Yesterday and today~Bella

Today and yesterday I stayed home and laid in my moms bed. My stomach hurts and my right knee. I feel like I have to throw up. I also have a rash that is so itchy. I kept waking up last night and itching it. I feel so tired.
My friend Maggie made me a bracelet for Juvenile Arthritis it is cool. Thank you Maggie!

Wonderful Weekend and our new journey.......

We wanted to make sure that Bella had a great weekend before she started her Methotrexate (chemotherapy) because we were not sure which side effects she would get from it.
Friday night she got to go visit her friend Emilia, who is in the hospital recovering from a surgery she had to remove cancer in her leg. Emilia was diagnosed over the summer with Ewing's Sarcoma, a rare bone cancer. So, it really meant a lot to Bella to finally get to see her because she has been in the hospital for a couple of weeks now and wasn't well enough to have visitors. Keep on fighting Emilia, we are thinking of you everyday, and can't wait until you come back home!!!! <3<3<3

Saturday we had a relaxing start to our day and then we went to root on her friend, Anthony at his final baseball game of the season. In the last inning he hit a double which was really awesome to see his excitement. Bella thinks he will be a famous baseball player when he grows up.


 

Anthony & Bella

 Later that evening we got to spend time with friends/family carving pumpkins and sitting by a bonfire. Which was a great distraction for all of us.

Sunday, Bella got to participate in her friend Noelle's walk for Diabetes and go to Hershey Park with a bunch of her friends that also did the walk with Noelle. Bella's friend Noelle was just diagnosed this past year with Type 1 Diabetes and has worked hard at raising almost $11,000 to help fund research for Diabetes. AWESOME job Noelle, we are so proud of you!!!!!

 

So after a weekend full of fun we had to slide back into reality and begin our next step in our journey with her Juvenile Arthritis and Psoriasis. We had to begin our first round of Methotrexate (chemo drug). As soon as we pulled up to our house Bella was in tears telling me she was wanted to go hang out with her friends more and it wasn't fair that we had to come home. I really knew that Bella was nervous about beginning her new medicine (we all were quite nervous to be honest) and she even tried to convince me to post-pone her first dose. NO CAN DO, Miss Bella.

She took her 5 pills like a champ and asked to go hang out at her friend Anthony's house for a bit before bedtime, how could I say no!?!?! =) We also noticed a new rash developed yesterday on Bella's legs and stomach. More than likely it is the Psoriasis.

So, how will the chemotherapy effect Bella????.......the question that had me awake numerous times last night and even got Bella a special bed in Mom & Dad's room so that we could keep a watchful eye over her. It is almost lunch time and Bella is sound asleep beside me snuggled up to one of our dogs. Her complaints are stomach ache, headache, fatigue, and hot/cold flashes. These are all normal side effects to the medicine. She has changed her outfit three times already this AM to adapt to the changing body temperatures, took a hot bath, and turned on/off the fan. We were told to expect this and a few other side effects. The thing is with this type of medicine, no one reacts exactly the same so we had to wait to see how her body will react. She is also in a lot of pain today from all the walking she did yesterday, which reminds us why Methotrexate is needed.

I have planned my day to hang at home to work on the upcoming classroom Halloween parties, get last minute details worked out for our Helping Hands for Emilia 5K this weekend, and begin planning my holiday open house for my own business.

Bella has just woke up and asked me to paint her nails......so I need to go pamper my princess. Thanks for checking in on Bella! <3 

 



At my doctor! ~Bella

  Today at my doctor I told my doctor that my medicine was not work. So she said I am going to take a different medicine. The medicine is called chemo. I might eventually have to take shots every week. I only have to take 5 tables of medicine a week. So I probably will take 5 pills on every Monday.
   Also at my appointment we talked about my foot being flat footed. Flat foot is your foot being flat that makes my feet curve in and It makes my ankle, knee, and hip hurts. Today my ankle, and the bottom of my foot hurts.

  

I just can't believe it........

Up until yesterday I was still in denial of Bella being diagnosed with an auto immune disease. I was always hoping that the next appointment would be the one where they tell me they were mistaken and they had the diagnosis wrong. Guess what, it's real and not going anywhere. I told my daughter's principal yesterday that I finally have accepted it (kind of) and let's move forward with her 504 plan (disability paperwork for school). It took me 2 months to finally accept the diagnosis. I don't like it and I don't want it.....BUT it is here.......time to put my big girl panties on and deal with it, right?!?!?

