On 2/22/12 I noticed Emmy posturing her hand differently. It looked almost arthritic. When she would pick up things with her left hand, she would use a sweep instead of a pincer grasp. I had her squeeze my hands and the left side was weaker than the right. I took her right in to our pediatrician who consulted with Children’s Hospital in Pittsburgh and they told us to bring her right to the ER so that we could get her the MRI she needed. She first got a CT scan which revealed a mass and then the MRI which confirmed she had a Pontine Glioma or Brain stem Glioma. It is a highly aggressive cancerous tumor that is found at the base of the brain in the pons which controls many of the body’s most vital functions. Due to this it is inoperable and it is not curable. She has been given a life expectancy of 6-8 weeks.
The treatment options are temporary and risky. If any of them were to help, it would only be temporarily and the tumor would return within 6-9 months at which time her body would be resistant to any other treatments. We have been told there is no possibility of a cure for this within the next year. I have contacted St. Jude Children’s Hospital and I will be receiving a call from them on Monday to discuss options.
We haven’t given up hope. We are all praying for a miracle. We will continue to stay positive and fill our time with as many activities as possible that Emmy will enjoy. Next week we will be celebrating her birthday on Saturday and I think Santa may come for a visit on Sunday. She absolutely loves Santa. She is so excited. For now, she is doing well. She is happy, energetic, and loving life. Her smile lights up a room.
We feel so blessed to have such an amazing support system. I am so thankful for all of you. In the meantime, we want to be sure that we can provide Emmy with as much joy as possible with whatever time we have left with her. We know that it is all in God’s hands.
We love you all.
Tammy Mott, Denny, JP, Emmy and Jesse Mott