Almost two years ago Rheann, my youngest daughter (she was 4 at the time), was diagnosed with undifferentiated sarcoma of the brain. The doctors gave her six rounds of chemo and started her on radiation and she was doing great until her relapse in April 2013. The doctors didn’t have much hope as her cancer had spread down her spine and to the other side of her brain. She was re-diagnosed as Mucoid Spindle Sarcoma of the brain. We were told to plan her services and to get everything ready because she wouldn’t make it through the year. After changing up her treatments and adding a lot of radiation, we are 16 months past her relapse and she is doing great! She is still on chemo, and other than the side effects from that, you wouldn’t know that there is anything wrong with her! We got together with some other parents and a couple of photographers and did a really awesome photo shoot in April this year that has now gone viral all over the world. Yes, I’m talking about the “3 girls” photo.
Our hope as parents is to raise as much awareness as possible about childhood cancer, but for my family we also want to let people know that sarcomas do NOT always adhere to the “norm” and that they can be found anywhere. I know it’s rare to be found in the brain and when you add everything else that this cancer has done it’s been even rarer. If anyone would like to contact me, I have a Facebook page (https://www.facebook.com/fightlikeprincessrheann) set up for her so they can watch her progress or ask any questions. I know when Rheann was first diagnosed there wasn’t any information that I could find other than it’s rare. If we can help just one family out there make it through their struggle then the last two years haven’t been totally in vain.
Right now Rheann is in remission and has gone through 26 rounds of chemo and 50 days of brain/spine proton radiation.
Thank you so much for reading.
If you or a loved one has been impacted by sarcoma cancer, we encourage you to share your story. Sharing your story can be such an inspiration to others who are dealing with sarcoma in their own life and remind us all of the urgency to find better treatments in order to make an impact on the devastation that sarcoma cancer brings. Let your experiences help others become involved with raising awareness!