Congratulations and Cheers for Dr. Souweidane: Phase 1 Trial Findings Published in Lancet Oncology

Today, Dr. Souweidane published the Phase 1 findings from his first-ever dose escalation study using convection-enhanced delivery (CED) in patients with diffuse intrinsic pontine glioma (DIPG.) You can read about his study and learn more about DIPG too in the article published on the Children's Brain Tumor Project's website here.

We couldn't be more proud of Dr. Souweidane. The results were published in The Lancet Oncology, one of the world's oldest, most prestigious, and best known general medical journals.

To best explain why this is such a meaningful outcome for us, let's rewind six years.

It's 2012. Our third child has been diagnosed with a fatal brain tumor. We have completed a round of “palliative” radiation therapy. Now, we face so many decisions we never dreamed we would encounter; do we pursue a clinical trial? Do we bring her home to die? What choice do we make?

We chose a clinical trial, one that made sense anatomically and medically and medicinally. We consider the questions “all parents should consider before enrolling their child in a clinical trial.” And I can honestly tell you now, six years later, we were confronted with negative comments and accusations of signing our child up “to be a lab rat.” (For the record, we signed her up hoping for a miracle that made sense, not to be a lab rat.) And what we found shocked us.

She was not a lab rat to those running the study. She was Caitlin Downing, the little girl that showed up in a leopard print skirt and matching shirt with bright pink furry boots and a fluffy Hello Kitty vest. (They remembered this, this isn’t my recollection.) They remembered how she answered their questions, and the personality she quietly shared upon that first meeting. Then, I believe, they came to adore her the way we did.

They brought small gifts and her favorite candy and remembered what her favorite dinner was. NO, she wasn’t a lab rat.She didn’t get that miracle, but she did participate in helping to further research that is on its way to finding that miracle for children to come.

I don’t regret a single decision we made; in fact, I am grateful for the research, the science, and most of all, I am grateful for Caitlin’s Dr Mark. He told me recently that he isn’t finished yet. I’m grateful for his continued effort and energy. I am most grateful for his caring and concern and kindness. You can read an interview with him where he shares his feelings about reaching this milestone here.

Now, it's six years later, 2018 and we find ourselves bursting with pride that our sweet Caitlin was the first participant in an important study. A study deemed important by the Lancet Oncology.

Tonight, this journal published important research on the CED trial Dr Mark Souweidane has bravely put forth as a future option for DIPG treatment. It is an emotional, pride filled night, as we remember the steps we took, and the important findings that have come in its wake.

Thank you Dr Souweidane, for “not being finished yet.” Cant wait to see where we are in six more years!

All our best,

Denise Downing

Cheering for Caitlin