Rough week for Bella.....

While we were away camping for the weekend Bella got sick with what originally seemed to be a stomach bug at the time. She started complaining of pain in her neck, stomach, and knee early Saturday and ended up feeling pretty crappy by the end of the day. Then in the middle of the night she was kind enough to vomit all over mom (aren't I lucky?). She slept all day Sunday as we packed to head back home and barely ate anything all day. Now it is Wednesday, day three of missing school and still not much improvement. No vomiting, no fever, just pain and exhaustion. She has barely eaten and drinks only when I force the issue. Last night she woke me up three times because the pain in her neck and stomach hurt so much. It could just be a stomach bug that is making her JA symptoms much worse, but I'm not a doctor, so I'm hoping to get some answers soon. When you are on MTX injections (low dose chemo), you become more susceptible to illness and often times it is much worse because your immune system is so weak. I'm hoping this is the case and I can get her back up and feeling good really soon. I have two messages in to her Rheumatologist and hope we hear something soon. I'm not sure what to do for her that we haven't already tried. Have I mentioned that Juvenile sucks and it's sucking the life out of my 10 year old?!? Worst part is Bella was so excited for the camping trip this past weekend and was counting down for a month because she got to spend an entire weekend with her friends, who wouldn't love one huge pre teen sleepover?!?! Poor kid got one good day in and was down for the count. So we are hoping to do a camping trip really soon so she can enjoy all the things she missed out on last weekend, BELLA LOVES THE OUTDOORS AND ALL THE FUN CAMPING ACTIVITES! We could use all the goodvibes and well wishes you have to spare..........

Just a quick post......

The nurse from Bella's Rheumatoligist called today and her chicken pox vaccination took and all her lab work came back perfectly!!! YEAH YEAH YEAH!!! Bella can start the Enbrel injection!!!! YEAH Then the nurses will work with the insurance to get it approved. We will go in for a class on how to administer the drug because it is a bit different the current MTX injection she gets. So I am hoping that by Easter we are able to start Bella on the new medication and see some relief in her pain and inflammation. Please send all the good vibes our way because sometimes the hardest part is getting the insurance company to cooperate. I can't wait to tell Bella the great news when she gets off the bus!!!! Have a great weekend!!!!!

Bella's post..

I love my physical therapy so far!!!! I love my physical therapists because they are friendly, caring, and funny. I have to go to physical therapy two days a week. When I go I get heat on my back, I use the stepper, the wall, clams, and other exercises. They are amazing therapists because they help me and make sure I am feeling good!!!! But as you know I do not feel good every day😊! Like today my leg hurts!!!!😞
Today I go get blood work to find out if my new chicken pox vaccination stayed in my body. They need to know so I can start my new medicine called Enbrel. Enbrel is another injection that will help my JA.
Some days I feel, okay but most  days I am sooooo tired and cranky. Lately I have been hurting ALOT more. I think I hurt more because of the weather and because my doctor is slowly taking me off steroids.
My legs still have the most pain in my body.

When the doctor calls you know something is up....

We have been preparing for Bella to start her new injection (Enbrel). For anyone that has prepared for this, it involves a bunch of tests. Which we did all of them and we were waiting for the call to tell us that Bella was ready to go and start her new medicine. You know, that medicine we raved about because it has the power to take away the pain and inflammation?
Well, as I saw the number from Hershey Rheumatologist come through I was a bit excited. Then I heard the voice of the doctor come through (normally the nurse calls for good news/prescription instructions), which stopped me in my tracks. The news isn't the end of the world but it sure did put a knot in my stomach all night. And make me research the internet for hours.
We found out that some of her blood work came back off track and that for some reason her one vaccination is no longer present (even thought she received it), which is not good.
Anyone that has had their child on chemo or immune suppressant drugs will understand what risk this puts on Bella. It is scary. I would like to order a bubble for Bella, does anyone have one I can borrow?
So the doctor is acting fast and requesting new vaccinations ASAP. So hopefully we can get in within the next day or two. The doctor said she has seen it happen before with other kids with JA, it is still odd but were not the only ones.
So this means that we can't start her new medicine for another month...SIGH....
In 3 weeks from the vaccination they will blood test Bella again to see if her body accepted the vaccination. If not, we have to discuss our options with the doctor...........ugh
Now we have to be even more cautious than we were before and hope and pray that no one is carrying any of these diseases that can cause Bella more problems. Can someone deliver that bubble for Bella??? he he
If that isn't enough to make a parent worry, I don't know what will.......
Keep your fingers crossed.
So today we took pictures of Bella for transformation Tuesday (all the cool kids are doing it on Instagram/FB he he) and we realized that Bella's face has changed so much in 2 months. Bella is quite upset about it. I still think she is beautiful but it makes her sad. The picture below: left is today and right is January.

