ependymoma

An Ependymoma is a glial tumour which originate from the ependymal cells that line the ventricles of the brain, or the central canal of the spinal cord. These tumours typically account for 10% of all paediatric brain tumours, and 33% of brain tumours in the under 3 age category - with the mean age of diagnosis being 6 years old. The symptoms of ependymoma tend to be associated with raised intracranial pressure, and can present as headaches, nausea and vomiting, vision or balance disturbances or personality changes. Treatment and prognosis of these tumours depends on the grade and location.

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Haemosiderin cap sign - a spinal tumour appearance where a cap of hypointense haemosiderin is seen on T2 weighed imaging above and / or below the tumour due to previous haemorrhage. It is most often associated with spinal ependymomas, being seen in 20-33% of these cases.  The sign however may also be seen in hemangioblastomas and paragangliomas and therefore while it is highly suggestive of ependymoma it is not pathognomonic. 

See our YouTube video tutorial on ‘Spinal Ependymoma' here.

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Help us raise awareness!

This is Sammi. She’s nearly 17 years of age and has stage 3 Ependymoma, a cancer of the brain and spine. This page is to raise awareness for this unique cancer. Her facebook page is here: …

 This is my best friend, Sammi. She has stage 3 ependymoma, which is a brain and spinal cord cancer. Tumblr, I come to you in desperation. You’ve gotten fluffy chickens. Can you help a girl get awareness?

May is Brain Cancer Awareness Month....Educate Yourself and Be Aware!!

Facts on Ependymoma (Brain Tumor)

  • An ependymoma is a rare type of glial tumor; glial cells are the supportive cells of the brain
  • An ependymoma is a rare type of primary brain or spinal cord tumor
  • Primary brain and spinal cord tumors are those that start in the central nervous system (CNS)
  • Can be found in children and adults
  • More common in children than adults
  • The third most common pediatric brain tumor
  • Over 90 percent occur in the brain
  • Ependymoma tumors account for three to six percent of CNS tumors
Sawyer the Destroyer

So I know I don’t have a ton of followers or anything but…

My boyfriend’s son, Sawyer, is 6 years old.  When he was 4, he ended up with a cancerous brain tumor known as Ependymoma.  After undergoing brain surgery and radiation, he was in remission.  The cancer returned after two years, in early 2015.  My boyfriend put Sawyer into a vaccine trial that he qualified for.

Unfortunately, the vaccine did not work.  Sawyer’s tumor has come back and is now more aggressive.  Treatment options at this point are limited. My boyfriend’s only real choice is to try to get Sawyer into yet another medical trial that could help.  Unfortunately we are in NC and the trial is in Dallas TX.

I know the tumblr community has accomplished amazing things so I’m sharing this with you in the hopes that Sawyer’s story will reach more people than it could if I was doing this alone.

Below I am attaching the link for Jeb & Sawyer’s YouCaring link.  You can read more about Sawyer’s journey there, as well as donate if you can.  Jeb needs help covering traveling expenses to get Sawyer to Dallas and back every 3 weeks for this trial.  Any donation even if it is simply a dollar, would help so much.  Please share this wherever you can so that we can give hope to this beautiful family and to this incredible little boy.

https://www.youcaring.com/sawyer-powell-432635

“Jünglinge tummelten Pferde, liefen, die Hand am Halfter, neben ihrem wiehernden, kopfwerfenden Trabe her, zerrten die Bockenden an langem Zügel oder trieben sie, sattellos reitend, mit bloßen Fersen die Flanken der Gäule schlagend, ins Meer hinein, wobei die Muskeln ihrer Rücken unter der goldbraunen Haut in der Sonne spielten und die Rufe, die sie tauschten oder an ihre Tiere richteten, aus irgend einem Grunde bezaubernd klangen.” (Thomas Mann, Der Zauberberg)

“Youths were at work with horses, running hand on halter alongside their whinnying, head-tossing charges; pulling the refractory ones on a long rein, or else, seated bareback, striking the flanks of their mounts with naked heels, to drive them into the sea. The muscles of the riders’ backs played beneath the sun-bronzed skin, and their voices were enchanting beyond words as they shouted to each other or to their steeds." (Thomas Mann, The Magic Mountain)

(Bild: Sebastian Monroe, Ependymoma-Tumor-Operation an der Wirbelsäule, durch Medikamenten-Ototoxizität taub. Hilferuf / Fundraiser)

Sebastian

(Photo taken ca. in 2011)

“Former model. Now left w/o a back and no ears. I need help putting my life back together again. From what i had before VS what i have now… ”

(source: giveforward.com: http://www.giveforward.com/fundraiser/lcx1/pleasehelp)

Born in Fort Rucker, Alabama as a Navy Brat. Sebastian was born with a disease called Gastroenteritis and other severe infection spreading throughout his colon. (Gastroenteritis kills 8 million people per year and is a leading cause of death among infants and children under 5) He survived through a Colorectal Surgery. Has had 4 operations for removal of the small intestines. (The narrow, winding, upper part of the intestine where digestion is completed and nutrients are absorbed by the blood were removed) At age 8, he was diagnosed with hearing impairment and speech disorders. In November of 2007 an Ependymoma (tumor) was discovered in his lumbar spine extending from conus medullaris toward the upper part of the spinal cord growing against the nerves inside the spinal canal. Surgery took place on Valentines day of Feburary 14, 2008. The Neurosurgeon indicated to Sebastian after the surgery that he came very close to being paralyzed. He managed to walk again after completing 6 months of radiation and physical therapy. The total cost of surgery was little over quarter of million dollars in USD ($250,000). Sebastian became severely and profoundly deaf due to a degenerative condition that was caused by a drug interaction called Ototoxicity after hospitalization. (Ototoxic Medications includes antibiotics, chemotherapy and anti-inflammatory type drugs. Ototoxicity affects nearly 120,000 people in the U.S. each year, most of whom are either older persons receiving treatment for cancer, or children undergoing treatment for bacterial sepsis or cancer but save lives at the expense of hearing)

Running Away From Home

Since 2009, Sebastian has been unstable and without a fixed address.

