Imagine you are sixteen.  It is late April. You've just finished performing in a play you've been rehearsing for months.  Feelings of magic and wonder are fresh in your mind after recently attending a formal banquet similar to prom.  Finishing Honors Biology and Algebra II is on your to-do list. You are a normal teenage girl.  You have no idea in a couple weeks life as you know it will cease to exist.  You have no idea, but next year at this time, you will no longer live on this earth.  You have no idea, but the monster of monsters, the reigning champ of bad guys, is camping out in your brain. He's been hiding out, waiting. His wait is almost over.  He's ready to take you down, and he is feeling confident. He knows your arsenal is no match for him. He waits, while you go on living the last of your "normal" teenage days in ignorance of his existence.

The monster is D.I.P.G. (Diffuse Intrinsic Pontine Glioma). Within a period of a week D.I.P.G. transformed Isabella from our normal sixteen-year-old daughter, to a girl who aspirated when drinking, bumped into walls when walking, slurred when speaking, and who could not urinate when her bladder was full. She would spend 11 days in the hospital trying to digest the fact that her biology and algebra tests no longer mattered, and that she would be lucky to see her seventeenth birthday.  Instead of dissecting her fetal pig, she herself, would undergo brain surgery for a biopsy which ultimately failed to produce enough of a sample to glean any information.  She would leave the hospital unable to walk on her own, unable to feed herself, unable to speak clearly, unable to swallow, unable to write, or even hold a utensil. The girl who danced at the banquet just weeks before, could never have fathomed this would be her life.

This happened in 2019. We live in one of the most medically advanced countries in the world.  We were at the best hospital in our state. Despite all of this we were given very little with which to fight this battle. This needs to change!

Let's imagine again.  Imagine now you are a parent.  You have just been told your child has terminal brain cancer and they will die.  It's not if, but when, and the "when" is statistically in less than a year.  You frantically scour the internet searching in vain for someone who has beat this. You learn radiation is the only treatment proven to combat this beast, and even this is only temporary. The beast will come back and finish what it started.  The doctors make sure you understand this.  They emphatically advise you to go home and make memories.  You become an expert in clinical trials grasping for any speck of hope. You are racing against the clock and you are desperately searching for anything to give your child more time.  This nightmare I've asked you to imagine is life for the parent of a child with D.I.P.G. 

We did all we could to fight. Isabella responded very well to radiation and she did a clinical trial with ONC-201. Her tumor shrank from July-December 2019. Her D.I.P.G. symptoms were minimal to none during this time. Unfortunately, in September 2019 she developed steroid-induced psychosis and mania.  She spent another week in the hospital and several months trying to recover her normal mental state.  This reaction was not unheard of across the country, but was a first for our hospital, and her reaction and symptoms were quite severe. This was an added layer to the nightmare we were already living. By the end of February 2019, she was finally weaned off all of the psych meds. She had no D.I.P.G. symptoms, was back to normal mentally,  and we were hopeful she might actually live long enough for a new trial we were interested in. Maybe she would even become that first child to beat the odds! Reality came crashing into our hearts when her MRI showed an enhancement.  Still, we hoped. The doctors were not calling it progression yet, and she had no symptoms. 

In March a few of her symptoms returned. In April we inquired about another round of radiation. It was a possibility, but we were reminded it would be a very temporary band aid. Many symptoms had returned at this point. She dreaded the idea of the daily trips, in addition to the idea of having to go through the emotional pain of losing all of her abilities for a third time, assuming it even worked.  All of this, in addition to her unique situation of not being able to use the typical dose of steroids with radiation, led to her/our decision not to go through another round of radiation.  Instead, we tried Avastin. We will never know if it would have helped her, because she died on April 28, 2020, before it had a chance to take full effect.

Isabella was an inspiration to us all.  Her faith was strong, and she carried her cross with humble surrender and joy. She taught us what it means to trust in His plan for our lives. She was deeply loved and is deeply missed.  Isabella fought an unfair battle.  Every child with D.I.P.G. fights an unfair battle with an artillery that has advanced very little in decades. These kids deserve more.  Families deserve more. We all deserve more. We deserve a cure.  We deserve a chance. Please consider donating.  

Thank you for choosing to donate to The Cure Starts Now Foundation. 100% of this donation, after credit card processing fees, goes directly towards research to find the homerun cure for cancer starting with pediatric brain cancer research.

If you would like to make a donation by mail please send a check to:  The Cure Starts Now Foundation; 10280 Chester Road; Cincinnati, OH 45215 and put the child's name in the memo.

The family receives notification of all donations made to this tribute fund automatically.