New knee braces, another infusion, and the end of the 1st marking period in Middle school!

We have had a lot going on this past month. Lots of appointments and we ended our first marking period in middle school. I am proud to say that Bella made Distinguished Honor Roll!! It was tough for Bella since she misses a lot of school but she worked hard and achieved her goal. So we are quite proud of her! Bella's doctor requested that Bella get fitted for custom knee braces to better support her floating knee caps and we finally got those this morning. Bella is not a huge fan of them because it clashes with her outfits and look dumb(her words). But the doctor wants her to wear them on a daily basis when she is walking or during physical activity. So this means everyday (yes I know she is not wearing them today, that's a battle we will deal tonight with Dad) at school since she has to walk from class to class. So, this will have to be another part of life that Bella is going to have to learn to deal with or run the risk of knee damage and we all know what that will lead to for Bella. So her physical therapist and doctor have both pleaded with her and I hope she will listen. She had another round of Orencia Infusion last week and as always the Nurses at Hershey Medical Center were awesome. They take such good care of Bella and always treat her like royalty. We always see a great improvement the week after these infusions and love to see how much better feels. BUT the infusion seems to wear off about 2 weeks later and we have a flare up. So the doctor is thinking about adding steroids back into the mix for the last half of the month to keep her joints from flaring up and causing more damage. We are going to see how long this infusion lasts and if we have the same results as last month the doctor will add in the steroids to keep her little joints happy! She had her appointment with the Ophthalmologist to make sure the arthritis isn't causing inflammation in the eyes. So her eyes looked good and there is no active arthritis in them...YEAH!!! But Bella does need to get glasses...I know it never ends. The office doesn't have eye glasses on hand, so we are going to another office to pick out her new glasses. So hopefully this weekend she will have a new pair. Bella is still doing her weekly injections of Methotrexate chemotherapy (of course she still tries to talk her way out of it). She does still have the same side effects.....the day after they call it MTX hangover because you just feel awful. She gets mouth sores that drive her crazy. But maybe one day we can ditch this MTX and find something that works well without it. FINGERS CROSSED!!! Bella and I got to go to a PSU football game this past weekend. It was our first PSU(or any college game for that matter). Her friend Emilia was the game honoree Saturday and a group of her girlfriends went up to support her. So Bella got to tailgate and watch the PSU game for the first time ever. We also got to see Miss Emilia on the Jumbo Tron....it was such an awesome experience. Bella and I had a blast! Our seats were just a few rows up from the side line, so that was really cool! Bella has been a PSU fan for a couple years now and let me tell you, she loves it even more now!!! She wants to go to college at PSU to be a doctor and I think that dream got even stronger after this past weekend. What a great experience for Bella!!! Thank you to the families that organized the trip and invited us along! For those of you that don't already know, Bella has started her 6th Annual Food Drive. It is already off to a great start and she has collected over 400 pounds of food this year. Her school, physical therapist, friends, and family are all helping Bella collect food for her food drive. To date she has collected over 4,000 pounds of food. She just had an article published in the local paper and an announcement on the radio. I couldn't be more proud of the generous, kind hearted person she is. I can't wait to see what her totals are at the end of the food drive. I hope you all have a wonderful holiday and as always thank you for checking in on Bella.

Her knees are not cooperating

Bella has been having a great run with her new treatment plan but last weekend she started to have problems with pain and swelling in her knees. She was having a hard time walking. We got her on a dose of steroids to help reduce the swelling and she was able to walk normal again by Tuesday. Then this Saturday night it started up again. So after arguing about using her braces and crutches, she went to school this morning with crutches. I'm not sure what is going to drive me more nuts, Bella's pre-teen attitude or her Juvenile Arthritis. They are equally frustrating. Bella is not one that likes attention and the idea of everyone looking at her while wearing her knee braces and crutches was mortifying to her. I had to remind her that not taking proper care of her knees could result in a surgery which would be far worse than using crutches for a day or two. I hate to see her so worried about what others think and to put her health second. In the end we compromised and I allowed Bella to choose the knee braces or the crutches, and she chose the crutches. When we see her therapist today I will have them take a closer look and see if this is her JA or her floating knee caps causing the problem. I want to figure out a plan to keep this from happening over and over again. I have been in contact with her Rheumatologist and they offer us many treatment options but I'm wondering what we need to do next. Bella did get to enjoy trick or treat last week. She did a short walk around with her sisters and had a good time. She also went to her school's Halloween dance and had a blast with her friends. Her next infusion is next week, so I am hoping that helps with some of her pain she has been having lately. Thanks for checking in! Have a great week!