(source: http://www.facebook.com/pages/Sebastian-Monroe/191956734187125?sk=info)

Thomas

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Ependymoma

An Ependymoma is a type of brain tumor that originates from a brain support cell, called an ependymal cell. Ependymal cells line the brain and spinal cord cavities (known as ventricles). These are of importance, because they produce and store the cerebrospinal fluid (CSF). The CSF protects the brain, reduces pressure, disposes waste, and transports hormones.

Ependymoma type tumors make up for 6% of the total number of pediatric brain tumors. 90% of pediatric Ependymomas are found in the posterior fossa region of the brain.

Learn more

Excerpt: Memory, Selvin

“I…I have um…brain tumors…. listen, you don’t have to stay with me okay?” Selvin felt awful that his girlfriend of one month had to find out but he couldn’t do anything; he had surgery all of a sudden and had no excuses to hide that harsh reality from me. Before I said anything, I looked back to when we first met. Selvin was a tall, handsome, and athletic young man of 17, who had an overbite of a smile that enhanced the precisely matched outfits he wore. With the addition of his charisma and jokes, the scar that spanned half the top of his shaved head meant something of little importance to me. The memory of that Selvin who accepted me unconditionally gave me no doubts to say “I’m staying with you. Don’t you dare think I’m staying with you out of pity. I just…think you’re pretty cool because you’re the only guy who has a good sense of fashion.” And we giggled over the phone that evening in October, the day he was discharged.

Surviving.

After Lily’s oncology appointments, she comes home and plays doctor.


Her version of doctor includes the typical triage: heart, blood pressure and temperature. It also includes other things: like IVs, MRIs, surgeries, shunt revisions and extensive outpatient physical therapy for her patients, who are typically her sister, our dog and a variety of dolls and stuffed lovies.

Lily is a survivor. And while to some, surviving may mean leaving all that oncology stuff behind, Lily carries it with her. She carries it in her play. She carries it in her narrative–the very stories she tells her friends. She carries in each step–sometimes shaky and off balance. We all carry it in our memories.

None of us will ever forget cancer. No matter if we are five years out or 50 years out. We cannot forget. It is not a state of wallowing in misery nor is it living in the past. It is living in the very moment.

Childhood cancer is right now. If it is not in my daughter’s brain; it is in someone else’s. It is in the blood of the 7-year-old I saw at CHOP today and in the bones of 16-year-old who is now confined to a wheelchair. It is in the kidney of the 13-year-old, who just wants to be playing soccer instead of waiting to see an oncologist.  It is in the brains of children that whose stories I read everyday in my EpendyParents group. Cancer may have physically left our family–Lily kicked it to the curb–but it is still out there wreaking havoc and stealing childhoods.


For our family, surviving means carrying cancer with us. Surviving means remembering and fighting everyday to make sure that someday, cancer is just a memory for the other children battling this evil, nasty disease. Surviving means working to build awareness, raise money for research and fighting everyday for cures, therapies and better treatments for other children.

If we were to drop our cancer experience now–everything we battled; everything Lily fought with every cell in her tiny little body, would have just been a rough time. Cancer defined the mother I am today–it set the parameters; it changed our family. We cannot ignore it. Lily’s battle for life, began with fighting for her own. Now the battle continues–and as a family we will battle for the life of other children.

Surviving is not the end of the fight;  but the start of a new fight–a fight waged along side other families against an insidious, sadistic enemy.

Ten kids, a day, die from cancer.

And we cannot abide this carnage.  The fight is not over; not by a long shot.

So for now, Lily plays doctor. Chloe plays patient. I write and yell and speak. Mike raises money. And together, we survive and we fight for those on the same path to survival; just like those who came before us and just like those after us.

Someday, ten kids, a day, will live in spite of cancer.

I have a routine.
I wake up at 6 in the morning.
I get dressed.
I get my son up.
He’s two.
I change his diaper.
I get him dressed.
We drive to the hospital.
I check him in.
We sit in a little room and wait.
Then, I watch as they put him to sleep.
I leave the room alone.
I go up the elevator to the coffee kiosk.
I get a large Rocky Road expresso.
I come back down and wait.
They call his name.
I go in the back and wait for him to wake up.
We leave.
This is my routine.
Every morning.
For 7 weeks.
I am a mother of a child with cancer.
He’s is receiving radiation treatments.

Meet the proton radiation machine I receive my treatment on. It was a little intimidating but I’ve gotten used to it. On the black table they put my body mold and mask on where I lay down. They can then control the table with a remote where they move me into the machine. The arm attaches to that nozzle in the center of the machine and lifts the nozzle above my back. It dispenses the proton treatment. This beauty is going to get my spinal cord all cleaned up so I can go home and live my new normal! #protontherapy #ependymoma #cancer (at University Of Florida Proton Therapy Institute)