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.
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.
