ependymoma

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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.

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?

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.

“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

.

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.

Find the pause

I loved the oncology floor at CHOP. So much so, I secretly wish I could recapture my time spent holed up in our spacious and sterile room (minus a sick child, of course).

I thought maybe my love was some sort of Stockholm syndrome—we had been captives of a brain tumor for weeks. We were held against our will. We moved to the rooms we were told to move to. We ate what was given to us. We waited with bated breath for news, visits from therapists, procedures and whatever else the hospital had in store for us. We were kidnapped.

I used to believe that my love of this time stemmed from a sort of adoration I developed with our kidnapper. CHOP and all its team provided us with life for our daughter: therefore, I adored CHOP and adored being its captive.

But, really, I never, ever want to be back on the pediatric oncology floor.

When we were trapped at CHOP, something remarkable happened. The only thing that mattered was the health of Lily. Everything else dropped away. There was no time to worry about taking out the trash, preparing reports for conference calls, doing laundry or anything remotely “normal.” All that normal stuff, all that noise, went away. We were forced to hit the pause button and for those 4 weeks at CHOP, we were still.

It was the first time that anyone ever gave me permission to care about just one thing-my child. From the moment I was pregnant with Lily, I lived distracted from Lily. I was pregnant, but I had to work; I had to ensure everyone knew I was committed to my career. At home, I planned the nursery, searched for baby names and distracted myself with knitting projects. I never just focused on Lily and only Lily. When my sweet girl was diagnosed with a brain tumor, finally, I felt what mattered—finally I understood and so did everyone else. My focus was singular—heal Lily.

At CHOP, I remember waking up each day, fearful of what horrible thing might happen, but feeling focused and still. I had no where to go. Mike was asleep in a chair; Lily in her hospital crib. I remember spending afternoons on a gym mat in our oncology room, working with Lily and my “Itsy Bitsy Yoga” book. It was Mike’s idea. We taught Lily how to sit up again. Lily taught us how to stand tall and face everything—no matter how evil or dark. We taught Lily how to conquer her vertigo—a side effect of having your cerebellum severed. Lily taught us how to untie our hearts and open up fully to God and to faith.

Those were dark days. Those were also my best days—days that I will forever remember with fondness. That pause, that quiet focus—that is where God is waiting for us to listen.

Pauses are remarkable. Pauses are still, but not stagnant. They are quiet, but not silent. Psalm 46 says: “Be still and know that I am God.” Thich Nhat Hanh writes, “When we are still, looking deeply, and touching the source of our true wisdom, we touch the living Buddha and the living Christ in ourselves and in each person we meet.”


Lesson 3 (or 3 million)from the mom of a brain tumor survivor: find the pauses each and every day. Take 1 minute, be still and ask: so, what’s next? And then listen.






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

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
I won!, a story by my hero

Lily, my nearly 8-year-old, was diagnosed with a brain tumor when she was just 14-months old. It was a dark and devastating time. We had no idea if she would survive and see her second birthday. And we feared if she did survive, she would be left permanently and catastrophically disabled. 
I thought she’d never walk or talk. But then she did it all.
She beat cancer. Lily is my hero. 
Lily is still working hard on her reading and her writing. There are days when we all get discouraged. There are days when I simply want to throw in the towel and call it day. There are days when I just want to rip up her school work and send back a note to her teachers reading: “She is just a kid and she beat cancer. How could you possibly want more out of her?”
But Lily is a hero. She is always willing to give more, even when I am done. 
When asked to write about something she won, Lily wrote this—typed it on her iPad with some help. The words are all Lily. And the win, that is all her too. 

I won!
By Lily

For Alex’s Lemonade stand I won a medal because I am a cancer hero. This is because I am selling lemonade for Alex’s Lemonade Stand. I think it raises a lot of money for cancer research. I am a cancer hero because I had ependymoma, which is a kind of cancer. I am healthy now because I got the medicine I needed.