September: the Golden Month

You may have seen a lot of gold ribbons on our profile pics and that is because September is Childhood Cancer Awareness Month. . I’m never really sure whether to consider myself a cancer mom. I’m a brain tumor mom. In my mind, there is a difference, but in the brain tumor world, that concept can be debated.

When my son Alex was diagnosed with a benign brain tumor, I thought they would just take the sucker out and on we went. No chemo, no radiation, just a blip on the radar. The key word: benign. Not cancer.

But a the waterfall of issues emerged. Destroyed pituitary gland, inability to manage fluid balance in the body, hypothalamic damage that can result in insatiable hunger and interminable weight gain, temperature dysregulation, narcolepsy, chronic fatigue, adrenal insufficiency which can be fatal in emergency situations, behavior issues and the list when on. 

But still, anytime the word cancer, or similar terms like oncology, came up, I went into a tailspin. “It’s not cancer, right?” I would repeatedly ask the nurses or doctors. 

A nurse in oncology at Johns Hopkins told me “we consider all brain tumors to be cancer.” 

When it comes to the brain and the delicate and intricate structures, brain tumors seem to sit outside the standard explanations of cancer and not-cancer. The definition of brain cancer is the ability for those cells to invade other structures. Many benign brain tumors, however, can regrow in place and still invade other structures in the brain. This is a gray area in the brain tumor world.

Why does this gray area matter? (lot’s of brain puns)

First of all, just like their malignant counterparts, benign tumors can be deadly. And patients diagnosed with these tumors tend to feel that the general view is that benign means fine. Which is a tough pill to swallow when you are facing a brain tumor battle.

Dr. Harvey Cushing, the father of modern neurosurgery once termed craniopharyngioma, a benign brain tumor that largely affects children, “the most formidable in intracranial tumors.”

Collectively, brain tumors have exceeded leukemia in the cause of death in children ages 0-19, and more research funding is desperately needed. Pediatric brain tumors are different in presentation than adult tumors, requiring independent research initiatives. A cure is certainly a goal, but a far more reachable goal is finding better treatment options that don’t cause the long term side effects that kids that survive brain tumors face.

Each year, steps are made towards that goal. Our hope is with the recent passing of the Childhood Cancer STAR Act, we will start seeing more pediatric brain tumor research opportunities

Thank you for your ongoing support and please take time as we end out this September to remember our survivors and angels that have battled all forms of cancer. 

Silas Johnson Named Next Recipient of a Handheld Blood Analyzer

Silas Johnson Named Next Recipient of a Handheld Blood Analyzer

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.

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Blessings

Blessings

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.

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Survivor Spotlight: Daniel Levy

Survivor Spotlight: Daniel Levy

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. 

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Merry Christmas, Molly

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.

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Mikey O'Connell, Virginia Fifth Grader, First to Receive Medical Device from RAWF

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.

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Survivors of a Rare Brain Tumor and Their Families Meet Up in Ocean City

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.

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