Well, until the doctor made it really REAL today. The moment I realized there is no turning back is when the doctor stated that Bella needed to start on  medication called Methotrexate a chemotherapy drug. Yes, chemotherapy is used in Arthritis patients, shocking to me too! I'm going to try and explain it to you as it was explained to me because I am having a hard time wrapping my mind around it. Chemotherapy is used for children with juvenile arthritis to slow the progression of the disease. They want to slow down the damage the JA is doing to her body. Right now her body is fighting itself and causing more issues that could lead to irreversible problems. So, we are "tricking" her body into believing that her immune system isn't the enemy anymore. CONFUSING, I know!!!!
So Bella will have to take 5 pills once a week and will likely be transitioned to the shots(because they are truly more effective). They will also have her on folic acid to reduce the side effects of chemo. , So, she is on Methotrexate once a week, Folic Acid once a day, Naprosyn twice a day, daily vitamin daily, and Tylenol. Quite a pill box for such a little girl. This is another attempt at trying to slow down the progression of her disease in hopes that one day soon she will be in remission.

The doctor also told us that she has Psoriasis too. She had these pin marks in her nails and a rash. I forget all the technical details, that is why I took Dan along(he gets the technical stuff). Dan will also remember the stuff I forgot. So, now we have that to add Psoriasis to the list of problems.

The doctor noticed that her back now has a slight curve in it and will monitor the back for any changes. Her fingers are now being effected and the doctor noticed changes since the last appointment two months ago. She also stated that some of Bella's pain in her ankle and knees may be from her being flat footed. The arthritis and being flat footed aren't a good combo. She also noticed that Bella's left shoulder and hip are higher than the right side......so we will work with the physical therapist to hopefully straighten her our a bit.
We got the same lecture about keeping her active, but not too active. If she is in pain to rest. The doctor doesn't want her running because it is too rough on her joints. But wants her to enjoy some sports.....it's so confusing!!!
I'm sure I forgot some of the other details the doctor explained....but for now this is all I could wrap my brain around.
We asked all the questions we could think of and got the details we need for now. So now we start the next part of this journey (thanks for that word Anjie). We are nervous, scared, and confused. But WE ARE IN THIS TOGETHER(my favorite phrase for our family and the 4 other families dealing with medical issues right now) and we will fight along side Bella!

About the week

On Monday my therapist said I could do the Diabetes walk for my friend Noelle if I would ride on my electric scooter part of the time. If I hurt I have to stop. Then afterwards we are going to Hershey Park with them.
When I woke up this morning my back was in pain and my knee and ankle.
Tomorrow is my next appointment and I don't want to go because I hate talking about my arthritis.
Thank you for reading, BYE!

Anxious for tomorrow.......

I have never been one to wish my life away, but right now I want it to be tomorrow so that we can get to Bella's appointment with her Rheumatologist. Having a couple of months to read all the information given to us and do some research on my own, I have questions I need to ask. I know that auto immune diseases aren't cut and dry, which means there will be a lot of possibilities......but I want the doctor to help us understand these possibilities. I just read that Bella only has a 17% - 37% chance of reaching remission......SIGH
Bella is still struggling with daily pain, taking all her meds without a fight, attending physical therapy 2-3 days a week, and has tailored her activities to help her aching joints. BUT, nothing is working right now. Each week she is missing school either because she hurts too much when she woke up, couldn't make it through a full day of school because of the pain, had bad stomach aches from the medicine,  or just felt overly exhausted. That doesn't include the appointments she has to go to each week. I hate that she misses so much school and so does Bella. More than anything, I hate to see the emotional toll it is taking on her right now. She has changed a lot over the last couple of months and I feel like she is angry at the world. Who wouldn't be angry when they feel as if all the work they are doing is producing no positive results? Bella tells us that she doesn't think the medicine and physical therapy are helping and she is disappointed. Eventually they will find a medicine that works for her, unfortunately it is a trial and error system that needs to be used. We let her know that the PT is meant to help keep her joints mobile and without the therapy she could end up not being able to walk. The PT is not meant to cure the disease, just make it more manageable. This week at therapy we asked if Bella could walk an upcoming Diabetes Walk we are doing with her friend, Noelle, who was just diagnosed with Type 1 Diabetes. The therapist doesn't like the idea because they are worried about her causing more damage and increasing pain. But, those cute, little, disappointed eyes got a compromise; she can walk some and use her electric scooter for part of the walk. But was warned that if she is hurting she needs to stop and rest her joints. We are so excited to support Noelle and spend the day with her family. It's so nice that the therapists and doctors understand that it is still important for Bella to enjoy her life and find ways to make these things happen even when the disease is winning. I feel like so much is being taken away from Bella right now and all we want is to provide her with the most normal childhood, but now our "new normal" is different. We have gotten very creative with Bella and we are now exploring different avenues for entertainment/activities for her (and our family). I never imagined that I would be thinking about changing plans because we already have an event that will require a great deal of walking and could possibly keep her from doing much the rest of the week. Unfortunately, that is the nature of this disease. Every day is a mystery and each day she wakes up I wonder what the day will bring for her. Yesterday she had a very mild pain day and only complained about arm pains, but woke up today with a lot of pain in her back. I am glad now that I decided to keep Bella home from the local parade (which brought on a huge fight with Bella), because today could have been much worse if she was out in the cold and pushing her joints. One day Bella will thank me for protecting her but for now I am the mom that is ruining her life (yes, her exact words). Tough love sucks, especially when your kid is fighting a battle like this....a forever battle.
P.S. Bella hasn't been on her blog much this past week, I am sure once she logs on herself she will respond to all your comments. The blog is here for her to use when she wants to talk about JA.

