End of the school year goes out with a bang!!!!!

Before I post about Bella's health update, I do have to brag a little. For those of you that know Bella, it is very important to her to do well in school. It can be a struggle at times because she misses a ton of school (38 absences to date to be exact). You can imagine how hard it can be to keep up on her classwork and homework. Bella worked hard and we had to do a lot of teaching at home to keep her on track with the rest of her classmates. Bella also had a friend help her out a lot throughout the year and would come help her catch up and study with her (so thank you Miss Kylee). I am proud to announce that Bella will be getting an award tomorrow morning at school because she got Distinguished honors all year in 6th grade!!! I couldn't be more proud of her! She worked hard and kicked butt!!!!! We are excited for the school year to end to enjoy some beach trips, many days pool side, but most of all spending time with friends and family. Bella saw the Orthopedic Surgeon last week and was diagnosed with Osgood-Schlatter Disease in both her knees and was told she had bone fragmentation in both her knees. She is having issues with her knees buckling and constant knee pain. At this point, since she is already on many anti-inflammatory medicines for her JA, they can't give her anything else. She will continue with PT and wear her knee braces. The doctor said they can't consider operating on the bone fragmentation until she has finished growing. It was a tough appointment to hear that there isn't much they can do at this point. The doctor told her she has a tough situation because she has JA and knee issues together. It is hard to watch your child hurt and know that there isn't much that can be done. Were hoping the relaxing summer and pool will help keep her knees from hurting as much. Her gastro doctor wants to schedule another Upper Endoscopy because Bella's Gastroparesis is still painful and causing her some discomfort. So hopefully, we can get that scheduled soon to figure out the next steps in finding her relief! Her rheumatologist has increased her steroid dose again to help the infusion medication last longer. Bella would feel really good for about 3 weeks after the infusion and the doctor felt that it may be wearing off and the steroids would help prolong the infusion within her system. So far, so good. Bella struggles with the idea of gaining weight from the steroids and how angry they make her some days. But the benefits are far better, so we just suck it up and deal with it. You will hear that quote a lot with any family dealing with a chronic illness. Bella will be attending an arthritis camp again this summer, she loved it last year. She is still a little nervous about going, but I reminded her how much fun she ended up having and the new friends she met. It is a great experience for her to meet other children with JA and to learn to cope with her disease. We have lots of fun things planned for our whole family this summer and we can't wait for the school year to end on Friday! I hope you all have a great start to the summer! Thanks for checking in!!!

Not how we expected our day to go.....

Yesterday was Bella's 3 month check up with her Rheumatologist. The doctor checks to see how her medicines are working, how the last couple infusions went, and go over lab results. Her labs showed that her white blood counts are low, which means we just have be careful to not expose Bella to people we know are sick (easier said than done when your kid attends public school). They will check her bloodwork again in two weeks to make sure she is not continuing to decrease. Bella and the doctor do a lot of the talking during these appointments because she is the one living with the disease and knows how she feels and what is working. Bella continues to have a lot of pain and mobility issues with her knees(especially her right knee). Her right knee gives out when she is walking. If you remember Bella also has unattached knee caps and has to wear knee braces to keep her knees from dislocating (great thing to worry about at the age 11, huh?) Bella is also hypermobile and her joints like to pop out and bend in ways more humans can't even imagine in their wildest dreams. It is quite a unique situation for someone who has arthritis and should have stiff joints. She is a medical hot mess!!!! Bella goes to Physical Therapy every week to help strengthen her body and work to keep her joints strong. So Bella expressed to her doctor how much pain her knees are giving her and I also expressed how concerned we are for her little knees too. So the doctor ordered x-rays. Bella also expressed her inability to fall asleep and stay asleep at night(this is a common side effect of some of the medicines she takes). So the doctor has suggested giving her Melatonin to help her sleep better at night. She often falls asleep while studying because she barely slept the night before. Quite honestly, pain is very exhausting and though her body and mind are wore down at night she just can't seem to get relaxed and comfortable enough to get a good nights sleep. The doctor also feels that we need to increase her steroid dose right before her infusion. Which has Bella a little upset because she gains weight from steroids and becomes moody. But they work really well for Bella's joints. So, she is a little upset that we didn't let her voice her opinion in that matter. Sooooooooooo, Just a few hours after we went for our x-ray the doctor called me to give the results. Which you know if a doctor calls you that soon, they must have found something. There is obviously swelling (the kid has arthritis, so that is a given) of her tendons but there is also another complication. So we are now being referred to a Orthopedic Surgeon to discuss further steps and work together with her Physical therapist and Rheumatologist to get the best possible plan to help Bella. Unfortunately, the doctor told me that we have to limit Bella's activities and carefully consider sports/activities. Obviously, no high impact sports for her. So right now, this just means that we add another doctor to the mix, more PT, and wait on a plan of action. The doctor was glad that we pushed for more answers, so that we could address this sooner than later. It took me a couple of hours to break the news to Bella because she truly had her heart set to play basketball again this winter. She had to stop playing 2 years ago because of her JA. But the doctor told her that if we got her on the right medicine cocktail, it was a possibility for her to return to basketball. Now, that is no longer on the table. Her knees just are not strong/stable enough to run and jump like you need to in basketball. The doctor even mentioned cheerleading being too much, but we have already signed Bella up to cheer for Cedar Cliff Colts. Thankfully, the group she cheers with has been very accepting and accommodating of Bella's limitations. They allow her to cheer half a game, not tumble, and not stunt. So, we will continue this year with cheerleading with added limitations unless the Orthopedic Surgeon totally protests it. This is just the reality of this disease, you never know what tomorrow will bring. Everyday is a guessing game. Most people don't think anything is wrong with Bella because she looks normal. But her body is fighting her. It is taking away her childhood, it is like she lives in an old person's body. It wearing her down right now. She's tries so hard to be normal, do the things all her friends are doing, and not look different. What preteen doesn't want to fit in and be like everyone else? She has to suck it up and wear knee braces, miss numerous days of school, leave early every week, get a shot of chemo every weekend, and visit the hospital every month for infusions. She often has to answer all the questions as to WHY this is all happening, when her classmates ask. That is the moment when she doesn't feel normal. This round of news really hit home for Bella and I felt her heartbreaking. Mine broke right beside her. Nothing is worse than watching your child hurt. Thankfully, one of Bella's friends invited her over for a night of laughs and silliness. It was just what the doctor ordered. But I am proud of my daughter for being so strong and not letting this disease define her. She truly is an amazing kid with such determination. She missed 33 days of school so far this year and has got distinguished honor roll each marking period. That takes a lot of hard work and dedication to make that happen. So this news may be a set back, but we will make it work. It will become a part of our "new normal" and we will continue to help raise awareness for Juvenile Arthritis and raise money for a cure. Thanks for checking in!