So far, so good....... :)

We are still crossing our fingers BUT we have seen a lot of improvement from the new infusion. Bella had a pain free day on Sunday and cheered the entire game!!!! That is a huge victory for Bella!! Overall, there has been a reduction in pain and an increase in mobility!! So we will take it and celebrate it. Now, let's hope it continues on this path long term. This week is a slow week for Bella, she only has 3 appointments(he he). We see her Rheumatologist this week and we will get to report our good news! I hope her exam shows great improvement too!!! Keep your fingers crossed for her!!!! Last week after Bella's routine blood work her counts were a little off but the doctor said it was likely due to the chemo and new infusion. They always keep a watchful eye on the kiddos on immune suppressant drugs to make sure they aren't too weak to continue treatment and to watch for infections. They did find blood in her urine and they did 2 rounds of tests which we are still waiting on the second round of results. Fingers crossed that it is nothing of concern. We head off next week to visit Hershey children's Hospital for another infusion. After this one we switch to monthly instead of bi-weekly. That will greatly reduce our travels out to the Sweetest Place on Earth and allow for a little bit more normalcy for Bella. Bella loves the nurses at the infusion center because they are so kind and helpful. They make our time there so comfortable and make the experience so much easier! We are truly lucky to live 25 minutes from one of the best children's hospitals and they have an amazing Pediatric Rheumatology team too!!! School this year has been quite a bumpy transition from elementary to middle school, but I think Bella finally got the swing of things. I am really proud of how dedicated she is to achieving high grades. Some times I think she is too hard on herself, but it surely does pay off in the end for her. As we reach our mid point of the first marking period, Bella has all A's and B's...not to shabby since she has already missed 8 days of school for appointments. This week at her football game they are doing a Cheer for Charity event in her honor. Parents get to sign up to cheer with their kids which is always so much fun to watch! They are collecting non-perishable food items for her food drive and donating any money collected to help find a cure for arthritis. We are pretty excited about this fun event. We are pretty lucky to have such an awesome organization for Bella to cheer for! Hope you all are having a great start to fall! Thanks for checking in!

First Infusion

On Tuesday Bella went for her first infusion at Hershey Children's Hospital. We weren't sure what to expect so we were a little nervous. But the staff at Hershey is awesome. They explained everything to Bella step by step and made her so comfortable. Bella gets her own private room with a flat screen TV and access to the internet. There are movies, games, and television for her to watch. They also have a lady go around offering crafts, games, and activities to keep the kids busy. Bella also got a new blanket and pillow case made by awesome volunteers. The infusions took about 3 hours but the medicine that they give before the infusion made her super tired. So about halfway through she fell asleep and when we were home she slept the day away. We brought school work along for her to do but obviously she can't work and sleep at the same time. So we have spent the week trying to catch her back up to speed. This year Bella started middle school and along with the new freedoms and class changes comes more responsibility. It has been quite a juggling act for Bella. Missing days from school for appointments and now infusions make it tough to keep up some days. But I do have to say she is trying to find her footing in middle school and working out a few quirks. Overall she is still getting awesome grades with a couple of snags along the way. She is learning that she has to work a little harder when she misses school and allow herself time to study a little more. I know she will work it all out, it will just take some time to get use to the new responsibilities of being in middle school. Bella is hard on herself and sets her bar high, but some days I think she makes herself nuts putting her expectations so high. I know one day it will make her a great doctor(if you didn't know that is what Bella is determined to be)and she will achieve so many great things in her life with this type of determination. But some days I wish she would just be a kid and accept that perfection isn't necessary all the time. She is still doing cheerleading and each game her goal is to cheer half of the game and the one game she cheered the whole entire time!! She was hurting a little bit the next day, but was quite proud of herself. I hope there are many more of these proud moments as we embark on the new treatment plan. We have had zero side effects to the new medicine, so that is awesome news! Keep you fingers crossed that we found the medicine that puts Bella into remission. Her goal is to be playing basketball this year, so cross everything you have to cross!!!!! Her next infusion is in a week and a half and we hope to be a little more prepared this time since it will be our second round. Have a great weekend and thanks for checking in on Bella!

Not how I imagined my daughter's life

I know life is full of curve balls and you have to make the most out of what you have but some days I truly don't understand why things have turned out this way for Bella. My husband tells me to stop trying to figure out why and just focus my energy on finding a solution. I do try my best to fight hard and work towards making her quality of life the best I can. BUT some days I do get down, I cry, I get angry, and I wonder why?!?! At the end of the day my daughter (or any child) does not deserve this life. Pain is so hard to deal with, exhaustion over takes her some days, and the constant stomach issues wear down her body. But sometimes the hardest part is the non-stop appointments. We drive to Hershey so much, I do joke with the doctors that I don't mind because I can go shopping at the outlets afterwards. But lately I've gone to Hersey so many times that I have run out of money for the outlets (ha ha). So as some of you already know the doctor has decided to change her treatment plan a bit. She will be doing Orencia Infusions at Hershey Children's Hospital, which starts out t every 2 weeks and changes to monthly. She will stop her Enbrel injections but She will still get her chemo injections weekly at home. The doctor has added Naprosyn back into to her daily medications in the morning to help with her morning stiffness. Of course, we still have the medicines that will help reduce the side effects of chemo and her new stomach medicine. There are also going to be changes to her 504 disability accommodations at school because the arthritis has moved into Bella's fingers and wrists. Bella even shocked me at the doctor's the other day when she told her that she is having tingling in her hands and feet. She also told us that some times she feels as if her feet are too weak to walk on. That was a moment when I had to hold back the tears. It was the moment I started to ask WHY, why Bella? Bella has already had to give up tumbling (have you seen how flexible my daughter is, she is gifted at tumbling) and basketball which broke her heart. Bella begged the doctor to allow her to go to Sky Zone, the newest craze in our town because it is a ton of indoor trampolines. The doctor told her to stop tumbling and warned that trampolines are had of kids with JA. But Bella LOVES it. The doctor actually gave her the go ahead to give it a try with a very stern warning......if it starts to hurt, STOP. If it hurts afterwards she then knows it's not the best idea to do it again. But I saw the doctor struggle with this request from Bella but told us that sometimes the quality of life needs to be thought of too. Since the insurance company is not going to pay for physical therapy anymore, we are putting Bella down to one day a week. Though she benefits from 2 days a week, it is not in the budget. Thankfully, her PT is working with us and making one day a week possible for Bella. Bella has also been cheering again this year with Cedar Cliff Colts! She is loving it! We have an agreement that Bella cheers at the gams until she starts to hurt, so it has been working out so far! She has made it through the first quarter each game and does the half time show! We hope to get Bella in swimming classes after cheerleading is over! Once the insurance company approves the new infusions we will get a date for our first infusion! So I will keep you all posted! Thanks for checking in!