No basketball for Bella this year....sigh.......

OH, I forgot to thank all of you that wore blue on Arthritis Awareness Day, Bella was so excited to receive all of your photos boasting your blue attire all day long! I am still trying to figure out a way to get it on her blog......it will happen!!!!
A week from today we have our next appointment with Bella's Rheumatologist, where we will discuss the next plan of action for Bella. Since the first step hasn't helped Bella, they will move us on to the next step. The doctor had given us a packet of information during her first visit that outlined what to expect and the steps each newly diagnosed patient takes. We are all nervous to find out what exact step will be taken and which tests we will do next. Will she get pills or injections....more therapy, less therapy? During the last phone conversation with the doctor's nurse they pointed out that they wanted to x-ray her back because of the increased pain levels. They have already taken x-rays of her ankles and upper legs. So, I assume they will want to do comparison x-rays to check for changes. Bella has added more complaints about her wrist and fingers hurting this week and I assume the doctor will look into that as well.
I have researched a lot about the HLA-B27 that she tested positive for and have found that it is an indicator for another type of arthritis and other immune diseases. The other type is called Ankylosing Spondylitis. Which our doctor briefly mentioned at our first appointment but decided to go with an umbrella diagnosis for her until more tests were completed and we saw how she progressed with her disease. I like this route because it gives them time to fully evaluate her and make sure that we don't jump to conclusions prematurely.
What is Ankylosing Spondylitis? 
Juvenile ankylosing spondylitis is a type of arthritis that affects the spine and the places where the muscles, tendons, and ligaments attach to bone. The disease causes inflammation of the spine and big joints, causing stiffness and pain. The disease can cause erosion at the joint between the spine and the hip bone (the sacroiliac joint), and the formation of bony bridges between vertebrae in the spine, fusing those bones. Also the bones in the chest can fuse.
Some of the symptoms below we have seen in Bella but others not at all. That's why they take their time in diagnosing because so many of the different type of arthritis overlap symptoms.

back pain, usually most severe at night during rest SOMETIMES

early morning stiffness YES

stooped posture in response to back pain (bending forward tends to relieve the pain) YES

inability to take a deep breath, if the joints between the ribs and spine are affected ???

appetite loss NEGATIVE, BELLA LOVES TO EAT...HE HE

weight loss NOT AT ALL

fatigue YES

fever OCCASSIONALLY

anemia ???

pain at the site of attachment of muscles, ligaments, and/or tendons to bone (enthesitis) YES

joint pain, particularly in the legs YES

vague pain, usually in the buttocks, thighs, heels, or near the shoulders YES

eye inflammation that is painful and causes redness and light sensitivity; may have frequent recurrences of eye inflammation YES

organ damage, such as the heart, lungs, and eyes ???

