Emilie's Cure
Hi! Emilie is our incredible, amazing 9 year old daughter. On September 9th of this year we were hit with news that no parent should ever hear. She was diagnosed with the worst possible disease...a DIPG (Diffuse Intrinsic Pontine Glioma) which is a deadly brain tumor and the prognosis is about as bad as it can be. Approximately 50% of kids do not make it a year past diagnosis and 90% don't make 2 years. Time is not on our side and we are in the fight for her life! Our options are limited...
Emilie has been so brave through all of this. As her picture shows, she loves swimming and everything was absolutely normal. This past year she joined a swim team and began having headaches in the water. At first, her mom and I didn't think too much of it because we have allergies and get headaches all the time. But, they kept coming so we saw a neurologist. An MRI later and Emilie was in the hospital. She has received incredible care at University Health in Shreveport, St. Jude and Le Bonheur in Memphis. She has bravely faced 2 surgeries, completed 30 treatments of radiation without being sedated, and said "Just do it" to countless needle sticks. The worst has been the physical and emotional devastation of steroids and some of the disabilities from the effects of the tumor. Yet, through it all, she laughs, plays and defiantly tries to be a normal 9 year old girl.
If you read about DIPG, radiation seems to be the only treatment, but it is not a cure... there is no cure. We are now at the point where we are forced into a real life game of "Let's Make a Deal" where we have to choose between what's behind door number 1, 2 or 3. This means finding the doors, qualifying for them and figuring out which door is the best for Em. That has been an impossible task for her mother and I. But, we have narrowed them down and are still waiting on consults.
This is where we need you. We have been researching options from San Francisco to London and everywhere in between. A couple are clinical trials where we will need to pay for travel, hotel, food etc... There is another procedure where we won't qualify for the trial, but could pursue it on a compassionate basis but based on reports, it is extremely expensive. It also may be the best hope for saving Emilie's life. Even though we don't have a decision on where we are going, we don't have any time to waste. We've been told that after initial treatment, this particular cancer comes back fast and mad. So, we have to launch this campaign now.
Our daughter is amazing and if anyone can beat this terrible monster, it is Emilie. We know what the statistics say... less than 1% of children make it past 5 years. But, we remain defiant! We could never repay the generosity and love that we have received, but we thank you all from the bottom of our hearts and hope to pay it forward and help end all of childhood cancer one day.