One year since her JA diagnosis......

Often times we celebrate our anniversaries with a celebration, so I have decided that tonight we will celebrate Bella's 1 year JA anniversary. I want to celebrate her strengthen, courage, and determination she has shown this past year. Many adults complain of headaches and muscle aches like it is the end of the world, but kids with chronic illnesses deal with non-stop pain, exhaustion, and complications every day. Most days there is little complaint because they get "use" to their problems. These kids learn to be stronger than they ever imagined they could be. Does Bella have bad days, ABSOLUTELY..... Does Bella get angry, ABSOLUTELY...... Does Bella hurt everyday, ALL BUT 2 THIS PAST YEAR...... Does Bella feel different, ABSOLUTELY........ Does Bella wish she didn't have JA, ALMOST EVERYDAY....... But Bella wakes up everyday and tries her best, tries to be strong and not let this disease get her down, and she still has a heart of gold that has given so much to so many people. I applaud my little girl for being strong and not letting JA define her! We will keep fighting for a cure!! So today I will celebrate her 1 year anniversary of Bella being stronger than JA!!! I love you Bella Mia!!!!

Another diagnosis for Bella

Last week we were at Hershey Hospital having tests done because of ongoing stomach issues and chest pains. Today we got the test results back and she has Gasteroparesis (delayed stomach emptying). The doctor feels that it was caused by a previous viral infection when she was younger. There is no cure but we do have a treatment plan. Bella will start on a medication she will take 4 times a day to help keep her intestines and stomach moving her food properly. We will also be doing a diet change and she will consume smaller meals throughout the day. The doctor did warn me that the medication for this condition is not very good but we will try avenue possible. Bella took the news well today and is looking forward to reducing her stomach and chest pains. I guess having JA wasn't enough for her, she needed a little more of a challenge...he he Hope you are all enjoying your summer!

New Experience= New Friends

Bella was asked to got a Nascar race last weekend. We aren't die hard Nascar fans, but we spent many Sundays watching the races with Pappy because he is a HUGE fan! So, we invited Pappy and took a trip up to Poconos Raceway to spend the day with Todd Peck, who also was diagnosed with JA as a child and still suffers as an adult. He raises awareness for the Arthritis Foundation through his racing(pretty cool, huh??)! We didn't know what to expect but I am here to tell you that it was one of the coolest days I have added to my book of memories! From the moment we arrived at the track we were treated so awesome! Todd's sweet mom escorted us to his trailer and gave us a tour. Bella got to meet his Pit crew and some of his family. They all were so nice to all of us, especially Bella! What we didn't realize how cool the rest of the day would go because we got be in the Pit during practice and the race. That was by far one of the coolest experiences ever! Bella got to help the Pit crew check tires and was up close for the Pit stops. They took the time to explain things to Bella ad interact with her throughout the day. After the race Bella got to ride in the driver seat of Todd's car and drive it into his trailer. By the end of the day Todd had her convinced that Nascar was for her. She already chose teal for the color and her number would be #26(the day she was diagnosed with JA). She has talked about the day so much since we got home. But one of the coolest experiences for me was to watch Pappy smile from ear to ear all day long......I think we helped him complete one of the items on his bucket list. He got to see his favorite (up close and personal) Dale Jr.. Seeing his excitement was priceless. I can not thank Todd Peck and his crew enough for a wonderful day. They made Bella feel so special and showed her that JA doesn't have to stop you from fulfilling your dreams. Todd is living his dreaming every day and spreading awareness for this Arthritis!

