Delivering Hope Nicole Pierson The ripple effect of

Delivering Hope Nicole Pierson

The ripple effect of Hope

Meet Gavin, age 5 Active and healthy. Born full term and never had health issues. Loved learning, science, animals and dinosaurs

Diagnosis Sudden eye changes Hospital visit to Children’s MN CT scan revealed large mass which required Emergency brain surgery

Treatment plan Emergency surgery Standard treatment for pediatric brain tumors Chemotherapy, surgery, radiation

Chemotherapy Three rounds of chemotherapy Neurological changes prompted tests and scans MRI revealed growth of tumor. Doubled in size in 8 weeks, during chemotherapy.

New plan Summer 2012, three craniotomies to stay ahead of the accelerated growth. Growing Teratoma Syndrome, a very rare phenomenon where a teratoma treated with chemotherapy begins to grow rapidly. Began research, possible targeted therapy used in adult trials.

Complications and surgery Waiting for a treatment, many issues arising from pressure in Gavin’s brain. Possibility of trial, but maybe “next year” More growth in December, forcing us to find a way to keep him alive.

Doing the impossible Further treatment may do more harm than good, and we were hitting a wall. Should we stop treatment and enter hospice? When facing a terminal disease, how do you convince yourself of the impossible? You go beyond what is known and find something inside yourself to just keep putting one foot in front of the other. We chose to fight and scheduled a fifth craniotomy.

Compassionate use Gavin’s surgery lasted 20 hours. His neurosurgeon was more aggressive. There were consequences. Gavin suffered visual deficits, control of bodily functions, inability to stay awake, weak and required wheel chair. Are we too late? Fear can stop your plan moving forward, freeze your motions. Hope keeps you going. Hope pushed Gavin’s doctors to do the impossible. To keep fighting with us and explore new options that had never been tried before.

Bottle of Hope: These bottles kept the medicine that no child in the world had tried before Gavin. They gave him a chance to live.

Time to recover Gavin began taking Palbociclib and within weeks he began to show signs of improvement. He began talking more, staying awake, and getting stronger, and told us he felt like a normal kid again. An MRI scan showed stable tumor for the first time in a year of fighting.

Hope turned into a cure Gavin’s neurosurgeon found LITT (Laser Interstitial Thermal Therapy). Gavin was the first person to use LITT for a teratoma, and it worked to ablate the tumor. For three years, he had treatments every 4 -6 months, has been in remission since June 2016.

Gavin today

In closing Thank you for being in the industry that supplies hope to patients. Our family is grateful for the work you do that gave my son the chance to grow up. Please remember Gavin’s story, and use it when you need a little hope, professionally or personally. Special thanks to Olwyn Spiers and Bev Nicol for inviting and supporting all of the details allowing me to be in Vienna. Choose Hope