This time of year still brings back a roller coaster of emotions and vivid memories of being inpatient at LPCH. We were scared, probably more scared then we have ever been before. We did not know what the future had in store for our family, but we knew early on that no matter what the outcome, we had to do more for this orphan disease.
Keira has always been our inspiration.
To see such a little peanut fight so hard to get better and live her life to the fullest extent possible is all we needed to try to do our best to make a difference for all children that are diagnosed with OMS.
Three years later Keira is still on daily medication and a monthly steroid pulse. She also has friends that most four year olds don't, like her Oncologists, Neurologists, and Therapists (OT, PT, Speech), all of whom she knows by name. Despite all of this, she is still a happy, energetic four year old. Her favorite show is My Little Pony and she would wear her Rainbow Dash t-shirt every day if we let her. She loves swimming and playing pretend. Keira knows all the Lion King songs by heart (as do the rest of us now!) and she is a great big sister to Akemi. We are so impressed by all that she learns at preschool and enjoy hearing her insights into the world. Today we had quite the lengthy conversation about how she isn't sure she wants to go to college because she likes living with her family. She decided that maybe it would be OK to go to college if she could come home at night. :)
Since October 2010 we've come a long way towards raising awareness and research dollars for OMS. It hasn't been easy but we continue to believe that it is what needs to be done and that in Keira's lifetime she could benefit from the research we fund: http://stayclassy.org/teamv
Keira with her favorite doctor - October 1, 2013