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......