Camp Victory

This week I had an amazing week! I went to camp victory (camp JRA)!it was super fun. I got to go zip lining and rock climbing... but I couldn't finish the rock wall because it hurt my ankles too much. there was also a relaxing pool that I went in. In the cabins there was air conditioning and a bathroom. This was very surprising to me because when I go camping with my family there is never air conditioning or a bathroom inside of the cabin. In the bathroom there was a shower, a toilet and two sinks. I also learned how to make warrier bracelets. They look very hard to make but they are very easy. I really hope I can go there next year. After camp I went to the drive ins. I saw the new planes movie. It was pretty good. But after that movie there was another movie which was earth to echo. I didn't watch that movie because I left early because I was in a lot of pain from camp. Also this morning when I woke up I started crying because my ankle hurt really bad. And now it is feel a little better because my mom put my new cream on it. I hope I feel a lot better tomorrow!!!!!

A great start to the summer!

It's been over a month since we have posted because our summer has been filled with many fun events!!! She finished out her 5th grade year with straight A's and earned the Presidential Award for having such a great 4th & 5th grade year! She worked hard and achieved the goal she set out for, we were so proud. She missed 29 full days of school this year and left early twice a week for physical therapy, it goes to show you that if you stay strong and fight hard, you can do just about anything you put your mind to! First, we want to thank everyone who came to Bella's walk and those who donated to help her raise over $3,000!! It was an amazing day and Bella did awesome when she did her honoree speech in front of everyone! So proud of her!! The video her friend Emilia and I made for her was a perfect surprise for her, she loved it!! Check it out on her Youtube page if you haven't seen it yet! Right after school left out she was invited to Hersheypark with a friend from school and she had a blast. She even road the Great Bear for the first time ever!!! We went to visit Judy & PaPa at the beach and got to spend time on the boat and at the beach. It is Bella's favorite place to visit! Then Bella got to stay with our other family in Delaware while Mom & Dad went on vacation. She absolutely fell in love with her cousin SJ and talks about him all the time. She is already asking to go back for another week to stay with our family! We just got back from our annual family trip to OCMD, we stay at Frontier Town. This is the kids most favorite trip every year and it definitely was just as fun as the last time we went! We try to get Bella to the pool a couple times a week to help keep her joints extra mobile and a few other friends also go to the same pool too! We are now preparing to send Bella off to her first sleepover camp, this one is for children with arthritis. The doctors all think it will be a great fit for Bella, so we are going to give it a try. I will miss her so much, but the benefits of being around other children just like her will help her so much. On the medical side, Bella has been doing okay. She has been complaining of jaw pain and her dentist did xrays for us to track any changes in her jaw joint. We will continue to watch the progression of that and see if we need to take further steps. But the dentist said the medications she is on will likely help stop major joint damage. She still struggles with nauseous and mouth sores from the chemotherapy, but the doctor says it is normal. She told us she had one more pain free day (which makes 2 since last August), it may not seem like much, but in our world, it is a VICTORY. Were hoping as all the new combination of medicines start to kick in and work together we will see more pain free days (cross all your fingers and toes). She is still in physical therapy 2 days a week when we are not on vacation. This week we have 3 appointments but the one thing I learned is that these appointments are crutial to the success of Bella's treatment plan. They may seem exhausting but I try to remember that without all these appointments her juvenile arthritis could end up much worse. The constant involvement of the doctors helps us constantly track her medicine, pain levels, inflammation, side effects, and overall health. The whole idea is to slow down the progression of her disease and keep her from loosing mobility in her joints (it's happened 3 times already and it was scary). I do have to say that the relaxed summer schedule and slow starting mornings have really helped Bella deal with her JA much better. Arthritis affects children (adults too) the most in the morning because they stiff and it is hard to get moving. We take one day at a time and try to remain positive for Bella. For the first time ever she asked why she had to get arthritis because it is so unfair. That was by far some of the most heart breaking words I have heard from my daughter because I could not answer that question and I couldn't take her pain away. I am hoping the arthritis camp will help her deal with some of these feelings and show her that it will all be okay! Hope you are all having a wonderful summer!! Thanks for checking in on us!! I'll have Bella post after her camp so she can share all the details!

Last week of school and last week in elementary school........

I never would have thought this day would come, but my baby is going to be in middle school soon (where did the time go?). We are nearing the end of the school year and we are so excited to have a relaxed schedule and freedom to sleep in as we please. Bella will still continue her physical therapy 2 days a week, but it will be nice to not have to get up for school each day. Her physical therapist has decided to have Bella wear knee braces to help with her ongoing knee pain, so we hope to get those this week for Bella. Bella has been having a lot of nauseous from her chemo injection, we are so thankful to have Zofran to help curb the nauseous. The new combination of medicine seems to be working well for Bella and we hope to have her walking most of the upcoming walk, YEAH!!! As I think back to this time last year I realize that life was much similar for us because Bella had not been diagnosed with JA. But at this time they were contemplating a serious surgery on Bella's legs (we were not convinced it was the right choice for her). Thankfully, we hesitated because they decided to run blood work on Bella. Just a couple of days before the Justin Beiber concert in Philly the Bone Doctor told us that Bella tested positive for Arthritis and we needed to see a Rheumatologist. SAY WHAT??? Arthritis??? Oh no, biggie! Boy was I wrong!!!! I remember calling my husband from the Hershey Hospital parking lot and telling him what Bella tested positive for (still with lots of doubt) and telling him it's no big deal. It took about a month to see the Rheumatologist and get our official diagnosis. This is when our life changed forever. I still look back in awe of the moments where I didn't get it. The summer of 2013 changed our lives forever and I will never forget it. I don't think Bella will ever forget her fifth grade year of school because it holds so many events.....two of close friends also went through a lot this year too because one was diagnosed with cancer and the other with diabetes and JA. But these 3 girls are stronger than I could ever be and I am proud of what each of those girls has triumphed over! Those three girls will forever hold a special place in my heart!!! So, as we lead up to the Walk to Cure Arthritis we have done two fundraisers to help rise money; one at Sweet Frog and one at Flinchy's. Thank you to both the businesses for helping us raise money for Bella's team!! Thank you to everyone that has already joined her team and donated money!!! There is still time to join her team if you would like! We hope to see you there Saturday to cheer on team Bella Mia!!!

