Lillian Knowlton, from Chesapeake, Virginia, was diagnosed earlier this year with a craniopharyngioma brain tumor. We met Lillian’s parents at the Pituitary Brain Tumor Day at Children’s Hospital of Philadelphia this past March while she was inpatient and post-op from a tumor resection. Recently, Jennifer, Lillian’s mother, reach out to us because of the struggle of getting her sodium under control. She said Lillian was basically confined to the house because of the constant monitoring.

Isaac, age 7, from Eugene, OR, was diagnosed with a craniopharyngioma brain tumor just this past December. The after effects of tumor treatment included difficult-to-manage diabetes insipidus with fluctuating sodium levels and an unreliable thirst mechanism due to hypothalamic damage.

For those out there that have followed our story since Alex’s diagnosis, you might have heard me say over and over again that there are blessings in this journey. Sometimes, on the hard days, it is a reminder to myself to get through that day, like an affirmation, and sometimes, when I say it, it’s a a joyful expression. Yesterday, there were many moments of joy.

In the fall of 2013, he was 8 years old and had just finished his first season of tackle football; he loved sports of all kinds, loved building with Legos, loved history and science. He was what you might refer to as an “old soul.”

Hypothalamic Obesity (HO) can be a devastating co-morbidity of brain tumors around the pituitary/hypothalamic axis. The condition can mean uncontrollable hunger and weight gain in patients due to damage to the hypothalamus which acts as the control center for our hunger and thirst. When this mechanism is damaged, the body can be tricked into starvation mode, making the patient constantly hungry and storing calories as fat.

Two-year-old Anastasia Rafter from Niagara Falls, NY, was diagnosed with an aggressive tumor in her optic chiasm on December 20th, 2016 at 8 months old. The tumor caused her to go completely blind. She failed all standard chemotherapy and underwent surgery in October 2017 where 50% of her tumor was removed but the surgery destroyed her pituitary gland.

On July 21st, I sat in the Emergency Room at Yale and had a doctor tell me my son had a large mass at the base of his brain. As a parent, nothing can prepare you for this news. My sweet Teddy underwent a ten hour surgery on July 23rd to remove a large amount of the tumor.

This summer, Raymond A. Wood Foundation provided Henry Cloninger, a 6-year-old from Godfrey, IL, a blood analyzer to help his family manage his medical care at home.

Silas Johnson, age 8, lives with his mom Chelsea, dad Casey and 1.5 year-old brother Ackley in Cody, Wyoming. Silas was diagnosed with a craniopharyngioma brain tumor in January of 2017 and, as a result, suffers from diabetes insipidus (DI) a condition where, due to injury, the pituitary gland does not excrete the anti-diuretic hormone (ADH0, thus making blood sodium levels difficult to manage.

Competitive sports have always been a major part of my life. I was at swim practice one morning in the summer of 2014, I was 14 years old. I had experienced episodes of extreme euphoria about twice a day for several months, I had later found out those episodes were aura seizures. But this particular morning the aura seizure was extremely intense. Last thing I remember is standing in the swim team locker room. I had fallen and hit my head on a concrete bench, as a result suffered an extremely severe concussion. after being rushed to the hospital I had a brain scan and it was discovered I had a brain tumor in my front right temporal lobe. 

Three years ago today life changed for my son, Alex. In a matter of 24 hours, his life journey took a major turn from being a typical 4-year-old boy doing typical 4-year old boy things to a child that would face of lifetime of medical, emotional and physical challenges. We woke up this very morning three years ago the same as we always do, business as usual, but with one little telltale sign that landed him in an MRI hours later and emergency brain surgery the next day.

As I march into Awareness Month this May as a mother of a brain tumor survivor and an advocate for all pediatric survivors and their parent-caregivers, I have come to the realization that I am simply not feeling it this year. I am at a low in this journey. I will refer to it as battle weary.

In just a few short weeks, Sydni Gajewski of Pottstown, PA, will be graduating college. And, while graduating college is a an amazing achievement for any person, for Sydni, this accomplishment is even more sweet given the challenges she faces daily from a diagnosis and removal of a brain tumor at age 6.

Meet Molly Brenner, 19, from Kansas, who will be receiving a handheld blood analyzer to help manage her diabetes insipidus making her our third recipient. Molly was diagnosed with a craniopharyngioma brain tumor in 2012 on her at age 14 on her fourth day of high school. Her tumor was removed via a craniotomy at Childrens Mercy Hospital in Kansas City. Molly suffers from diabetes insipidus (DI), hypothalamic obesity (HO), adrenal insufficiency (AI) and is visually impaired. Recently, she was diagnosed with pulmonary vasculitis. Unfortunately, the parts of the brain impacted by this tumor treatment control the overall health of the rest of the body which can leave patients like Molly susceptible to other diseases.

Sterling, VA — Countryside Elementary School fifth grader Michael “Mikey” O’Connell was selected by the Raymond A. Wood Foundation (RAWF) to receive a handheld blood analyzer, a hospital-grade device that is critical to managing a chronic condition called diabetes insipidus (DI). O’Connell suffers from this condition as a result of removal of a craniopharyngioma, which is a benign brain tumor that affects the hypothalamus and pituitary gland.

Ocean City, MD — Survivors of craniopharyngioma, a rare and complex benign brain tumor, and their families joined together for the inaugural East Coast Cranio Survivors Picnic at Northside Park in Ocean City on Saturday. The group also included spouses, parents, siblings and grandparents, who provide support to each other on Facebook as part of a group page specific to the tumor. The picnic was organized in part by the Raymond A. Wood Foundation (RAWF), whose mission is to provide quality-of-life support for survivors of childhood brain tumors and their families.

Washington, D.C. — Amy Wood, director of the Raymond A. Wood Foundation, joined the Maryland contingency to “Head to the Hill” Tuesday with the National Brain Tumor Society to advocate for legislation to fund brain tumor research. Wood is mother to Alex, a 6-year-old brain tumor survivor and kindergartner at Ocean City Elementary School.