I know it will get better, BUT.....

This has been a tough week in the Anderson house. I'm sure it has a lot to do with the holiday because even for a healthy family it adds additional stress to the mix. Since the start of the week was consumed with Bella feeling pretty crappy from the chemo, it lead to a chaotic end of the week. I spent a couple of days going back and forth with her doctors trying to find a plan of attack for this weekend's round of chemo. We are trying to make it so that Bella does not miss too much school but also still have the ability to have a social life (it is one of the most important parts over her overall wellness). We could give her the chemo Friday and allow the weekends to be consumed with all the side effect issues but then she would probably start feeling left out and miserable from lack of social interactions. So, we have decided to make Saturdays the chemo days for Bella and if she has side effects the worst will be on Sundays and maybe Monday. It seems as if the first 2 1/2 days after she takes the dose she feels the worst. She was tired all week and by last night she was totally wiped out. But they say that her body could get use to it, hopefully.
But the doctor also wants us to consider switching Bella to injections instead of the pills. They are going to add one more preventative medications to the list this week to help with side effects. They are willing to give the pills one more week. They will teach us how to give the shots and from what I heard, after the first time it is no big deal. So we will see.

When we get crazy busy in our lives it is easy to forget that Bella has an auto-immune disease because she doesn't always look like something is wrong with her.....but last night was a quick reminder of what we are up against. When my 10 year old asked to go home to bed less than a hour into trick or treat, I quickly was reminded how the auto-immune disease if effecting her life. Not many kids would bail on one the most exciting days of the year mid way through. What kid doesn't want to come home with bragging rights to the largest sack of candy collected? Halloween is one of our favorite holidays because we normally host a party and haunted house for the kids and this year it wasn't possible. All because we were consumed with doctor appointments, therapy appointments, and mounds of paperwork we have to fill out for insurance, doctors, and the school. Plus the increased cost of medical care for Bella, left us with surprise bills and copays. I know eventually we will sort it all out because we always do. For now, we have to make a lot of changes in our lives. So, please don't be offended if we start saying no and attend less activities.....we just have to refocus our time and energy until we can fully adjust to dealing with a life long auto-immune disease.
The one thing that Bella wanted this week when she felt crappy from the chemo was for mom to lay next to her and snuggle. All she wanted was my undivided attention and I was thankful that I was able to give it to her. So, I am taking this cue from Bella and realizing that the Anderson's need to slow down and make extra time for each other as a family.
Wish us luck on this week's round of chemo and pray that Bella's body will be more accepting to the treatments.

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.