Bella will be taking autograph's.....he he

So, having JA sucks almost all the time BUT Bella has been blessed with this amazing opportunity through the Arthritis Foundation to be the Youth Honoree for the Walk to Cure Arthritis. Which involved a lot more than we even expected. She got to be interviewed at a Senator's game, interviewed on the local news, and also got to be in a commercial with a few of her close friends. It was the coolest experience she has had to date. Does it make up for the life long disease she will have to live with, NO....but it sure did make dealing with JA a lot easier less week. So here is the video for those of you who haven't seen it on WGAL TV in our area........ Everyday I am thankful for what the Arthritis Foundation has done for Bella and our family. They have given us amazing opportunity to speak about Arthritis and help raise awareness. It has been the best distraction for Bella. I can't thank Doug and Joan at the Central PA Arthritis foundation (and their other volunteers). They have been an amazing addition to our family and Bella just loves them!! So thank you AF for all the support and encouragement! They truly have been our sanity through all of this. Bella overall is making improvements with her new injection. She is having quite a few side effects from the chemo like mouth sores, loss of eye lashes, hair thinning, and her skin is peeling off her fingers. She also is having a tough time in the sun. Most of you know how fair skinned my freckled beauty already is (I guess she didn't get enough of the Italian genes and her Irish Daddy triumphed in that area), so the sun has never been her friend. But being on chemo and Enbrel makes her burn immediately. She has to wear SPF all the time and has to really lather up the sun block when she is out in the sun. She also needs to be wearing a hat, so if you see her out and about kindly remind her to stay protected. Even 10 minutes in the sun is risky for her. She already saw what happens with sunblock on.....burnt and blistered! NOT FUN!!! As we move in to the summer months we are looking forward to a lot of pool time, family vacations, and Bella will be attending a sleep away camp for kids with Arthritis. We can't wait to have a more relaxed schedule which will allow Bella the extra time every morning to move at her own pace, allow her stiff joints gain mobility at her pace and not the alarm clocks pace. She will still continue to attend physical therapy weekly, get her monthly blood work, take her two shots weekly (and other pills), and go see the doctors bi-monthly. But it will be warm, sunny, and fun times ahead. So I hope it is the perfect distraction for her. We celebrated her birthday this weekend by going camping, we invited a few of her friends to come along. We had a blast! She even was able to use her birthday money/gift cards to purchase herself a kayak. So, she is excited that her and Dad can get out of the river this summer and enjoy the water. So, she's not letting JA hold her back, she is taking her adventurous side and not letting JA keep her down for long! The initial shock of my daughter being diagnosed with a forever disease has mostly worn off, some days I still get upset when I see her suffering. But I finally think that we have almost adjusted to our new "normal". Don't get me wrong, I know we will still have our roller coaster ride but I think we have really accepted what we have and finally realized that it won't ruin us. Will it offer many challenges, yes........but we have to stand strong and stay united in our fight for a CURE!! I always remind Bella to Fight Like A Girl...............

Busy week and 1 year older!!!!

It has been such a busy week for Bella and it is only half over. On Monday Bella and I got to appear on ABC 27 Good Day PA to talk about the upcoming Walk to Cure Arthritis. Then on Tuesday it was Bella's 11th birthday! She also got to film a commercial with WGAL TV 8 for the upcoming Walk to Cure Arthritis. She brought a small group of friends to take part in the filming which was a ton of fun and an experience of a lifetime! Afterwards we went to lunch as a group before the kids all headed back to school for their Spring Chorus, Band, and Orchestra concert. Later that night they all performed for the public and it was a great show! As if the day wasn't busy enough, we had a Sweet Frog fundraiser to help raise money for Bella's team account. It was a huge success and more people came out than we expected, so thank you all for your generosity! Your support means the world to our entire family!!!! This has all been a great distraction for Bella. She still has her usual morning stiffness and knee pains but overall the new medication is making a difference. She is dealing with some pesky mouth sores and skin peeling from her medicine but the side effects are far less than the improvement the medicine is making. She had 3 pain free days last week but it followed with a couple of rough days. But we are still quite optimistic that we are moving in the right direction! We love her physical therapists so much....they got her a gift for her birthday too! So Sweet of them!!! Please if you haven't already, join Team Bella Mia for the Walk to Cure Arthritis in Carlisle, PA. If you can't come walk, consider a donation. All money goes towards research that will one day find a cure! We definitely would love to find a CURE!!!!!!!

