Once you become a parent you begin to learn how difficult it can be to balance all the things in and out of your control.
For the last few months we've been watching Keira closely for signs of a relapse.
Little things will happen that take us back to when we were in the worst parts of her treatment. We've learned how to cautiously keep moving forward, living and enjoying life as best we can, but it's hard to completely put it out of your mind.
Then more little things happen.
Other people start to see/notice things.
Even Keira will mention things.
One night at check-in Keira told me that, "when I close my eyes, my brain won't stop spinning." She also casually observed that she's been getting a lot of bumps and bruises lately. Our whole family re-adjusts and does our best to keep moving forward, but we've been here before and know that we will need to make a decision on treatment yet again.
For the moment that means a steroid pulse. Keira is two doses away from being done with yet another dex pulse. I stayed home with her today because day two is always the worst for her. She never complains but she just asks for extra "love". We know that the steroids will help her feel better and make the symptoms go away. We don't know if it will truly arrest the OMS antibodies from attacking her brain. That's what keeps us up at night. That's why we haven't slept well in almost six years, but there is nothing we can do except raise money for research.
I'm not trying to be overdramatic but I actually HATE fundraising.
It's awful asking our family and friends year after year to donate to this cause but my fear is that if we don't continue to do so no one else will. There have been plenty of other children diagnosed with OMS since Keira's diagnosis so you'd think there would be lots of families ready to fight for research that might change their child's future.... but sadly that's not the reality.
Naveen and I both work. We don't really have the time or energy to organize and train for all these events but not doing it means giving up... how can we give up on our seven year old?
