Our world came crashing down this September, 2019. Like any other day, Kyra was playing with her toys when we noticed she wasn't really using her right arm. We figured it was something minor but rushed her to the ER just to be sure. The doctors performed every test imaginable (which was heart breaking because she was so scared) looking for the problem. And then the doctor came out and basically ended our world, Kyra was officially diagnosed with a brain stem tumor known as DIPG (Diffuse intrinsic pontine glioma). A very rare aggressive cancer that attacks the brain and body functions. The next part was worse, we were told that there is no cure and no hope for our beautiful baby girl. I can't begin to tell you what this has done to us and our family.
She's been so strong during this ordeal. She never loses her smile and her spirit even though shes been through so much. Last night she said 'Mommy, my right arm is broken but my superpower will fix it'. (We have been calling the PICC line inserted in her right arm her "superpower".) I want to be like her, to be so strong even during all the treatments and things she must endure. Doctors have given her 9 months to live, but in my heart I know she will be the miracle and will beat this horrible disease. She can't leave us.
What we've learned about DIPG:
DIPG is a rare type of tumor, with less than 300 cases reported each year. There is no known cause (some believe to be genetic mutation), no known cure, no chance of survival. This pediatric cancer strikes young children less tha 11 yrs. almost exclusively, with less than 10% surviving two years following diagnosis and less than 1% surviving five years.
Surgery is not recommended due to the location of the tumor and our current hope is radiation therapy for 6 weeks with sedation required everyday. Kyra is in her 2nd week of therapy. Radiation is not a cure but will slow the tumor.
What your donation will go towards:
After radiation therapy Kyra will attend a DIPG clinical trial with the hope of defeating the cancer. Unfortunately, this clinical trial is very expensive, and because it's a trial our insurance will not cover it. This trial is our hope for Kyra, it's the only hope we have. It's a chance for her to beat this nightmare. As long as there is a chance to save our baby Kyra we will fight, and we thank you and appreciate you for opening your heart to her.
If there are any funds not used for Kyra's medical expenses we would like to donate them to the study, research, and defeat of this horrible child cancer. During this nightmare we found out that there is very little research and studying being done on this cancer. This cancer is so aggressive that the medical field basically doesn't see the long term benefits of trying to find a cure. In Kyra's name and all the other families we have spoken to going through this, any remaining funds will be donated to dipg.org.
Thank you again for visiting Kyra today. Please spread the word and help us give Kyra a chance at winning this fight. Be sure to follow Kyra as we will keep this page updated. We thank each and everyone of you from the bottom of our hearts.
Her loving parents
Everyday Kyra is put under sedation for her radiation treatments. She dreads going to the doctor but she still manages to smile after treatments.
- Johnny Hall
- Yumi Kawai
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