Lots of exciting events coming up for Bella................

Bella was chosen as the 2014 Youth Honoree for The Walk to Cure Arthritis! Her page is now on the website for everyone to read, so check it out(link is at the top of the page)! She is super excited to attend all the events that lead up to the walk. She already gave a speech at the Kick Off event last week and did a great job giving her speech. I was so proud of her because she is so brave! May 10th she will be interviewed LIVE on Abc 27 Good Day PA. She will also be in a commercial soon and she will get to invite some of her friends to come be a part of that event too. But best of all Bella gets to share her story and educate people on her disease. Being chosen as the Youth Honoree could not have come a better time for Bella. She is struggling with being different because she has JA, being bullied in school, and dealing with the normal pre-teen milestones(which some days are worse than her JA). This is helping her see the brighter side of JA and she is meeting so many new people that are just like her. So many people are reaching out to her and supporting her. Every text, email, and FB/Instagram message you send me is read by Bella. Every single message brings a smile to her face and she often says, "I don't even know them and they are saying/doing that for me?" Thank you to each of you for every inspirational posts that are helping Bella push on and fight hard! Look, someone got a tattoo in Bella;s honor too...HOW COOL!! This summer Bella will get to attend a JA Sleep Away Camp. She is excited and nervous, but ready to meet new people just like her. I think it will be an amazing opportunity for her and it will be one more step closer to Bella accepting JA into her life. Next year there will be an Arthritis Cruise to the Bahamas and we are (fingers crossed) hoping to attend with our family. We will be posting more information about that because anyone can come and it is a fundraiser for the Arthritis Foundation too!!!! The worst part of the disease (besides having the disease) is the emotional roller coaster. There are days she seems to have adjusted just fine and other days where she emotionally falls apart. She gets angry, sad, and confused. She just doesn't understand why she has to have this disease and why she can't be just like her friends(because at 10 being like everyone else is important). Though I go through many of these emotions too, I have realized and told Bella that she was given this disease because she is STRONG ENOUGH and she will be a GREAT ADVOCATE IN THE FIGHT TO FIND A CURE! Some days it is hard to tell her to put her big girl panties on and deal with it....BUT WE DO! We can't let this disease take over. We are on week number three of Enbrel and the shots have gotten easier and less stressful for Bella. Last night was her last dose of steroids and Bella is looking forward to the swelling to go down in her face and stomach (she thinks it will happen over night...he he) Honestly, I love her chubby little cheeks, it reminds me of her when she was a baby. Don't forget to sign up for Bella's Walk and help her raise money towards finding a cure!!

Exciting News!!!!!!!:) by Bella

Today I got really exciting news from my doctor!!! The doctor said my arthritis is improving but I will still have good and bad days. She said that my knee pain was probably not my arthritis. Also she said I just need to take half of my prednisone!!! And stop after 7days. My favorite news is less prednisone because that pill makes my stomach chubby and my face chubby! I was really upset when I had to take that pill because I gained about 10-15 pounds!!! Today at my appointment I saw my weight and since my last appointment I gained 5 pounds!:( I was not very pleased!!!😡:[ Also my doctor thinks I have another problem called Fibromyalgia which is another pain problem in a addition to my arthritis!😡😞:[ my doctor also said I need to wear sun block all the time because my chemo medicine and Enbrel make it very easy for me to burn. She also said I should not be in the sun ALOT. Today I was really sad at school because there was a basketball game students vs teachers and I could not play in it because my knee hurt too bad!!!!!!!😠😠😠😠😠😠😠:[:[:[:[:[:[:[😞😞😞😞😞😞😞😡😡😡😡😡😡😡😣😣😣😣😣😢😢😢😢😢 Also don't forget to sign up for my walk called Walk to Cure Arthritis !!!! Sign up with me on my team called Bella Mia!!!! The walk does not cost any money you just have to make a donation!!! It is on June 7, 2014!😊😊😊😊

2014 Honoree for the Walk to Cure Arthritis is............

Miss Bella Anderson!
She is so excited about the upcoming walk and all the fun opportunities leading up to the event. The first event was last night and she got to speak at the Kick Off event for the Walk to Cure Arthritis. Next she will get to be interviewed on the news in May, then be part of a commercial for the Walk, and possibly be interviewed on the radio. Soon you can ask for autographs from Bella, our up and coming local celebrity! =) I love that it is teaching her some much needed public speaking skills too!

Check out the video on this page from last night. The thing I love the most about this opportunity is that it will show Bella she is not alone in her fight to find a cure for Arthritis. So many people have already reached out to her and our family to offer support and we can't be more thankful. She will meet so many people just like her and people that want to offer her support. Anyone that has a child with an ongoing medical condition knows how important this is for these children. I personally thank each and everyone of you that has texted, messaged, emailed, called, or came (or will come) to an event to support Bella.

