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......