causes inflammation of the spine and big joints, causing stiffness and pain. The disease can cause erosion at the joint between the spine and the hip bone (the sacroiliac joint), and the formation of bony bridges between vertebrae in the spine, fusing those bones. Also the bones in the chest can fuse.
Some of the symptoms below we have seen in Bella but others not at all. That's why they take their time in diagnosing because so many of the different type of arthritis overlap symptoms.

back pain, usually most severe at night during rest SOMETIMES

early morning stiffness YES

stooped posture in response to back pain (bending forward tends to relieve the pain) YES

inability to take a deep breath, if the joints between the ribs and spine are affected ???

appetite loss NEGATIVE, BELLA LOVES TO EAT...HE HE

weight loss NOT AT ALL

fatigue YES

fever OCCASSIONALLY

anemia ???

pain at the site of attachment of muscles, ligaments, and/or tendons to bone (enthesitis) YES

joint pain, particularly in the legs YES

vague pain, usually in the buttocks, thighs, heels, or near the shoulders YES

eye inflammation that is painful and causes redness and light sensitivity; may have frequent recurrences of eye inflammation YES

organ damage, such as the heart, lungs, and eyes ???

Sorry for the boring post, but the idea is to educate you about JA and I am sure most of you never heard of Ankylosing Spondylitis, I know I never knew about it. It's a possibility, but we will not know for sure until there are more tests. I could be totally be off base with this information too. SO we will see next week.
Bella did have a bit of a heart break this week whens he found out that basketball try-outs were Tuesday night and I did not sign her up. But Dan and I decided that it is best to not sign her up because she is having a lot of pain doing cheerleading. Basketball is much more physically demanding than cheerleading. She is already so disappointed that she can't make it through an entire game cheering. I remember last basketball season where Bella would come home every night after practice miserable and crying because the pain was too much. I just couldn't put her through it again. Dan and I made the decision without talking to the doctor because we think it is best for now. The whole idea is to reduce and prevent joint damage and to keep her from having surgeries. Though Bella thinks I am being the meanest mom in the world by not letting her play one of her favorite sports, I am doing it to help the future of her health. I told her if she goes into remission by next season, I will sign her up to play. Of course that was not good enough. Hearing her friends talk about trying out broke her heart and I could see the disappointment in her eyes.

Taking away things that my daughter loves to do is so hard.............

It will impact entire family.

The doctors, The Arthritis Foundation, and fellow families with JA have numerous times mentioned to me that this disease will effect the entire family. I couldn't image what it could mean for us when they first said it to me. We are the typical American family that is juggling school, work, sporting events, play dates, sleepovers, vacations, and family time.
Each member of our family has commitments of their own and we still keep our schedule pretty normal:
Val is in 9th grade, in cheerleading, and constantly developing her social calendar.
Dan is our worker bee, always trying to fulfill his honey do list, and enjoys spending his free time at the gym.
Bella wants to play every sport possible, over fill her social calendar, and feed the needy with her yearly food drive. Obviously, her sports have been changed a lot.
Chloe is in 2nd grade, spends most of her free time reading and learning, she tries sports but hasn't found her place in the athletic department, she would much rather build a fortress for bugs in the backyard or play house with the dogs.
I spend my days planning our lives, making all these social calendars and sports fit in somewhere, making handbags for my business, and volunteer in my community in numerous projects (right now my current project is Helping Hands 4 Emilia which is raising money for Bella's friend Emilia who was diagnosed with a rare bone cancer).
For the most part there have not been any huge changes in our lives, but there are areas where we all have had to help out or switch around schedules. Val has been so great with making sure Chloe gets off the bus since I take Bella to physical therapy 2-3 days a week at the end of the school day. Chloe has had to sit through a few appointments and always remembers to bring a book to read while we wait for Bella. I happily lessened my load in my business and volunteer calendar to fit in all these extra appointments that Bella has to go to each week. Oct & Nov will be full of many appointments since we have to see an eye specialist, her Rheumatologist, family doctor, physical therapist, and dentist. They will all be doing tests and checking the progress of her Arthritis.
Bella has had the most change because she has had to drop sporting activities, limit her activities, and sometimes sit out. But we try to keep positive and offer her alternatives. Bella has decided to join Girl Scouts again this year.
But the one member of the family that has surprised me the most is Chloe. A couple of weeks ago when Bella was in a lot of pain Chloe rushed off the bus to go check on Bella after school and offer to get her a drink and snack. The next week she came home with a drawing for Bella which was the Blue Ribbon for Arthritis Awareness. Then, just last week Chloe came home with a card she made for Bella at school signed by her teacher and classmates. The card below says: My sister has Juvenile Arthritis. She needs to be careful because when people are sick it makes her arthritis worse. There is no cure for juvenile arthritis that means that Bella will have juvenile arthritis forever. To: Bella From: Chloe
 I am amazed because I never sat Chloe down and explained to her what Bella had or what it meant. But during our conversations with Bella she quietly listened and obviously took notes. Chloe is a smart little girl and has a kind heart. She didn't need to be told to help out or care, she just did it. She melts my heart.
So for now, we all have tailored our schedules a bit to fit in the changes, we still are still going strong, and fighting along side Bella. In the end, it is Bella that struggles the most.........but were a family and we're in this together!