Right now we are looking for people to sign up for the Walk on June 7th, make a donation to her team, or help us fundraise for her team. Check out her team page at:



Bella Anderson's Personal Page for 2014 Walk to Cure Arthritis - Central Pennsylvania





There are a couple other fundraising opportunities too.... Yankee Candle Fundraising Dear Friends and family, , My group, ARTHRITIS FOUNDATION, has just kicked off our Yankee Candle® Fundraiser and I need your help! We are raising funds for special programs and materials. Our group earns 40% of every dollar you spend. https://www.yankeecandlefundraising.com/ycfroot/ycfwcgi.exe?_V4=Process&_Func=enterWebsiteFromEmail&publicKey=hj39CzzN3LL9GroYgRKMzxVYxRY2uvu7 to see the exciting collection of America's Best Loved Candles™, candle accessories, flameless fragrance and assorted gift wrap. Shop online 24 hours a day, 7 days a week – everything is shipped directly to you. You need to enter my Group Number 990008785 and my Seller ID Jamie21 in order for me to receive credit. There is also a cruise to the Bahamas in 2015 that is a fundraiser for the Arthritis Foundation. How cool would it to be to go on a family vacation and have part of the money come back to the Arthritis Foundation?!?!? We definitely have this on our calendar for next year! If you want more information, let me know. Thank you all for your love and support!!!!!

So many emotions this week........

As most of you know we have been waiting to get Bella started on a new medication called Enbrel (the injection that will give Bella back some of her life). It is a long process to get the medication because you have to get blood work done and wait for the results to make sure all her counts are high and that she was properly vaccinated. This new medicine also runs the same risks of the chemo injection, it is an immune suppressant medication. So she has to be really healthy to take this medication. So now that we got all the bumps ironed out, we got the insurance to cover it (YEAH), and it arrived last night to our home. It came via Fed Ex in a cooler box, because the medicine has to be kept cold. There was lots of information to read and a long list of instructions for mixing the medication and then injecting it. So, my husband and I jumped in and prepared the injection (it took about 20 minutes from start to finish). Bella watched and learned along with us because she is the type that needs to know all the details too (which we love). As soon as it was time for the injection Bella got really upset and tried to convince her way out of the shot. After 20 minutes if pleading with her we ended up having to restrain her and give her the injection(the hard way). I really thought the cops were going to shop up at my door because Bella was freaking out so bad. We had to give her the injection then because otherwise it would not have been sterile. This is the second time Bella has had a hard time taking her medication. It is hard to see her cry and to see the fear in her eyes. It was heart breaking for me and my husband. The fear of the unknown is what gets Bella every time. It was something new and she just didn't know what she would feel like after the fact. I understand her hesitation, but this medication is necessary to help her live a better life. After it was all over Bella was glad she got the shot and admitted it wasn't as bad as she thought.....she was just scared. So we made it through our first Enbrel injection and hope her MTX injection isn't this intense on Sunday.

I ask myself why Bella was chosen to have this horrible disease and why we have to put our little girl through this? Where we did we go wrong? I took good care of myself when I was pregnant, I feed my kids the best food possible, I limit their processed foods, I make them eat fruits and vegetables and yet my daughter has a disease that causes her so much pain and medical issues. Why can't I take it all away? Why do I have so little control over making her better? So, it my mission to help her in the ways I can........my first goal is to raise awareness for Juvenile Arthritis and help raise money for the upcoming Walk to Cure Arthritis. Now on to the good and exciting emotions of the week, because it isn't all bad....... As you know Bella was chosen to be the Youth Honoree for the Walk to Cure Arthritis on June 7th in Carlisle. She has some really exciting events coming up that she gets to attend and also gets to do a speech/interview. She will get the chance to talk about her Arthritis and how it affects her life. She will get the chance to raise awareness and though she is nervous, I also see the excitement in her eyes as well. I feel that the Arthritis Foundation gave her this wonderful opportunity at the just the right time. Until you live with a disease or medical issue that is life changing, you will know how hard it can affect a person and their family. IT IS TRULY LIFE CHANGING! Bella may not share with all of you the struggles she has each day because she doesn't want to be different, she just wants to be Bella....not Bella with JA. I hope that over the next few months leading up to the walk you will all take the time to come to one of the events she will be speaking at or watch when she is on the news in May and hear her story. Take the information she shares and pass it on so that more people understand the importance of finding a cure for Arthritis. Next Tuesday at 6pm the Camp Hill Giant Community Room Bella will be speaking at the event to Kick off the Walk to Cure Arthritis. Feel free to come support Bella and hear what she has to say. In May she will be interviewed live on ABC 27 news in the morning and I will share that information as we get closer so you can all watch. I am sure that Bella will post all the exciting news coming up soon too.......she told me she wants to tell everyone and it isn't fair that I get to tell all the fun news first.....so that is just my sneak peek for now. Hopefully Bella will get on and post soon! Feel free to join her team for the Arthritis Walk: Team Bella Mia

Rough week for Bella.....