Sorry for the boring post, but the idea is to educate you about JA and I am sure most of you never heard of Ankylosing Spondylitis, I know I never knew about it. It's a possibility, but we will not know for sure until there are more tests. I could be totally be off base with this information too. SO we will see next week.
Bella did have a bit of a heart break this week whens he found out that basketball try-outs were Tuesday night and I did not sign her up. But Dan and I decided that it is best to not sign her up because she is having a lot of pain doing cheerleading. Basketball is much more physically demanding than cheerleading. She is already so disappointed that she can't make it through an entire game cheering. I remember last basketball season where Bella would come home every night after practice miserable and crying because the pain was too much. I just couldn't put her through it again. Dan and I made the decision without talking to the doctor because we think it is best for now. The whole idea is to reduce and prevent joint damage and to keep her from having surgeries. Though Bella thinks I am being the meanest mom in the world by not letting her play one of her favorite sports, I am doing it to help the future of her health. I told her if she goes into remission by next season, I will sign her up to play. Of course that was not good enough. Hearing her friends talk about trying out broke her heart and I could see the disappointment in her eyes.

Taking away things that my daughter loves to do is so hard.............

It will impact entire family.

The doctors, The Arthritis Foundation, and fellow families with JA have numerous times mentioned to me that this disease will effect the entire family. I couldn't image what it could mean for us when they first said it to me. We are the typical American family that is juggling school, work, sporting events, play dates, sleepovers, vacations, and family time.
Each member of our family has commitments of their own and we still keep our schedule pretty normal:
Val is in 9th grade, in cheerleading, and constantly developing her social calendar.
Dan is our worker bee, always trying to fulfill his honey do list, and enjoys spending his free time at the gym.
Bella wants to play every sport possible, over fill her social calendar, and feed the needy with her yearly food drive. Obviously, her sports have been changed a lot.
Chloe is in 2nd grade, spends most of her free time reading and learning, she tries sports but hasn't found her place in the athletic department, she would much rather build a fortress for bugs in the backyard or play house with the dogs.
I spend my days planning our lives, making all these social calendars and sports fit in somewhere, making handbags for my business, and volunteer in my community in numerous projects (right now my current project is Helping Hands 4 Emilia which is raising money for Bella's friend Emilia who was diagnosed with a rare bone cancer).
For the most part there have not been any huge changes in our lives, but there are areas where we all have had to help out or switch around schedules. Val has been so great with making sure Chloe gets off the bus since I take Bella to physical therapy 2-3 days a week at the end of the school day. Chloe has had to sit through a few appointments and always remembers to bring a book to read while we wait for Bella. I happily lessened my load in my business and volunteer calendar to fit in all these extra appointments that Bella has to go to each week. Oct & Nov will be full of many appointments since we have to see an eye specialist, her Rheumatologist, family doctor, physical therapist, and dentist. They will all be doing tests and checking the progress of her Arthritis.
Bella has had the most change because she has had to drop sporting activities, limit her activities, and sometimes sit out. But we try to keep positive and offer her alternatives. Bella has decided to join Girl Scouts again this year.
But the one member of the family that has surprised me the most is Chloe. A couple of weeks ago when Bella was in a lot of pain Chloe rushed off the bus to go check on Bella after school and offer to get her a drink and snack. The next week she came home with a drawing for Bella which was the Blue Ribbon for Arthritis Awareness. Then, just last week Chloe came home with a card she made for Bella at school signed by her teacher and classmates. The card below says: My sister has Juvenile Arthritis. She needs to be careful because when people are sick it makes her arthritis worse. There is no cure for juvenile arthritis that means that Bella will have juvenile arthritis forever. To: Bella From: Chloe
 I am amazed because I never sat Chloe down and explained to her what Bella had or what it meant. But during our conversations with Bella she quietly listened and obviously took notes. Chloe is a smart little girl and has a kind heart. She didn't need to be told to help out or care, she just did it. She melts my heart.
So for now, we all have tailored our schedules a bit to fit in the changes, we still are still going strong, and fighting along side Bella. In the end, it is Bella that struggles the most.........but were a family and we're in this together!

About my day!!!

Today I am feeling a little rough. My ankles, back, and right knee hearts. today I had s much pain that I went home early. My friends dad got me this amazing soup from Isaac's. it is the best soup ever!

What are the odds???

