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!