While we were away camping for the weekend Bella got sick with what originally seemed to be a stomach bug at the time. She started complaining of pain in her neck, stomach, and knee early Saturday and ended up feeling pretty crappy by the end of the day. Then in the middle of the night she was kind enough to vomit all over mom (aren't I lucky?). She slept all day Sunday as we packed to head back home and barely ate anything all day. Now it is Wednesday, day three of missing school and still not much improvement. No vomiting, no fever, just pain and exhaustion. She has barely eaten and drinks only when I force the issue. Last night she woke me up three times because the pain in her neck and stomach hurt so much. It could just be a stomach bug that is making her JA symptoms much worse, but I'm not a doctor, so I'm hoping to get some answers soon. When you are on MTX injections (low dose chemo), you become more susceptible to illness and often times it is much worse because your immune system is so weak. I'm hoping this is the case and I can get her back up and feeling good really soon. I have two messages in to her Rheumatologist and hope we hear something soon. I'm not sure what to do for her that we haven't already tried. Have I mentioned that Juvenile sucks and it's sucking the life out of my 10 year old?!? Worst part is Bella was so excited for the camping trip this past weekend and was counting down for a month because she got to spend an entire weekend with her friends, who wouldn't love one huge pre teen sleepover?!?! Poor kid got one good day in and was down for the count. So we are hoping to do a camping trip really soon so she can enjoy all the things she missed out on last weekend, BELLA LOVES THE OUTDOORS AND ALL THE FUN CAMPING ACTIVITES! We could use all the goodvibes and well wishes you have to spare..........

Just a quick post......

The nurse from Bella's Rheumatoligist called today and her chicken pox vaccination took and all her lab work came back perfectly!!! YEAH YEAH YEAH!!! Bella can start the Enbrel injection!!!! YEAH Then the nurses will work with the insurance to get it approved. We will go in for a class on how to administer the drug because it is a bit different the current MTX injection she gets. So I am hoping that by Easter we are able to start Bella on the new medication and see some relief in her pain and inflammation. Please send all the good vibes our way because sometimes the hardest part is getting the insurance company to cooperate. I can't wait to tell Bella the great news when she gets off the bus!!!! Have a great weekend!!!!!

Bella's post..

I love my physical therapy so far!!!! I love my physical therapists because they are friendly, caring, and funny. I have to go to physical therapy two days a week. When I go I get heat on my back, I use the stepper, the wall, clams, and other exercises. They are amazing therapists because they help me and make sure I am feeling good!!!! But as you know I do not feel good every day😊! Like today my leg hurts!!!!😞
Today I go get blood work to find out if my new chicken pox vaccination stayed in my body. They need to know so I can start my new medicine called Enbrel. Enbrel is another injection that will help my JA.
Some days I feel, okay but most  days I am sooooo tired and cranky. Lately I have been hurting ALOT more. I think I hurt more because of the weather and because my doctor is slowly taking me off steroids.
My legs still have the most pain in my body.

When the doctor calls you know something is up....

We have been preparing for Bella to start her new injection (Enbrel). For anyone that has prepared for this, it involves a bunch of tests. Which we did all of them and we were waiting for the call to tell us that Bella was ready to go and start her new medicine. You know, that medicine we raved about because it has the power to take away the pain and inflammation?
Well, as I saw the number from Hershey Rheumatologist come through I was a bit excited. Then I heard the voice of the doctor come through (normally the nurse calls for good news/prescription instructions), which stopped me in my tracks. The news isn't the end of the world but it sure did put a knot in my stomach all night. And make me research the internet for hours.
We found out that some of her blood work came back off track and that for some reason her one vaccination is no longer present (even thought she received it), which is not good.
Anyone that has had their child on chemo or immune suppressant drugs will understand what risk this puts on Bella. It is scary. I would like to order a bubble for Bella, does anyone have one I can borrow?
So the doctor is acting fast and requesting new vaccinations ASAP. So hopefully we can get in within the next day or two. The doctor said she has seen it happen before with other kids with JA, it is still odd but were not the only ones.
So this means that we can't start her new medicine for another month...SIGH....
In 3 weeks from the vaccination they will blood test Bella again to see if her body accepted the vaccination. If not, we have to discuss our options with the doctor...........ugh
Now we have to be even more cautious than we were before and hope and pray that no one is carrying any of these diseases that can cause Bella more problems. Can someone deliver that bubble for Bella??? he he
If that isn't enough to make a parent worry, I don't know what will.......
Keep your fingers crossed.
So today we took pictures of Bella for transformation Tuesday (all the cool kids are doing it on Instagram/FB he he) and we realized that Bella's face has changed so much in 2 months. Bella is quite upset about it. I still think she is beautiful but it makes her sad. The picture below: left is today and right is January.

But Bella did have a great time this weekend welcoming her friend Emilia home from her last chemo treatment.....there was a parade in our town to welcome her home! We were so excited to celebrate this victory with Emilia and her family. Bella rode in the car with Emilia home and it brought a huge smile to her face.

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!