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!