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!!