5 Months since her "NEW" diagnosis

And things have gotten a bit more complicated. So, when Bella was diagnosed with her newest arthritis (psoriatic), we had to make a change in medication to effectively treat her symptoms. We started on an injection called Humira and we also kept giving her weekly injections of Methotrexate. After a couple months of taking the Humira we saw that her psoriasis was clearing up and she was beginning to see relief in her joints, awesome news! Then, 2017 hit and her body had a new plan for us! Bella's body began to have a reaction to the Humria and it started to created new psoriasis in new locations (far worse than her original rashes). We have spent the last couple of months trying to find the perfect combination of creams to try and clear up the new psoriasis. Some weeks it works and other weeks it doesn't. When she is on strong steroid cream we can get most of it under control BUT you can only use those creams 2-3 days at a time or it will cause a whole new set problems we don't want. Last week for the 1st time it hit her face, let me tell you that is life changing for a teenager! She tried to convince us to allow her to stay home because she was embarrassed. Thankfully, I was able to convince her that it looked like ache and no one would even know it was psoriasis. I reminded her that 3/4 of her classmates had ache on their face too and now she fits in just fine!!! ha ha She didn't find me amusing, I'm sure! So, if they can't get this under control soon, they will have to change her medication again, back to infusions (this one is called Remicade). In the meantime Bella has been having a new pain in body that we just don't quite understand, it's in her tailbone ( aka coccyx )! Yes, our family is enjoying the use of that word because for some reason we find it to be comical sounding! To our surprise there are joints in your tailbone! So anyway, it hurts for Bella to sit and to go from a sitting to standing position. So our initial plan was to work with her physical therapists, use a special pillow to sit on, and avoid long term sitting. Then we tried a round of steroids to hopefully reduce the swelling in her tailbone joints. Still no success, so she had an Xray yesterday that showed no physical break or traumatic damage. So next week we will have an MRI and see if the arthritis has taken over her Coccyx! If it has, we have to switch medicines because it means the Humira is not working for Bella. It has been so hard the last couple of months because I love my kids' little bums and I'm a bum patter and squeezer and it is so hard to resist (or remember to not do it). Bella is happy because she absolutely HATES when I hand out this type of affection. I JUST CAN'T HELP MYSELF, they are so tiny and cute! SO, we hope to have more answers next week and hope to soon have some pain relief for Bella. She has also been having more issues with her POTS condition as well. You know, because Bella isn't a simple child, she goes big with everything in her life! Within the last week or so she has been having increased symptoms that cause her vision to go black and her arm to go numb, as she is getting lightheaded. After speaking with her cardiologist yesterday we found out these are the signs that her body is seconds away from passing out. Not good at all. Her usual symptoms were lightheaded, dizziness, and fatigue. So, we have now moved up to the next level of POTS symptoms that we hoped we would never visit. It becomes much more serious because once you start fainting you put yourself at risk for injuries. The doctor warned us that Bella must be very careful and try to be aware of her body/symptoms. We will need to make sure she follows the doctor's orders very carefully. I plan on spending the next week doing research and looking for ideas to help Bella. We know a few people with POTS, so I have already reached out to them for pointers and maybe fresh ideas that could help us. I just think it is time to put Bella in a bubble! It is a lot for a 13 year old girl to endure. I can only imagine the wonder and confusion she has going through her mind right now. She wants to be just like every other middle school teenager, and she wants to be able to play every sport that strikes her interest. Unfortunately, she can't. There are just some things she will never be able to do again. BUT, thankfully our field hockey and Lacrosse teams have allowed her to play with her restrictions. Her doctors want her to be able to be active and will allow her to play as long as her body allows her to. Bella is nervous that her medical problems will interfere with lacrosse but were going to give it a try and see how it works out. You don't know how much that means to Bella, because she loves sports. She loves competition and the thrill of the game. She loves to be a part of a team. When basketball and gymnastics were taken from her 3 years ago, it broke her heart. We will keep working with the doctors to find the best care and quality of life we can give Bella. We need to keep her joints moving, her skin clear, and her POTS under control. It is my mission to get Bella in to remission one day! There has to be a cure out there somewhere, it just needs to be discovered! Until then, I will teach Bella the power of strength and courage!

Some days I just don't understand......