Some days are harder than others...

It's been awhile since we have posted because repeating the same thing over and over each month was unnecessary. Bella still is on the same treatment plan where she goes to Hershey Medical Center once a month for an infusion, she gets a shot of Methotrexate(low dose chemo) each week, take 9 pills a day, attends physical therapy once a week, and sees a chronic illness counselor once a week. This morning reality set in after a week of fun and travel. Bella had a hard time walking down the steps and was in a lot of pain. There is little we can do for her beyond give her antiinflammatory medicine and apply a pain cream. That is not the reality you want to accept for your child. You don't want pain to be a normal part of life at the age of 11. Heartbreak is all I have today.This is not the life I chose for my daughter and she doesn't deserve this. Bella was involved in a sport every season and sometimes overlapped sports, but not anymore. This disease has stripped her of the joys of of sports like basketball which was her life. She has given up things we take for granite like hiking, running 5ks, jumping as Skyzone, and ice skating. She gets invited to so many parties that she can't participate in, which is a hard reality for a preteen. As a parent you show support and stay strong for your child. But in a moment alone you break down because reality stinks and sometimes is hard to find the positive. Its hard to always find the right thing to say to make things okay for Bella, its hard to watch your child hurt and know there is nothing I can do, and it sucks to know this is forever. Days like today are not fair and are not easy. The worry of what tomorrow brings is scary....will she has surgery before she is in high school or will she end up in a wheelchair because the disease is attacking her joints? Some days it is too much...... Yes, I know....find the positive, there is always someone worse off than Bella, and maybe one day they will find a cure. But today she hurts, we hurt, and for now our lives are overtaken by this disease that is taking my daughters mobility, destroying her organs & stomach, and causing her anxiety and stress everyday. But we do have to suck it up and deal with it and know that tomorrow is a new day could have hope......

Things are looking up.......

We haven't posted in awhile because we were busy with the holidays, Bella's Food Drive, and because her JA has been pretty manageable. Bella's new infusion medicine is wonderful. It truly has made a HUGE difference in her life! We still have our ups and down, but there are more ups since we started this new medication. I remember how amazing it felt when I saw Bella do a cartwheel again in my living room (I videoed it because it has been something she couldn't do for so long). Now, the only down side to the new medicine is that is only lasts about 2-2 1/2 weeks. So we are working with her doctor to get this medicine to last longer. Unfortunately, it means increasing her steroid dose. If you remember, Bella gained a lot of weight and had extreme mood swings while taking high doses of steroids in the past. So, we are very cautiously adding more right before her infusion with hopes that it extends the length of time the infusion works. The one down side to the infusion and her chemo injection is that her immune system is very weak. So, she keeps getting sick. Last week we had to post-pone her infusion because she woke up sick on infusion day. The delay of that made for a rough week for Bella. Her legs were hurting her a lot. She missed 4 days of school last week. But she is doing much better this week, now were trying to keep her far away from her sick sister and dad! =) I want to talk about Hershey's Children Hospital because it isn't often you can find awesome health care these days. But our experiences at Hershey have been amazing. The staff is always so kind and helpful. They always make sure that Bella is comfortable and try to make it as enjoyable as possible for her. They have a common area where there are toys, video games, board games, and crafts for the kids getting their infusions. We also get our own private room with a tv and the internet. This appointment we had to take my younger daughter, Chloe because there was no school. Chloe was not excited about spending the day at the hospital but quickly changed her mind once she got to enjoy some of the perks. We also were lucky to have a couple of Thon girls from PSU there volunteering that day too. The Thon girls was awesome, they talked with Chloe and did crafts with her. They also came in to visit with Bella and did a craft with her too. I quickly learned that Chloe had chatted their ears off and told them all about her dogs, her love of animals, and told them many random facts about Flamingos(because that is her favorite animal). She was very excited to hear that one of the girls just took a marine biology class in college and told them that is what she wants to be when she grows up. Bella also found out that one of them was graduating and continuing her education to be a doctor. Bella told her that she also wanted to go to PSU and become a doctor too. So, the girl talked to Bella about what she would need to do when she got older to prepare for college. It was such an AMAZING day for my girls. Hershey is by far the best hospital to take your children. They are wonderful and I can not express my gratitude for everything they have done for my family. If you ever see the PSU Thon students out collecting money at a red light or a shopping center, donate to them!!! They are a wonderful group!!! Thanks for checking in!

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!