But Bella did have a great time this weekend welcoming her friend Emilia home from her last chemo treatment.....there was a parade in our town to welcome her home! We were so excited to celebrate this victory with Emilia and her family. Bella rode in the car with Emilia home and it brought a huge smile to her face.

The appointment: By Bella

     Today at my appointment my doctor told me bad news, that I have to change my medicine. I have to get another shot every week, so now I will have two shots each week. The new medicine is called Enbrel and it could be the medicine that puts me into remission. The good news is the doctor is going start to take me off steroids. That will make my puffy face go away. YEAH!! But it will take two months until I am off steroids.
The doctor also said that the rash that I keep getting on my face could be from Lupus which I have no idea what that is. But the doctor is going to do tests and find out.
I have to get a bunch of tests done in the next few days so that I can start my new medicine.
Today I am really tired and my fingers hurt really bad. My doctor said my fingers and toes were swollen today. She also said my face was really swollen.

    Today two of my friends had important doctor appointments and I am waiting to find out if they got good news. Stay strong Emilia and Noelle!

 

Tomorrow I am going to be n the talent show! I am so excited because teachers from my school are doing the talent show! Last year they did the talent show also. The teachers asked a bunch of teachers to do the talent show. I think last year they had like 14 teachers do it! The exciting part about them doing the talent show is if any of my teachers are doing it and what teachers are doing it! It would be really funny to see my teacher from this year doing the talent show because I could never imagine my teacher doing the talent show with a bunch of girl teachers in short dresses and short skirts. LOL!!!!!

Any way what I am doing for the talent show is I am dancing in 2 acts. My first one that I will be doing is dancing with lemmie sticks! My friend's mom taught and made the whole entire routine. I love my whole entire routine. I think it looks really cool and sounds really cool! My second thing that I am doing for the talent show is dancing with the fifth graders! If you think I am dancing with the all of the fifth graders than you are crazy! I am dancing with the fifth graders that want to dance in the talent show! I also love the dance that I am dancing to with the fifth graders! I really love the song that we are dancing to! If you want to see the talent show it is on 2-21-2014. there is one every year but not on the same days. But next year I will not be able to do the talent show because... I AM GOING TO SIXTH GRADE!!!!!

 

 

THE END

Bella is struggling.......

Juggling life with a kid that has a chronic illness has become quite a task for us. There are so many ups and downs and you are never prepared. Just as you think you have it all figured out, there is a wrench thrown into the plans. Just as I think Bella is doing great emotionally, we get knocked down by a moment of anger/sadness.
As many of you know, Bella is one tough cookie. She doesn't like to show her pain or let anyone know she is upset...EVER! At home we see her frustration/sadness via angry out lashes.
Usually aimed at me, which is really hard some days. I don't allow her to mistreat me because she has Juvenile Arthritis and I stand strong against her angry fits. But when she is done having her meltdown I know we need to talk because this is a sign of frustration from Bella.
If you are on Facebook, you have seen my posts about Bella being sick for the past 2 weeks on and off. It is hard because if she is sick they have to take her off of her MTX injection and that is the medicine that helps control the pain/inflammation. The injections already weaken her immune system so we can't give it to her until she is back to 100% health. So, not only is she feeling sick, now she is back in pain ALL the time again. Plus, her psoriasis starts to flare up as well.
I was waiting for Bella to notice her "puffy" face (her words), that Dan and I noticed a few weeks ago.