How can we remain positive when it seems like things aren't going in the right direction for Bella's health? When we began this journey a little over 3 years ago, we never imagined the list of different diagnoses and treatments she would be enduring. It doesn't matter how many times you're told your child tested positive for something or has been diagnosed with something new, it NEVER GETS EASIER! Today Bella was diagnosed with a 2nd form of arthritis called Psoriatic Arthritis. Her doctor had been talking about it being a possibility but we needed to see a Dermatologist to be certain. Today it became official. Today we got a little more discouraged. So what does this mean for Bella? They will change her treatment plan. Next week will be her final infusion at the hospital (her and I will miss the nurses so much) and she will be switched to a biologic medicine that will be in shot form every 2 weeks (No, Bella is not happy about this at all). We must first take a class on administering the shot because it is a little different than the shot she currently gets. She will remain on the weekly dose of chemotherapy as well. Bella absolutely hates getting these shots and actually tried to convince her doctor to allow her to try bi-monthly infusions instead. I was proud of Bella for speaking up about her own healthcare. But of course the doctor said it wasn't a good plan of action and she needed to try the route that has been proven to work best. Her GI doctor also told us that her biopsies showed signs of Chrone's disease and she had to have genetic testing done last week to help make a final decision on diagnosis. We are anxiously awaiting the results of that test. But, her Rheumatologist told us today that the new medication can help with Chrone's disease too. So maybe the new medication change is meant to be, maybe that can be our silver lining? I just hope that the change brings a little more life back to Bella. She has been in a lot of pain the past month or so and quite fatigued and not herself. So, hopefully the insurance will approve this medication change and she can begin her new treatments mid November. Let's hope that the changes will help improve Bella's overall health. :) So, what can you do to help out? Come run or walk @ the Jingle Bell Run Harrisburg on December 10th to help raise money to find a cure for Arthritis! Join Team Bella Mia & friends to help Bella raise money & awareness for Arthritis! If you can't join us, a donation would be greatly appreciated! Bella got her 1st goal in Field Hockey this week!!!

Mid-Summer update........

Whooping cough is no joke! I didn't realize what this respiratory disease would do to Bella nor did I expect it to last 100 days.......YES, 100 days!!!!! We are out of the contagious stage but we are only half way through her recovery, 49 days to be exact! Let me tell you, it is kicking butt and taking names! Bella really struggles with it some days. The cough is still severe and causes her to vomit......the cough doesn't care where she is, it hits her anytime (yes, in stores, in the car, at the pool, in the ocean...ha ha). You can imagine the embarrassment this causes a 13 year old girl! Here is the worst part.......THERE IS NOTHING THE DOCTORS CAN DO FOR HER TO MAKE IT GO AWAY, WE HAVE TO RIDE OUT THE 100 DAYS!!!! We have to be very watchful of this disease because it can turn into pneumonia and that is risky for a kid on immune suppressant drugs. Washing hands, hand sanitizer, and avoiding sick people is at the top of the agenda!!! Bella isn't one to often tell you she's not feeling good, she's a tough kid. So when she started expressing that she wasn't feeling right to others, we knew something wasn't right. Bella's usual response when she is asked how she is feeling is "good" (whether she truly feels good or bad). So when the response became, "uh, not great", we knew we needed to get her specialists on board! Great way to spend your summer vacation, huh? She is doing a great job at keeping her spirits high and trying to enjoy as many summer activities as possible. But she has been turning down chances to hang out with friends because she just isn't feeling great, so let your kiddos know it's nothing personal....she just needs extra down time! Bella sleeps alot and a day after a big activity she usually lounges around trying to recoup. Thankfully, her friends are awesome and totally love to lounge around with her! So, as school is approaching we are getting really nervous.........wondering how this will affect her schooling and if it will keep her from playing field hockey (which we FINALLY got approval for her to play sports again with limitations). Keep your fingers crossed that we can slide into 8th grade just like everyone else! This past week Bella had 7 appointments, some planned and others to check in our health concerns. It was a LONG week filled with lots of emotions. She had some testing done and will be going through some tests during the first couple weeks of school too. She has a great team of doctors all trying to figure out how we can get Bella's health back to normal. Unfortunately, the whooping cough has really set her back overall. She had to be taken off some of the medications that she needed to feel healthy. The doctors agree with our concerns of Bella's overall health, there are some things out of whack and we are going to work together to try and get her back to feeling good again. Bella's newest diagnosis, POTS, is making improvement with the medications the doctor prescribed, so that is a plus! Which means her blood is starting to flow properly, but the cardiologist isn't 100% satisfied and has increased her doses a bit to see if we can get it moving even better. He hopes the increase will make things move a little better and have her blood flowing in the right directions! Bella's juvenile arthritis has been rough the past month because she hasn't been able to take all of her medications that keep her JA under control. She's a hurting more than usual and she keeps having rashes pop up. She is also struggling with being in the sun recently. After a visit with her Rheumatologist and her Dermatologist, they have told us her Psoriasis is to blame for the rashes, swelling skin, and burning. So we had to add another cream to the mix to try and get it under control. They are allowing Bella to go back on all of her medications this week too! The doctors are also tossing around the idea of making a big medicine change in the very near future. They believe the Psoriasis and JA would respond better to a drug called Humira. It will be an additional shot every other week, along side her weekly chemotherapy medication. They will stop the monthly infusion of Orencia for this medication. Bella doesn't like the idea and is struggling with the idea of adding another painful shot. Shot day is not fun in our house. It is a battle with Bella, she fights us and argues up to the second the shot is given. Quite frankly, it is heartbreaking as a parent to administer the medication knowing it will immediately make her feel awful(but it eventually makes her JA feel better). This next month Bella will have some testing done as we try to figure out some other medical concerns with her doctors.....keep your fingers crossed that we get more answers and we can get her out on the field playing field hockey and in school without restrictions! As always, Bella is being strong and trying to be a normal 13 year old girl. She continues to make me proud everyday and truly amazes me with her strength. I wish everyday that I could take all of this away from her and make her life normal again. I feel like JA has stolen my daughter's childhood. Sigh!

