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.