Left is current/Right is 6 months ago

It is one of the sad side effects of using steroids to help treat her JA symptoms, facial swelling. Bella is what we call a fashion diva because she loves to dress up, do her hair, and look cute all the time. I knew it was a matter of time before she noticed this change. Boy, did she notice on one of the worst days ever. Her swelling made her lips look(amazing in my book) and her face was very full and flush. Let's just say it did not go over well when she said it out loud and made it a realization.
Last night she totally freaked, which meant Bella verbally went off on me. I should be flattered because kids only mistreat the ones they really love because they know they will keep loving them.
It was a mountain of emotions charging through our house last night. Sorry to anyone walking through our town, you probably heard us yelling at each other...ha ha!!
So on Thursday when we meet with her Rheumatologist we will discuss changing the medicine(which was already brought to the table last visit) and hopefully start her on another injection called Enbrel. Enbrel is supposed to be an amazing medicine for people with arthritis and Bella is finally accepting this path (she refused the idea at the last appt). Keeping my fingers crossed that we get her on the right medicine, therapy, and diet to help get her into remission.

Rough couple of weeks for Bella but some great moments too!

We haven't posted much because I feel like a broken record when it comes to Bella's symptoms and weekly issues. I don't want to be "Debbie Downer" because it's just not my style and we are trying to find all the positives for Bella right now. So we are focusing less on what is wrong and proclaiming the positive achievements in her health care. BUT as anyone with a child with an ongoing medical issues knows that sometimes it is hard to not feel overwhelmed and defeated some days.

This week Bella came down with whatever her Dad had last week(fever, sore throat, exhaustion). Even though we tried to keep Dad away from her and sanitized everything, it still wasn't enough.  It really has shown us that her immune system is so much weaker while on the MTX injections and we need to be as cautious as possible. We do know that the chemo has dropped her white blood count a bit but not to alarming levels. Since she is sick the doctor has taken her off her MTX injection until she is 100%. This is the tough part because this is the medicine that helps reduce her pain/symptoms and now we can't give it to her.  Once we can start again it will be like starting all over from square one. BUT, Bella was quite excited to not have to be stabbed this week. :)

Bella is having many mood swings that are giving us whip lash (the doctor warned us about this steroid side effect) BUT the steroids are doing a great job at keeping most of her inflammation down and her rashes are minimal. So, we think the positives are out weighing the negatives in this situation, so we will ride it out a bit longer and ask the doctor at her visit in a couple of weeks.

Bella is back in physical therapy 2 days a week, which she hated the idea of going back. BUT she loves the new physical therapist because he is funny and makes the work out fun. So we are pretty excited for her. The only downside was this place does not do water therapy which is a great way to work out the joints and not cause strain. So, we decided to join the local YMCA gain and do our own water therapy with Bella, boy is the Y expensive!!!  Plus, Bella and her friend Emilia are going to take swim classes together at the Y as soon as she is recovered from her surgery and battle with cancer (almost over YEAH).

Bella has her good days and bad, but we are starting to get use to the ups and downs. We are finally at a point where we are accepting the "new normal". It's not the life I would want for my daughter (or anyone for that matter) but we are finding the positives as they come and holding on to them tightly!

SOME AWESOME NEWS:
~Bella got an awesome report card, even with missing 10 days of school, leaving early over a dozen times, and coming in late a hand full of time (pretty freaking amazing if you ask this proud mama)!!!
~Bella also got her bronze award in Girl Scouts for her successful Food Drive (over 1600 pound of food collected)!!
~Bella is going to be in the school talent show and dance to the song Brave with her fellow classmates(was asked to hold  sign at the end bc she was one of the kids going through a tough time this year) and doing another number with some of her fellow cheerleaders. If you are free the night of February 21st come see her perform at New Cumberland Middle school at 7pm.

We will have another exciting announcement soon too, so keep watching!!!!

Have a great week and keep warm!!!