Roller Coaster of Emotions..........

The last month has been nothing short of a roller coaster. You know the kind that jerk you all around and you wish it would stop? So much has gone on with Bella (victories and set backs) that I'm not sure where to begin. First, I have to tell you how proud I am of Bella because she achieved distinguished honors EVERY marking period this year. She didn't let the 38 absences and 13 tardies for appointments get in the way of her goals. It was hard work........she had to teach herself a lot of missed lessons. stay up late to study and complete projects, and get tutoring help from a great friend (thanks Kylee). I have to express something about Miss Bella that some may not always notice, her strength. You always know that a person with a chronic illness is strong and take on alot in their lives. We have to carefully plan out treatments, medication, trips, school, and extra curricular activities. If we don't put thought into all of these things, it could make Bella extremely tired or put her at risk for getting sick or an infection. But there is always those unexpected things we can't prepare for and catch us off guard. Like last week, Bella tested positive for Pertussis (Whooping cough) and we went into panic mode. Most of us had the vaccination for the whooping cough when we were children (as did Bella) and it isn't likely that we will get it. Whooping cough doesn't often present in older children (usually just babies), unless of course you have an immune suppressed child. Bella is on a low dose chemo therapy and a biologic infusion that are immune suppressant and this made her body not strong enough to fight off this bacterial disease. We try to be vigilant and ask people that are sick to stay away, but we also know some things are unavoidable. Like our surprise diagnosis of whooping cough. Bella didn't present the usual symptoms of whooping cough in the beginning stages and the doctors thought she had allergies. As the cough worsened, we decided to take another shot at seeing the doctor. They did a chest xray to rule out pneumonia and found inflammation in her lungs. They also did a test for whooping cough and she tested positive. This is a fast spreading disease and is extremely contagious so they acted quickly to treat Bella. We got a call from the Department of Health 15 minutes after our diagnosis. After a 30 minute conversation I found out everything I could about whooping cough, was told anyone that spent an hour or more in close proximity with her over the last week needed to be contacted as a precaution, they would contact all of her doctors she saw over the last week, and Bella wasn't permitted to travel until the end of her treatment. So the entire family was put on a dose of antibiotics and we had to keep Bella home until she was past the contagious stage.....she is no longer contagious. But she has the most awful cough that makes her vomit. They are strong coughing spells that you can't control. It has also made her extremely tired and makes her eyes swell from the excessive coughing. The nurse told us that it is the 100 day cough and it will be awhile until she is rid of this cough. The antibiotic doesn't cure the whooping cough it only kills the bacteria that is contagious. Great huh? Needless to say, she doesn't sleep well at night because the coughing wakes her from sleep. She is handling it like a trooper and is happy that she can hang out with her friends again finally. I encourage you to look on the CDC website for more information, many children are misdiagnosed. Before all of this we were working on getting her proper treatment for her newest diagnosis, POTS. We had an appointment scheduled with a specialist at CHOP and our insurance refused to pay for this visit. They referred us to a specialist close to home and we went. The new cardiologist told us right away that he didn't specialize in POTS but treated many kids in her office with this condition. We agreed to give his treatment ideas a try and if it doesn't work he will help us get the referral we need. Fair enough. So we tweaked her meds and we are looking into alternative therapy. Wish us luck! You always think that when your child is diagnosed with a life long disease that you have faced the hardest challenge. We now stand corrected. Trying to mend the broken heart of your daughter when she finds out her dearest friend lost her battle with cancer has been the hardest challenge. The day we got the call from her friend's mom was one of the hardest days our family has encountered. Not only did Bella loose her friend, she lost one of her biggest supporters. It's not an emotion I thought I would ever go through with my 13 year old and my other children at such a young age. For the first time a couple of weeks ago Bella had to make her first trip back to the hospital where she use to visit Emilia after her infusions or meet her for lunch at their favorite greek restaurant. It was a hard day, but one of her friends (thanks Noelle) volunteered to accompany Bella to her infusion and keep her company (and had a surprise from Emilia's mom to make the day a little easier). Thank you to her sweet nurses for being a great support system for her too (they all knew/loved Emilia too). I imagine every trip to the hospital will spark these emotions but we have decided to start a new tradition with friends and we will carry Emilia in our hearts (and wrap her warmth around Bella during her infusion). Emilia's parents are close friends of ours, so our hearts ached for them as well. Her brother, aunt, uncle, cousins, and grandparents have all become a part of our family over the last couple years as we all joined together to be a support system for Emilia. Emilia inspired my family to be more compassionate, caring, and loving. She gave me the inspiration to get a group of wonderful ladies together to form HH4E. Emilia brought so many of us together and I am so thankful for the friendships I've gained. We didn't know how important these friendship would be until 1 month ago today. Thank you Emilia for bringing the best out in all of us and for bringing our families together. Though Bella still struggles with missing her friend, she also loves to share videos, pictures, and memories of Emilia with us. I was shocked the day Bella told us she texted Emilia's mom and asked if they could hang out together one day soon. I am in awe of Bella's maturity/strength through this and I'm more thankful that Emilia's family wants to continue to be a part of Bella's life (and Emilia's other friends). Sweet Emilia holds a special place in our hearts that will forever live on. Thank you to everyone who checked in on Bella the past month. I shared every text and message you sent to congratulate her, offer condolences, and all your well wishes. Your support means a lot to her and our family. Don't forget to give blood, it saves lives. You will never know when you or someone you love will NEED blood to survive (that's a plug for Emilia's mom).

