Spoiler alert: JA is still in the house

Yesterday at Bella's 3 month check up at the Rheumatologist I was quickly reminded that JA is not leaving anytime soon. When the nurse asked Bella if she was in any pain, she immediately responded with a "yes" in my knees. The nurse asked her to rate it from 1-10 and she said 5. That number and response slapped me in the face, not because it was the first time, but because it is constant response. I instantly felt overwhelmed for Bella because I could not imagine a life of constant pain. Waking up everyday in pain sounds awful for a 12 year old girl. I hate when I have a sore muscle for a couple of days and my daughter has been living in pain daily for YEARS!! A good day for Bella is when ONLY her knees hurt because many days she has multiple joints in pain. It takes a strong person to wake up everyday and conquer it like the pain isn't there. To put on a smile and rarely complain to people about her problems, that takes super powers. We have days where it is too much for Bella and it feels like a battlefield of emotions at home. We try to keep Bella positive and hopeful for the future. Lately, Bella has been quite discouraged and struggles with the real truth... There is NO CURE for Arthritis and the end is not in sight. The Rheumatologist does a great job at offering us different treatment plans to try and keep Bella the most comfortable. We even allow Bella to have a decision in the treatment plan. The most discouraging words we have recently heard from the doctor were, "This may be the best it ever gets for Bella". To know that the treatments that helped other children go into remission, did not have the same effect for Bella. But the one good thing is that her disease is not getting worse right now, it's just not getting better. We tweaked her medicine bit and increased her dose of steroids (roid rage alert) on a trial basis per Bella's request. We'll see what happens until our next 3 month checkup. We added two new doctors to the mix; a Dermatologist and Neurologist. She has been diagnosed with Psoriasis and they are tossing around adding Psoratic Arthritis to Bella's list. But we aren't rushing into anything until we try a few skin treatments. We have quite a few appointments in December for new tests and regular maintenance. So we will keep fighting for a cure and if you'd like to help come join us at the Jingle Bell Run on December 12th. Join Team: Bella Mia http://www.jbr.org/faf/search/searchTeamPart.asp?ievent=1139398&lis=1&kntae1139398=4C49ABC4C6154751A57329A98D0EEDDD&team=6583613&tlteam=6383374 Here is a picture of Bella at her 15th infusion today

JA Anniversary: 2 years later

So yesterday was Bella's 2 year anniversary of being diagnosed with JA. I'd be lying if I said it was an easy journey, because it has been the biggest roller coaster ride of my life. Bella's summer two years ago was spent practicing for the upcoming basketball season and taking tumbling lessons. All that came to a quick halt when she was diagnosed. Instead our first week of school was spent going to doctor appointment, getting blood work done, and setting a plan to get Bella's progressing disease under control. It has been two years full of educating ourselves and learning so much from her doctors. We have always kept an open line of communication open with Bella and we like her to be able to have input on her treatment choices (where appropriate). The last 6 months have been a struggle for Bella and she finally realized that her JA is here to stay. I'm not sure what finally made the reality set it, but Bella is talking more about her disease to me and her close friends. But hearing how defeated your daughter feels is heart breaking. Bella has openly told us that she feels like she will never feel pain free, she feels like she will always be different, she feels like no one really understands what she is going through (except for her other JA friends), she is frustrated because she doesn't feel good most of the time, and she is upset that can't play basketball and do gymnastics. Yesterday she asked me to proof read an essay for school and she wrote openly about her disease. A piece of my heart broke reading her words. Everyday I wish I could take this disease from Bella. I always tell her that the challenges in life make us stronger and one day she will she will do great things. I feel like her desire to be a doctor became stronger after she was diagnosed, so that may be her silver lining. On the medical side of things, Bella will be seeing a new doctor to help get her rashes under control. She is still having issues with her knee giving out on her daily. So she is also seeing an Ortho surgeon. So we have been pushing her to wear her knee braces everyday to help keep her stable (the struggle that comes along with getting a pre-teen to wear braces to school is awful!). She still is getting her monthly infusions and they help for 2-3 weeks and then it wears off. The doctor has decided to put her on additional steroids to help keep her symptoms at bay. Steroids come with all the things Bella hates; weight gain, trouble sleeping, and anger. But they help her feel better, so we just chug along and make the best of it. She still does weekly chemo injections and takes 9 pills a day. Though Bella doesn't feel 100%, this regimen has made improvements in her health. Some weeks she does feel awesome and we love seeing the old goofy Bella running around. We have had to cancel plans because she was having too much pain, but we always tried to find something just as fun to do with her friends. Bella had a great summer and is enjoying the first days of school. I can't believe that she is in 7th grade!!! Bella has set her goals higher this year because she wants to make Junior National Honor Society. I told her if she gets Distinguished honors each marking period like last year, she will have no worries! Thanks for checking in! HERE IS A PICTURE OF BELLA ON HER FIRST DAY OF PRESCHOOL AND 7TH GRADE!

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!