Friday, March 10, 2017

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!

Thursday, October 13, 2016

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!!!

Monday, August 1, 2016

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!

Sunday, June 19, 2016

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).

Tuesday, March 1, 2016

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!!!

Friday, November 20, 2015

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 Here is a picture of Bella at her 15th infusion today

Thursday, August 27, 2015

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!