New year, new update

It's been a few months since we've last posted. We've had a lot going on with Bella medically and I didn't want to post about it until we had more concrete answers. Bella was referred to a Neurologist for daily symptoms(which has been going on for over a year) of dizziness, ringing in the ears, occasionally blacking out, and overall weird feeling. The neurologist did a few tests and quickly decided to send Bella to a Cardiologist. The cardiologist ran tests and she is being treated for a condition that falls under the POTS(Postural orthostatic tachycardia syndrome) umbrella. POTS is ) is a form of dysautonomia -- or the abnormal functioning of the Autonomic Nervous System (ANS). Her cardiologist has been amazing at explaining this to us in terms that we kind of understand (because I don't quite get how the system works and why). So here is something I found online that explains it better than I could: With POTS, the main ANS malfunction has to do with blood pressure and its response to gravity. When an average person stands their blood pressure drops slightly, the ANS recognizes this and causes their heart rate to increase momentarily until homeostasis is reached. For most POTS patients, upon standing (postural) their blood pressure plummets (orthostatic), causing the heart to work significantly harder to regulate blood pressure resulting in tachycardia, which can be extremely disconcerting. Because of the ANS' inability to regulate this motion, blood isn't able to travel quickly enough to the brain causing dizziness, momentary loss of vision, and other symptoms. Bella is having these symptoms when stretching, standing, and playing sports. So they put a medication to try and curb these symptoms and after a month we have realized it has not made a single change for Bella. Today the doctor called and has decided to try a new medication and states that we may need to also add in a Beta Blocker. The doctor also mentioned that we may need to go to a specialist that focuses solely on POTS and informed me that the one he works with is located in D.C.. So we made a plan to take this new medication for a couple of weeks and see if we have any changes. Then we will decide on the next steps. I will travel wherever we need to get Bella the care she needs. Now, I'm sure you are all wondering if this is caused by her juvenile arthritis or the medication she is on and the answer is, no. She actually started to have these symptoms right around the time she was diagnosed with JA. They were so few and far between that I actually thought it was nothing to be concerned with until last year when they were happening daily. Right now, they have no idea what the cause is. Yes, Bella likes to have problems we can't solve...he he =) That's what makes her so unique. Now, on the JA side, things aren't too bad. The medication cocktail she is on seems to be keeping things under control for the most part. With the change of seasons or if Bella gets sick she will have a flare up. But from where we started 2.5 years ago, we are at a good place. It's not perfect, she isn't in remission and she isn't pain free.......BUT she is more active. In my book that is a small victory. She does feel the affects after increased activity but she just rests and does the things the doctor suggests to help her. She has had 18 infusions(that I usually document with a picture of her taking her infusion "nap")she informed me that I forgot to take a picture. She was just tickled that I didn't have ANOTHER sleeping picture of her to share with everyone. But in my defense we were excited that her friend, Emilia was at the hospital getting her infusion the same day, at the same time (something we've tried to plan and NEVER could make it happen). Don't you worry, I will make sure I don't forget this month, Miss Bella! ;) I'm going to attached a couple of picture of Miss Bella to make up for the lack of photos last month. The first one is of Bella after she got 10" cut off, so she could donate to a person in need of a wig(in Emilia's honor). The second one is with her friend right before their Mini-Thon Dance at school. She is getting so grown up, please stop it!!!

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!

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!

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!!!!!