May 8, 2008 - August 27, 2019
Diagnosis: DIPG Brain Tumor
Theme: Lion King
Due Date: July 1, 2019
On November 18th Savannah was vomiting and having trouble urinating. We thought it might be a kidney issue, and took her to Riley Hospital to be checked. They asked a series of questions, and said a MRI was needed. They did the MRI and that's when they found a tumor on her brain stem. On November 19th Savannah was diagnosed with a DIPG tumor. There hasn't been a child yet to survive this type tumor. It is inoperable, and there is very little research being done.
Savannah began 30 radiation treatments over a 6 week period. The last treatment was on January 21st. On January 31st she had another MRI which showed no tumor progression. Other symptoms appeared during the 6 weeks. She developed hearing issues and began having difficulty walking. Nausea ... thought to be caused by brain swelling, caused her to need steroids.
On February 1st Savannah was enrolled in a clinical trial at Cincinnati Childrens Hospital. The trial began on February 4th, and we travel to Cincinnati every 2 weeks for follow-up and blood work. She is dealing with right-sided weakness, but is doing OK.
The 3rd week in February Savannah had her Make-a-Wish trip to Disney World and got to stay at Give Kids the World. That is such a magical place. We will be celebrating her 11th birthday in May. I just want to give Savannah the world with what time she has left.
"The quilt that the ladies at Love Quilts USA made for Savannah is absolutely amazing. We saw it for the first time when Savannah did. Even knowing what the theme was I never could have imagined it would turn out so fantastic. I know what hard work goes into making something like this, and I can’t tell you how much Savannah and my family appreciate it. Our family has always shared a love for the Lion King. This quilt will always be special to us. Thank you so much."