Peter, age 9, Receives a Handheld Blood Analyzer for Management of Arginine Vasopressin Deficiency (AVP-D)
At the Raymond A. Wood Foundation, our mission is to support and empower survivors of hypothalamic-pituitary brain tumors. One of the critical challenges many of these survivors face is managing arginine vasopressin deficiency (AVP-D) , a condition that can lead to serious health complications if not properly monitored. Today, we’re thrilled to share the story of our latest recipient of a handheld blood analyzer, a game-changer in AVP-D deficiency management.
Meet Peter
Peter is a brave 9-year-old who has been navigating the complexities of AVP-D with remarkable resilience. Diagnosed with a germinoma on November 20, 2023, Peter has faced numerous medical challenges. AVP deficiency, also known as diabetes insipidus, requires careful monitoring of blood sodium levels to prevent life-threatening imbalances.
During his extended stay in the ICU, Peter brought joy to everyone around him. Surrounded almost exclusively by adults for over seven months, he started having dance parties in the hallways. His infectious spirit soon had all the nurses joining in, and Peter became a ray of light in everyone’s day. His positivity and energy are truly inspiring.
One of the biggest challenges in Peter’s brain tumor journey has been overcoming the nursing staff’s initial lack of knowledge about AVP-D and implementing a bedside safety protocol for his treatment. With perseverance and determination, Peter’s family worked closely with the medical team to ensure he received the best care possible.
The Impact of the Handheld Blood Analyzer
For Peter, the handheld blood analyzer is more than just a device—it’s a lifeline. This innovative tool allows for real-time monitoring of blood sodium levels, providing immediate feedback and enabling timely interventions. This not only enhances Peter’s quality of life but also significantly reduces the risk of severe complications like hypo/hypernatremia.
With the handheld blood analyzer, Peter’s family can now manage his condition with greater independence. The ability to quickly and accurately measure blood sodium levels at home means fewer hospital visits and more control over his health. This empowerment is at the heart of our mission, and we are grateful that our work will lead to a positive impact it has on Peter’s life.
“We are hoping it will help normalize his life again. How can we ever begin to thank your foundation?” said Peter’s mom, Jordan. “The information that Amy [Wood] gave us about her story helped establish the nursing protocol that saved our son from a doomed stay.”
The Importance of Community Support
This achievement is a testament to the incredible support from our community of donors, volunteers, and advocates. Your contributions make it possible for us to provide these essential tools to those in need. Together, we are making a tangible difference in the lives of brain tumor survivors and their families.
We remain committed to expanding our reach and helping more individuals manage AVP deficiency particularly with the development of an at-home sodium meter along with finding solutions to the other challenges associated with hypothalamic-pituitary brain tumors.
We invite you to join us in our mission. Whether through donations, volunteering, or spreading awareness, every effort counts. Find out how you can get involved or make a gift. Together, we can continue to empower survivors and improve their quality of life.
