First Infusion

On Tuesday Bella went for her first infusion at Hershey Children's Hospital. We weren't sure what to expect so we were a little nervous. But the staff at Hershey is awesome. They explained everything to Bella step by step and made her so comfortable. Bella gets her own private room with a flat screen TV and access to the internet. There are movies, games, and television for her to watch. They also have a lady go around offering crafts, games, and activities to keep the kids busy. Bella also got a new blanket and pillow case made by awesome volunteers. The infusions took about 3 hours but the medicine that they give before the infusion made her super tired. So about halfway through she fell asleep and when we were home she slept the day away. We brought school work along for her to do but obviously she can't work and sleep at the same time. So we have spent the week trying to catch her back up to speed. This year Bella started middle school and along with the new freedoms and class changes comes more responsibility. It has been quite a juggling act for Bella. Missing days from school for appointments and now infusions make it tough to keep up some days. But I do have to say she is trying to find her footing in middle school and working out a few quirks. Overall she is still getting awesome grades with a couple of snags along the way. She is learning that she has to work a little harder when she misses school and allow herself time to study a little more. I know she will work it all out, it will just take some time to get use to the new responsibilities of being in middle school. Bella is hard on herself and sets her bar high, but some days I think she makes herself nuts putting her expectations so high. I know one day it will make her a great doctor(if you didn't know that is what Bella is determined to be)and she will achieve so many great things in her life with this type of determination. But some days I wish she would just be a kid and accept that perfection isn't necessary all the time. She is still doing cheerleading and each game her goal is to cheer half of the game and the one game she cheered the whole entire time!! She was hurting a little bit the next day, but was quite proud of herself. I hope there are many more of these proud moments as we embark on the new treatment plan. We have had zero side effects to the new medicine, so that is awesome news! Keep you fingers crossed that we found the medicine that puts Bella into remission. Her goal is to be playing basketball this year, so cross everything you have to cross!!!!! Her next infusion is in a week and a half and we hope to be a little more prepared this time since it will be our second round. Have a great weekend and thanks for checking in on Bella!

Not how I imagined my daughter's life

I know life is full of curve balls and you have to make the most out of what you have but some days I truly don't understand why things have turned out this way for Bella. My husband tells me to stop trying to figure out why and just focus my energy on finding a solution. I do try my best to fight hard and work towards making her quality of life the best I can. BUT some days I do get down, I cry, I get angry, and I wonder why?!?! At the end of the day my daughter (or any child) does not deserve this life. Pain is so hard to deal with, exhaustion over takes her some days, and the constant stomach issues wear down her body. But sometimes the hardest part is the non-stop appointments. We drive to Hershey so much, I do joke with the doctors that I don't mind because I can go shopping at the outlets afterwards. But lately I've gone to Hersey so many times that I have run out of money for the outlets (ha ha). So as some of you already know the doctor has decided to change her treatment plan a bit. She will be doing Orencia Infusions at Hershey Children's Hospital, which starts out t every 2 weeks and changes to monthly. She will stop her Enbrel injections but She will still get her chemo injections weekly at home. The doctor has added Naprosyn back into to her daily medications in the morning to help with her morning stiffness. Of course, we still have the medicines that will help reduce the side effects of chemo and her new stomach medicine. There are also going to be changes to her 504 disability accommodations at school because the arthritis has moved into Bella's fingers and wrists. Bella even shocked me at the doctor's the other day when she told her that she is having tingling in her hands and feet. She also told us that some times she feels as if her feet are too weak to walk on. That was a moment when I had to hold back the tears. It was the moment I started to ask WHY, why Bella? Bella has already had to give up tumbling (have you seen how flexible my daughter is, she is gifted at tumbling) and basketball which broke her heart. Bella begged the doctor to allow her to go to Sky Zone, the newest craze in our town because it is a ton of indoor trampolines. The doctor told her to stop tumbling and warned that trampolines are had of kids with JA. But Bella LOVES it. The doctor actually gave her the go ahead to give it a try with a very stern warning......if it starts to hurt, STOP. If it hurts afterwards she then knows it's not the best idea to do it again. But I saw the doctor struggle with this request from Bella but told us that sometimes the quality of life needs to be thought of too. Since the insurance company is not going to pay for physical therapy anymore, we are putting Bella down to one day a week. Though she benefits from 2 days a week, it is not in the budget. Thankfully, her PT is working with us and making one day a week possible for Bella. Bella has also been cheering again this year with Cedar Cliff Colts! She is loving it! We have an agreement that Bella cheers at the gams until she starts to hurt, so it has been working out so far! She has made it through the first quarter each game and does the half time show! We hope to get Bella in swimming classes after cheerleading is over! Once the insurance company approves the new infusions we will get a date for our first infusion! So I will keep you all posted! Thanks for checking in!