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!!