During the last 5 months our little town has been bombarded with childhood disease/disorders, all of which are friends of Bella (and Bella). I still have a hard time wrapping my mind around how and why this has suddenly happened to these young girls. Obviously, Bella was diagnosed with Juvenile Arthritis, her other friend was diagnosed with Ewing's Sarcoma (rare bone cancer), another friend was diagnosed with Type 1 Diabetes, and one was diagnosed with Epilepsy. These girls are not only beginning their journey through puberty, but now have to deal with life long medical issues. These girls have spent more time at doctor appts, tests, therapy, pharmacies, and have taken more pills/shots than I have my whole entire life. The courage I have seen in this group of girls is remarkable, far beyond what you would expect from pre-teens. I admire their strength and ability to take on adult responsibilities.
I would never wish any of these medical issues on anyone, but I am glad that these 4 girls have each other. They are not alone in their battle, they have each other. When no one else understands their pain, frustration, and victories.....they can turn to each other for support. I am grateful that Bella has all of these girls on he side!

They will "FIGHT LIKE A GIRL" until there is a cure!

Ladies, always remember that, "We are in this together"!

Bella's Post Presentation

  I want to thank everyone for all of the cards, gifts, and get well wishes on line! The stuff made me feel happy because I feel like people finally know how it feels like. I did my presentation in my class yesterday. It was a little weird because I was nervous. I showed my class my video me and my mom made!! Then I told them facts about Juvenile Arthritis. Some of my classmates asked me questions. It makes me feel happy that I did it because now they know what I am going through.
Today my ankle and my hurt a lot, I woke up in a lot of pain today. The past few days I have felt really really tired. I really wish my pain would get better....THE END!

 

A little afraid of the unknown...

The one thing that is so hard to grasp with this disease is the unknown, each day is different and we don't know what to expect. We can't plan for a bad pain day, we just have to accept it when it arrives. Mornings are hard for Bella because she wakes up in pain and stiff every morning. Getting out of bed is a challenge each day. We are trying different things to try and make the morning transition easier for her. Once we get it figured out this disease will throw us a curve ball and we will be back at the drawing board because that is how Juvenile Arthritis works.
The other night Bella and I had a talk about JA and it is clear to me that she is sad and scared. She doesn't want to talk about it much and is storing up most of her feelings. But she did open up a little which brought me to tears in front of her for the first time since she was diagnosed.  She told me she is afraid of never being out of pain, afraid of what the next round of medications may do to her, and nervous that she may wake up one day and not be able to walk. Moments like this make your heart break as a mom. It is the first time that I can't fix it for her, I can support and guide her, but my band aid won't work this time. My daughter's future is now in the hands of doctors and I have to put my trust in them. I have to encourage my daughter to stay positive even when I am just as nervous and scared as her. If we don't follow the doctor's orders we could cause damage to her joints, organs, and expose her to other issues. My best advice to my daughter was that we are going to fight until we get into remission, we will do whatever it takes to help her be pain free, and we will educate as many people as we can in hopes that one day there is a cure. Bella is strong, courageous, and will accomplish things I never imagined possible. My short term goal is the day this will not consume our lives.
As Bella wrote about in her own post, she will be doing a presentation Friday to her class to educate them on Juvenile Arthritis. We gathered information (tricky way for mom to get my stubborn daughter to learn more herself), picked photos, and made a video. During our research (also briefly explained by the doctor) we found out that one of the medications Bella will need to take is a mild form of chemotherapy. That was hard for Bella to hear because one of her dearest friends is battling cancer and taking chemotherapy. Bella sees how it has effected her friend and she is worried for herself. I explained that the side effects are minimal and no matter what happens we will work it out.
Thank you to everyone who posts on her blog, she looks every night to see what everyone is saying. She told me it is her way of talking about her feelings and it make her happy!
So, check out her video below and let us know what you think. <3<3<3

 

What I am thinking!

  Today my neck hurts and my right knee. I was just at cheer from 6:00 till 7:30. I practiced my hello cheer and my cheers. We didn't practice our dance because we are really good at it. The song we dance to is Power by Justin Bieber and Will I Am. I love that song but I like Justin Bieber more. my mom and I were talking about my arthritis and I got scared and nervous because I can get even more diseases.  I was about to cry because my mom was crying! My mom and I decided to make a video so people would stop asking me questions. I am going in with my mom to present it in my class. I am a little scared because I get nervous when I am in front of people. When I get nervous I mess up the whole thing but hopefully my mom will correct me.