About my day!!!

Today I am feeling a little rough. My ankles, back, and right knee hearts. today I had s much pain that I went home early. My friends dad got me this amazing soup from Isaac's. it is the best soup ever!

What are the odds???

During the last 5 months our little town has been bombarded with childhood disease/disorders, all of which are friends of Bella (and Bella). I still have a hard time wrapping my mind around how and why this has suddenly happened to these young girls. Obviously, Bella was diagnosed with Juvenile Arthritis, her other friend was diagnosed with Ewing's Sarcoma (rare bone cancer), another friend was diagnosed with Type 1 Diabetes, and one was diagnosed with Epilepsy. These girls are not only beginning their journey through puberty, but now have to deal with life long medical issues. These girls have spent more time at doctor appts, tests, therapy, pharmacies, and have taken more pills/shots than I have my whole entire life. The courage I have seen in this group of girls is remarkable, far beyond what you would expect from pre-teens. I admire their strength and ability to take on adult responsibilities.
I would never wish any of these medical issues on anyone, but I am glad that these 4 girls have each other. They are not alone in their battle, they have each other. When no one else understands their pain, frustration, and victories.....they can turn to each other for support. I am grateful that Bella has all of these girls on he side!

They will "FIGHT LIKE A GIRL" until there is a cure!

Ladies, always remember that, "We are in this together"!

Bella's Post Presentation

  I want to thank everyone for all of the cards, gifts, and get well wishes on line! The stuff made me feel happy because I feel like people finally know how it feels like. I did my presentation in my class yesterday. It was a little weird because I was nervous. I showed my class my video me and my mom made!! Then I told them facts about Juvenile Arthritis. Some of my classmates asked me questions. It makes me feel happy that I did it because now they know what I am going through.
Today my ankle and my hurt a lot, I woke up in a lot of pain today. The past few days I have felt really really tired. I really wish my pain would get better....THE END!

 

A little afraid of the unknown...

The one thing that is so hard to grasp with this disease is the unknown, each day is different and we don't know what to expect. We can't plan for a bad pain day, we just have to accept it when it arrives. Mornings are hard for Bella because she wakes up in pain and stiff every morning. Getting out of bed is a challenge each day. We are trying different things to try and make the morning transition easier for her. Once we get it figured out this disease will throw us a curve ball and we will be back at the drawing board because that is how Juvenile Arthritis works.
The other night Bella and I had a talk about JA and it is clear to me that she is sad and scared. She doesn't want to talk about it much and is storing up most of her feelings. But she did open up a little which brought me to tears in front of her for the first time since she was diagnosed.  She told me she is afraid of never being out of pain, afraid of what the next round of medications may do to her, and nervous that she may wake up one day and not be able to walk. Moments like this make your heart break as a mom. It is the first time that I can't fix it for her, I can support and guide her, but my band aid won't work this time. My daughter's future is now in the hands of doctors and I have to put my trust in them. I have to encourage my daughter to stay positive even when I am just as nervous and scared as her. If we don't follow the doctor's orders we could cause damage to her joints, organs, and expose her to other issues. My best advice to my daughter was that we are going to fight until we get into remission, we will do whatever it takes to help her be pain free, and we will educate as many people as we can in hopes that one day there is a cure. Bella is strong, courageous, and will accomplish things I never imagined possible. My short term goal is the day this will not consume our lives.
As Bella wrote about in her own post, she will be doing a presentation Friday to her class to educate them on Juvenile Arthritis. We gathered information (tricky way for mom to get my stubborn daughter to learn more herself), picked photos, and made a video. During our research (also briefly explained by the doctor) we found out that one of the medications Bella will need to take is a mild form of chemotherapy. That was hard for Bella to hear because one of her dearest friends is battling cancer and taking chemotherapy. Bella sees how it has effected her friend and she is worried for herself. I explained that the side effects are minimal and no matter what happens we will work it out.
Thank you to everyone who posts on her blog, she looks every night to see what everyone is saying. She told me it is her way of talking about her feelings and it make her happy!
So, check out her video below and let us know what you think. <3<3<3

 

What I am thinking!

  Today my neck hurts and my right knee. I was just at cheer from 6:00 till 7:30. I practiced my hello cheer and my cheers. We didn't practice our dance because we are really good at it. The song we dance to is Power by Justin Bieber and Will I Am. I love that song but I like Justin Bieber more. my mom and I were talking about my arthritis and I got scared and nervous because I can get even more diseases.  I was about to cry because my mom was crying! My mom and I decided to make a video so people would stop asking me questions. I am going in with my mom to present it in my class. I am a little scared because I get nervous when I am in front of people. When I get nervous I mess up the whole thing but hopefully my mom will correct me.